Halloween Costume

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Here's Matthew in his Halloween costume

Click here for the video

Matthew Jabbering

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Matthew is Jabbering a lot these days. Here's a short video of him "talking".

Click here for the video

Sorry it's been so long since we posted (he keeps us surprisingly busy). After his last pulmonary appointment about a month ago, the doctor told us we should start taking him off the oxygen for 20-30 minutes at a time while monitoring his O2 sats. We're supposed to put him back on if he start dipping below 95%. Jenn promptly took him off for 1.5 hours (Jenn never did like following directions :-) ). He did great though, so we've been taking him off more and more each day. We always have him on oxygen at night, and still generally put him back on when he's eating or napping. The longest he's been off straight was 7 hours, and that included 2 feedings and a 2 hour nap.

Matthew's also figured out crawling. He just sort of got it all of the sudden. One day you could put him on the floor and know he'd be there when you got back, the next he could scoot all over the place. It was great timing on the oxygen since he tends to get caught up in the hose when he tries to crawl with it on. He's also getting great at shuffling along the edge of the couches while standing. I guess we can't put off baby-proofing the house any longer.

We've been big slackers about getting new pictures up on the site. We'll get some up soon though, I promise.

NICU Reunion

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We went to the Valley Medical Center NICU Reunion today. It was great to see a number of the babies that were in the NICU with us as well as see all of the doctors and nurses who took such great care of Matthew. Everybody loved seeing Matthew as well.

Doing Great!

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Sorry it has taken us so long to post a new update, but we have been really busy with the little guy and too exhausted at night to post something.

Anyway, Matthew is doing great...thanks to all your prayers! Starting from head to toe here's the update:

Eyes: Matthew's Nystagmus seems to be less noticeable day after day. If he lays on his back and tries to focus, his eyes will still occassionally bounce up and down, but not like it used to. The neurologist thinks that there may be some swelling in the area of the brain that works with the eyes and that as his head changes shape, hopefully it will help with the swelling and possibly have the Nystagmus go away completely. They say his head is a little bit on the large side but it's not so out of proportion with his height and weight that they aren't too concerned about it for now, but do need to watch it to make sure he doesn't develop hydrocephalus (increased fluid in the brain). The Nystagmus is officially called upward Nystagmus. Due to his prematurity and eye surgeries, he has developed a downward gaze. This is where he tends to look downward on a regular basis. As he is trying to focus more midline, his eyes will begin to bounce. Currently, his downward gaze seems to be lessening along with the Nystagmus. PRAISE GOD!!

Another wonderful thing with his eyes is that the doctor who has performed all the eye surgeries looked at his eyes the other day and said that his eyes, "look shockingly good". The retina is still flat and attached in the center with some peripheral dragging on his bad eye (the right one). This means that he should have really good vision in the center of his eye, but will have problems with the peripheral vision. His left eye, which is considered to be the good eye, looks really good too. Unfortunately, Matthew will still be prone to retinal detachment even as an adult, but things are looking really really good right now and we will take what we can get.

Matthew was also fitted for a contact lens for his right eye and we have been putting it on his eye and taking it off every other day (per doctor's orders). This is a real challenge at times, but once the contact lens is on, it is really obvious that he looks around so much more than when it is not on. His strabismus (turning inward of the eye) also decreases when his contact lens is on. So it's obvious that it's making a difference for him. Putting the contact lens on his eye is a pain in the rear for now, but we know it will be so important for him down the road.

Lungs: Matthew is still on oxygen and it looks like he will be until his first birthday in June. At that time he will take another pulmonary function test to determine if he can come off oxygen or if he will remain on it longer. At this point, he is on 0.2 Liters of oxygen (which is a pretty low flow) and his oxygen saturation level is between 97-99% depending on how active he is. When he was measured on room air while he was awake his oxygen saturation levels ranged from 91-93%. When he was asleep, he dropped to 88%. The saturation levels they are looking for which are acceptable are 96-97% or higher. At the time the test was performed, Matthew had a little bit of nasal congestion so I am sure he would have done better if he wasn't congested. They also said that he would be fine at 0.1 Liter of oxygen but they are being conservative and giving him some flexibility in the liter flow. Since it is obvious he is still retracting when he breathes, he could potentially burn a lot of calories if he was off the oxygen right now too. So they would much rather have him spend his energy on growing instead of breathing, and that is another reason to leave him on the oxygen for now.

Liver and intestines: We have officially been cleared from having to see the GI specialist. Matthew's liver function tests have been normal for a couple of months now and we no longer have to see them for liver function problems. We were seeing them for awhile because Matthew had some constipation after his surgeries and MRI in January. Since the anesthesia slowed down his body systems, it really slowed down his intestines, causing him to get constipated. Once they told us the tricks to use to get him moving again and pooping on a regular basis (which worked), they have now officially cleared us from having to see them for his constipation. The only concern they have is with the possible stricture that he may or may not have. If he doesn't stool at all and starts to vomit once we introduce solids then he may have a stricture. At which point we would probably have to start seeing them again. Fortunately, we have started him on rice cereal and started him on stage 1 of solid foods of vegetables and fruits and things still seem to be moving along.

Weight gain: Matthew is still gaining weight on a regular basis but it is starting to slow down a bit. He is currently weighing in at 13 pounds 4 ounces as a couple of days ago, but I think he feels heavier than that. They used to look for him gaining an ounce a day but now that is not the case. I think they said they expect him to gain an ounce or two in a week. Part of it is that matthew is becoming more active and burning more calories and in a few weeks, his body will begin to adjust to eating to keep up with his activity level. He is currently 2 feet long and growing longer each day (or so it seems).

Meds: He is still on four different meds, but we think that he will be coming off two of them shortly. The aldactazide used for keeping fluid off the lungs may be stopped shortly and the prilosec that we have been giving him for acid reflux has been decreased to every other day and then eventually he will go to every three days, etc. until he is no longer on it. We are still giving him iron, and vitamin A,D, E, and K supplements. We no longer have to give him medicated eye drops!!! YEAH!!

Development: Matthew met with the Infant Development Specialist at Stanford and it was such a pleasant meeting. The doctor said that he didn't know what to expect of Matthew because of his extensive history, but he said, " that he is doing remarkably well" and that he was "shocked" at how well he was doing. In fact, he said he was exactly where he needed to be for his "corrected age". In terms of development, they go by corrected age for Matthew. What this means is that they go by his due date of when he should have been born and calculate how many months old he is. For example, Matthew is 9 months old, but for developmental purposes, they look at him as a 5-1/2 month old baby because that is where he would be if he had been born on his due date. The entire time in the NICU was just growing and healing, like he would have done if he was still in the womb, so that time doesn't count for development. Given the fact that Matthew was born so early, and had as many issues that he had/has, the doctor said that he should have a lot more delays and a lot more issues. The only thing they could find wrong with him was that his upper body muscle tone was a little weak, but that is easily fixed by giving him more tummy time (which we have now been doing) PRAISE GOD!!! We are so excited and know that Matthew wouldn't be where he is at if it wasn't for the power of prayer. The doctors also said that all the work that we've been doing with him at home is also another reason why he is doing so good (this makes me feel very good, knowing that what I do with him all day is making a difference). I am so thankful that Jason has a job that allows me to be home with Matthew without having to worry about going to work. I know Matthew needs me right now, so once again Nursing school is on hold until the Fall quarter later this year.

Currently, Matthew is learning to turn sideways and grab for things, grab his feet, and sit up. I think in a couple of weeks he should be able to sit up on his own without help. He gets so much stronger every day. He also loves to stand and bear weight on both of his legs. He will stand up on his legs so much that we only support him so he doesn't fall backwards or forwards. On occasion he will roll over on his own but he needs help getting back to the starting position. He loves to laugh and squeal and blow raspberries. He loves to hear his voice and is very talkative. Sometimes he talks with so much expression on his face and in his voice that it really seems like he is telling me a story. I think he is also starting to cut teeth because he has become a regular drool monster and he wants to bite down and chew on everything, including my fingers.

Matthew will have his very own teacher coming to the home starting in a week or so. She is associated with the Early Start Program and they will follow him until he is 3 years old. Their goal is to help Matthew develop more skills that will help him down the road when he is in school. They are also trained to notice any developmental delays that he may have and to help him overcome those. We will keep you updated on how those visits go.

Thanks again to everyone for your prayers. Please continue to pray for healing of his eyes, lungs, and for his development. Blessings to all of you!

            

Surgery be being Successful

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Matthew's surgery went very well. The doctor was very pleased with what he saw and is optimistic about the outlook for the eye. He said the retina looked flat and that what he thought was a hole actually turned out to be a hole, but it appeared to have resolved on its own by "an intervention other than himself". He had previously said that a hole was devastating and would eventually grow to cover virutually the entire back of his eye. It is virtually unheard of that a hole would repair itself. The doctor removed the lens and the buckle from his right eye during the roughly two hour surgery. Removing the buckle caused some increased tension in his eye. This additional tension could cause the retina to pull away from the back of the eye, so he's going to keep a close watch on it. Removing the lens allows matthew to have an unobstructed view now (since the lens had a cataract in it), but it also means he can't focus that eye. We'll be visiting an optometrist with him pretty soon where we'll likely be given a prescription for contacts. It's hard enough getting eye drops in his eyes, I can't imagine how hard it will be to get a contact in there.

If everything goes well, Matthew will have to wear a contact for a while, but will have a synthetic lens put in sometime in the next few years.

Matthew's Surgery

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Surprisingly, Matthew's surgery was NOT rescheduled, so it is happening today at 10:30 a.m. The surgery is scheduled for 3 hours, and since he will be under general anesthesia for quite awhile, he may not be awake until late this afternoon. We'll post another entry when we know the results.

Happy New Year!

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What a wonderful way to start the new year by having to take your son to the hospital for an MRI and surgery...

Matthew's MRI is now scheduled for Monday, January 5th at 11:00 a.m. The surgery is not scheduled for the same day because the eye surgeon decided that in case something unusual was seen and something needed to be done, he wanted to have some time for that to take place before he did the surgery. So, with that being said, Matthew's eye surgery is scheduled for January 14th at 10:30 a.m.

Since he needs to be put under anesthesia for the MRI and the surgery, he will be staying in the hospital for 24 hours each time, but possibly longer after the eye surgery. Please pray that the MRI goes well and they don't find anything wrong and that his eye surgery goes smoothly without complications.

His eye surgery has to be done sooner than later because of the time limit that is on the buckle that is currently around his eye. This buckle was put around his eye back on September 27th when they first did the vitrectomy (where they remove the vitreous fluid in the eye) The buckle should only be around the eye for 3 to 4 months at the most so it needs to come off now. During this next eye surgery they are going to remove the buckle, remove the lens that is clouded, remove the vitreous fluid again so they can repair the retina if possible, then close it up for now. They will put a synthetic lens in his eye later down the road, but for now we may end up having to put a contact lens on his eye everyday until the new lens is put in. (this could be up until he is 3 or 4 years old)

We'll keep you updated on his status and the results of the MRI and surgery. I hope that all of you had a safe and wonderful New Year's celebration.

Merry Christmas!

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What a wonderful Christmas it has been indeed!! Matthew being home for Christmas was the best present in the world! We had so much fun with him too. We had to stay home for Christmas because Matthew was diagnosed with an upper respiratory infection earlier this week. We spent Sunday night to Monday morning with him in the E.R. up at Stanford. His blood and urine cultures came back positive for bacteria growth too. He seems to be feeling a bit better today, but the doctor told us not to take him out for at least a week or so. Unfortunately, he does have an eye exam tomorrow morning so we have to take him out for that.

As of today we don't know when the eye surgery is going to happen. I hope to find out more information tomorrow. The plan is to coordinate the MRI and the surgery for the same day. They don't want to have to put him under anesthesia more than they need to, so they are trying to plan on having him admitted to the hospital, do the MRI and then go right to surgery after the MRI, providing everything looks normal.

Matthew is currently weighing 9 pounds 5 ounces and is now 21 inches long. He is growing so fast that it seems like he changes on a daily basis. The nurse who came out to visit him and to measure how well he is doing developmentally for his corrected age (2 1/2 months) was extremely pleased! Of the 15 items on her list of things he should be doing like a normal 2 1/2 month old baby he was only slightly delayed on two of them. One of them was tracking with his eyes, which was to be expected because of all the eye surgeries he has had. Fortunately, he will track with his eyes on occasion, so at least we know he can see. The other thing is his cooing. He doesn't do too much of that, however, today he was doing a lot more of it, so maybe he is only slightly delayed there. The nurse did say that she was actually shocked that he didn't have more delays given all that he has been through. So his developemental progress so far is a miracle!! PRAISE GOD!

The other good news that we received last week was at his follow up GI appointment. After discussing with the doctor's about Matthew's progress in his feedings and stooling patterns, they said that he seemed to be doing just great. Everything he is going through is also what a normal baby would be going through. So they said that the problems he had with his intestines in the past could possibly be chalked up to him being so premature. To make sure they don't need to run any more tests, they want to meet with us one more time in January to see if things are the same and if they are, then we may never have to meet with the GI doctors again. Yeah!! Wouldn't it be great if he never had any more intestinal problems?

As you can see we had a lot of things to be thankful for this Christmas and we hope all of you had a wonderful Christmas too! We hope you enjoy the new pictures of Matthew! Please continue to pray for his health and healing and for his developmental progress. Thank you all so very much!

        

Good news, bad news

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As you know, Matthew has had several doctor's appointments this week, and so far we have some good news and some not so good news.

First the good news...all of his labwork that was drawn on Monday came back normal!!!! YIPPEEE!!! His direct bilirubin is at an all time low of .5, okay so it is suppose to be .4 or lower but we'll take it!! All of his chemistry came back normal, his hematocrit and red blood cell count went back up (which means, no blood transfusion needed) soooooooo, we were able to stop three more meds today!!! I am soooooo excited, happy dance, happy dance!!

In addition to all this great stuff, Matthew was weighed at the Pediatrician's office today and he is exactly 9 pounds!!! woohoo for the little boy's weight gain!

Now, the not so good news. Matthew met with the eye doctor yesterday and he wants to try to do the surgery this Friday, although I am not so sure that it's going to happen. The doctor wants Matthew to have an MRI done before the surgery. Matthew has developed rapid up and down eye movement called Downward Nystagmus. It is involuntary and apparently has nothing to do with all of his eye problems; it has to do with some neurological problem in the brain. The doctor wants the MRI done to make sure nothing else is going on because this neurological problem could be the reason why he had the vagal response during the last surgery. The surgery won't happen unless the MRI has been done and they seem to be having some difficulty getting him in ASAP. In addition to all this, in order for Matthew to have the MRI done, he has to be put under anesthesia so he is completely still for the MRI and when he goes under anesthesia, that can lead to more complications with his lungs. For those of you unfamiliar with Nystagmus, it is characterized by an involuntary movement of the eyes, which may reduce vision or be associated with other, more serious, conditions that limit vision. Nystagmus may be one of several infantile types or may be acquired later in life. For more easy reading information about Nystagmus, click here

So, as you can see, this is not the news I expected to hear and it just really puts things into perspecive for us. We are really not out of the woods with Matthew even though he is home with us. We really won't know the extent of his complications or developmental problems until he is 8 years old! Yes, that's right, 8 YEARS OLD!! Who knows what kind of developmental problems he may have, especially with the bleeds he has already had in the brain from way back when.

They say there is no cure for Nystagmus but there are things that can be done to reduce it. I have seen God work a miracle before, and I can only pray for another one here. Please continue to pray for Matthew's development to be normal, for healing of his eyes, and of course for us as we go through more stuff with him.

Getting bigger and better...

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Wow, has it really been a month since he has been home? I truly can't believe it! It feels like we just left the hospital yesterday...

Matthew is currently 20-1/2 inches long and is weighing 8 pounds 10 ounces as of last Thursday. Only six more ounces to go and he will finally be 9 pounds!! (this is what my doctor was estimating his actual birthweight was going to be when I was pregnant with him...weird, huh?) He's even starting to outgrow some of his 0-3 month clothing (I never thought I'd say that). For those of you with inquiring minds, it looks like the color of his eyes is going to be hazel (just like his daddy) and he even has a dimple in his chin, just like his daddy does. He has dark hair that is finally starting to come in, so maybe he won't be bald afterall!

Matthew is also getting much stronger too. He is able to hold his head up for long periods of time without any assistance. He likes to push with his legs and pull up with his arms when I am holding him, so basically he will crawl up my chest up to my shoulders. He even gets really frustrated when he can't go any farther than that. Matthew is now beginning to smile a lot more too. He has these really cute, huge toothless smiles that just make me laugh hysterically every time I see them. I found out that he is also really ticklish on his feet, toes, shoulders and neck. It's so much fun watching him change every day...

Anyway, about a week ago, I just felt like Matthew was ready to be moved off the feeding tube and the special feeding bottle that he was on. There were so many clues he was giving me that I felt like it was time to make a change, so we did!! Thank God too because I was really getting sick of dealing with the feeding tube and all the other things that had to go along with it. Currently, Matthew is feeding from a regular bottle and is doing great. In the last day or so the doctor even told us we don't have to be so rigid on feeding him every three hours. Although, we are not suppose to go longer than four hours between feeds. In addition, we are able to let him take as much or as little as he feels up to taking. So if he wants 2 ounces at one feed and 3 at the next, that is okay too. If he wants to eat in 2-1/2 hours instead of 3 then we can feed him then or even if he goes 3-1/2 hours before he is ready to eat we can do that too. The only problem that we struggle with is the fact that he still needs medications at every feeding, so we may try and juggle some things around. The good news though is that we were able to stop one of his medications for his direct bilirubin levels. The last set of tests that were done at Thanksgiving time showed that his direct bilirubin is down to 1.2!!! THE LOWEST THAT IT HAS EVER BEEN!!! (The highest it had been at was 14) It still needs to be below one, so we are continuing with his other medication to bring down his bilirubin. He has more labwork to be drawn on Monday, so I am hoping that we will be able to stop more of his other meds.

I met with the occupational therapist last week and she said Matthew was doing absolutely fabulous. She went on to say that she is giving him an A+ for feeding and that we don't need to see her again unless some other problems come up for him, which very well could happen after his eye surgery. With his eye surgery she said it could be like starting all over again...UGH! I hope not! Anyway, she also did say that she was really impressed with him because a lot of the issues that most preemies born at 24 weeks have, he doesn't seem to have, at least with regards to feeding!!! PRAISE GOD!!! I am so excited that something seems to be going right. The other thing that I have been really excited about is that I have been breastfeeding him occasionally, especially when his food isn't quite ready... Amazingly, he latches on with no problems!! From what I understand, this is also pretty rare! I am hoping that one day I will be able to breastfeed half if not all his feedings in the future!

As far as we can tell, his eyes are about the same so the surgery still needs to be done but we don't know if it is going to happen on the 29th or not. Matthew has 5 doctor's appointments this week and one of them is the eye doctor, so I will check with him to see when that may happen.

He is still on the oxygen, although his pediatrician would like to start weening him off of it, so we are very slowly coming down on the liter flow rate. We went a bit too fast this last week and realized he was not oxygenating his blood sufficiently so we had to bump him back up. I suspect it will be like the ventilator before where he did good for awhile then he went back on then off, then on, but one never knows, he may end up doing great in the weening process. We shall see.

I've been trying to get Jason to post more pictures of Matthew (he has a special way of doing it, otherwise I would do it), but he has been absolutely swamped with stuff...so as soon as we can, we will get you a new photo of him.

Please keep praying for Matthew's healing and growth process! We know your prayers have been heard. Thank you all again so very much! We'll continue to keep you posted on the latest updates about our little man.

Surgery Cancelled

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Wow, I can't believe it has been 3 weeks since Matthew has been home! Time flies when you are having fun! It has been such a joy to have him home, even though it has been pretty tough at times.

Matthew was scheduled for his eye surgery today at 10:30 and it was cancelled. We managed to get admitted to the hospital, made it all the way to surgery pre-op and we were about to go into surgery when they realized that they didn't have a bed for him in the NICU. They had a bed for him but it was in the wrong part of the hospital. He really needs to be in the NICU to be monitored for 24 hours after surgery, especially because of his past history. So....the next possible dates for his eye surgery is either December 10 or 29. This is the surgery that they had attempted before but didn't get to finish because he had a vagal response and stopped breathing. I have to admit I am glad it was postponed because I hated having to take him back to the hospital.

Anyway, we weren't sure how much he was weighing up to now but we got a chance to weigh him today at pre-op. He was weighing 8 pounds 7 ounces but he was weighed with his clothes and diaper on, so he might be more like 8 pounds 3 ounces. He has a pediatrician appointment on Thursday, so when they weigh him then we will let you know his true weight.

We will continue to keep you posted on Matthew's progress and post pictures of him too. Thank you again for all your thoughts, prayers and gifts.

Getting Settled In

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We're finally getting settled in and into a routine. As Jenn said, Matthew's on nine medications which vary in dosage and frequency throughout the day. We got eight trays and a large supply of syringes so that I can prepare 24 hours worth of medications and feeds at one time. We also got a refrigerator for Matthew's room so that we don't have to go downstairs in the middle of the night to get his food or medication. Until Matthew gets his days and nights straight, I'm taking care of the evening feeds through midnight and Jenn's taking the night shift so that I can sleep before work. I'm certainly not getting full nights sleep, but I'm not getting anywhere near as little sleep as Jenn is. Jenn got a total of five hours of sleep during the first two nights Matthew was home.

Matthew's getting more comfortable now too. He's getting used to the sights and sounds of our house and is definitely less fussy now than when we first got him home; I think he's finally realized that we're not going to be poking and proding him every time we pick him up.

Homecoming!!!

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Today is our 3 year wedding anniversary and the best present of all was bringing our son home from the hospital for the first time!!! YEAH!!! I am typing this right now as the little one is asleep next to me...Right now I have his 9:00 p.m. feeding and meds being fed through his feeding tube, and well of course he has his oxygen going too and I am so excited that he is finally home!! We spent almost 5 months in the hospital with him, every day anticipating this day, and can you believe I still cried when we left the hospital? God has such wonderful timing to allow us to bring him home on our wedding anniversary. He is home on 9 different medications and I am still trying to get it all figured out...let's see how well I do at 3:00 a.m. when I have to try to and remember which med is which and how much when...It is pretty overwhelming but the nurses say it will take us a good 4 to 5 days to get used to everything. I think it will take a little longer for our cats to get used to him too.

    

Another Change of Plans

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I wish the hospital would get their story straight. One of the nurses called Jenn this morning and asked if she had everything ready for Matthew to come home, because he's coming home TOMORROW!!! Holy lack of notice Batman! They're trying to get his oxygen installed today since that has to happen before he can come home. If that can't happen until tomorrow, his release may get delayed until wednesday.

Getting Better at Feeding

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Matthew's getting better at feeding from the bottle. He generally takes about half of his total feeds each day from the bottle and usually takes at least one whole feed from the bottle each day.

He's finally past the 3175 g (7 lb) mark, and growing regularly. He's putting on an ounce or two a day. He's getting a lot stronger too. He can hold his head up for longer periods now and is getting good at pushing himself up with his legs when he's laying on your chest. He's also able to move himself around his crib. The nurses regularly find him in different parts of the crib after laying him in the center.

We're currently planning on thursday as his release date, but we need to talk with the new attending who's coming on today. We'll keep you informed as we know more.

Change of Plans

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Well, it turns out Matthew won't be coming home on friday after all. It turns out no one bothered to inform the attending physician (who is the one who actually has to sign the discharge order) that friday was the day Matthew was going home. He doesn't think Matthew's quite ready to go home yet, so it's been delayed until early next week at the soonest. We're honestly a little relieved since he still has trouble with his feeding and because we still have so much to do to get ready for him.

We did have some good news today. Matthew took his entire noon feeding (now 62 ml) from the bottle in about 15 minutes. He was WIDE awake at noon which is probably why he was able to take all of it, but it completely exhausted him. He slept straight through his three and six o'clock feedings before waking up around 6:30 or so.

Matthew's Coming Home!!!

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Matthew's coming home this friday! We're very excited, but pretty nervous about it as well. Plus, we've still got a LOT to do before he comes home:

  • Learn about all his medication (he's on about 8 different ones)
  • Learn to put in his feeding tube
  • Learn to use the haberman feeding bottle
  • Have the oxygen tanks installed at home
  • Find a pediatrician
  • Install and have the carseats checked out
  • Nair the cats
  • Finish cleaning the house
  • etc.

He will be coming home on oxygen and a monitor (for when he feeds). He's fine (and doesn't need to be on a monitor) most of the time, but he still forgets to breathe sometimes when he's feeding from a bottle. This causes him to choke which freaks him out and he drops his heart rate (and O2 saturation) pretty significantly. It's not always immediately apparent by looking at him, so we requested that they send him home with a monitor until he gets better at feeding from a bottle.

It's a miracle!

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Today was a day filled with the most wonderful news I have ever heard with Matthew. First let me start off by saying that during his 12:00 feeding today, he took 30 ml's by the bottle!!! (that's half of his feeds) and during his feeding, he only had one episode where he dropped his heart rate but he was able to come back up to normal pretty quickly! Then on top of that, the eye doctor came and examined him today and was extremely surprised at what he saw in his right eye, which is his bad eye. At this point, he expected the retina to be completely detached and curled up in a ball, but it wasn't!! As a matter of fact he said it looked like it was attached in most places, with very little detachment and it was FLAT!!! Flat is a really good thing and that is the way it is suppose to be! Considering how rapidly the Retinopathy of Prematurity (ROP) disease was progressing in that eye, there is no way his retina should still be attached at this point. I am telling you it is nothing but a miracle that his retina looks as good as it does. Praise God!!! There was however, some more blood in his left eye and the doctor didn't like it but he didn't seem to be too concerned for now.

In addition to this, the only way we know as much as we do about the retina is because the doctor was able to really see inside the eye for the first time since the lense had clouded up. Now I don't know if the lense is not as clouded as before or what the deal is, but I was really excited to know that he was able to get a good look into his eye. Unfortunately though, Matthew will still need to have surgery in that eye to remove the lense and to repair the areas where there is detachment. The doctor is currently trying to get time in the operating room before he goes on vacation (which I think is November 11 or 13). If he is able to get O.R. time before he goes then Matthew will stay in the hospital. If he can't get O.R. time before he goes on vacation then Matthew could possibly come home as early as the next few days!! (OH MY GOSH, WE ARE SO NOT READY!!!) I was so shocked when they told me that, that I was struck with absolute excitement and complete fear at the same time. They said that the only thing that is keeping him in the hospital at this point is his eyes and there is nothing they are doing in the hospital that we can't do at home.

At first Matthew was staying because of his eyes and liver issues, but the hide-a-scan results came back normal and they tested his bilirubin levels and they are coming back down. They were talking about doing a liver biopsy (another surgical procedure) but then decided against it and decided to monitor his bilirubin levels for awhile. They are running one more genetic test to see if he is deficient in producing a specific liver enzyme, but we will let you know when we get the results from that.

So at this point he could either be home really soon or stay in the hospital for another week or so, it all depends on whether or not the doctor can get time in the O.R. If he can't do the surgery before he goes on vacation and Matthew can't take his full feeds from a bottle, then he will come home with a feeding tube and we would be the ones to have to put it in him and continue to work with the bottle feedings until he gets it down. Because he drops his heart rate so significantly most of the time during feedings, he will have to come home on a monitor so we can watch him. I am praying so hard that he can take the full feeds from the bottle, because I really don't want to have to deal with trying to put a feeding tube in him and worry about whether or not it is going into his stomach, or if the feeding tube ended up in his lungs...as it is Matthew will be coming home on oxygen and will probably have to be on oxygen for up to a year or so they said.

Anyway, please keep praying for Matthew's feeding progress so he doesn't have to come home on a feeding tube and pray that he doesn't have drops in his heart rate during his feedings. Please also pray for the right timing of the eye surgery. Pray that we can get eveything done before he comes home. (i.e. thoroughly cleaning the house by dusting, steam cleaning carpets and removing anything that could possibly irritate his lungs, disinfecting everything, having Jason finish his dresser that he is building for him, etc) We know your prayers are working, so please keep praying! Thank you all so very very much for everything...we'll continue to keep you updated as soon as we know anything.

Hide-a-scan on Order

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The doctors are still concerned about Matthew's high direct biliruben levels and elevated results of recent liver function tests. Another hide-a-scan test has been ordered for sometime this week. They're looking at the common bile duct area for abnormalities. If that looks normal, the doctors may also consider performing a liver biopsy.

We still don't know when Matthew's eye surgery will be. The eye surgeon said he would try to reschedule in one to one and a half weeks which should be near the end of this week. We haven't heard anything which probably means it will be delayed somewhat.

Jenn is still working with the occupational therapist to get Matthew to feed from a bottle. He does fairly well on the breast when he's very alert, but still isn't taking very much of his feeding that way. He's still tolerating his feeds though, so that's a good sign. It probably means we won't have to do the intestinal surgery.

Matthew's weight's been hovering around 2900 g (6 lbs 6 ounces) for the last couple of weeks, so they've upped the amount of fortifier they're putting in his milk. By itself, breast milk is 20 Calories per ounce. When they first started adding fortifier, they added enough to raise the level to 22 Calories per ounce. This wasn't enough, so a couple of days ago they increased the amount of fortifier to raise the level to 24 Calories per ounce. He was up 60 g (2 ounces) yesterday, so it looks like it might be working.

New way to access this site...

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You can now access this site by visiting www.matthewbeaver.com. If you access it this way, you will not see the sidebar on the left of the page.

Surgery started, then stopped

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Matthew went in for surgery this morning at 7:00 a.m. and things started out well, but didn't finish that way. After he was under anesthesia and intubated, the doctor made an incision in the eye and as soon as he did that Matthew stopped breathing. But if Matthew was on the ventilator, how could he stop breathing, right? We asked the same question and it looks like Matthew had a bronchospasm and a neurological response or a vagal response as soon as the doctor made the incision in the eye. This means that he had a neurological response that made his chest lock up or not move so the ventilator couldn't breathe for him. He had the same reaction to fentanyl (a pain med) that they had given him in the past. At that point, the doctor decided not to go any further with the surgery. This was a good thing too because once they got Matthew breathing again and he went in to close up the incision he made, the exact same thing happened. From what I understand, it was an automatic neurological response (kind of like when the doctor tests your reflexes by hitting your knee with his hand...he hits it just right and your leg moves...you didn't make the leg move consciously, it just happened) They say this is not a good thing, but it can happen in some cases. Fortunately, they told us that his heart remained strong throughout the entire time. So needless to say they are going to try the surgery again in about 7 to 10 days from today. I believe God answered our prayers with the doctor's decision to stop the surgery. We prayed and asked God to give him the wisdom he needed to make the right decisions today and I feel like he did. Imagine if we had a gung-ho doctor that wanted to keep going... Anyway, Matthew was extubated around 1:00 and is back on nasal cannula at a tenth of a liter at 55% oxygen. They stopped his feedings at midnight last night because of the surgery but are going to slowly get him back up to his full feeds again.

Now to catch you up on everything else...before surgery, Matthew was up to 60 ml's of breastmilk every 3 hours. That was beyond his "full feeds" total of 49 ml's every three hours. So far he was tolerating the feedings, pooping on his own and he was testing negative for blood in the stool every time they tested it. Unfortunately, Matthew was not gaining a lot of weight on just the breastmilk alone, so they did start adding more vitamins and fortifiers to the breastmilk to help add extra calories. So far he seems to be tolerating it but of course only time will tell. Let's keep praying that he tolerates the feeds with the fortifiers in it.

I have worked with the occupational therapist several times in trying to get Matthew to take the bottle, but it turns out that he is actually doing better on the breast than he is on the bottle. Yesterday Matthew latched onto my breast and suckled for about 15 minutes. He was getting milk and was swallowing and breathing too. But near the end he was getting tired and then he choked and he dropped his heart rate and his oxygen saturation. When that happens we have to stimulate him by rubbing his back or slapping his back to get him to breathe and bring his heart rate back up. It worked, but as soon as that happened, he vomitted all over me. What a joy it was to be wearing overalls that were open, so when he threw up on me, it went down inside my overalls, all over my legs and on the outside of my shirt!! What fun it was!! (welcome to motherhood, huh?)

I worked with the physical therapist and the infant development specialist yesterday to test Matthew's muscle tone and to work on exercises for him to help build strength. They were very pleased with the results they were getting from him and they both thought he did exceptionally well.

His direct bilirubin levels are starting to go back up again, but now that he is off of the IV nutrition, it could be awhile (even a couple of months) before they come back down to normal. He is still getting medications to help his bilirubin levels come back down to normal limits.

I was able to give him a bath yesterday and he absolutely loved it, so did I!! We had a lot of fun.

Jason and I are doing okay. I was at the hospital yesterday for about 14 hours only to come home, sleep, get up and leave the house by 6:00 a.m. today to do it all over again. I am feeling pretty tired today, but did take a break so I could get things squared away with insurance stuff and other things like that which couldn't be put off. Jason and I rejoiced at the fact that Matthew had his 4 month old birthday yesterday (he should have only been 11 days old) kind of weird to think of it like that. We are getting tired of having him in the hospital and of having to be down at the hospital every day and are anxious to have him home. What a great thanksgiving present it will be to have him home with us, if he is able to be.

Please keep praying for Matthew, for the doctor's and nurses, all the various therapists, and for us. Thank you for the comments on line, cards in the mail and all of your wonderful words of encouragement. We really do appreciate it!

On Full Feeds!!!

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Matthew's on full feeds now (49 ml every 3 hours), and so far he's tolerating it well. They've been giving him additional fluid (dextrose) via his broviac, but he pulled it out today, so they've stopped the additional fluid. They don't seem too concerned that it's out. They were planning on feeding him through it during the surgery on wednesday, but they'll just use a peripheral line instead.

He's starting to get the hang of bottle feeding. He took about 6 ml from the bottle around noon today. He gets tired pretty quickly, but as he gets more coordinated it should be easier for him.

He's actually down a little bit on weight from a couple of days ago. If he doesn't start gaining weight regularly pretty soon, the doctors are going to want to start adding fortifiers to the breastmilk.

    

Doing Great

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Matthew's doing great; his feeds are up to 37 ml every 3 hours and he's having little to no residual and is stooling great. He's now up to 2973 g (just over 6 pounds 8 ounces), so full feeds for him are about 56 ml every 3 hours. They're increasing his feeds 8 ml every day (2 ml every other feeding), so he should get to full feeds by friday morning if there are no complications or if he doesn't have any residuals.

The CF sweat test is scheduled for this friday. I doubt he's old enough for the test to work, but the doctors wanted to give it a try.

Jenn's working with the occupational thearapist tomorrow to try and get Matthew to take a bottle. He's pretty good at sucking on a pacifier, but he still seems to get confused when he gets a mouthful of milk.

The eye surgery is scheduled for October 22nd. The doctor is planning on removing the lens, fixing the retina (if it's fixable), and adding silicone oil to try and push the retina back against the back wall of the eye.

Tolerating his feeds

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Matthew's been doing really well the last few days. He's tolerating his feeds really well and is up to 11 ml every 3 hours. Jenn even got to breastfeed him for a little bit. He didn't know quite what to do when he was first put to the breast, so the lactation consultant suggested using a breast shield (basically a silicone nipple cover that gives Matthew the same mouth feel as the pacifiers he's been sucking on). Once Jenn tried that, Matthew suckled for several minutes before getting tired. It's hard to say how much he got during that time, but he definitely got some and he seemed to like it.

If Matthew continues to tolerate his feedings and is able to make it to full feeds (currently 49 ml every 3 hours) and be there for a couple of days with no complications, he could be ready to come home. They're still trying to get the surgery scheduled on his right eye, but he doesn't necessarily have to stay in the hospital until that can happen (he could come back just for the surgery and would only have to stay 24 hours post surgery for recovery).

Doing pretty good...

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Sorry it has taken awhile to write an entry, but we have just been exhausted these last few days...

Anyway, to get you caught up, the surgery went fairly well as the doctor added 460 more shots of laser and 6 shots of cryotherapy in the left eye. He did not do anything new to the right eye because there was still more bleeding in that eye. The eye doctor examined his eyes today and he is certain that he needs to go back in for more surgery into Matthew's right eye before two weeks is up. He needs to remove the lens in that eye because it did cloud up after he nicked it and now it is almost a full blown cataract. Apparently, if he removes the lens, Matthew will still be able to see out of the eye but not very well. They will replace the lens with a synthetic lens but that could be anywhere from 6 months to 3 years down the road before they do that. The doctor also said that if babies can't see out of an eye, e.g. a clouded lens, then their brain will shut down and never use it so it is better to remove the lens so they will continue to use the eye even if it is not great vision. The doctor also mentioned that with all the surgeries and cryotherapy in the left eye, it is also likely to develop a cataract and the lens may need to be removed from that eye as well. He is also confident that the left eye is 99.9% good, however, during the eye exam today he noticed a blood vessel shaped like a tornado in the vitreous fluid. He doesn't know what it is, but he is going to keep an eye on it.

After the surgery, Matthew stayed intubated for a day or so, then he went onto CPAP. However, today at 11:00 a.m., they took him off of CPAP and put him on nasal cannula and he seemed to be doing fairly well. As of 11:00 p.m., he was still on the cannula.

After the surgery, Matthew was having more bleeding ulcers in his stomach because of the stress he's been under so they started him on zantac in his IV nutrition. They were getting blood and bile on continuous suction for a day or so. On Friday of last week, they tried to start his feeds again at a very small amount, but they were getting a lot of residual with unusual color so they stopped. However, today they started up his feeds again at 3 ml's every 3 hours at 6:00 pm. As of his second feeding at 9:00, he tolerated it really well, no residuals, no bile or unusual color. We were going to try to put him to the breast today while they fed him through the tube to get him used to associating my breast with food. This is called recreational nippling or recreational breastfeeding and this is sometimes successful but most of the times it is not. Preemies usually don't know what to do when they are put to breast because they are so used to having tubes in their mouths that when they are put to the breast, they don't have the instinct to start sucking. I am hoping that with time and a lot of work, I'll be able to breastfeed him. When it was time to feed Matthew today, he was getting really tired, so we didn't put him to the breast, but we did put a drop of breastmilk on his tongue and he seemed to swallow it okay and enjoy it. Then with me holding him, we fed him the rest of the milk through a tube. He was fast asleep shorter after the feeding stopped.

Matthew has had multiple blood transfusions recently and with all the medications he has been on, he started to retain a lot of fluid. So they started him on Lasix to help him urinate out some of the fluid. At one point he was over 6 pounds, but as of last night he was back down and is now weighing 5 pounds 13 ounces which is probably closer to his true weight.

He is still receiving antibiotics for a lung infection and an infection in his bladder but they should stop those sometime this week.

He is still at Stanford and will probably be there for a few more weeks because of the upcoming surgeries.

Please continue to pray for Matthew and us and for all the other babies in the NICU that are undergoing other kinds of surgeries and problems.

More Surgery

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Matthew was doing quite a bit better yesterday. He was alert for long periods and relatively quiet. He was fighting the ventilator quite a bit, so they were giving him sedatives to keep him calm.

The eye doctor examined his eyes yesterday and determined that he needed to do a bit more laser treatment as well as possibly some cryotherapy (where they freeze a portion of his eye to stop the progress of blood vessels) on his left eye. Surgery is scheduled for sometime this morning.

The lens on his right eye has clouded up, so he'll have to take the lens out of his right eye soon. If the rest of his eye improves, he'll get a contact in that eye temporarily then receive a synthetic lens sometime later (when he's between 6 months old and 3-4 years old). It will be a fixed focal length lens which will give him clear vision from about 10 feet out to infinity, but he'll need reading glasses to read out of that eye. All this could be moot if he really has a hole in his retina. If that's the case, he'll likely only see patches of light and dark in that eye.

A little worse today

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Matthew has used up all of his reserves and then some. All of the surgeries and procedures he has had to go through in the last week and a half have completely wiped him out. To top it all off, they have started him on antibiotics because he is showing signs of having an infection. They started some tests on his blood and mucus from his lungs but it won't be for a day or so before something grows on the cultures that will give us a clue as to what kind of infection he has.

There are multiple parts of his lungs now that have collapsed. But the last chest x-ray showed some minor improvement. Needless to say he is still on the ventilator and he is on pretty high settings needing a lot of support. They have tried to come down on the settings but then he doesn't oxygenate himself that well and his carbon dioxide levels go up, so when they do make changes they have to go very slowly. Matthew was also retaining a lot of fluid so they gave him three doses of lasix to help him get rid of some of it. They are hoping that the loss of the extra fluid will help him breathe better. In addition, they are giving him steroids, meds to dilate the blood vessels in the lungs, meds to keep him sedated so he doesn't try to fight the ventilator and antibiotics. They are hoping that with all these things he should start feeling better in a few days.

He was supposed to have an eye exam today, but the nurse and doctor at Stanford told the eye doctor that he shouldn't do it because it would for sure push Matthew over the edge. The eye doctor agreed and is hoping to do an eye exam in the next day or so, all of this will of course depend on Matthew's condition. I am praying so hard that after the eye exam, when he finally has it, that he does not need anymore eye surgery because his eyes are fine. Matthew is at his end now and it would be very hard to have him go through another surgery so soon. But it is a fine balance because you know that if he doesn't have the surgery, he could lose his eyesight, yet at the same time, you don't want to have him undergo a surgery that could cause him to go out again.

Please keep praying that God will heal his eyes, his lungs and heal his body of this unknown infection. Please pray that he no longer needs any more surgeries of any kind. Please keep us in your prayers too. It has been exhuasting for us as well. Thank you all so very much.

Good news, bad news

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The eye doctor looked at Matthew's eye today and was surprised at how much better it was than he thought it would be. On a happy scale from 1 to 10, before he saw Matthew, he was thinking he would be a negative 3. After the examination, he was feeling happy at a positive 8. So he was encouraged by what he saw. It looks like the retina did not detach or the way he phrased it sounded like there is a lot of attachment in the retina. Now whether or not the areas that he thought were detached really aren't, we're not too clear on. There was either more bleeding or the blood that was left in the eye just settled down so he was not able to tell if there is a confirmed hole in the retina. When he looked at the lens, he was also pleased to see that it didn't cloud up, so he didn't think it would be likely that he would develop a cataract, but anything can still happen.

Matthew was still completely out of it when we went to see him this morning and of course he is still on the ventilator. He has been up and down on the ventilator settings and the doctor called us about 7:00 tonight to tell us that he was having more difficulties on the ventilator. They took an x-ray and noticed that his right upper lobe has collapsed, so they are giving him medicines to dilate the blood vessels in the lungs to help with better expansion of air. In addition to the dilating medicine, they are giving him medication to help break up a lot of the secretions they are now getting since he has been on the vent for a day or so. This apparently is pretty common in babies with chronic lung disease, so they are trying to get him into really good shape before taking him off the ventilator. They are also trying to be careful about taking him off the ventilator too soon, just in case the eye doctor needs to go back in for more surgery later this week. It is better to leave him on the ventilator for one more day for the surgery as opposed to having to extubate, intubate, extubate, etc.

The eye doctor will be seeing Matthew again sometime tomorrow to look at the left eye to determine if he needs to finish the eye with any more laser surgery or if it is completely done. While he thinks it is still a home run, there was some bleeding that was still in the eye and he wants to make sure that he doesn't need to laser those areas that previously had blood in them.

Please continue to pray for healing of Matthew's eyes. Pray that there is absolutely no retinal detachment and that there is no hole in the retina. Pray for his recovery and that God gives him the strength for each new day and night. Pray for his comfort and that he is not in any pain. Pray for healing in his lungs. Continue to pray for the new doctors and new nurses taking care of him to have wisdom and discernment when making decisions about his care. Please continue to pray for us as this is a difficult and scary time right now.

Matthew just came back from his surgery on his right eye. The surgeon was very happy with how the surgery went, but was concerned about a few things he saw. First, there are areas that are likely to be retinal detachment. These are in his peripheral vision, so if they don't spread they will likely have little impact on his central vision. It's even possible that the retina could lay back down in these areas and he could have good vision across the entire eye. There is also what looks like a hole in the retina. The surgeon couldn't tell for sure if it really is a hole (he was 70-80% sure it was), but he didn't want to insert anything into the hole in case it wasn't. A hole in the retina is a really bad thing. We're not sure what can be done about it if it is a hole, but we'll talk it over with the surgeon if he confirms that it is. The doctor did nick the lens during the surgery, but it didn't progress during the surgery. If the lens ends up clouding up (cataracts), they'll have to remove the lens. It's possible that it will remain as is and simply slightly impair his vision. They also had to put a buckle on his eye. We're not exactly sure why this was necessary, but it will have to stay on his eye for 3-4 months. No matter how well things improve, he'll definitely have to have another surgery in 3-4 months to remove the buckle. In addition, he removed approximately 80% of the vitreous fluid which should fill up in the next day or so. There is a chance that it could end up filling with blood instead of the vitreous fluid and if that was the case then they would have to go back in and remove the blood again with surgery.

They took some pictures of his left eye which I'll post soon. The doctor said this eye is a home run and should be a 20/20 eye.

Matthew had a stool last night. This means his intestines are working at least somewhat. They probably won't start feeding him today, but they might start as soon as tomorrow.

Matthew looked a little pale yesterday, so they ran some bloodwork on him. His platelet count and hematocrit were low, so they decided to transfuse him before the surgery. When we came in and saw him this morning, he looked much pinker.

The eye surgeon said that his low platelet count could have been the cause of the hemorrhaging in his eye. Even after the transfusion, his platelet count was still a little low, so the surgeon said that there's a good chance that he could re-bleed into his eye. They didn't see any re-bleeding during the surgery, so it may be fine.

Moving to Stanford...

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The vitrectomy for Matthew's right eye is now scheduled for this Saturday morning (tomorrow). It looks like he will be transported by ground ambulance to the Lucille Packard Children's Hospital up at Stanford some time today. After the surgery he will be staying there for a few days for observation in case the doctor needs to go back in for more surgery. Once they feel like everything looks good and when Matthew gets stable, he will be coming back to Valley Medical Center where all the doctors and nurses know him.

The surgeon's who would be performing the intestinal surgery don't think Matthew has Hirschsprung's disease so they are not going to do the intestinal biopsy at this time. They are also hoping that this feeding will work but if it doesn't then they will also test him for the Hirschsprung's disease when they go in to remove the stricture. They did start feeding him again yesterday at 2:00 p.m. beginning with 5 ml's every three hours. I was very concerned about this and expressed all my concerns, but two doctors assured me that it is such a small dose for him that it should be okay to start him on feeds again. The added benefit to this is that it acts as a gut stimulation. Apparently, if there is no stimulation in the intestines then it will sometimes cause the intestines to not work properly or not work at all. When they went to feed him his second feed at 5:00 p.m. he had the entire amount of milk as a residual plus some more. So how is it that you put in 5 ml's and then you get back 7 ml's of residual? They are thinking it could be that he still had some of the contrast dye still left in the stomach from the upper GI along with stomach acid which added to the increased amount of residual. I don't know how he did overnight, but I'll know more later today. Since he will need to stop being fed for 24 hours before eye surgery, they are not going to count this feeding towards whether or not he is tolerating feeds to determine if he needs intestinal surgery.

His respiratory status yesterday was much better although he continued to have a lot of drops in his oxygen saturation, but he seemed to recover much quicker than the day before. He is still on CPAP and is getting anywhere from 25 to 35% oxygen delivered to him.

I got to hold him for about an hour until we generated so much body heat that his respirations became very elevated because he was too hot so we had to put him back in his bed to cool off. Later in the afternoon, he was awake for almost 3 hours. It was such a wonderful blessing to be able to interact with him while he was in his quiet alert phase. I was even able to do some of the massage work that the physical therapist showed me how to do. He didn't like it at first, but when I continued again about 20 minutes later, he did much better the second time around. I think at first he thought when I was holding onto his legs and arms that I was looking for an IV site but once he realized I wasn't going to hurt him he calmed down. It was such an awesome bonding visit that we had and I was so very thankful that I had it.

Please pray that the transport goes smoothly without complications. Since I used to do transports like this when I worked for the ambulance company out here, there are things that can certainly go wrong. I guess to be more specific, please pray that all the equipment functions perfectly, the oxygen tanks don't run out of oxygen, that the batteries on the monitors and the isolette don't die in the middle of the transport and that we have excellent doctors or nurses that will care for him, handle him and transport him as if he was there own. Please also pray that the driver of the ambulance drives normal and smoothly and that he/she does not get into an accident. Please also pray that there is no trouble with the engine or tires of the ambulance and that it doesn't catch fire. (yes it can happen because I am living proof that when I transported a very sick baby in an isolette our ambulance caught fire due to an engine malfunction of some sort and it was NOT a fun time!) Please pray that Matthew gets great nurses and doctors at Stanford that watch over him. Please also pray that the surgery tomorrow goes smoothly without complications and that God will give Dr. Moshfeghi the rest he needs to be alert and to think clearly and positively and that God guides his hands throughout the entire procedure. Pray for Matthew to have the strength to pull through this with flying colors and that he is not in a lot of pain and that his recovery is remarkable. Please pray for us to have the continued peace and strength to get through this. I am nervous about all that is going to happen and scared to be doing it alone as Jason needs to be at work today. Thank you all so very much for your prayers and your comments. I love reading them all and am very encouraged by each and every one of them. Thank you again, and for those of you that we don't know, I hope that one day we will be able to meet you and have you hold the little boy that you've been praying for.

More eye surgery...

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The broviac surgery yesterday went really well without complications as far as we could tell. Shortly after having his broviac surgery, Matthew ended up having his eye exam. After having his eye exam, the doctor said that they needed to do more eye surgery again this morning at 7:30. His left eye looked really good and some of the bleeding actually subsided, so the doctor needed to go back in and laser those areas he was unable to do before. If he didn't go back in and do the areas he was unable to get before, then the retina could still detach in those spots and then all the previous work would have been done for nothing. His right eye on the other hand didn't look so good. There is still a lot of blood from before and even more bleeding has occured. Since there are areas where he was not able to laser before, the doctor is now talking about doing a vitrectomy on Matthew possibly next week. This can only be done at Stanford, so they will need to transport him there for the surgery. The vitrectomy is a surgical procedure where they actually cut the eye open and remove the vitreous fluid in the eye to help remove the blood and prevent retinal detachment. Then they will fill the eye with fluid and let the rest of the eye fill with water later on.

After the eye surgery this morning, the doctor thought the outcome of the left eye would be great and he was extremely pleased with the left eye. He was able to add 215 more shots of laser in the left eye. The right eye is still an unknown until they actually do the vitrectomy. However, he did say that the areas where he lasered before did look good and were holding, but he just doesn't know what is going on underneath all the blood. Matthew is resting right now and is back on the CPAP for additional respiratory support.

Yesterday was pretty stressful. I was at the hospital literally all day and then went back last night with Jason. When we saw Matthew last night he seemed to be extremely agitated and was having quite a few episodes of apnea (not breathing). I was afraid that he would "code" on them like before and they would have to reintubate him or something worse would happen. He was already on CPAP because he was having difficulty breathing after all the procedures he had done in the day, so the next step would have been intubation. Needless to say I felt like I couldn't leave him, so Jason and I ended up sleeping at the hospital last night. It kind of worked out because we had to be there early this morning for his eye surgery anyway, but those beds certainly were not comfortable at all.

After talking to the pediatric surgeon who did Matthew's broviac surgery yesterday he said he would like to try feeding Matthew again before doing the intestinal surgery. This is what I was pushing for before but the other doctors said that he needs to have the intestinal surgery to remove the stricture and that the feeding this time won't work. The surgeon who I spoke with yesterday is a doctor that nobody in the NICU has ever dealt with before, and I was so thankful that he was saying what I had been wanting all along. I don't know if the feeding this time will work or not, but I will feel much better knowing that at least we tried the feeding without adding all the other stuff to the milk one last time before the intestinal surgery (if he needs it). He is also scheduled to have an intestinal biopsy either today or tomorrow. Fortunately, this is done at his bedside so they don't need to wheel him down to the operating room for this procedure. The procedure occurs like he is having his temperature taken rectally where they go up through the rectum and slice off tissue samples of the large intestines. They tell me that it is not painful, but there may be some discomfort. They are mainly testing him for a disease called Hirschsprungs. This is a disease where the nerve cells that are normally in the intestines signaling the intestinal muscles to push the stool through are not there. This causes constipation and other problems when things get backed up. If he tests positive for Hirschsprungs, then they will need to go in and operate and remove the part of the intestines that does not have the nerve cells.

Please continue to pray for healing of Matthew's eyes and intestines. Pray that the laser treatment in his left eye today holds and that he'll never need surgery in that eye again and that the right eye does not have retinal detachment under the bleeding. Pray for his recovery and that he has minimal pain and that he is able to get plenty of rest. Pray that the feeding this one last time will work and that the Hirschsprungs disease tests come back negative. Pray for us to have the strength and peace to keep going through this. I am really tired today and feel pretty anxious about all that has happened and is going to continue to happen in the next few weeks.

Surgery tomorrow

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It is confirmed that Matthew will be going in for surgery tomorrow (Sept. 23) at 11:00 a.m. for his broviac (this is the deep IV line). They will surgically go in at the neck and go all the way down into a main artery that goes into his heart. From that point, he will have a branch coming out of his chest area. This is where they will be connecting the IV nutrition, draw blood from if need be and administer any meds there as well.

The doctors really feel that Matthew does need the intestinal surgery to cut out the portion that is constricted. Without getting into too much detail, they say that it will do more damage in the long run if they wait on the surgery. They were trying to work the schedule so they could do everything tomorrow, but that is not going to happen. However, they may go ahead and do an intestinal biopsy on him while he is under the anesthesia. I am told that this procedure is fairly non-invasive...it's kind of like getting an enema except they are removing tissue samples from his colon via the rectum. In addition, the eye doctor will be coming by to do a follow up appointment with Matthew to see how is eyes are doing. I don't know if he will actually do an eye exam on him or not, but I was told that if that was the case then they may do it while he is still out, so it won't really affect him.

Matthew was a little bit up and down on his oxygen saturation today. He was down on his weight a tiny bit and is no longer receiving any medications at this point in time, but that could change tomorrow. He was still sleepy most of the day, but he was more active than before. As usual, it was really fun being able to hold him.

Please pray for God to guide the hands of the doctors as they perform the surgeries and please pray for God to give Matthew the strength he needs to make it through the broviac, intestinal surgery and his eye appointment tomorrow. Pray for a quick recovery as well. Please pray for us as we go through another trying time with him. Continue to pray for the doctor's to have the wisdom they need when making decisions about him. Thanks again for everything!

5 Pounder!!!

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Matthew crossed the 5 pound mark last night (though it may not be his true weight since he still hasn't passed the contrast from the upper GI test). As you can see from the pictures, he's really looking like a normal baby now.

They put him back on nasal canula today, and he's doing fine. He was on ~30% O2 most of the day. Jenn and I both got to hold him tonight for a bit, and he loved it; he was passed out most of the time.

    

No Leukemia!!!

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The Leukemia tests came back early, and they were negative! We hadn't been very worried about it, but it's comforting to know that he doesn't have it.

He's still pretty tired from his surgery. He's been sleeping more today than usual, and he was having some brady episodes. He was getting too tired to breathe on his own, so they put him back on CPAP for the time being.

They did the upper GI test on him today. We don't know the results of the subsequent x-rays yet, but they did say that they were not seeing the contrast moving out of his stomach as quickly as they'd like. Hopefully we'll know the results of the x-rays tomorrow and we'll have an idea what needs to be done to correct the problem.

Results of eye surgery

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As you know, Matthew had his eye surgery today and as far as we can tell, everything went well. Unfortunately it can be anywhere from 12 to 24 days before we can know for sure if the surgery really worked. He was intubated for the surgery and we all thought he still would be after the surgery. Fortunately for his lung disease, they were able to take him off the ventilator and he went back on the nasal cannula and seemed to be doing fine.

The left eye did progress for the worse in the last two days and I was very thankful they went ahead and did the surgery on both eyes. He had 1100 shots of laser in the left eye and 900 in the right eye. His right eye was worse than his left and should have had more laser shots but because there was so much bleeding already in his eye they couldn't laser through the blood. So, this means that they may have to go back in and do more laser shots on his right eye. The doctor said that he treated the eyes pretty aggressively, but Matthew's eye disease was progressing rapidly so there wasn't much choice. The doctor did mention that there are complications with treating his eyes so aggressively and one of those complications could cause his eyes to shrink and Matthew would still end up with poor vision, or he could have cataracts or a few other things.

One of the other bit of news that we received from the doctors today was that Matthew is showing signs of having Leukemia. To confirm this, the doctors sent out some more blood work and it is going to be tested and the results should come back on Monday or Tuesday. If it is positive, then they will need to get a sample of his bone marrow to confirm that he has it.

Please continue to pray for healing for Matthew's eyes and for there to be no complications later. Pray that this will be the only surgery he needs for his eyes. Please also pray that he does not have Leukemia. Continue to pray for God's perfect timing in performing the other procedures, like the upper GI test and the intestinal surgery. Thank you all for your prayers today. They were definitely felt!!

Updates on Surgeries

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I have been praying hard that God will coordinate the timing of all these surgeries and procedures, and as it turns out, Matthew will only be having the laser eye surgery today. It was confirmed yesterday that they will be doing the surgery in both eyes. I spoke to the doctor that will be assisting the procedure and he said they will be putting Matthew back on the ventilator, he'll be given general anesthesia and the surgery should take about an hour or so. Before the surgery, they are going to dilate his eyes because they actually shoot the laser through the dilated pupil. They are tentatively scheduled for 1:00 pm but it could be as late as 3:00 or 4:00. Since this was an emergency surgery, it was "added" to the surgery list and may get bumped around a bit.

He was scheduled to have his upper GI test yesterday but for some unknown reasons (or as I like to think, it was God) they kept putting it off until finally the radiologist called late in the afternoon to cancel. The radiologist wanted to schedule it for this morning and as soon as I heard that they wanted to do it the morning of his eye surgery, I immediately jumped in to say that I thought there would be complications with the anesthesia and having contrast dye in his stomach. I always thought you had to have an empty stomach for at least 24 hours prior to surgery. Turns out I was right. The nurse who had Matthew yesterday agreed for the test to be performed this morning until I spoke to the doctor about the fact that Matthew won't be NPO (nothing by mouth) for 24 hours before surgery. As soon as I told them that he immediately jumped on my side and said that the upper GI can't be done before surgery. So, now with that long explanation, Matthew is scheduled for the upper GI on Friday, but of course it will depend on how stable he is after the eye surgery today. I often wonder what the heck would be going on down at the hospital if I wasn't there to defend Matthew...

In addition to all this, he is definitely scheduled for surgery on Tuesday to have the deep IV line installed. I believe it is called a Brovia or Broviac. The same surgeon who did Matthew's PDA ligation on his heart may end up putting the line in. If not him, then one of his associates. I am praying that Dr. Albanese be the surgeon who does the surgery, because he is the best surgeon at Stanford. It is unknown whether or not they are going to do the intestinal surgery at the same time as this Brovia surgery. They can't do the intestinal surgery on Matthew until the upper GI is done first and it will depend a lot on how Matthew is doing before they do the upper GI. So potentially, he may have the other surgeries on two separate days next week.

Please pray that God gives Matthew the strength he needs to make it through the surgery. Pray that God clears the doctors' minds of stress and that He guides their hands during the laser surgery and that He gives them strength and endurance during the procedure. Pray that this surgery will fix the problems with his eyes and that they won't have to do a second surgery. Pray for Matthew to recover from this just fine without complications. Please continue to pray for us to have the peace we need during and after the surgery that everything will be alright. Thank you all for your support.

Preparing for Surgery

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Yesterday, Jason and I had a couple of meetings with different doctors only to find out that Matthew is going to need surgery this Thursday. The surgery is scheduled for Thursday at 1:00 pm. He is going to need laser surgery on his eyes. They have not reached the "plus" stage yet but the doctor feels that they will be there any day because they progressed so rapidly for the worse in the last five days. The left eye which was the better one has also progressed so rapidly that it turns out the doctor may end up doing laser surgery on both of his eyes. This is a rare surgery that they have to perform and the doctor said that of the 300 babies he has seen at Valley Medical, Matthew will be the first one he will do there. This doctor has done the surgery with other babies, but just not at Valley Medical Center. There are only two other doctors in the U.S. that could perform this kind of surgery and one is located in Los Angeles and the other in Detroit. Thank God for living in the Bay Area!

In addition to the laser surgery, the doctors are thinking they will go ahead and perform surgery on his intestines. We just found out that the gastrograffin enema he had last week showed he does have a stricture, or narrowing, in part of his intestines. They still need to do the upper GI test on him to see if there are any other areas with narrowing in the small intestines. They may do it today before surgery on Thursday. The intestinal surgery will consist of cutting out that portion of the intestine that is constricted and then sew the two pieces of intestines back together if they are able to. If the intestines are inflamed or they are not healthy enough to sew back together, then they will connect his intestines to a colostomy bag until the intestines have healed enough to sew back together. At the same time as doing all this, the doctors are debating whether or not to go ahead and do the liver biopsy since he'll be put under anyway and it allows the doctors to see the liver better and in doing it this way it is less likely to cause excessive bleeding or damage to the liver. Unfortunately, Matthew's platelet count is low and he may not clot very well. (The platelets help with the clotting that is needed when you get cut open)

The downside to all of this is that even though they do the surgeries on Thursday that doesn't mean it is a fix all. We found out yesterday that he may end up having multiple surgeries on his eyes and intestines. Jason and I were under the impression that once you had the surgery everything was better and that was the end of that, but the doctor's mentioned that with his eyes, more of the bad blood vessels could still continue to grow after the old ones were lasered and that he could potentially need a second surgery. With regards to the intestines, scarring could occur or another stricture could form in the same area, so they would need to go back in and do the same kind of surgery again.

So what does all of this mean? We don't really know...all we do know is that if he doesn't have the eye surgery he will go blind for sure and if he doesn't have the instestinal surgery, then he won't ever be able to eat food again because he couldn't pass it along. We were also told that some babies have had to stay in the hospital for as long as a year because of intestinal problems and repeated surgeries. Either way, Matthew won't be able to have breastmilk for several more weeks and will continue to be fed intraveneously. Since the IV lines they put in his head didn't go as deep as they thought, this means they will have to perform another type of surgery on him on Tuesday to put in a deep line that will last a long time for his IV feedings.

I know God certainly knows the timing of everything and I believe He helped prolong the eye surgery the last few weeks because of the intestinal infection or whatever he had was going on. I believe God knows best on whether or not the doctors should do all the surgeries at once, or if they need to do them separately. Please pray that God gives the doctors the wisdom they need to make the right decisions about performing these multiple surgeries. Pray that God gives them plenty of rest and that He guides their hands during the procedures. Pray that these surgeries will fix the problems with his eyes, intestines and liver completely and that they won't have to do a second surgery. Pray for Matthew to have the strength he needs to endure these procedures and that he recovers just fine without complications from them all. Pray that he will not bleed out when they do the surgeries. Please continue to pray for us to have the peace that everything will be fine in the long run, no matter what the outcome is. Thank you all for your support.

Hanging in there

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Matthew had his eye appointment on Thursday and the doctor said that his right eye (which was the worse one) is getting slightly better and the left eye (which was the better one) is getting slightly worse. So far he doesn't have the plus disease where they need to do surgery. But again, it can change at any time. Please keep praying that his eyes heal completely.

On Friday, Matthew had the deep IV line put in along with another peripheral line. Unfortunately, both of them are in his head because he doesn't have any more veins to use elsewhere. There is one right in the front and in the middle and the other one is on his left side near the top. He has tape all over his head and it just looks painful.

The little guy is a trooper and I must say he is an inspiration to me. This has been an exhausting week for me spending A TON of hours at the hospital but when I see him and all that he has gone through, I always feel like I get an energy boost to keep on going. Even though I spend countless hours of waiting, talking to the doctors and helping the nurses, what I go through is nothing compared to him. He has been through a lot (to say the least) and is one of the bravest kids I know.

Unfortunately, next week brings only more tests for him. The GI specialist is planning on doing an upper GI test on him after Wednesday. They are doing this to see if he has any strictures in the intestines. The gastrograffin enema only showed the dye going up so far into the intestines from the bottom, but now they need to go in from the top with dye to see it all. Hopefully this test will tell them why his colon is still small and his small intestines are dilated and why he is having residuals and bloody stools. If they find a stricture, then they do surgery to cut it out and sew the intestines back together. If they don't see anything obvious, then they do surgery to do an intestinal biopsy to test for certain diseases and to see if they can see any strictures that way. Surgery will not happen next week unless they see something that requires emergency surgery. We will keep you posted on what they find out. Of course in addition to all this, he will have his eye appointment again next week.

Some good news though, is that the expanded panel of tests for the Cystic Fibrosis came back negative. There was a test in question that looked positive but according to the geneticist, it was negative. Of course we are not out of the woods until we can do a sweat test on him and that won't take place until he is about 4 to 6 months old, "corrected age". This means that when he is 4 to 6 months past his original due date of October 10th.

Please keep praying that God gives the doctors the wisdom to make the right choices and that he gives me the insight as to when to step in and say yes or no to the doctors and to ask the right questions. Please pray that this upper GI test tells them something that can be easily resolved. Pray for continued healing of his eyes, liver and his intestines. Thank you all so very much!

Doing better

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Yesterday Matthew did not have his eye appointment so they ended up performing only one test on him, which was the gastrgraffin enema down in radiology. They didn't see any blockage in the intestines, however the gastrograffin dye did not go all the way up in the intestines, so they may try to perform a test where they do the dye starting from the top instead of through his bottom, so they can see the dye from start to finish.

He is scheduled for the deep IV line today along with the eye exam. Fortunately, everyone there knows NOT to do both, even the nurse who has never had Matthew assured me they wouldn't do both today. They are waiting until later to hear from the eye doctor to see if he will make it today or not. He was scheduled for yesterday, but he didn't end up making it because he was too busy at the clinic and that's why they went ahead with the enema. Let's pray that the same goes for the deep IV line and eye situation today.

When I spoke to the nurse this morning, she told me that some of his test results are back and his liver tests look like they are improving and his direct bilirubin levels are coming back down. Praise God for answering our prayers! Unfortunately, they are not back down to where they need to be but at least they are going in the right direction. Please keep praying that his liver starts to function properly and that the issue with the bile ducts gets resolved completely for the better.

He is still on the nasal cannula and is getting about 30-35% oxygen. He is more active today, so he must be feeling better. He was weighed last night and he is up to 2041 grams or about 4 1/2 pounds. He is really starting to look chubby too. We'll try to get some new photos of him up soon.

Please continue to pray for healing in Matthew's eyes, liver and intestines. Thank you all so very much for your prayers. Praise God for his faithfulness in answering our prayers!!

Off the feeding again...

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Just like I thought!! I knew it was too soon to start feeding him again. Turns out that Matthew was not tolerating the feedings because he was having a lot of residuals and it was over 25% of the total amount that they were feeding him. In addition, it looks like he is not pooping again. It appears that his intestines are still dilated so they are going to hold off on the feedings like originally planned. Gee, I could have told them that!! The doctor that made the decision to start his feedings again is a very good doctor but he only works at the hospital once a month and he flys in from Boston, so basically he doesn't know Matthew like I do and I was really concerned when he wanted to start feeding Matthew again so soon.

I don't know if you know, but the hospital where Matthew is at is a teaching hospital so every two weeks he gets a new doctor. We have made it all the way through all the doctors they have on staff, so we are starting over again. The new doctor that has Matthew today has been with the NICU for over 20 years and is really good. He had Matthew when he was first born so we are familiar with him, however It is still hard when they switch doctors on you. Today Dr. Kim wanted to take Matthew down to radiology to do another gastrograffin enema to help him poop and to see if there is some sort of blockage in the intestines. They had about 7 new admissions today so they were really busy with the new babies and did not get to it. I am sort of glad because Matthew needs time to rest. Unfortunately, his eye appointment is tomorrow and they were still talking about doing the enema tomorrow. I had to step in and tell at least 5 of the doctors about what happens when he has his eye appointment and when they push him to do something else the same day. So I am hoping that they hold off on something tomorrow. Then to top it off, they wanted to try a second attempt at getting that deep IV line into Matthew today but I finally convinced them not to do it, so they may try to do it on Wednesday but that may conflict with one of the other tests. I feel like I really need to be down at the hospital a lot this week to make sure the doctors don't try to do too much with him too soon again.

So far he is still on the nasal cannula, but he is no longer on room air. They've had to bump him up between 25 and 30% oxygen for most of the day. This may be a sign that he is getting tired and may end up on CPAP. He is still cranky because he is not getting food, but I did get to hold him for about an hour today and he slept the whole time. I just love holding him!

Please continue to keep Matthew in your prayers and pray that his eye appointment goes well and that his eyes are actually improving. Pray for the doctors and nurses that are taking care of him to have the wisdom and discernment when making decisions about his care and tests. Pray that the doctors will be able to finally figure out what the problem is with his intestines. Please pray for God to give me insight about the timing of his tests and the ability to step in at the appropriate time and say something to the doctors.

Off the ventilator

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This morning Matthew pulled out his own ventilator tube. I guess he thought he had enough of that! Normally when you come off the ventilator, the next step is to go onto CPAP, however, this time they did not want to put him back on CPAP because of the amount of air that is forced into him with this machine. They thought it would introduce more air into his stomach and intestines and since he was already having problems with that, they didn't want to aggravate it more. So, instead they put him on the nasal cannula at 2 liters per minute at room air (21 % oxygen) and he was doing fine. In fact his oxygen saturation was in the low to mid 90's, with occasionally hitting the 100% mark. He may get too tired being on the cannula, so they may have no choice but to put him back on CPAP. But once they do, I am sure they are going to try sprinting him between CPAP and cannula until he can handle being on the cannula alone.

The shocking thing that happened today was that they started feeding him again. They started out at 10 ml's every 3 hours. So what is so shocking about that? Well, when they first started to feed him they decided to give it to him in a bottle for the first time ever. He actually sucked on the bottle and took 5 of the 10 ml's before it tired him out. They said he was still uncoordinated in sucking, swallowing and breathing at the same time, but he will get better as time goes on. This means that I will probably be able to put him to the breast and actually feed him sometime soon! YEAH!!! I am very excited, yet at the same time, I am skeptical about them starting everything back up again so soon.

When they weighed him last night, he was weighing in at 4 lbs 5 ounces, so he was still growing even though he was on the IV nutrition.

Please keep praying that he does not have any setbacks and that his intestines have healed completely. Please keep praying that the nurses and doctors make the right decisions with him. Pray for his eye exam tomorrow and that he doesn't crash again. Praise God for the healing He's done over the last few days and for giving us the strength and peace to make it through this.

Better and bizarre...

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Okay, this has been a weird day. First and foremost, Matthew is doing much better today. He is a lot more active and is having fewer episodes of dropping his heart rate and oxygen saturation. These are all good signs that he is feeling much better. In addition, he is starting to have more normal looking stools without blood in them. His color even looks better today. They don't want to keep him on the ventilator for a long time because of his Chronic Lung Disease, so they are starting to wean him off it and they may extubate him this weekend. Praise God for answered prayers!!

So, the bizarre thing that happened, is that the doctor who has Matthew tonight and this weekend thinks he does NOT have NEC, but does have a problem with his intestines and some kind of unknown infection. We looked at several of his x-rays tonight and they show the intestines are dilated but they don't have the pneumatosis (air in the intestinal lining) that shows signs of NEC. The bizarre thing is that Jason and I saw the x-rays the other doctor showed us which had the pneumatosis. So what's so bizarre about that? Well, tonight the x-rays that we saw yesterday, couldn't be found. We saw ones that looked similar to the ones from yesterday but they did not have the pneumatosis. Hmmmm...bizarre. Anyway, the doctor said that they are going to monitor his intestines and that they may actually try to feed him a tiny bit of milk over the weekend, depending on how they look. The theory behind this is that she doesn't think he has NEC, and the milk will actually help reduce the amount of acid build up in his stomach so there is no need to wait a couple of weeks to start back up on feedings. They did assure us that they won't give him milk until his intestines are looking much better.

To add to this bizarreness, they think the reason he might have crashed so hard was that he was having a systemic reaction to the eye drops that he received. Apparently, these drops are pretty powerful drugs and he was having a reaction to them. There is another baby in the NICU that also had a similar reaction to the eye drops and they had to perform CPR on him too. So with the eye drops and the morphine they gave for pain while trying to get the deep IV line, he just couldn't handle it all. The day was stressful enough for him and then when you add the drugs on top of that, he just couldn't tolerate any of it. This of course makes me a bit nervous for his next eye appointment.

I am very encouraged today with his condition and continue to feel at peace with all that is going on. I really feel that God has answered our prayers! Thank you all very much for your prayers. Please keep praying, especially for him to really not have NEC and that his intestines heal completely and whatever infection he has goes away. Please also pray that the doctors can figure out what is going on with his intestines because they are not sure about what is happening...AGAIN! They are still stumped with him, as usual. I personally think that God is healing his body before they can diagnose anything and He is not letting things get worse enough to truly put a label on anything. Afterall, they keep saying that Matthew never has the "classic" signs of anything and he's an enigma which they can't figure out. This apparently is pretty unusual, because normally they can tell you what is wrong, but they are still scratching their heads with him. Let's take the NEC for example, they saw x-rays that showed signs of him having it, then suddenly his x-rays aren't showing anything like what we saw. Did he have it and God healed it so now they think he doesn't have it, or did he really have it at all? All I can say is that Jason and I saw the x-rays that showed signs of NEC, now we don't see it on the x-rays. Who knows... obviously only God knows, and I am truly thankful that God is in control and that Matthew is doing so much better today. Give thanks and glory to God!!!

Good day gone bad...

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Well, what I thought started out to be a decent day for Matthew turned into a very bad day for him. Originally, his x-rays showed that his intestines looked slightly better today, but definitely not normal. So I thought that was a very good thing. Then when they were trying to put in a very deep IV line for his nutrition he started to show signs of distress because he was not tolerating it. Unfortunately, most of his veins are blown because they've been used so much over the last few months that there is nothing left to use. They tried in at least 5 different places on his body and during that time he kept dropping his heart rate and oxygen saturation several times and it was difficult for him to recover. Then about 8:30 tonight, Matthew had a gastric hemorrhage in his stomach. His stomach blew up and got very distended and they ended up pumping a lot of blood out of the stomach. His heart rate dropped so low along with his respiratory status that they had to perform CPR on him. Unfortunately, they had to reintubate him, so now he is back on the ventilator. They took another abdominal x-ray and it doesn't look as bad as they thought it would and fortunately his intestines did not perforate. They don't know if this is the cause of the infection and the intesinal problem or if this is just a reaction to being so stressed out today and the last few days because of the infection. With the eye appointment today, the many attempts at getting a deep IV line and the infection, it was all too much for him to handle and now he is really stressed out and needs lots of rest and recovery. Unfortunately, they had to draw more blood from him to run more tests to find out what else is going on with him. He'll be getting abdominal x-rays every few hours and will be monitored very closely over the next day or so.

The results of his eye appointment showed that they are not better, but they are not worse. Thank God for that because there is no way he could have handled surgery today. The doctor did say, however, that he is still in that window where things could change either for better or for worse. So the next appointment will be this Tuesday coming up.

Right now, I am not sure how I feel. When the doctor called me I was in a breastfeeding class so my phone was off. She left a message that sounded panicky and for me to call her ASAP. My first thought was something bad happened and Matthew is dead. Then when I got into the hospital the doctor met us at the door before going in to scrub up. She told us what happened, and I immediately thought that what happened is okay and at least he's not dead. I don't know if I had that response because I am in shock, or numb from hearing all the bad news about him over the last few days, or if I am going into fight mode and then I'll break down later, or if it is just a peaceful feeling like he's going to be okay. It is a very odd place to be and honestly I don't think I can really describe how I feel. I feel like he is going to be okay, but I really just don't know. It is hard to see him laying there limp and reintubated, but then again, we've been here before, so maybe this just seems like a familiar place...I don't really know. I am just thankful that he is not dead and that the x-rays are not as bad as they thought. I am truly thankful that he did not need to have eye surgery because I am not sure he would have made it through it.

Please, please, please keep Matthew in your prayers for complete healing and recovery from all this. Please pray that God gives us his peace, comfort, strength and hope in the coming days.

It's confirmed...

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Matthew has the NEC infection. It was really scary when the doctor told me that he has a really bad infection that had spread to a lot of his intestines. This of course was followed by her stating that there is a high mortality rate associated with NEC. I couldn't hold it in and just lost it in the hospital. They had been taking several x-rays of his belly all day to see if it was getting better or worse. Thank God for the last x-ray at 4:00 showing that it was not getting worse. So, it looks like Matthew has the beginning stages of the NEC infection and they are giving him three kinds of antibiotics and they will be stopping his feedings of breastmilk for a couple of weeks, maybe three or four, depending on how things go. They did put him back on the IV nutrtion, which unfortunately, will make things harder for his liver but they don't have any choice because he needs the nutrition to continue to grow and get stronger which will help him get over this infection. It is really hard to see him fussing all the time because he is hungry and he doesn't have the satisfaction of having a full stomach. Fortunately, Matthew is doing good keeping his blood pressure and his respiratory status relatively stable. They said it could be worse if his blood pressure was dropping and if he had to be intubated again. Let's just pray that he doesn't need to be reintubated, that his blood pressure and heart rate remain stable and that the doctors have caught the infection early enough that it won't cause damage to the intestines. Pray that this infection can be resolved by simply using the antibiotics and letting his intestines rest from digesting food and the drugs they put in the milk.

In addition to all this, Matthew had an abdominal ultrasound today for the GI specialist to look at his liver and gall bladder better. Without getting into a lot of details, it looks like the problem with his direct bilirubin levels can be narrowed down to the bile ducts in the liver not working. The radiologist reviewed the older scans from the hide-a-scan and this ultrasound and determined that his liver is NOT slow to excrete into the bile area and it simply isn't excreting at all. This could mean that his bile ducts are completely blocked, damaged or that he doesn't have any. So they are going to do another test on him which is similar to the hide-a-scan to check for damage in the liver, the gall bladder, and now the intestines since he has the NEC infection. This of course won't take place until he is completely over the NEC infection, but they hope this will be able to tell them more information about the bile ducts without doing invasive surgery. If this doesn't work, then they will need to do a liver biopsy to see what the problem is.

On a positive note (if you can believe there is one) the head ultrasound today showed that the abnormality in his brain is considered to be gone. There is a tiny tiny bit of it left, but they are saying it has completely resolved. In addtion to the abnormality resolving, the original grade 2 bleed that he had within the ventricles is also continuing to go away and the ventricles are less swollen, which is a really good thing.

To top off the wonderful day I had, I was reminded of the fact that Matthew has his eye appointment tomorrow, which he does not tolerate at all. I am truly scared to find out what the results are going to be and to wonder whether or not he'll need emergency eye surgery. I don't think Matthew could take the eye surgery while he is this sick, so I don't know what they are going to do if he needs it. I just continue to pray that his eyes are getting better without having any scarring and that he won't need the surgery and that his eyes will be fine.

I have shed many tears today and I am emotionally spent once again. I honestly feel like I can't keep going through this and I really want off this wild emotional roller coaster. I am at the end of my rope with all this and I am begging God to heal Matthew completely so he can be healthy enough to take home soon. I thought we were on our way to having nothing but good days from here on out, but it just goes to show that Matthew is still in a very fragile condition.

Please continue to pray for complete healing for Matthew and continue to pray for peace and strength for us to keep going through this. Thank you all very much.

Possibility of NEC...

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There's nothing like an early morning call from the hospital waking you up to tell you that Matthew may be developing the NEC infection...About 3:00 this morning Matthew had a really large bloody stool. The lab work they did on the stool confirmed there was blood in it so they went ahead and performed an abdominal x-ray. This showed some air and distention in the bowels which is very indicative of the NEC infection, so they went ahead and started him on antibiotics. Currently they have stopped the feeds and are just giving him IV fluids. They are hesitant to put him on the IV nutrition because this causes his direct bilirubin levels to go up and they are already pretty high. Fortunately, the GI specialist was coming to see him today anyway, to help figure out the problem with his liver, so they are going to talk to him to find out whether or not they should start him on the IV nutrition again. The other bad thing about this nutrition is it can cause swelling of the liver if he is on it for too long. Unfortunatley, they have had to put him on it and off it for awhile because everytime they get him up to full feeds with all this other stuff added to it, he starts to get an infection.

Please add this to the list of prayers for him. Pray that this is not the NEC infection and that the antibiotics kill off whatever is causing the infection. Please also pray that God gives the GI specialist and the other doctors the wisdom they need to make the right decisions with his feeds and also in diagnosing his liver issues.

More tests...

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The results of some of the tests they did last week have come back and they were slightly elevated, but nothing to be concerned about according to the doctors. Some of these tests were to test his liver to find out why his direct bilirubin levels are still high. The results of the hide-a-scan, where they injected dye into his system, told us that his liver is taking it up fine but it is extremely slow to excrete it into the bile area. They don't know why this is happening so they are running more blood tests tomorrow. They are trying to find out if there is a blocked bile duct or if the gall bladder is swollen or if there is something else going on. In addition, they are going to do an abdominal ultrasound tomorrow and if the GI specialist can't find a reason for the liver problem, then they may have to do a liver biopsy. This is where they perform surgery on his liver and take a sample of it for more tests. I hope they can find out a problem with him so they can fix it. This last weekend, he was looking really yellow because of his high bilirubin levels. They decided to go ahead and give him a blood transfusion this week. They transfused part of it yesterday, and part of it today.

They took more blood from him to test for Cystic Fibrosis again. The first time they ran the test, it only tested for about 85% of the mutations of the gene. This time they are running an expanded panel to test for more of the rare mutations but it still won't cover all the mutations because they don't have the really rare markers to test for. They are running the CF test again because of the liver issue and some calcium deposits they found in the intestines which are indicative of a perforation of the intestines, which usually is found in babies with CF. So here we go again...

His eye appointment is on Thursday this week, and once again, if it has progressed to a stage 3+ then they will do emergency eye surgery.

One good thing that has been happening with the little one is that he's not so little anymore! He is continuing to gain weight and currently he weighs 1805 grams or 3 pounds 15 2/3 ounces. This means that he'll probably get over 4 pounds tonight. He is currently getting 35 ml's of breastmillk every 3 hours and he also has a lot of fat and nutrition supplements added to it to help him gain more weight.

I am at a loss of what to pray for because all of this is overwhelming. I want Matthew to be healthy with no problems or complications down the road, but I don't feel like that is going to happen. My faith is being tested and I don't feel like God is listening. I have been struggling with the power of prayer and accepting the outcome even if it is not what I want. There's a verse in the bible that says Lord, I believe, help me overcome my unbelief... and that is exactly how I feel today.

In limbo...

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Matthew had his eye appointment yesterday and the doctor said that he is still getting worse. His right eye is worse than his left. In his right eye it is considered a stage 3 and when it gets to a stage 3+ then they will perform emergency eye surgery. The doctor said he was surprised that it wasn't there yet. He said not to worry because there is nothing they can do at this point until he reaches the 3+ stage. He did say that it was almost inevitable at this point that he will need the surgery. The doctor also mentioned that even if his eyes did get better rather than worse, he will probably have scarring in his eyes which will result in severe nearsightedness, like a minus ten. This means that Matthew may have a difficult time seeing clearly a foot or so in front of him. He will continue to have eye problems throughout his life as well. Unfortunately, the scarring could also cause damage to the retina later in life and that will have to be monitored regularly to make sure that the retina does not detach, due to the scarring, and cause him to go blind.

He was weighed again last night and is now up to 1704 grams or 3 3/4 pounds. He is starting to retain fluid so some of that weight gain could be part of the fluid retention. The doctors say that he is retaining fluid primarily due to his chronic lung disease and they are giving him lasix again to help his body get rid of the extra fluid. If he continues to gain weight like this he'll be up to four pounds easily by next week. Yeah!

They also increased his feeds again yesterday and he is now getting 34 ml's of breastmilk every 3 hours. So far he seems to be tolerating it and is still pooping and urinating on his own without help.

On Wednesday, they performed a procedure called a hide-a-scan. This is where they injected dye into his system and then they viewed it with a machine to see where the dye is going. The main purpose of this was to see what is going on with his liver, gall bladder and bowels. Since he is still having liver problems they want to make sure his liver has all the necessary components it needs to function properly. I am still waiting for the results. The results may be here by this afternoon, but I won't hold my breath. The next time they draw blood will be on Sunday for more testing. I'll try to find out what they are going to test him for and then let you know when we have the results.

For now, continue to pray for a miracle for his eyes to heal completely and without scarring. Continue to pray for his strength especially in going through all these tests. Please pray that he continues to grow and develop normally and without lasting effects. Pray for us to not start worrying and thinking the worse again, which is very easy to do when these tests are being done on him. Thank you for your prayers and support and the great comments. Even though we may not respond to them, we really do appreciate receiving them. Thanks again.

Off of CPAP

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Okay, much to my surprise today, Matthew came off of CPAP around 1:00 or so and went on the nasal canula. Then he was doing so well that they took him off of it and just left him on room air. It was amazing he was doing so well too. He would occasionally drop his oxygen saturation and by about 8:00 pm they had to put him back on the nasal canula because he was starting to work pretty hard. He may end up back on CPAP later tonight, but it was really exciting to see how well he was doing without it.

They are going to be running a bunch of tests over the next couple of weeks to try and get some final answers to the problems he has had in the past and is still having. They want to know what the cause was or is and try to fix them before he goes home. Please pray that all the tests come back normal and that everything is just do to being premature and that there are no lasting side effects of being premature. Please also pray for his eye appointment on Thursday. Since his eyes got worse so quickly, they are concerned that they may be on their way to the other stages that can eventually lead to being blind. If his eyes are worse on Thursday, they could potentially perform laser surgery on his eyes that night. Please pray that his eyes are not getting worse and are actually getting better. (the doctor says this can happen)

We will keep you posted about the news.

P.S. I absolutely loved giving the little stinker his first bath. He kept sliding all over the place and I couldn't stop laughing but I finally got the hang of how to hold on to him and rub him down. :) I can't wait to do more!

No New News

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Matthew's still doing great... He's eating and pooping with the best of them. He's up to 32ml every three hours now, which is still slightly lower than the ideal (160ml/kg/day). The nurses have told us that once he was on full feeds, they could move above that point (he was at 180ml/kg/day the last time he was on full feeds), so we're hoping they'll be increasing his feeds soon.

The CPAP is really starting to give Matthew a little pig nose (you can see it in the first picture yesterday pretty clearly), so we're trying to get them to switch him to another type of CPAP called Mask CPAP that has a little mask that fits over his nose. Hopefully it will take some of the pressure off of his nose and allow it to return to its normal shape.

Now that Matthew's doing so well, we're going to reduce the website updates to every couple of days. If there is any important news, we'll get it on the site right away.

Splish Splash...

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Stinky Boy got his first bath today. 9 weeks of stank finally got washed off of the little guy, and he smells great. The nurse showed Jenn how to hold and wash Matthew, then Jenn gave him the bath. He really enjoyed his bath too. He was very alert and relaxed the whole time. After his bath, he got some clean clothes and I got to hold him for an hour or so while he ate and slept.

He's continuing to grow. He got to help weigh him tonight, and he put on another 20g since thursday. He's now up to 1616g (3lb 9oz).

    

Past the 3 1/2 lb Mark

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Matthew is continuing to grow (though somewhat slowly this week). He was up to 1596g (a little over 3lb 8oz) as of thursday night.

Matthew's eye exam results have come back. Although we haven't talked to the doctors yet, they did say that his left eye only shows a mild change, but his right eye shows a moderate change. We don't know yet whether a moderate change is something to be concerned about or not.

Matthew's been on CPAP for over a week now. He's still desating occasionally, but generally keeping his O2 sat in the high 90s. Up until now, the doctors wanted to keep his O2 levels between 88-94%. Now that they know his eyes are having a little trouble, they want to keep him on higher levels of oxygen (94%+).

Another eye exam...

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The little guy had another eye exam today, which always wears him out so much. It is hard to see him like that. The test results weren't available when I was there, but I hope to hear something tonight or tomorrow.

He is now on complete feedings for him (30 ml's every 3 hours) and so far he seems to be doing well. Although they just put him on full feeds this afternoon. He is also pooping a lot without the help of suppositories or enemas, which is a good sign.

His direct bilirubin levels did go back up again. This seems to be the thing that happens whenever he is on the IV nutrition. So they are giving him a new medication in the breastmilk that helps bind up the direct bilirubin and then he excretes it in his stool.

They are thinking about running more tests on him to determine the cause of the abnormality that he had in the brain. I can't remember if we told you that it turned out to be a blood clot in a very unusual place in the brain. So, I 've been tested for the blood clot disorder and we are still waiting to hear the results of them. Personally, I am really sick of hearing about more tests being done on him and don't want to know about any more tests being performed unless something is completely wrong.

I have been working on Matthew's room lately and am getting really excited about him coming home some day!! I will sit in his room and daydream about holding him, feeding him, playing with him, teaching him, etc. It's nice to know that this is more of a reality now!! :)

Back in the bubble...

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Today Matthew went back into the isolette because he is not maintaining his body temperature so well. I was surprised to see that he was in an open crib anyway because at one point they said that they usually don't take babies out of the isolette until they are about 1900 grams (a little over 4 pounds). Since he is only 3 pounds 7 ounces, that would explain why he is not maintaining his body temperature so well, but they at least gave it a whirl to see if he could. Personally, I am glad to see him back in the isolette because they are really busy again and just had several new babies that came into the room which are pretty loud... so being in the isolette will help him sleep better (less noise) and of course sleep is what he needs in order to grow.

They have taken him off the IV nutrition and fat supplement all together, but they are still giving him his medications intravenously. They hope to give him his meds by the mouth again once he is back up to full feeds completely and tolerating it pretty well.

He is still on CPAP!! Yeah!!! We are pretty excited about that and not to mention he has only needed about 22 - 23% oxygen. Woo hoo!!! :)

Please continue to pray for Matthew's progress to go up and up from here on out. Please pray that he tolerates all the feeds and that he never gets the NEC infection. Please pray that he doesn't get any more infections. Please also pray for us for strength. I am not feeling well these days and I am getting burned out on being at the hospital every day...not that I don't want to see my sweetie, I am just getting tired.

Chubby Little Boy

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Matthew's really starting to get his baby fat. They haven't weighed him yet tonight, but he's clearly continuing to gain weight. He was up to 20ml of breastmilk every 3 hours earlier today, and continuing to poop and pee regularly. They've taken him off his IV nutrition (although he's still receiving extra fat via an IV). As long as he continues to tolerate his feedings, they'll be stopping the IVs completely sometime tomorrow.

Still Doing Great

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Matthew is still doing great. He's on room air virtually all the time, and rarely desats anymore. He's been stooling a fair amount lately, and they're continuing to increase his feeds (14ml as of the last feed).

He's up to 1550g (3lb 6oz), which is exactly double his birthweight. By the way, if you haven't used Google's calculator before, you should really check it out; it's very cool. Go to www.google.com and search for 1550 grams in ounces or 1 foot in lightseconds.

Past the 48 Hour Mark

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Matthew made it past the 48 hour mark today (60 hours as of this entry), and is doing great. He's on room air most of the time, and hasn't had any significant desats. I got to hold him tonight for about half an hour, and he just loved it. He was so zonked out that he didn't even wake up when I put him back in his bed.

Matthew continues to gain weight. He was up to 1520g (3lb 5oz). They also increased his feeds to 6ml every 3 hours, and the plan is to increase it 1ml every 12 hours. His primary night nurse Madhu thinks this is a little conservative though, so she's going to ask the doctors if his feeds can be increased more rapidly.

Matthew was moved out of the isolet today and into a rocker bed. This bed slides forward and backward while rocking from side to side. It also makes noises that are designed to simulate the sounds that a baby would hear if it were in the womb.

Still on CPAP

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Matthew is still on CPAP today. He's been on 32 hours as of this writing, well on his way to the 48 hour mark that the doctors were hoping for. He's doing so great on it that it's almost a certainty that he'll be staying on it for a while. When I stopped by earlier today, he had been on room air (21% O2) for most of the day.

Jenn got to do skin to skin this afternoon for about 45 minutes. Matthew did extremely well. He was on approximately 25% O2 while she was holding him and his heart rate, respiration rate, O2 sat, and pCO2 were all basically perfect.

Breathing, Eating, and Crying

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Breathing: Matthew was extubated today around noon. He's back on CPAP and so far doing well. The doctors said that the first 48 hours is really critical. If babies make it past that point, it's generally smooth sailing. In case you haven't memorized this entire site, here's a quick recap on his breathing history. He's been on a ventilator virtually 100% of the time since he was born about 8 weeks ago. He's spent about half the time on a conventional ventilator, and the other half of the time on a high frequency ventilator. He's been on CPAP twice during that time, but only lasted 9 hours the first time and only 5 hours the second time. He's quite a big bigger now than he was then, so we're hopeful that the third time's the charm. He definitely doesn't seem to be working as hard this time as he has been, so it's certainly a possibility.

Eating: Surprisingly, they also resumed his feeding today. They've started him at 5ml every 3 hours, but will probably quickly ramp him back up to full feeds as long as he doesn't show any negative signs. They told us before that full feeds for a preemie is 160ml/kg/day, but before they stopped the feeds the last time, he was being fed more like 180ml/kg/day. Given his current weight (as of two nights ago), that would be more like 32ml every 3 hours.

Crying: Now that Matthew's been extubated, you can hear his little vocal chords. He can't get much volume yet, but at least he doesn't look like a mime crying anymore.

Growing Again

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Matthew is up to 1410g (3lb 1.5oz). Since he's growing so much and his infection is almost gone, they're currently planning on resuming his feedings tomorrow after the doctors make their rounds. They will start at a reduced level and then increase them until he's back to full feeds. They're also planning on extubating him this weekend.

More of the same

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Matthew continues to be about the same. His CRP levels continue to fall, so they're talking about resuming his feedings on friday and extubating him on saturday or sunday. They took his skin temperature probe off today since he's doing a good job at maintaining his body temperature. They usually don't do that until the babies reach 1500g (he's only 1360g or about 3lbs). This means we'll finally get to start putting some clothes on him.

They've started giving him a steroid inhaler to help alleviate swelling in his lungs. This should help his transition off of the ventilator.

Thank Goodness For Insurance

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We got one of the first insurance statements today for Matthew's stay in the hospital. For 7/6 through 7/20 (2 weeks), Matthew's bill was just shy of $250,000. The cost of his care will certainly go down during his stay (as the required amount of care, medication, surgery, etc. go down), but it's almost certainly going to top $1MM.

Matthew's still doing about the same. His blood tests indicated elevated CRP levels, so they are continuing the antibiotics. He's lost a bit of weight now that he's back on IV nutrition; he's down to 1304g (2lb 13.5oz). He's had fewer bradycardia episodes today, and his oxygen requirements have been lower. They may try to start his feedings back up later in the week (even while he's on antibiotics) if he continues to look stable.

Still Waiting

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Matthew's doing about the same today. He's still up and down on his oxygen, and he's still having apneic episodes. They've upped the breathing rate on the ventilator to 20 breaths per minute to help him stay oxygenated. His feedings are still on hold until they know what's going on with his digestive system. They sent off blood for some labwork and have started him on antibiotics again. If the labwork comes back negative for an infection, they'll stop the antibiotics; but if it comes back positive, they'll have a jump on treating it.

Another Setback

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Matthew had another setback today. He started having residual on his feeds, and increasing Bradycardia episodes. He was also having tachypnic episodes (rapid breathing rate) where his breathing rate jumped to over 100 breaths per minute. Needless to say, they didn't extubate him this morning.

They ran some tests on his stool recently and found evidence of internal bleeding. His residual hasn't had any blood in it, so the blood is likely coming from his intestines. His residual today was green however which indicates that his intestines are backing up, causing bile from his small intestines to get pushed back into his stomach. They've temporarily suspended his feedings until they can figure out what's going on. Unfortunately, all of these things are symptoms of NEC. They haven't determined conclusively if he has NEC (these could all be unrelated symptoms), but they're certainly concerned about it.

Growing like a weed!

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Okay, you won't believe this...Matthew is now 1390 grams (3 lbs, 1/2 oz). He had no residuals on all of his 28 ml feeds, so they bumped him up to 30 ml's every 3 hours as of 3:00 today. 30 ml's is equivalent to an ounce or 6 teaspoons every 3 hours. He is now pooping at every diaper change again. Yeah!!

He is still on the ventilator today, but they are talking about extubating him in the morning and trying him on CPAP again. Yeah!!! Pray that he does well and is able to be on CPAP without getting tired. He is no longer getting the mucomist to thin his secretions but they still need to suction him frequently because of the secretions. He will still continue to get his albuterol treatments for a while.

Jason and I should be able to hold him later tonight since he is not as stressed as he was yesterday after his eye exam. He needed to really rest and relax after the exam. Apparently these exams are pretty hard on the little guys and it always stresses them out and they need to be left alone.

Please keep praying for his brain abnormality to go away, for him to keep tolerating the increase in his feeds and for him to keep pooping without getting the NEC infection. Pray that he does not get the Retinopathy of Prematurity (ROP) and that his vision gets better not worse. Please also pray that the extubation goes well tomorrow and that he has the strength to stay on CPAP without having to go back on the ventilator.

From the bottom of our hearts, we thank you all so very much for your prayers and support. I don't think we can thank you enough for everything you have done for us.

Love them eyeballs...

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Matthew had his eye appointment with the doctor today. Premature babies often get something called Retinopathy of Prematurity (ROP). This is where the blood vessels in the retina can develop abnormally and actually grow away from the retina into the center of the eye. This can cause vision loss and can even cause blindness in severe cases. They rate the development of ROP by specifying the stage and zone. Stage 0 is no abnormality, stages 1-2 are minor (usually no vision loss), and stages 3-5 are serious and can result in severe vision loss. Zone 1 is the center of the visual field, zone 2 is the transitional region between the center of your visual field and your peripheral vision, and zone 3 is your peripheral vision. Matthew had stage 1 development in zone 2, so this is great news. The doctors were actually surprised at how little retinal damage he had. Though it can still get worse (they will be repeating the test occasionally through the end of October), it likely means he will have normal vision.

He went up on his feedings again today. He is now getting 28 mlé─˘s every 3 hours. So far he has had a little bit of residual, but it looks like he is tolerating it pretty well. He's weighing in at 1340 grams (2lbs, 15oz). He'll probably pass the 3lb mark this weekend.

In addition to the previous prayer requests, please pray that his vision doesn't get worse.

Thanks so much for the comments that all of you have left. Sorry we haven't had time to respond to each of them. It means a lot to us that all of you are going through this with us.

You won't believe your eyes...

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Matthew had his blood transfusion today, which took about 6.5 hours to complete. It is amazing to see how much better his skin tone looks now that he's had the transfusion. Jason got to hold him for a little bit tonight, but because Matthew had so many things happen to him today, it was only for a small amount of time.

His direct bilirubin levels are still coming down. His current level is 4, which is down from 6 last week.

They are now wanting Matthew to start gaining an ounce a day. Even though he is gaining weight really well on my breastmilk, they want to speed it up by giving him a fat supplement mixed in with my milk. Hopefully after he has gained more weight, he will be able to tolerate going on CPAP and get off the vent.

There are so many changes that we have seen in Matthew over the last few days, it is absolutely amazing. You can start to see his very tiny eyelashes and his fingernails are starting to get longer too. He even graduated to a larger diaper, which is a bit big on him, but it looks much better than the other one he was wearing. After looking at these pictures, you should scroll down to the beginning of these journal entries to see what Matthew used to look like. WOW!! He almost looks like a different baby now!! Yeah! Praise God!! Remember, you can click on the photos to make them larger or to scroll through all the pictures with the titles and captions on them.

        

Going up and up...

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Matthew's feedings have increased once again today. They are now giving him 26 ml's every 3 hours. He is currently weighing 2 lbs. 12 oz. and he is really starting to look like a little chubby baby (well at least compared to before)

He was moved to a new home today. He is now in room number 2 instead of 1. This means that he is more stable and is no longer the sickest or smallest baby in the NICU. Yeah!! They had a recent admission of 3 babies. Two 26 week old twins and one 23 week old baby. I look at those babies and then Matthew and it brings back memories of what he looked like not to long ago. It is amazing to see how far God has brought him. I know God has performed so many miracles with him and I am so very thankful for every one of them.

I got to hold the little one today for almost two hours!!! It was so exciting. When I would softly sing to him or hum a tune, his oxygen saturation improved. I am starting to figure out the little things that make him stressed and the things that seem to make him calm. It also feels good knowing that Matthew is tolerating it much better when we touch him.

Still doing well...

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They have gone up on the feedings for Matthew again! Can you believe it? He is now getting 25 ml's every 3 hours with the supplemental calcium and phosphorus in it. It appears that he is tolerating it fairly well. He is still pooping but he doesn't poop at every diaper change. I don't know if that is normal or not, but as soon as I heard it hasn't been every diaper, my first thought was, "what's happening with his bowels." I began to wonder if something was going wrong again.

He still goes up and down on his oxygen levels. The secretions in his lungs are thinner due to a new medication they are giving him called mucomist along with his albuterol treatments. He is still on the ventilator and they are talking about putting him on CPAP by the end of the week.

New developments: Since Matthew was so premature, his body is having a difficult time making red blood cells. They are thinking about giving him a blood transfusion in the next few days to help with this and they are giving him additional iron as well to help with his anemia. (Babies usually absorb a lot of iron in the third trimester and since he didn't get that chance, they have to give it to him directly). In addition, they are giving him Epoetin, which is a man-made form of a naturally occurring protein called erythropoietin. Erythropoietin is produced in the kidney and stimulates the production of red blood cells.

Jason got to do his first skin to skin or Kangaroo care with Matthew tonight. Judging by the huge grin on Jason's face, I would say he was pretty happy doing it. Matthew was enjoying it too. He was fast asleep and there were a couple of times where it looked like Matthew had a smile on his face...I tried to get a photo of it, but no luck...maybe another time.

Please pray that his body is able to start producing red blood cells on a regular basis.
Keep praying that he tolerates the increase in his feeds with the additional supplement and that he continues to have bowel movements and NEVER gets the NEC infection.
Keep praying for his lungs to be getting stronger and for him to remember to breathe.
Keep praying for the abnormality in the brain to go away completely and for his direct bilirubin levels to come back down to normal.
Praise God for bringing Matthew this far in his development, and continue to pray that he carries him through all this as he heals and strengthens his little body.

Moving around alot...

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Today Matthew was a very busy little wiggle worm. In fact, there was one point where he was laying on his stomach with his head positioned on his left side. He picked up his head and turned it over to the right side and managed to squeeze his breathing tube. They had to quickly fix him and the tubing so he was back to normal. I was pretty shocked when I saw that. The nurse tells me that he tends to get really restless like that when it is time to eat. (This is a new development for him to have a time schedule) He was also awake a lot today and keeping his eyes open for long periods of time. I loved looking at his beautiful steel blue eyes...I wonder what color they will be when he gets older.

He is still pooping...YEAH!! As a matter of fact, he was wide awake when I changed his diaper today and I think he wanted to have fun with me because he decided to pee and poop all over me when I was changing him....that little stinker...(no pun intended) :)

Today they have officially discontinued the antibiotics for his lung infection and they are no longer giving him the aminophylline via the IV. The aminophylline was a medication used to help him to breathe better and to help him remember to breathe to prevent periods of apnea (not breathing). They are now going to be giving him theophylline, which is like aminophylline except that it is given orally via the feeding tube into the stomach. So for the first time ever, our baby will not have an IV line hooked up into his arm, hand, leg or foot!!! YEAH!!! He's got to love that; I know I do.

Apparently they will no longer be monitoring his carbon dioxide levels either. It seems that when he gets to be a certain weight the leads of the monitors for measuring CO2 don't correlate well with the blood gases, so they are no longer using them. He is still up and down on the oxygen, but I hope that will change as he gets bigger and stronger and hopefully when he is also on CPAP. He is back up to 2 lbs 10 oz. as of last night.

Keep praying that he tolerates the feeds with the additional supplement and that he continues to have bowel movements and NEVER gets the NEC infection.
Keep praying for his lungs to be getting stronger and for him to remember to breathe.
Keep praying for the abnormality in the brain to go away completely and for his direct bilirubin levels to come back down to normal.
Praise God for all the miraculous things he has done with Matthew so far and for letting us get to do the kangaroo care sooner than we thought.

Thank you very much for all your prayers for Matthew and including Jason and me in them even if we don't list a specific prayer request for us.

Getting stronger....

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Matthew was doing really well again today. They increased his feeds to 24 ml's every 3 hours (which is considered to be his full feeds) so they have disconnected all the nutrition they were giving him intraveneously. They did start giving him the calcium and phosphorous supplement in my breastmilk that they feed him. A lot of babies usually don't do well with the added supplement mixed in, but he seems to be tolerating it so far. He is still pooping today!! Yeah! The lab results for the bloody stool are still pending. He is weighing in at 2 lbs 9 oz. He lost about an ounce from all the pooping.

He is still on the ventilator but they did say that if he extubates himself then they are going to put him on CPAP. He is getting so much stronger that he is starting to lift his head from lying on the side to almost being straight in the middle with his nose down. (I hope that makes sense) If he keeps doing that, he may actually pull his own breathing tube out.

I got to do the Kangaroo care again today! Yesterday I held him for almost 45 minutes, but today I got to hold him for an hour. I only wish Jason was here to see this and experience it too. The nurses said that several times he would open his eyes and look up at me, but it was hard for me to see him. (That would have been a Kodak moment) Again, he tolerated being held extremely well and actually he did a bit better than yesterday, except near the end of the session. His body temperature got so hot (100.4) from me holding him that his heart rate shot up into the 200's. After we put him back in the isolette, his heart rate started to go back down along with his temperature.

Please continue to pray that the abnormality in the brain goes away and never comes back. Pray that he tolerates the feedings especially now that it has the added supplements. Continue to pray that he never gets the NEC infection. Pray that he continues to gain weight and grow stronger and that his organs start to work properly and mature, especially the liver. Pray that his lungs will continue to get stronger so when they put him on CPAP this week he can tolerate it.

My little Kangaroo...

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Today was the best day ever!!! I got to do what they call "Kangaroo care" with Matthew for the first time (which wasn't expected for another few weeks). I was so excited I was bouncing off the walls waiting to do it. Kangaroo care is also known as skin to skin. This all means that I got to old Matthew directly on my chest, having his skin touch mine. Before he had to be bundled up and I was fully clothed, but now I wear my shirt unbuttoned and he lays directly on me. I had to meet with the Physical Therapist to go over a lot of information about how to hold him, what the different stages of alertness there are, how to recognize when he is stressed, etc etc. It was the most incredible feeling in the world to hold my baby on my chest and to smell him. His ear was near my heart so he could hear my heart beat, while he kept suckling on the tube and sticking his tongue out (this is the suckling response he needs to establish before I can start breastfeeding). The entire time I was holding him, he was tolerating it extremely well. He was only on 29% oxygen and his saturation levels were between 92 and 97%. His breathing was regular and his heart rate remained stable. I was telling the nurses that it felt like heaven (or at least as close as I could get to it) :)

Today they bumped up Matthew's feeds to 21 ml's every 3 hours. So far, he has been tolerating it really well. He has even had poops on a regular basis too! They did find a couple of his stools to have blood in them so they ran them off for testing. They are thinking that it might be irritation from all the pooping and from all the enemas he's had, but they need to run tests to make sure its not anything else.

They did another ultrasound of the head today. It looks like the abnormality is slowly resolving. The radiologist really thinks it was a blood clot and that it is going away. The big questions that still remain are about how he got the clot in that part of the brain and will it happen again and why did it happen in the first place. They are going to continue to monitor it and run more tests on his blood for clotting diseases, etc.

He is still on the ventilator and doing well. They are still suctioning him and getting quite a bit of secretions. However, they aren't as thick or yellow as before.

Moving right along...

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Today Matthew's intestines starting pushing things through, so he was able to have several bowel movements. Yeah!! Praise God! Yes, it is the little things he does these days that excites me and that includes pooping! :)

They increased his feedings from 15 to 18 ml's every 3 hours. He seems to be tolerating it very well. Praise God! If he does well at 18 ml's over night, then it looks like they will bump him up to 21 ml's every 3 hours starting tomorrow. He was weighing in at 2 lbs 10 oz. as of last night, but after all the pooping he did today, they expect his weight to be down tomorrow.

They doctor said that they will keep him on the ventilator for another week to really try and get his digestive problem under control. He doesn't do well breathing on his own when he has so much stuff pushing up on his diaphragm making it very difficult for him to breathe. At this point it is more important to get him to grow so his lungs can mature and his muscles will be strong enough to help him breathe.

The doctor said that he is doing really well on the ventilator; it's still on the lowest settings. He is doing great at gaining weight (which they say is usually a big problem for most preemies) so they are pleased to see that. It looks like he is getting plenty of nutrition from my breastmilk, however they will supplement it with calcium and phosphorus when he gets to full feeds. Apparently, it is in the third trimester where they absorb most of the calcium and since he didn't have the opportunity to do that, they are going to give him more in his feedings. Even if I double my calcium intake it still won't be enough for him.

The abnormality in the brain looks like it has gone down some but not much. They don't seem to be too concerned about it doing brain damage at this point, but then again they have never seen anything like this before either. The doctor today even thought that it might be worth documenting this abnormality and writing an article about it, since this is so unusual.

The doctor today also wanted to run more of the rare tests for the Cystic Fibrosis to be sure of what is going on with him because they can't figure him out. She said he doesn't have all the "classic" signs of what most preemies do so it makes it harder to predict what he's going to do next. I thought it was really funny when she said that Matthew read the rulebook but he has decided to play another game and use a different set of rules! Now doesn't that sound like a child of ours? :) I think we may be getting a small taste of his personality here...

Please continue to pray for Matthew to digest the breastmilk and for his intestines to start working properly so he can pass things along smoothly.
Continue to pray that the abnormality in the brain goes away completely.
Continue to pray for the lung infection to go away and that he is able to produce the right amount and type of secretions. Pray for his lungs to strengthen.
Pray that he continues to gain weight and for his muscles to get more developed and for him to get stronger.
Praise God for all the miracles he has performed on Matthew already. Pray that he continues to do so!

Thank you all for your prayers, love and support! We love you all! May God bless your lives richly!

GREAT NEWS!!

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First and foremost, the tests results for the Cystic Fibrosis came back negative!!! Yeah!! Praise God!! Of course this genetic test doesn't test for all the mutations of the CF gene, but there's a pretty good chance he won't have it because the other mutations are pretty rare. We will have him tested again when he is old enough to do the sweat tests.

Matthew was put on CPAP today at noon but was reintubated again about 6:30. I went to pump and then came back in the room to find my baby blue all over and being bagged by the nurse. He was dropping his oxygen saturation into the low 30's and his heart rate dropped down to the 50's. The doctor decided to reintubate him because this happened several times within the hour.

They increased the feedings to 15 ml's every three hours. Unfortunately, he still has not had any bowel movements.

I didn't get a chance to talk to the doctor again today because she had to leave early. I hope to talk to her tomorrow because there were a lot of other test results that came back today that the evening doctor wasn't sure how to interpret. They may need to call the geneticist tomorrow to understand exactly what they mean.

Praise God for the good news about the CF!
Please pray that he is able to have a bowel movement and that he continues to do so without complications. Continue to pray that he never gets the NEC infection.
Continue to pray that the abnormality in his brain goes away completely. (I should know more about the ultrasound results tomorrow)
Continue to pray for healing of his lung infection and that his lungs continue to grow stronger and produce the right amount of secretions.

THANK YOU ALL SO VERY VERY MUCH FOR YOUR PRAYERS AND SUPPORT!!

About the same...

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Matthew is doing well and is continuing to grow. He is still on the ventilator but it is their hope to put him on CPAP tomorrow. Unfortunately, he hasn't had a bowel movement in awhile so they gave him a gastrograffin enema today. This is just like the one they gave him last week that worked. They did increase his feedings to 12 cc's or ml's every 3 hours. (5 cc's or ml's is equal to one teaspoon). He tolerated it fairly well, with only one episode of having residuals.

He had an ultrasound done on his head today along with another abdominal x-ray. The doctor who is taking care of him is out today, so I hope to talk to her tomorrow regarding the results of all the tests and for what this means with him not having bowel movements on his own.

I'll keep you posted.

Growing

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Matthew is definitely looking bigger these days. He's up to 1116 gm (2 lbs 7 ozs) as of last night; but he hasn't stooled in over 30 hours, so part of it may be from the excess fluid. They've increased his feeding level to 9 ml every 3 hours, and so far he's had little residual.

He's on the lowest possible ventilator settings, and he's been or room air basically all day, so his lungs are clearly doing very well. He doesn't desat like he used to when you talk to him or when you touch him. They're talking about putting him on CPAP again in the next day or two, and since he's so much larger than the last time they tried it, I expect him to do much better this time.

Still Doing Well

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When we saw Matthew today, Jason got to hold him for a while and he was tolerating it really well. He is currently on the lowest settings on the ventilator and is on room air (21% oxygen) most of the time.

His feedings continue to be 6 ml every 3 hours and he is still having a tiny bit of residuals, so they have not increased the feedings yet. He did manage to have a bowel movement without the help of a suppository, so that is a good thing.

The only new news is that he has had a lot more thick secretions from his lungs again. They even had to take out his old endotracheal tube and put in a new one because his older one was so clogged that he kept dropping his oxygen saturation levels. Since they have put in his new ET tube he is doing much better. Unfortunately, they took some samples of the secretions and it looks like he may have an infection in his lungs, so they started him on antibiotics again today.

Please pray for the infection in his lungs to go away completely and that he starts producing the right amount and consistency of his secretions.
Continue to pray for the abnormality in his brain to go away completely and that he does not have CF. Also continue to pray that all the other lab tests come back normal and that his liver starts functioning properly in order to get the direct bilirubin levels back down within normal limits.

Thank you again to everyone we know and don't know for all your prayers, support and comments!

Increased Feedings

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They've increased his feedings to 6 ml every 3 hrs this morning. He still hasn't had a stool in about 36 hours, but they're going to wait until later today before giving him a suppository.

Up and Down

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Matthew was relatively stable today, but his O2 requirement was up and down. His pCO2 was also a little high today, but not high enough to alarm the doctors.

They didn't increase his feeding level today since he was having small amounts of residuals. These decreased toward the end of the day, so they'll likely increase his feeding level tomorrow. He didn't have any stool today, but they think it may be due to the low level of his feedings.

Feeding Again

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They started feeding him again today!!! They started at 3 ml every 3 hrs, and so far there's only been a small amount of residual at each feeding. As long as there is little to no residual (and as long as he keeps pooping), they're going to increase his feedings 3 ml per feeding each day until he reaches 21 ml every 3 hrs (6 ml per feeding on saturday, 9 on sunday, etc.).

Everything else is basically the same. He's still fairly stable; only requiring 21-25% O2 most of the time. We didn't get to hold him tonight because he had a temporary nurse. So far, every time we've held him it's been with the same nurse. She's not on this weekend, so we may not get to hold him again until early next week.

Matthew is also still gaining weight. He's up to 1090 g (2 lb 5 oz).

More poopy diapers!

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Matthew had his second gastrograffin enema today and boy did he unload! For all you men out there, you'd be proud that he had projectile poops-literally! He unloaded on the nurse, his bedding, the isolette and me before we could get another diaper on him (welcome to parenthood, huh?). This is a really good sign that they may have done the trick with this second enema. They will do another x-ray in the morning to make sure all is well and they will continue to watch him. If he is able to keep moving things through his intestines, then they are probably going to start feeding him breastmilk again in the next day or so.

His respiratory status improved a lot today. Since he doesn't have a lot of stuff pushing up on his diaphram, it was easier for him to breathe today. He was mostly on room air (approx. 21% oxygen) and his carbon dioxide levels were really stable. His oxygen saturation was still going up and down. It mainly went down when he moved or when it looked like he was straining to poop. They even went down a bit more on his settings on the ventilator today. They think they may put him back on CPAP by next week. But they are going to make sure that he is feeding well first before they do that because the CPAP will blow air into his stomach and they want to make sure that with the stomach distention it is just from CPAP and nothing related to digestive problems.

Once again, we felt very peaceful today, PRAISE GOD!!! To top the day off, we both got to hold him again. We didn't hold him for long because he had been through a lot today, but every chance we get to hold him, we're all over that!!

There are a lot of test results still pending, so we will keep you posted if we find out anything new.

Prayer requests:
Continue to pray that he does not have CF, which is the desire of our hearts, but we will accept God's will no matter what the outcome is because ultimately He is in control.
Pray that he continues to move things along in his digestive tract without complications.
Continue to pray for his lungs to get strong enough to be put on CPAP, and that he produces the right amount and type of secretions.
Pray for continued peace for us in the midst of this storm.
Praise God for bringing us closer to Him, to each other and to our families through this.
Praise God for Matthew's improvements!

About the same...

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Matthew is about the same as before. The only new thing is that he has had a few more bowel movements. His stool is still looking like the meconium but it is now looking more like what they call "transitional stool" of being partly meconium and partly digested breastmilk. He will have another belly x-ray in the morning. By the way, I got to change my first poopy diaper today. Yeah!! Of course I say that now, but by the 50th diaper I am sure I won't be feeling the same way...

His direct bilirubin levels have come down from 11.1 to 8.3. Just to give you an idea, his direct bilirubin level is suppose to be below 1. His skin color is still a little yellow, but obviously better than before.

His lungs are still producing secretions but they are not as yellow as before and this could be because his bilirubin levels are coming down.

We won't know the test results of the genetic tests about cystic fibrosis for several weeks. We'll keep you posted.

Please keep praying that he does not have cystic fibrosis and that the abnormality in his brain continues to go away. Pray that he produces the right amount and normal thickness of secretions in his lungs. Pray that his lungs get stronger so he can come off the ventilator sooner. Pray that he is still able to pass more stool without difficulty.

Thank you for your prayers. Today Jason and I both felt a very calming peace. It was such a wonderful feeling to have that, especially compared to yesterday. Praise God for his peace that surpasses all understanding...

Something's happening...

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As of 6:00 this morning, Matthew did have a small stool, but not enough for the doctor's to be impressed. If he were to have had some kind of meconium plug they would have expected more to have come out than what actually did. Once again, they are perplexed. The nurse thought it looked like the meconeum that came out but I want to confirm this with the doctor. I tried to speak with the doctor but they were doing their rounds and I was told they wouldn't be able to speak to me for a few hours because they will also be doing surgery for another baby.

They nurse also mentioned that he had another x-ray at 8:00 a.m. and that he is doing well and is stable. Only the doctors are able to see the results of the x-rays, not the nurses, so I don't know how it went. Unfortunately, that is all I know for now. I will keep you posted as soon as I hear anything.

About the same...

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Matthew was about the same today. He had a special kind of enema done late in the evening called a gastrograffin enema. By 9:00 in the evening, the x-rays showed that the contrast they used went further into his small intestine passed the area that is blocked. So what does this all mean? Well, the doctor on duty last night was seeing Matthew for the first time. She is a doctor that also moonlights at Stanford. She said that when she first saw Matthew she immediately thought NEC. But the other doctors said that he never had the NEC infection. According to the x-rays he could have the meconeum ileum or he could have a micro colon or he could have had some kind of infection in his belly before which could have caused some damage in the intestines, preventing passing of stool. So this means that we still don't know what is going on, and Cystic Fibrosis (CF) is still high on their list, but they still have to rule out other possibilities. If Matthew does not pass any stool in the night then we need to talk about other options, possibly surgery to see what the problem is. I didn't know what to think or say when she said that if he did have CF that it might actually be one of the better outcomes for him. If you don't know, CF is a really nasty disease that is deadly and you can potentially lead a really horrible life, depending on the type of mutation of that gene you inherited. Apparently, there are hundreds of mutations of CF, and they may never catch it with the genetic testing. So we may not know for sure until he is older and they can perform the sweat test on him. They say people with CF usually only live to be in their 30's, maybe 40's. I can't fathom what that would be like, wondering if each day that your child is with you, if it is his last, or knowing that he may never go to college or get married...I get numb just thinking about it.

As far as respiratory goes, he is still having periods of apnea (not breathing). They say this is to be expected of a preemie, and especially since he is so plugged up, the digestive system is now pushing up on the diaphragm making it more difficult to breath. It is very hard to see your child stop breathing and then start again.

Jason and I are emotionally spent today. We both feel like zombies and I don't think we can take in any more information about Matthew. To explain how we feel is simply unexplainable. I am not sure what to pray for other than a miracle that he does not have CF and that whatever is going on in his intestines is easily fixed without complications. The odds are certainly against us, but I know God is bigger than odds and numbers. I personally feel like my faith is being ripped apart and I am being tested beyond belief. When we prayed tonight I was not able to say a word other than cry out sobbing and begging for God's mercy and grace on Matthew and us...I have never felt more like Job and Abraham than I do now...I thought the earlier days of this were bad, but it just seems it has been more intense these past few days.

Thank you all for the notes and bible versus you have encouraged us with. When our faith is being tested, it is a good reminder to hear about God's faithfulness.

More unknowns...

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Well, today was an interesting day of unknowns and new tests and more waiting. Matthew was not digesting his breastmilk today so they took an ultrasound and x-ray of his belly to see what was happening especially since he was not having any bowel movements. They discovered that he was not passing any stool because he has some meconium stuck in his small intestines. This is called meconium ilieum. His stool was so dense that it even showed up on the x-ray, which it normally wouldn't. They also noticed that his lower intestines (the colon) was very tiny which means that nothing had ever been in it. The suppositories and enemas were not working. So tomorrow they are going to do an ultrasound while performing an enema so they can basically go all the way up into the small intestines and to try and break it up. If that doesn't work after a couple of tries then they are going to have to perform surgery to remove the meconium.

Matthew has also been having a lot of thick secretions in his lungs and he is having more episodes of periodic apnea (not breathing). His oxygen saturation has also been a bit more unstable. The episodes of apnea they say are common in premies but they are concerned with the secretions they keep getting from his lungs.

One of the things the doctor said today was that there are several things that are pointing them into thinking that Matthew may have a genetic disorder called cystic fibrosis. Specifically because of the meconeum ileum and the secretions in the lungs, the liver issue, etc. They have sent off some blood work to test for this but we won't know results for a while.

They did an ultrasound on the brain at the same time they did the abdominal ultrasound today. The abnormality in the brain has changed shape. The doctor's think this could be a good thing because it looks like it may be breaking up and will eventually dissipate. They will continue to monitor it by doing ultrasounds over the next few weeks.

Prayer requests: Pray that the enema in the small intestines works so they don't have to do surgery.
Pray that Matthew does not have cystic fibrosis.
Pray that his lungs mature and that he produces the right amount of secretions and that he keeps breathing.
Continue to pray that the brain abnormality goes away completely.
Continue to pray that Matthew does not get the NEC infection.
Of course continue to pray for us as we go through this. Today I am very worried and I feel like I am kind of numb. Please pray for us to have God's peace and to not be worried and anxious about everything we just found out today. Thank you for all your support.

Boy in the Bubble

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Matthew was moved into an isolette this afternoon. He has been on a table until this point because he needed to be watched so closely and because the doctors and nurses might have to jump in at a moment's notice to deal with a problem. Now that he's stabilized, the isolette provides him a quieter environment in which to grow. The isolette provides a temperature controlled environment for him until he's got a layer of baby fat and can regulate his body temperature himself. Once he's about 1900g, they'll move him to a bassinet until he's ready to go home.

When they upped him to 9ml every 3 hours, they were finding residual breast milk during subsequent feedings. They cut him back to 8ml every 3 hours for most of the day; but since he still hasn't had a bowel movement on his own yet, they actually stopped his feedings this evening. They've given him an enema and a suppository (his fourth actually) to try and relieve his constipation.

And Again...

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Matthew didn't have any residual food in his stomach all day, so they're increasing his food levels again. Over the next three feedings, they're stepping Matthew up to 9 ml every 3 hours. That will be over 50% of his total fluid intake (currently 5.6ml/h).

Jenn got to hold Matthew again tonight. He slept most of the time and didn't need as much additional oxygen as last night, which means he's getting more used to being held. Since they went up on the feeding, I didn't get to hold him tonight, but hopefully I can tomorrow.

We spoke with the nurse that was removed as his primary night nurse. She was very understanding and said that she would have done the same thing if Matthew were her child. She apologized for being so flippant. Though she won't be his primary again, it's possible she may take care of him at some point as Matthew moves from a 2 to 1 baby to a 3 to 1 or 4 to 1.

And the Feedings Increase...

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Overnight, they increased Matthew's feedings to 7 ml every 4 hours. This morning, they increased them again to 6 ml every 3 hours. During the last couple of feedings, they've found a small amount of residual food from the previous feeding (0.5 ml or so), so they've probably found the right level for him for now. He also grew a little from yesterday to 1020 grams (approximately 2 lbs 4 ounces) Reminder... he was born at 1 pound 11 oz. We haven't been down to see him today, but the nurse said he's still pretty stable. We're looking forward to holding him again tonight.

We got to hold him!!!

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I have been shedding many tears these past few weeks and I must admit that it has been a long time since I have cried tears of joy. But tonight was one of them!! After I pumped and came back into Matthew's room, I noticed Jason had a very cute boyish grin on his face like he was up to something...little did I know, he was about to hold Matthew. The night nurse felt that Matthew was stable enough to be held for a very brief period of time, so she allowed us to hold him. Jason held him first and I got to feed him through the tube while Jason was holding him. Matthew squirmed at first but quickly settled down. He managed to open his eyes to look at daddy several times. It was so cute to see father and son bonding together. Then I finally got to hold Matthew and because I was so excited I could only cry wonderful tears of joy! :) Matthew settled right in and fell asleep. His oxygen saturation even got so high that we had to turn down the amount of oxygen we were giving him.

You could tell that he really liked to be held and that he enjoyed being wrapped up tightly like a burrito because once we had to put him back in his bed and unwrap him to adjust all the wires and leads, he started to get very agitated and began to cry.

I am so thankful that we got the opportunity to hold him tonight. It was a joyous ending to an anxiety filled day.

Please keep praying for the abnormality to go away, and the liver to start functioning properly so that the direct bilirubin levels will come back down. Of course, continue to pray that he never develops the NEC infection and that he continues to tolerate the feedings.

Thank you all for your comments and prayers. Matthew really needs a miracle!

    

Good news and scary news

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The good news today is that Matthew has tolerated the increase in his feedings so they are going to go up again on the amount of breastmilk they are feeding him every four hours. He is even tolerating a decrease in his pressures on the ventilator today.

The scary news is that they are seeing some kind of abnormal growth or fluid in his brain. They don't know if it is an abscess or if it's a cyst or if it is build up of Cerebrospinal fluid (CSF). They do know that it is not blood. They don't know if it was blood and now it is going away and it is just the residual fluid from that. It was NOT on previous scans and they have NEVER seen this before in a preemie baby. The Director of the NICU, the Pediatric Radiologist, and the Neurosurgeon from Stanford have never seen this before and they don't know what is causing it. However, they have seen something like this in very young children but only after they have had neurosurgery and they have seen this in adults but only after trauma to the head. It is located in a space called the subdural fissure. Which means it is located between the right and left hemispheres of the brain (in the fissure) and it is between the skull and the brain (the subdural area). He is not stable enough to take him down to do an MRI, so they are going to continue to monitor him on the ultrasounds for now. They are doing a spinal tap today to see if there might be an infection in the CSF, but they don't think there'll be one. They don't feel too concerned right now because fortunately his brain is still growing and the skull is still soft, so if it continues to get larger, the brain can work around it and there won't be a lot of pressure build up because the skull has a lot of flexibility right now. If it continues to grow, they will have to do surgery on his brain to see what is causing this and if they can remove it.

The other thing they have not seen before is the issue with his liver. His bilirubin levels keep climbing daily in spite of the medication they are giving him. However, everything else about his liver tests have come back fine. Once again they are stumped. The specialist was in today running more tests on the liver, so hopefully we'll know more this afternoon about this.

Prayer requests: PRAY, PRAY, PRAY LIKE YOU'VE NEVER PRAYED BEFORE! If you've never prayed before, I beg you to start now. Please pray that this abnormality in the brain goes away completely and never comes back! Please pray that his bilirubin levels come back down to normal and stay that way. Praise God for the good news about the feeding and his respiratory status. Please pray for us to have a peace of mind about the entire situation that is before us.

Thank you all so much for your prayers.

Still Doing Well

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Matthew has had several feedings today, and all have gone very well. He had his first feeding at noon today, and at 1:35, they checked for residual and found none. If he's still doing this well tomorrow, they will probably increase his feeding to 5ml every 4 hours or 4ml every 3 hours.

As of yesterday, Matthew is no longer a 1 on 1 baby. Up until this time, he's had his own nurse 24/7. Now that he's more stable, his nurse will be taking care of him and one other baby.

Matthew officially crossed the 1kg mark today. That's up nearly 33% from his birth weight in less than 4 weeks (They told us early on that babies this young often take 4 weeks just to reach their birth weights again).

Still Stable...

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Matthew is still doing pretty well today. They did have to go up a tiny bit on his pressures on the ventilator today because he couldn't keep his CO2 levels down. This was to be expected...but the doctor did say that all the breaths he is taking on the ventilator are his own and they are only providing enough pressure to keep his lungs open.

So far he has tolerated all the feedings in the last 24 hours, so they have increased the amount of breastmilk they are feeding him from 2ml to 4ml every four hours. If he does well, they will continue to go up on his feedings.

The only concerning thing that occurred today was the results of the brain scan. The doctors saw something a bit abnormal today and they aren't sure if it's a bad thing or not. They are going to go over the previous brain scans and this current one with a fine tooth comb and will give us the official results in a day or two.

Please pray for the following things: 1) That the abnormality they are seeing is nothing and that the bleed is on its way to going away completely. 2) That he never gets the NEC infection and that the feedings continue to go well. 3) For his lungs to get stronger everyday and to not collapse. 4) That the bilirubin levels gets back to normal and that his liver starts to function properly (the big liver test is tomorrow).

Stable and doing well...

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As of 10:00 tonight, Matthew has had 3 feedings, all of which looked like they went fairly smooth. Yeah!!

He is doing really well on the conventional ventilator and he has even tolerated a decrease in the pressures. The chest x-ray showed that there is less cloudiness, which indicates that there is more air present and moving in his lungs. This was very encouraging to hear. His oxygen and carbon dioxide levels have been stable for most of the day. The ultrasound for the head was ordered today but it won't happen until tomorrow morning.

They have even moved him onto his tummy and he seems to really like that position (don't try this with young babies at home unless you have the monitors like they do). We have only seen him on his back for the last 25 days so it was shocking for us to see him on his stomach...literally. His head was covered and so were his legs when we got to his bedside...so the first thing we noticed was that his arms looked like they were on backwards...I know I know, but if you saw what we did you would have thought the same thing, then we suddenly realized he was on his tummy and relaxed. :) (well, ya know, the PT was working with his muscles earlier...ha ha)

Praise God for such a great day!! Please keep praying that the feedings will continue to go smoothly without complications, especially to the digestive system. Please pray that Matthew NEVER gets the NEC infection. Pray that his lungs will continue to grow and not collapse again (some areas of the lungs had been doing this) and to have the right amount of gas exchange, airflow and fluid throughout his lungs. Please continue to pray that the bleed in the brain does not get larger and that it goes away completely through the natural reabsorption of the blood in the ventricles. Please keep praying that the high bilirubin levels will come back to normal and that there are no complications with his liver.

Thank you again for your support and prayers!

Some good news...

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Last night about 10:30 I received a call from the doctor saying that they had to put him back on the ventilator again because he was too tired to continue on CPAP. The good news is that they only had to put him on the conventional ventilator. He never went back on the JET ventilator. YEAH!! As of this morning, he was doing fairly well on the conventional ventilator and his blood gases looked good, so they were able to decrease the pressures. So far he is doing well and has tolerated the decrease in pressures. According to his nurse the doctor's think they will check him again after several days of recuperating to see if he can go back on CPAP.

Since nothing has grown on any of the cultures, they have discontinued the antibiotics today. They have another liver test scheduled for Friday to see what is going on there with regards to the bilirubin levels. They are even thinking about starting him on breastmilk again, probably sometime this afternoon.
They also did another head ultrasound and chest x-ray. The results have not come back as of yet, but we'll keep you posted.

A physical therapist (PT) came by for the first time and worked with him today. I tried to find out what exactly they did to him but the nurse was away when the PT was there. I do know that they were working with his muscles looking for muscle tone, proper movement, etc. Since he has been on his back most of the time that he's been in the hospital and his arms and legs don't have the ability to move like he would if he was in utero, they need to work with him to make sure he can still move his muscles properly. The nurse did say that the PT told her he began tolerating the touch after awhile, so I am hoping that we will be able to start touching him more without causing him agitation. What a wonderful feeling it will be to finally touch our baby, knowing that it may actually calm or sooth him rather than irritate or harm him. Just think how incredible it will be when we can hold him, smell him, touch him, feed him, kiss on his cute little fingers and toes...sorry getting carried away in that thought. :)

I have not been down to see the little guy yet today, but I will keep you posted when I find out more.

Thank you again for all your prayers, comments and support. We love you all so very much!
J,J & M

First the good news...Since Matthew is starting to grow, the tube that has been inside of his trachea (aka: endotracheal tube) has become too small for him so they needed to put in a larger one. But instead of doing that right away, they decided to try him out on the CPAP once again. (For review about CPAP see the entry on June 27th) He was put on CPAP at 1:00 pm and at 7:30 pm he was still on it and he seemed to be doing fairly well. The chest x-ray in the afternoon came back showing that the lungs were not as collapsed as they were in the morning when he was on the ventilators. They have him on about 60% oxygen and even though things look good now, they tell us not to be surprised if he gets too tired to continue breathing on his own and ends up back on the ventilators by tomorrow. We've been here before and know that every hour or day off the ventilators is better for his lungs in the long run and it's another step forward.

The bad news is that the feeding didn't go well at all. Absolutely none of my breastmilk that they fed him moved through his digestive system. As a matter of fact they even saw some blood when they were checking the "residual" stuff in his stomach. The blood could be due to some irritation of the feeding tube in his stomach or it could be due to stomach ulcers. They are currently giving him some Zantac via the IV to help take care of this problem. So for now the feedings have been discontinued until further notice.
In addition to this, the blood work for Matthew came back a little unusual this morning so they started him on antibiotics again. They are thinking there may be another bacterial infection, but are unsure what kind it can be. They really can't figure out what is going on because some of the results show there are signs of infection and some of the results show that there are no signs of infection. There is nothing growing in any of the cultures they have done for either the bacteria or the fungus, (although growth can take several days or even up to a week to grow) but they are giving him antibiotics for today and will do more blood work in the morning to see if it is working. He is on two antibiotics and unfortunately one of them is called Vancomycin, which is generally used as an absolute last resort to kill off any bacteria. If he ever becomes resistant to Vancomycin, this can become a huge problem down the road, so pray that he doesn't become resistant and that he doesn't need to be on it very long.

Now for the unknown...Well, the little guy just can't seem to get rid of the bilirubin levels in his blood. For more information about bilirubin levels and the side effects of it being to high, click here. The director of the NICU was assigned to Matthew today and he has called in a specialist to come and take a look at what is going on because all the doctors are stumped. The doctors just can't figure out what is going on. It appears that none of the test results they are getting makes sense with the kinds of levels they are seeing with him. The ultrasounds and x-rays don't show any abnormalities with his liver, but there are some diseases that can be causing this problem. Please pray that a solution to this bilirubin mystery can be found and that there aren't any serious complication or side effects to this.

His First Feeding!

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Matthew had his first feeding today at around 6 p.m. They gave him 2cc of Jenn's breast milk, and he will receive 2cc every 6 hours as long as he responds well. Basically, at each feeding, they pull out the entire contents of his stomach through the feeding tube to see what's going on in there. As long as the contents aren't green or bloody, they push them back in and add 2 additional ml. They're on high alert for NEC, and if there are any signs that something is wrong, they'll stop the feedings.

They took Matthew off the Jet today for about 40 minutes, but he wasn't doing well on the regular ventilator so they had to put him back on the Jet. They also upped the breathing rate from 300 to 360 breaths per minute for about 4 hours and then dropped him back to 300. His pCO2 levels have stabilized, but now his O2 sat is jumping around. They haven't been as quick to change his O2 levels on the vent when he desats as he usually recovers pretty quickly on his own.

The Lasix appears to have worked. He's urinating much better and he looks quite a bit less puffy. The chest x-rays today showed a little less fluid in the lungs too. They haven't weighed him in a couple of days, so we don't know exactly how much excess fluid he's got right now.

Here we go again...

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Today was not a good day for Matthew. His respiratory status has been pretty unstable. He had to go back up on the pressures on both ventilators and they also had to increase the percentage of oxygen he's receiving. His oxygen saturation has been labile. One minute it is up high and the next minute it is down low. The chest x-ray showed that there has been an increase in the amount of fluid in his lungs. Fortunately, it is only in the lungs and there are no signs of fluid in the pleural spaces. As usual, he is not tolerating any noise or touch at all. In addition to the lung problems, he is starting to retain fluid again and he has a decreased urine output. He looks really puffy and they started giving him Lasix again which will help with the fluid retention. To top it all off, when they drew blood on him today they saw something a bit abnormal, so to be sure there's something wrong they are running more tests. They are not certain but the doctors think there could be a chance he might have a fungal infection now. Since he has been on antibiotics for 17 of the 22 days he's been in the hospital, there's a good chance he could have it. But the doctor last night didn't seem to think he would, but to be safe they are running tests. Unfortunately, it may take a few days for the test results to come back, so we wait...again.

Not Much Change

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Matthew is three weeks old today. That seems like a short time when you think about it, but it seems like forever ago that this all started. We really appreciate all of the support and comments we're receiving. It's nice to know that so many people are following along with his progress.

Matthew is about the same today as the past day or two. His blood gases have been pretty stable other than when he's touched too much or when there is too much noise around him. The doctors have had to increase the pressure on the ventilators a bit because they couldn't get his pCO2 levels down. His O2 sat is great though on nearly room air (~25-30% O2). His belly is down a little more today, probably because he's still urinating quite well. They weighed him last night and he weighed 960g. They don't expect him to really be above his birth weight until he's around four weeks old, so this is probably still high due to fluid retention.

They were considering giving his some breast milk this morning, but they were unable to hear any bowel sounds (which would indicate his bowels are not ready to start processing food), so they've decided to hold off for a bit. They may try tomorrow morning, but it doesn't seem likely. The doctors are being extremely cautious with this because there is the risk that he can develop Necrotizing Enterocolitis (NEC). This is a very serious condition, and the fact that he's had a belly infection already increases his odds that he will develop NEC.

Hooray, it was a good day!

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The little guy just never ceases to amaze me! Today was a good day for Matthew. They stopped giving him the Dopamine and Dobutamine so the only medication he is getting now is the Morphine and Ativan for pain control and sedation so he doesn't fight the ventilators. He is still getting the Nystatin for prevention of the thrush. He is still receiving nutrition through his IV, but they are hoping they will be able to start him on breastmilk sometime this weekend. The color in his belly was actually pink in some areas and the gray color has subsided dramatically, but it is still there. Unfortunately, his belly was still swollen, but he is still urinating so hopefully it will go down a lot more in the next few days. His settings remain the same on both ventilators, and his oxygen and carbon dioxide levels appear to be stable until he is moved, or touched or hears loud sounds. He seems to be extra sensitive to sounds, touch and movement today; but once he settles down, he seems to do pretty well.

Thank God for such a good day today! I feel like it has been awhile since we have had one, but I'll take every good day we get whenever we get one!! :)

About the same

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Matthew is doing about the same as yesterday. His belly is still looking pretty swollen from the fluid retention, officially called ascites (sounds like a-sigh-tease). Earlier in the day his belly seemed to have gone down, but then it slowly went back up by the evening. Just for shock value, the amount of fluid that they withdrew from Matthew's belly area yesterday (60 ml) would be equivalent to withdrawing about 3 liters out of an adult. Just to give you a perspective, we have approximately 5-6 liters of blood in our adult bodies. So you can see they withdrew a lot of fluid for his size. They did not withdraw any fluid today but they are watching it closely in case he needs to have it done. Fortunately, he is still urinating which is a good sign that his kidneys are working and that he is slowly getting rid of the excess fluid by himself.

His blood pressure and oxygen and carbon dioxide levels have been stable for the most part. His pressures on the ventilator have been about the same. They have tried to come down a bit more on the pressure on the Jet Ventilator, but he is not able to get rid of his CO2, so they keep him where he is at which is considered to be low settings for the Jet. He still does not like loud noises, does not like to be touched and he really hates to be moved, so when these things occur his levels become unstable for a bit but then they return to an acceptable level after he settles back down.

They are slowly coming down on the amount of Dopamine and Dobutamine levels they are giving him for his blood pressure. It is their hope that once they take him off of these medications, he will be able to maintain his own blood pressure. They are daily taking blood samples to measure his blood gases and his electrolyte levels so they can make the necessary adjustments for him.

Everything is basically the same as before and the only new thing is that they are giving him Nystatin, which is an antifungal agent to help prevent him from getting Thrush, which is an infection of the mouth or throat.

Words of Encouragement:

In my daily devotional that I get from K-Love, today's entry was very encouraging for me, and I wanted to share it with all of you, hoping it will do the same...

"So Mary and Martha sent someone to tell Jesus, 'Lord, the one you love is sick.'" John 11:3 NCV

Where do our prayers go?

Someone went to Jesus on behalf of Lazarus, and because they went, Jesus responded. The healing wouldn't unfold for several days, but the timer was set when the appeal was made. Ever wonder where your prayers go when they leave your lips? Listen: "There was silence in heaven...and...Another angel came and stood at the altar, holding a golden pan...with the prayers of all God's people. The angel put this offering...before the throne. The smoke...went up...to God with the prayers of God's people" (Rev 8:1-4 NCV) Why was there silence in heaven? Because someone was praying! Heaven pauses to hear the prayers of someone like you! Listen: "The prayers of all God's...people...went up...to God." Awesome! Your words don't stop until they reach the heart of God!

But notice, the friend who went to Jesus on behalf of Lazarus said, "Lord the one YOU love is sick." He didn't base his appeal on the imperfect love of the one in need, but on the perfect love of the Savior. He didn't say, "The one who loves You is sick." No, he said, "The one YOU love is sick." That is different! The power of prayer doesn't depend on the virtue of the one who prays, but on the unchanging love of the One who hears. Aren't you glad? You may be deeply flawed; you may not understand the mystery of prayer, but this much is clear: action begins in heaven, when someone on earth prays.

Once again, we can't thank all of you enough for your prayers and support, for your wonderful comments and the meals (which are great on the days we are exhausted). It gives us comfort knowing that all of you are out there praying for our little baby and for us. May God bless each and every one of you!

Love, Jason, Jenn and Matthew

Some Setbacks, but Stable

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Matthew's conditioned worsened a little over night. They had to go back up on the Jet ventilator settings to levels above where they were before the surgery. Fluid is continuing to collect in his belly, and his urine levels have dropped significantly. They used a needle to withdraw about 60ml of fluid from his belly, which relieved some of the pressure on his lungs. This helped with his respiration, allowing them to come back down on the ventilator settings.

He's still receiving Dopamine for his blood pressure, but they've also started giving him Dobutamine to help maintain it.

In the afternoon, his urine level started increasing again which is a great sign. They've increased his fluid levels to provide him with more nutrition. His blood gas numbers improved dramatically during the day, allowing them to reduce the ventilator settings as well as reduce the oxygen level in the air he is breathing. By 9 p.m., he was on almost the lowest settings on the Jet and was breathing room air. Though he's been on room air from time to time in the past, he was never on it for very long as the nurses were always chasing his blood gas levels with the ventilator settings.

Successful Surgery

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Matthew's surgery was a complete success. It went very smoothly, and there are already signs of improvement. The whole procedure took about an hour from prep to cleanup, but the actual surgery only took about 15 minutes. They made an incision under his left arm about 1 cm long. They spread his ribs (which are quite flexible in a baby this young) and went around behind his left lung. They put a small metal clip around his PDA to pinch it closed. Fortunately, there were no surprises. In fact, the doctors didn't see one drop of blood during the procedure (internally I assume).

After the surgery, the doctors noticed an immediate improvement with his pCO2 (partial pressure of carbon dioxide). It had been in the 40s to 50s most of the time (with occasional excursions above 100), but after the surgery they had a hard time getting it above the 30s (basically his body was doing too good of a job getting rid of CO2). They don't want his O2 or CO2 levels too high or too low since either can cause problems. They came down on his ventilator pressures and breathing rates to help with this.

Although things look great now, it will be a few days before we know if there are any complications. There are no common complications, but there are a number of things that can occur in a small percentage of cases.

We got a chance to measure him tonight. He's grown a bit since birth. He's now 13 2/3" long.

Preparing for Surgury

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The PDA surgery is scheduled for tomorrow. While it's scary to know your child is going into surgery, I'm relieved that it's finally happening. Once his PDA is closed, a lot of things should start to improve. His blood oxygenation should improve significantly, which will allow them to start feeding him breast milk. Once he starts feeding, he should gain weight much more rapidly. Once he starts gaining weight, he should have the muscular ability to breathe on his own. Once he's breathing on his own, his lungs and throat should improve since they won't have the ever-present irritation of the intubation tube. Once his lungs and throat improve, he'll be able to cry. Once he's crying, he can start talking. Once he starts talking, he can go to school. Once he goes to school, he can get into college. Once he graduates from college, he can go to medical school. Once he graduates from medical school, he can earn enough money to pay us back for all this...:-)

Matthew is looking about the same as yesterday which is good. His white blood cell count is a little high still, so they're going to keep him on antibiotics through the surgery. That's probably a good thing anyway since it can lessen the likelyhood that he'll develop an infection from the surgery. The surgury is scheduled for the late afternoon, so we probably won't have an update on the site until late tomorrow night.

Definite Improvement

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Matthew definitely looks better today. They gave him Dopamine last night to increase his blood pressure, and it's made a noticeable improvement. The increased blood pressure helped reduce the discoloration around his eyes and belly, as well as helped reduce his fluid retention so he doesn't look as puffy as he did yesterday.

He's also much more active again today. This is probably largely due to his infection subsiding; but whatever the reason, it's good to see him so active again. He's moving his arms and legs quite a bit, and he even opened his eyes a couple of times.

Praise God!

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God is sooooo good and faithful!!! For the last few days I feel like I have been on a wild faith ride and I have been questioning and asking God why did this happen to me, to Matthew and to us as a couple. I can't understand why I couldn't carry the baby to term and how I never really got to enjoy so many fun parts of being pregnant...I have so many questions with no real answers.

I have had many nights of sobbing and often times I picture myself either at Jesus's feet or being held in his arms crying uncontrollably and just asking why. He holds me close and I know he feels my pain and hears my prayers. The one answer that I am still getting consistently is that God is in control and to lean on Him during this difficult time and to trust Him. This of course is easier said then done, so recently I've been asking God for some encouraging news or signs that everything is going to be okay. He was so faithful to answer me in many ways. First of all, not only is Matthew doing better, but I also heard an encouraging song on K-Love Radio and the words were about how God loves you and that things are going to change. I had heard that song a hundred times before and I even sang along with it, but this time the words went right into my heart and I was comforted knowing that God really heard my prayers. Then at church today I heard an extremely encouraging story about a man who has survived some impossible medical conditions. According to this man, he should be dead right now, but he has survived. Recently he was hospitalized again and the doctor's told him he wouldn't be out of the hospital for a long time but with the miraculous power of prayer he was able to go home within a couple of weeks and he is doing great! After hearing his story, I remembered thinking, Wow, God must really have a plan for this man's life and then I instantly thought of Matthew and thought God has a plan for his life too. Since he is 15 days old today, his chance of survival has increased from 50% to about 75%. This is not to say that he is out of the woods and won't have future problems, but it is encouraging to know that I am more likely to bring my baby home. Then to top it all off, the nurse that I wanted to have removed from Matthew's case, has been removed permanently and there is a new nurse taking care of him on night shift. The charge nurse has not confirmed this with us yet, but I will keep you posted. So far we have not had to meet with the nurse who has been removed and I hope we don't have to, but I was praying that God could have her removed without confrontation and that is what He did. I was told earlier that they normally don't remove the primary nurse, but it seems that this is what they have done in this case. Jason and I have met the new nurse and we really like her and my instinct is telling me she is the right person to take care of him.

So please keep praying for Matthew, for the doctors, nurses, respiratory therapists and so many other medical staff that are taking care of him and of course for us as we continue through this difficult process. Your prayers are felt and they are seen as well. God answers us in ways that are surprising and sometimes not what we expect, but if we keep our hearts and minds open we can see the work of His hand everywhere! Thank you all so much. We couldn't be doing this without you!

Slow Progress

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Matthew looked about the same today, but the nurses said he looked better to them. They did have to put him back on the Jet, but they've come down a bit on the breathing rate (though they did have to go up a bit on the pressure). He's still extremely sensitive to sound and touch; you can really see how it affects him when he's touched too much or when people are talking too loudly.

The doctors and nurses are still confident that he'll be well enough for the PDA surgery on tuesday. We've been told several times that once the PDA valve has been closed, we should see much more dramatic improvement.

We didn't go down last night to meet with the night nurse because Jenn wasn't emotionally ready to deal with her. Jenn's much more relaxed though, knowing she isn't taking care of Matthew.

More information

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The UAC (Umbilical Artery Catheter), which measures the blood gases such as the partial pressure of Carbon Dioxide and oxygen, began to malfunction; so they had to remove it. They were unsuccessful in getting another one inserted so they hooked Matthew up to a different kind of system that still measures his Carbon Dioxide and Oxygen levels but it's not inserted into any of his blood vessels. It's not as accurate as the other line, but it is pretty close.

His color looked a bit off again today and his blood pressure was down. The last time this happened they ended up giving him two blood transfusions. They are running more tests to determine if that will be necessary. In the meantime, they started to administer Dopamine, which is a medication designed to help increase his blood pressure. He is also starting to retain more fluid again, and with the amount of fluid that he has retained so far, it sort of gave us a glimpse of what Matthew will be like when he has grown into his skin more and has more of his baby fat. Not that I want him to be retaining fluid, but it was cute to see the baby fat look. He was a tiny bit more active today.

It is still hard to be on this emotional roller coaster; especially knowing we have many more months of this to come. I know it was unrealistic to think this, but I guess I expected Matthew to recover a bit faster than he is. The little guy is pretty sick so it is going to take awhile to recover from all that has happened to him. The honeymoon phase is over and we are now getting down to business and entering the more realistic road to recovery.

Please keep praying for God to help little Matthew and for His help in Guiding the doctors and nurses that interact with him. Please keep praying for our strength to get through each day and night. Thank you again to all of you for your prayers!

About the same

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We spent quite a bit of time down at the hospital this afternoon. His carbon dioxide and oxygen levels are still sporadic. They have been adjusting his numbers all day on both of the ventilators and have had to suction his airway and mouth quite a bit. They have temporarily taken him off the Jet ventilator to see if he will tolerate just being on the traditional ventilator. When we were there, his carbon dioxide levels kept rising, so they thought they might have to put him back on the Jet Vent.

His color still looks good and his blood pressure and heart rate seem to be stable. His belly is still very discolored, but it doesn't look as dark as before. He wasn't very active again today, but he does keep moving his legs once in awhile. According to Jason and the doctor, he has been able to move his ears too (just like his mommy).

We have our meeting later tonight with the night shift nurse; so keep praying for God's wisdom and discernment for this meeting.

Better and Worse

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When we visited this afternoon, Matthew was looking much better (better than he's looked in a long time). His color has improved dramatically and he's becoming a bit more active, but not quite like he used to be. It appears the antibiotics are taking effect.

When we visited late in the evening, his blood gas numbers were all out of range and moving rapidly. One of the respiration therapists came and suctioned out his mouth and throat. The doctors also ordered another chest x-ray to determine the position of the breathing tube as well as examine the state of his lungs. The x-ray confirmed that the breathing tube was in the right position, but his lungs are still quite immature.

Some improvement

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It was encouraging to know that Matthew had a much better day today than the last couple of days. He is far from being where he needs to be but it was good to see him looking a bit healthier. Matthew is responding well to the second blood transfusion that he received. His color is very pink today compared to the ash-like color he was before. His belly is still black/blue in color and it does not seem any bigger today. In fact it actually looks like it has decreased a tiny bit. The edema is no longer moving up into the chest cavity and you are able to see his rib cage again. He is urinating a lot, which means the Lasix medication is working and he is not retaining as much fluid as before. He is moving around more today and they even have him on an IV drip of medication to keep him slightly sedated so he doesn't fight the ventilator. His pressure on the ventilator is the same as yesterday and unfortunately his oxygen and carbon dioxide levels are still very unstable. The chest x-rays today are also showing that he may be developing chronic lung disease. He is still on antibiotics and will be until Monday. They are tentatively looking at this Tuesday coming up to perform the surgery to close the PDA, providing he is stable enough.

Please pray that he is so stable on Monday that they feel very comfortable performing the surgery. Please pray for healing in his lungs as well as the infection he is fighting and also for the bleed in the brain to not increase. Keep praying for healing of all the unknown health problems that may come up down the road. The nurse who was mentioned before is temporarily not working with Matthew but she wants to meet with us on Friday to try and work some things out. Please pray that all goes smoothly and that God gives us the right words to say to her and that the situation gets resolved peacefully.

The test results with regards to testing the placenta and the amniotic sac have also come back and everything looks normal, so it appears that we may never know why this happened. My blood work came back normal too except that my white blood cell count was high. I don't know if there is any significance to that or not but I hope to find out more from my doctor later.

Thank you again for all your prayers, support and comments!!

Love,

Jason, Jenn and Matthew

Still Critical

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Respiratory - Matthew is still critical today. They had to turn up the pressure on the Jet ventilator (which is not a good sign) to help get rid of the elevated carbon dioxide levels in the blood. Whenever they turn up the pressure on the Jet, this means that they are having to do more of the breathing for him as opposed to him doing more of the breathing on his own.

Heart - Since Matthew is so unstable at this time, the doctor's have postponed the surgery to close the PDA until sometime next week. The surgery would add a lot of stress to his body and right now he doesn't tolerate any stresses at all. Matthew was given a blood transfusion yesterday, which he didn't really respond well to so they had to give him another blood transfusion again today. Because he is so ill, his arteries are starting to leak, which now means that his blood pressure is dropping and his heart rate is increasing to try and pump more blood to his body. They hope that with the second blood transfusion, that this will help to stabilize his blood pressure and heart rate.

Brain - Since Matthew's condition has become worse so rapidly, the doctor's were concerned that the bleed in his brain has increased, so they took another ultrasound of his brain. Officially it was stated that it went to a grade 3 bleed, but the doctor showed me the ultrasound results and he and his colleague think that the official report is an overstatement and they actually believe it is still a grade 2 brain bleed. They will continue to monitor the bleed in his brain, especially given his current condition.

New developments - His blood sugar levels were extremely elevated today. They measured him at 588. Acceptable levels are between 80 and 130. So they put him on an insulin drip to bring down his sugar levels. By 1:30 in the morning, they were able to take him off the drip and his sugar levels seem to have become stabilized.

They had to decrease the amount of fluids they were giving him because he is starting to retain fluid. They are even giving him Lasix which is a medication used to help decrease the amount of fluid that is being retained.

His belly is still very black and blue and now he has pitting edema, which means that whenever you touch his skin (like you are poking him) it leaves a depression in his belly. The bruising color and edema (swelling of the tissues due to excessive fluid) is slowly progressing upwards next to his chest cavity, which is also making it more difficult for him to breathe.

He is still on the antibiotics and looks like he will be for the next 7 days. In addition to all this, I've had to file a formal complaint on one of the nurses who is taking care of Matthew. I have requested that she be removed from caring for him. Please pray that God removes her from this case without a lot of complications or animosity between her and us.

Emotionally today I feel very raw and vulnerable. I feel like my endurance, patience and faith are really being tested today. I feel like I don't have the strength to make it through the day but that is when I know God is carrying me and the only set of footprints that can be seen are His. Normally I am the type of person who trys to control or "handle" things on my own, but today I can't do that and that is where God really wants me to be, not "handling" it so He can! I didn't even realize how much I really need to have Jason here with me, so he is taking an earlier flight back tonight and will be home by 1:00 in the morning. This experience is drawing us so much closer together and he has been such an amazing support for me and so loving through this whole traumatic time. I don't wish this kind of pain on anybody, but if God can use this situation for His glory then I pray that He can use us to reach out to others through this.
Thank you again to everybody for all your prayers and support even from those we don't know. It is encouraging to know that there are people who feel led to pray for Matthew and us even though they don't know who we are. May God bless each and every one of you today and always!!!

Critical again

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Respiratory - Today was not a good day for little Matthew. He is back on the jet ventilator today because his carbon dioxide levels were extremely elevated and they were not able to get them back down to an acceptable level while still being on the regular ventilator.

Heart - The doctor also confirmed that the PDA valve in the heart is NOT closed and they will have to perform surgery later this week. They would normally do the surgery sooner than later, but to top everything off, Matthew has an "unknown" infection. They are not able to determine what is causing the infection yet, so they have him on three different antibiotics until the test results from the blood and spinal fluid samples come back. The down side to waiting to do the surgery is that his lungs could start to fill with fluids.

Brain - On Friday, a second ultrasound was done to see if the brain bleed has worsened. The unofficial report on Friday was that it did not. However, today two different doctors could not agree on what they thought they were seeing, so they are waiting for a third opinion and we won't know until tomorrow the official results of the bleed.

New developments - His abdomen is very distended and is blackish blue in color. He looks like he is badly bruised and the color has darkened over the last several hours and may continue to get worse. According to the x-rays they are taking, they don't think it is a gut infection, however the other signs they are seeing look like it could be a gut infection. On a plus note, they are no longer suctioning dark black liquid that looked like motor oil from his stomach. It is now beginning to look a bit more normal but they are still going to watch it for further problems.

He used to be very active but he has been lying in his bed pretty limp and at times appears to be lifeless. He used to grab my finger but he doesn't have the strength to do that right now.

This has been a very emotional day for me and it has been extra hard since Jason is out of town. I was warned that Matthew was going to have hard days like this, but I don't think anything can really prepare you for it until you are there. It breaks my heart to see my baby so ill and laying there so helpless and fighting for his life...I know God is in control and he is a God that can perform miracles beyond our wildest imaginations. It is hard to go through these dark hours not knowing which way things are going to turn, but I find peace in God and in knowing that all of you are praying for our little one, Matthew (his name means gift from God). Thank you for your prayers and support!

Back on the Respirator

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Matthew went back on the traditional respirator at about 1:30 this morning. He made it almost 12 hours breathing by himself, but you could tell that it was pretty exhausting for him. When we were visiting him late last night, he had a number of apneic episodes. Most of the time he started breathing again on his own, but several times we had to shake him a bit. It was a scary thing to see, but the doctors weren't concerned. It's extremely common for a preemie this young, and as long as he doesn't stop breathing for more than a minute or so, it doesn't hurt him (it's no different than holding your breath for a minute). Even if shaking him didn't restart his breathing, they could bag him and intubate him in less than a minute.

Off of the Respirator

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Amazingly, Matthew was taken off the respirator today and put on a device called a CPAP. Being on the CPAP means he's breathing on his own now!!! Basically, it provides him air through something similar to a nasal canula, except it provides positive pressure to help him keep his lungs inflated. The respirators he's been on up until now required having a tube down his throat to his lungs. It's so great to see him without that big tube down his throat. Doctors have told us that it's really common to see young babies transition to the CPAP, only to have to go back onto a traditional respirator later. So although things are definitely looking up today, he may not stay this well.

More Information

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Today is the last day for Matthew to be given his antibiotics...Yeah! Since there is a high risk of infection with several lines going through the umbilical cord after 7 days, the doctor inserted a PIC line into his right arm. This is done so they can remove the feeding line that is in the umbilical cord and continue feeding him intravenously through this new PIC line.

The heart medication (Indosin) that they were giving him to close the heart valve, known as the PDA (Patent Ductus Arteriosus) is not working. Several ECG's (Electrocardiogram) were performed and the results showed it open, then closed and then open again. The doctor's are still trying to determine whether or not they should give him another dose of Indosin or to perform surgery. They have already given him more doses than they normally would and their main concern of giving more doses is the side effects. One of the major side effects of too much Indosin is Renal (Kidney) failure.

It has been several days since Matthew has been stable enough to move him onto the scale to be weighed. Today they were able to get a weight on him since his birthday. He is currently weighing in at 623 grams (~1 lb. 5.5 oz). At birth he was 1 lb. 11 oz, so he has lost about 6 ounces. It is normal for any baby to lose weight after birth only to gain it back again in a couple of weeks.

On the more delightful side of things, Jason and I got to hear our son crying and cooing for the first time today since the tube of the respirator had been removed. He cried when we changed his diapers and to top it off he decided to pee on Jason's hand the second we opened his diaper. I have managed to change his diaper before without getting wet but I know my day is coming!

Good Day

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Today has been a relatively good day. They've been slowly weaning Matthew off of the respirator. They've lowered the pressure a bit more, and they've reduced the breathing rate from 40 breathes per minute to 28. They did another ECG and it looked like his PDA was open at one point and closed at another point. They're going to give him a third round of the medicine and see if they can close it for good. They'll do another ECG tomorrow to see how things look.

They're also planning on doing another brain ultrasound tomorrow to see what's happened with his brain bleed. The Neonatologist said that that haven't seen any signs that the bleed has gotten worse, but they won't really know until they do the brain ultrasound. Hopefully we'll know the results tomorrow.

Slight Improvement

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After a recent chest x-ray, doctors said it looks like Matthew's air leak between his lungs and chest wall has disappeared. Because of this, they took him off the jet respirator and put him back on the traditional respirator. This is a good sign that his lungs are improving. He's been back on room air most of the time since he's been off the jet; and since he doesn't fight the traditional respirator as much as he does the jet, they haven't had to give him any sedatives all day. It's good to see him more active.

The also performed another ECG on his heart and discovered that the medicine they have been giving him to close the PDA valve hasn't worked. They're going to try increasing the dosage and give him another round. We should know tomorrow or the next day if it has worked. If it hasn't, surgery will be required to close the valve. This is generally not a big deal, and the doctors have said that babies generally handle this procedure very well.

Stable

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Matthew looks a little more stable today. Jenn and I both got to change his diaper for the first time recently as well as take his temperature. He usually wakes up when we come by for a visit, and the last couple of times he's opened his eyes and looked at us.

Complications

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We found out today that Matthew has had a small bleed into the ventricles of his brain. This type of brain bleed is extremely common in babies born this early. With the amount of bleeding so far, doctors have said that it will have virtually no impact on his brain. The doctors will be doing another head ultrasound on friday to see how things are changing. There are two cases they seem to be worried about:


  1. Bleeding continues into the ventricles causing the ventricles to expand. This can apply pressure to the brain and could cause brain damage if not treated.
  2. Blood could break through the ventricle walls and into the brain tissue directly.

Doctors also performed a chest ultrasound and determined that his PDA valve (the valve that shunts blood from the lungs to the body in utero) is open. This valve normally closes at birth so that blood can flow to both the lungs and the body. When left open after birth, blood flows in reverse through the shunt, sending too much blood to his lungs. This results in less blood going to his body. They're giving him medication now to help close the valve. We should know in a couple of days whether this medication is working or if the doctors will have to close it surgically.

Lung Problems

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The doctors stopped by today to let us know that during an overnight chest x-ray, they had discovered a leak between his lungs and his chest wall. They've switched him from a standard respirator to a "jet" respirator. Instead of the normal 15-20 breaths per minute on the regular respirator, the jet breathes for him at 450 breaths per minute (at a very low pressure). They've also had to put him back on oxygen. Hopefully this will resolve the problem.

Good News

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We saw the doctor this afternoon, and there are some good signs. They gave him a dose of surfactant (a soapy substance in the lungs that helps prevent the alveoli from closing), and he immediately was able to start breathing room air (normally, premature babies are on high levels of oxygen for quite awhile after birth). The doctors were quite surprised that he was able to transition to room air so quickly. His heart is strong and his blood gas levels look really good.

Birth

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For some reason that the doctors haven't figured out yet, Jenn went into early labor friday (June 20, 2003) morning. The doctors did what they could to stop the labor, but were unsuccessful. Matthew Clay Beaver was born at 8:50 AM, Saturday June 21, 2003. He weighed 1lb, 11oz and was 13 inches long. Jenn was only 24 weeks along (just over 5 months), so he's very early. He's stable for the moment, but things are critical at this stage.