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.

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!

            

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 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.

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!

        

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.

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.

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.

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.