Updates on my health
August
8/1/02 I lost a little weight since yesterday. I'm down to 980 grams. I'm still struggling with my oxygen settings. They are still pretty high. Nothing else is really new today. We'll keep you updated...
8/2/02 The good news is that they haven't found an infection in my lungs. The bad news is that I'm still having a hard time with my oxygen levels. They are going to give me steroids to help strengthen my lungs. However, there are some side effects with this (possible high blood pressure, raised blood sugar levels, and greater risk for infection). The doctors feel that my weak lungs need a boost to help get me off the ventilator. Please pray that these steroid shots will help me and not harm me. Thanks!
8/3/02 I'm doing a little better today. They are trying to lower my oxygen settings little by little each day. I haven't been gaining weight these last few days. Hopefully, I will gain more weight tomorrow...
8/4/02 I'm doing much better today. They lowered my ventilator settings a lot today and I'm doing well. They might take out the ventilator tomorrow or the next day depending on how I'm doing tomorrow. After that they will give me something to help me breathe that is not as invasive. I'm really happy about that!
8/6/02 Yesterday they took me off of the ventilator! I now have something called a CPAP in my nose to help me breathe. It's two prongs that go a couple of inches into my nostrils and push positive air pressure to keep my lungs inflated. I also get some oxygen through the CPAP. I really don't like the CPAP so I'm crying a lot these days. People can hear me cry now because my vocal chords are not blocked anymore by the endotracheal tube. I've been doing very well these last two days. My parents are really proud of me! The nurses moved me into an isolette. It's like an incubator. Once I'm able to keep my own body temperature, they will move me to a bassinet or crib. Oh, also I weigh one kilo (1000 grams) again!
8/7/02 Today was another great day! The doctors took out the CPAP and put in a nasal cannula. It's a lot smaller so it's much more comfortable for me. I'm really happy about that! The nasal cannula lets me do even more of my own breathing so if I do well on this that means my lungs are getting stronger and healthier. Praise God!
8/8/02 I had another great day today! My mommy held me for 2 hours! I've gained 10 grams since yesterday. They are giving me a little more feedings (8 cc every 2 hours) and they are adding fortifiers to my mommy's milk to help me gain some weight. Overall, another great day! Praise God!
8/10/02 I've gained another 10 grams. I'm now 2lbs and 4.5 oz. Everything is going well except that my heart rate is pretty high these days. Hopefully, this will go down to normal ranges soon. On Monday, they are going to do a 2nd head ultrasound to see if there is any bleeding in my brain. The first ultrasound showed that there was no bleeding, so hopefully that will not have changed. On Tuesday, the doctor is going to exam my eyes to see if the blood vessels connecting the retina to the brain is growing normally. A lot of preemies have problems with the blood vessels growing erratically and causing retinal detachment. Please pray that these blood vessels are growing normally. Thanks!
8/12/02 I've gained lots of weight! Today I weighed 1190 grams (2lbs and 10 oz)!!! As of today, I'm eating 14 cc of my mommy's milk every two hours. My heart rate was not as high today. Praise God! We'll get the results of the head ultrasound tomorrow. My mommy and daddy gave me a sponge bath for the first time! I was really good, I didn't cry at all! :) My sodium levels were low today, so they're giving me an extra saline solution. Hopefully, this will go back to normal. Also, my direct bilirubin levels were a little high, so the doctors are keeping an eye on that, too. Overall, the last couple days have been pretty good!
8/13/02 I lost some weight today (40 grams). They lowered my feedings by half b/c of the extra saline solution that I was getting. My sodium levels are still low, but they got a little higher today. The results of the eye exam were inconclusive because the blood vessels were still too immature. We're still waiting on the results of the head ultrasound. Tomorrow is my 1 month birthday! : )
8/15/02 Praise God! My head ultrasound results came back normal! Also, I gained 80 grams. I now weigh 1,230 grams (2 lbs. 11 oz). My sodium levels are rising levels little by little. Yesterday I had 6 bradycardias. Bradycardia is when a baby's heart rate slows down below the normal ranges. The doctors think that this may because of reflux. A lot of preemies have reflux problems. My bodily systems are pretty uncoordinated because I was born so early. If the problem gets worse than they will give me medication. The worst case scenario would be surgery. Please continue to pray for me I still have many obstacles to overcome. Thank you!
8/17/02 These days have been busy! I'm wearing baby clothes for the first time! I also got to do kangaroo care with my mommy and daddy. Kangaroo care is when I wear only a diaper and either my mommy or daddy holds me against their skin. I really like that a lot! Their body keeps me warm, and I sleep very well when I am with them. I'm gaining lots of weight every day. As of yesterday I weighed 1,320 grams (2 lbs. 14 ounces). I'm almost 3 lbs!!! The only problem is that I still have problems with my oxygen saturation levels a few times a day. This is usually followed by the bradycardias. Please pray that my lungs will get stronger so that I won't need as much supplemental oxygen. Also, please pray that whatever is causing the bradycardias will go away. The doctors still think it's reflux, but they're still not sure. Another problem that is developing is that my hematocrit (the concentration of red blood cells in my blood) is lower than normal. This is very common in preemies and full-term babies. However, in preemies it can become serious enough to affect my medical condition. It can prolong my reliance on supplemental oxygen, aggravate cardiac problems if the heart works too hard trying to deliver oxygen to the rest of the body, cause me to be more lethargic, eat less, or other problems. Please pray that my body will produce more red blood cells so that I will not backslide too much in my progress. Lastly, please continue to pray for that the blood vessels in my eye would grow correctly. My next eye exam is on Wednesday. Thank you! (Sorry this entry was so long, you must be sleepy now...)
8/19/02 Yea! I'm 3 lbs now!!! I also sucked my thumb today all by myself! My mommy and daddy thought I looked really cute! Everything else is about the same right now.
8/21/02 I weigh 3 lbs and one ounce today! My 2nd eye exam showed the preliminary signs of ROP (Retinopathy of Prematurity). Babies who are born prematurely still have a growing retina. The retina usually finishes growing a few weeks to a month after birth in full term babies, but in premature babies the retina is still growing. During the course of this growth, the blood vessels that bring blood to the retina can begin to develop abnormally. This abnormal growth is called ROP. Right now, my growth is considered Stage 2, Zone 2. This means that I have moderate abnormal growth (Stage 2) in the middle region (Zone 2). This disease is progressive, so it can get better or worse with each week. If the growth reaches Stage 3, this is considered severe and laser eye surgery is considered before partial or complete detachment of the retina occurs. The eye doctor will do another eye exam next Tuesday. Please pray that my blood vessels will grow correctly and that the abnormal blood vessels will decrease. Thank you...
8/22/02 I weigh 3 lbs and 2 and half ounces today! Everything else is the same...I continue to have a few bradycardias each day. But, overall, I'm doing pretty well all things considered. :) Tomorrow my mommy's friends are throwing me a baby shower! Even though I can't be there, I'm excited! Also, my mommy and daddy finished painting and setting up my room so that when I come home it will be all ready for me!
8/25/02 I haven't gained any weight in the last 3 days. Also, I've been having more episodes of bradycardia and apnea. Please pray that my body will continue to grow strong and healthy because I'm having a hard time right now. Thanks...
8/26/02 I'm gaining weight again! Tonight I weighed 3 lbs and 7 oz!!! My mommy and daddy are so proud of me! I'm having problems getting weaned off the oxygen...they had to go up to 38%. A couple of days ago I was down to 28%. Room air is about 21%, so I have a ways to go. Once I can breathe at room air oxygen and keep my oxygen saturation levels, then I can take out the nasal cannula. My mommy and daddy have never seen my face without tape on it, so that will be so neat when I can have that removed! Also, they might put me in a bassinet soon to see if I can maintain my own body temperature without the help of the isolette. I'll let you know when that happens. Another neat thing I did today was try to learn how to suck with my mommy. The lactation consultant told my mommy that most babies have the sucking reflex by 34 weeks and tomorrow I'll be 33 weeks gestation. It's still a little early so I didn't do much sucking, but I hope to learn real soon so that I can get my feedings from my mom and not the NG tube. Once I learn how to latch on to my mommy and suck well, then they might let me have one feeding a day with my mom. They don't want me to lose too many calories sucking because then I won't gain any weight. So, little by little I will try these new things. Last but not least, my eye exam is tomorrow. Please pray that my blood vessels are growing normally. Thanks!
8/27/02 I have some bad news...my eyes are getting worse. The ROP is in stage 2 & stage 3 and there is possible signs of PLUS disease. If you like to read more about ROP click on Retinopathy of Prematurity. Basically, this problem is getting more serious and may involve laser eye surgery if it gets worse. I'm a little scared, but I know that God is with me and He will take care of me. They will do another eye exam next Wednesday to see if the ROP is improving or getting worse. They need to keep my oxygen saturation at 99-100% now, so they will not be able to wean me off the oxygen for a while. This means that I will be dependent on the nasal cannula for a while longer. Please pray for the blood vessels in my eyes. Please pray that the abnormal vessels will stop growing and that my eyes would heal and get better. Thank you...
8/28/02 I have so many things to tell you today! I gained more weight...I am now 3 lbs and 8.5 ounces! Also, I tried breastfeeding with my mommy again today and I did a great job! Today was non-nutritive sucking so I didn't get any milk because my mommy pumped before we practiced today. I also had half a feeding (15ml) in a bottle for the first time tonight. The nurses may give me a few feedings with the bottle or with my mommy starting tomorrow. They will progressively do more feedings through the mouth and less through the NG tube as long as I don't have problems with coordinating sucking, swallowing and breathing and if I continue to gain weight. If I use too many calories trying to suck and lose too much weight, then they will have to do less feedings by mouth and more through the tube. Because of my ROP problems, they had to increase my oxygen levels to 42% so that my oxygen saturation stays at 99-100%. This is higher than before, but hopefully it will help my eyes. Thanks for reading about my progress today. You make me feel special!
8/29/02 Today was my first time trying to actually breastfeed with my mommy. At first I choked on the milk and my heart rate dropped (bradycardia) along with my oxygen saturation levels. After the nurse help bring my levels back to normal, my mommy and I tried again. This time I did a great job! I sucked, swallowed, and breathed like a big girl! I only got to do it once today, but as time goes on I may do it more often. I also gained weight today...I'm 3 lbs and 10 ounces! I'm getting so chubby! I actually have a double chin! : ) I still have episodes of bradycardia and apnea, but hopefully as my body matures, these will be less frequent.
8/30/02 I lost 30 grams today (that's an ounce) so I'm down to 3 lbs. and 9 oz. It's probably because I was working hard at breastfeeding with my mommy. They say preemies burn a lot of calories trying to feed by mouth. That's okay as long as I don't keep losing too much weight. I had a very bad episode of bradycardia today. My oxygen level went all the way down to 50% as well as my heart rate. It took me longer than normal to get back into normal ranges. Hopefully this won't happen again because those episodes are part of the reason why I'm having problems with my eyes. The good news is that I breastfed two times today! My mommy told me that I did a great job and that she was so proud of me. I also got to spend time being held by my daddy! One more thing...I had my first tub bath today. At first I didn't like the water so I cried, but then I got used to it and I kind of enjoyed it by the end. : )
8/31/02 Today is the last day of August...I've now been in the hospital for 49 days! I gained more weight today...I am now 3 lbs and 11.5 oz! I had a good day today. I didn't have one bradycardia all day! Praise God! This is the first day this has happened! : ) Thanks for all your prayers! Please continue to pray for my eyes...the next eye exam is this Wednesday. I'll keep you updated...