September 2003 Archives

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'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


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


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.

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