Jenn: December 2003 Archives

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!

        

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.

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.

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.