Updates on my health
October
10/1/02 Sorry I haven't written in a while. Things have been very, very busy. I love being at home...I get lots and lots of attention! :) My mommy and daddy are really, really pooped though. I'm kind of a high maintenance baby. I've been doing pretty well over all. I've been having a lot of gas these days because of the formula for preemies. It makes it hard for me to sleep because I'm grunting and squirming a lot, and sometimes I 'm not a happy camper because of it. I have a home care nurse that comes to my house just to see me! She comes about twice a week and checks my weight gain, height, head circumference and other important information. I weighed 6 lbs and 2 oz as of Sunday! Can you believe it? My chins keep getting bigger and bigger! :) Today I went out with my mommy and daddy for the first time since I was discharged from the hospital. We went to the eye doctor for the yucky eye exam. The good news is that my left eye is almost out of the woods for retinal detachment. My right eye is improving little by little, but things still look kind of scary in there. The doctor told my parents that my ROP is the one of the worst cases he's seen. All the babies he has seen that had it this bad all had surgery for retinal detachment. So, I still need lots of prayer! There is a wall of scar tissue that needs to disappear without pulling on the retina. More often than not, this wall tends to pull on the retina and surgery becomes inevitable. However, so far he sees no signs of detachment, but the wall is still very much there. Right now, his main concern is that I will have some kind of vision. Once I am in the clear for detachment, he will worry about what kind of vision I will have. He also told my parents that he can see that I'm already nearsighted (most babies are born farsighted), and that I will most likely be very, very nearsighted. My next eye exam is Wednesday. I have to go to the pediatrician on Thursday for my first baby visit. I have some new pictures for you to look at....bye!
10/9/02 Hi everyone! A lot of things have happened since I wrote last. The good news is that I'm 7 lbs! The bad news is that I have reflux and it makes me cry out a lot when I'm lying down. I started taking medication for reflux yesterday. Hopefully it will help. I went to the eye doctor today for another exam. The eye doctor said that this is the first exam where he could actually say he feels things are getting better. My left eye is still improving and the active blood vessels in my right eye have diminished a lot. The wall of scar tissue is still there, but the fact that there is little to no activity with the vessels is a good sign. Another problem in my right eye is that there are blood vessels that are pulling on the macula. This may cause markedly decreased vision if it continue to pull on it. Also, the doctor said that they may give me glasses in 3 weeks. It is important that my brain develops as my eyes make connections with my brain. If this does not occur, then no matter how good my eyes may seem, I will not be able to see well either. My parents are so thankful to see improvement in my eyes. The doctor is also praying for me. He told my mommy and daddy that if I could see at all, he thinks that is great because he said that I will be very lucky to be able to see all. I'm not sure if all this stuff makes sense, but basically, I'm doing better, but I still need lots of prayer. Miracles have already occurred and more miracles are yet to come...May God receive all the glory. My next eye exam is next Wednesday. I'll continue to keep you updated...By the way, my due date is October 15th. I should have been born next week sometime. I'm already mature for my age. : )
10/16/02 Guess what! Yesterday was my actual due date! I was born 14 weeks too early...so my corrected age is 1 day old. I'm doing pretty well for a one day old baby. : ) I'm 7lbs and 5 ounces and 20 inches long as of yesterday. Not bad for a preemie! Today I went to the eye doctor and he says that my eyes are improving. There is a problem with dragging on the macula in both eyes which may lead to blurred/distorted vision, but right now it's not too bad. We are hoping that this dragging will stop before any damage to my vision occurs. The wall of fibrous scar tissue is still in my eye so until that disappears I'll always be at risk for retinal detachment. The doctor also said that my eyes are farsighted, so I may not need glasses anytime in the immediate future unless he sees more changes. That's good news! Although I am not out of the woods yet, the fact that my retina is still attached is very, very good! Overall, I'm doing pretty well. The medication for the reflux is helping me so I'm happy about that, too. Tomorrow I'm going to the pediatrician for my synagis shot. I have to get one of these shots every month until April. It's a special shot for preemies born under a certain weight in order to help them build up a resistance to respiratory viruses. I'm not looking forward to it, but you gotta do what you gotta do. My mommy and daddy have been so busy taking care of me, they haven't had too much time to take pictures. They'll try to add some more pics later. Thanks for checking up on me. bye!
10/16/02 Guess what! Yesterday was my actual due date! I was born 14 weeks too early...so my corrected age is 1 day old. I'm doing pretty well for a one day old baby. : ) I'm 7lbs and 5 ounces and 20 inches long as of yesterday. Not bad for a preemie! Today I went to the eye doctor and he says that my eyes are improving. There is a problem with dragging on the macula in both eyes which may lead to blurred/distorted vision, but right now it's not too bad. We are hoping that this dragging will stop before any damage to my vision occurs. The wall of fibrous scar tissue is still in my eye so until that disappears I'll always be at risk for retinal detachment. The doctor also said that my eyes are farsighted, so I may not need glasses anytime in the immediate future unless he sees more changes. That's good news! Although I am not out of the woods yet, the fact that my retina is still attached is very, very good! Overall, I'm doing pretty well. The medication for the reflux is helping me so I'm happy about that, too. Tomorrow I'm going to the pediatrician for my synagis shot. I have to get one of these shots every month until April. It's a special shot for preemies born under a certain weight in order to help them build up a resistance to respiratory viruses. I'm not looking forward to it, but you gotta do what you gotta do. My mommy and daddy have been so busy taking care of me, they haven't had too much time to take pictures. They'll try to add some more pics later. Thanks for checking up on me. bye!
10/21/02 On Friday night my parents took off my nasal cannula. The doctor said that if I keep my oxygen saturations up high without the extra help, then I don't need to wear it anymore. So far I've been doing really well! Praise God! I also don't need to wear the leads on my chest (cardiorespiratory monitor). The only thing I've been keeping on is the pulse oximeter which measures the oxygen saturation in my blood and my heart rate. I feel like a new baby! : ) My mommy and daddy think I look so different without all that stuff on my face. Tomorrow I'm coming up to the preemie follow-up clinic at Loyola. They are going to assess my progress ever since I was discharged from the hospital. Hopefully I'll come back with a good report! My next eye exam is not until October 30th, so I'll keep you posted on that...Oh one more thing, as of Saturday I weighed 7 lbs and 13 ounces!
10/30/02 I have so many good things to report today! First of all, I am officially cannula free! I don't need my monitors anymore either! Can you believe it? I'm 8 lbs and 8 oz. today! At my follow-up appointment last week, they said that I was doing great! I'm going to go back in a couple of months in order to check my developmental progress. Also, today was my eye appointment. The doctor said that he is amazed that I have not had any retinal detachment yet. He told my parents that I will always be at risk for retinal detachment, but as time passes the chances are less and less. However, I'm still very, very young. I'm about 2 weeks old (corrected age), so there is still a lot of growth still occurring in my eyes. The dragging on the macula is a big concern still and the wall of fibrous scar tissue is still there.... These are two areas that could cause problems still. Another new thing is that the doctor wants me to wear a patch on one eye for an hour each day when I am awake and alert. The next day I have to wear a patch on the other eye for an hour. He wants to make sure that I am using both eyes equally and to strengthen my eye muscles. I look like a baby pirate, but you gotta do what you gotta do. Thanks for all your prayers...God bless you all!