March 2004 Archives

Doing Great!

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

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

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

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

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

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

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

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

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

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

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

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

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


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This page is an archive of entries from March 2004 listed from newest to oldest.

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