Updates on my health
September
9/2/02 Today was such a super day! I now weigh 3 lbs and 15 oz! I'm only one ounce away from 4 lbs!!! I also graduated from the isolette to the bassinet! This means that I've been doing a good job keeping my body temperature without the help of a heater! I'm a big girl now! : ) I'm breastfeeding two times a day and they also give me bottles about two times a day. The rest of the time I'm still getting fed through the tube. Hopefully, if I keep gaining weight and doing a good job with my oral feedings, they may take out the NG tube, but it's still a little early. Thanks for checking up on me!
9/4/02 I had a really tough day. The eye doctor checked my eyes and found that my eyes had gotten much, much worse. Both eyes were stage 3 with definite Plus disease and something called Rush disease. The right eye was even worse than the left eye. The eye doctor decided that laser eye surgery was inevitable and that we should do it as soon as possible. They put me back on the ventilator, gave me another IV, morphine and a paralyzing drug so that I wouldn't move during the procedure. The doctor spent about 3 1/2 hours trying to laser (burn) all the parts that didn't have any blood vessel growth yet. Basically I will not have much peripheral vision because they had to laser the area where I would have had peripheral vision in order to keep the abnormal vessel growth from getting worse and completely detaching my retina. The eye doctor told my mommy and daddy that the ROP was very serious and that his main goal was to basically prevent me from becoming blind. Even with the laser surgery the best case scenario will be about 20/80 vision even with glasses. The worst case scenario would be severe scarring that could still lead to retinal detachment/blindness. They are going to try to extubate (take me off the ventilator) tonight. Hopefully I'll be able to breathe on my own again with only the nasal cannula. Some babies take longer to get off the ventilator after a procedure because their lungs are still weak. Please, please pray for me....I need a miracle! I hope that I can see well and that I won't need to have any more surgery...The doctors will not really know how my vision will end up. The consequences of ROP will be something that I'm going to have to deal with for the rest of my life. Thank you for your prayers...anything is possible with God!
9/5/02 Today was another tough day. They couldn't take me off the ventilator last night because I wasn't ready yet. They waited all day for me to show signs that I was more awake and breathing against the ventilator. Finally, today at 9pm they took me off the ventilator. I had a really hard time for several hours because my vocal chords were swollen shout and causing me to wheeze really hard. I also kept having apnea and bradycardia. They had me at 100% oxygen on the nasal cannula, but they will try to wean me down throughout the night. By the time my mommy and daddy left the hospital (around 1am) my breathing was more stable. I really, really, really hope that I don't need to go back on the ventilator it's no fun. Hopefully tomorrow will be a better day and I will begin to get back to my normal routine of eating, sleeping, and getting held by my mommy and daddy. There is no news about my eyes...they will check it next week some time. My eyes are swollen, but that should lessen over the next few days.
9/6/02 The good news is I'm now 4 lbs and 1 oz, but because of all the IV solution I was getting before, during and after my surgery some of this may be water weight. I am breathing successfully with the nasal cannula, but my vocal chords are very swollen. I wheeze really loudly with every breath I take. They hope that the swelling will go down eventually so that my breathing doesn't sound so labored. I'm back to eating most of my feedings through the NG tube, but I also tried to breastfeed today with my mom. My throat is still sore though because of the ventilator tube so it may take me a little while to get back to oral feedings. Please pray for me because I don't like the eye drops that the nurses keep putting in my eyes. The drops are medication to keep the eyes from becoming too inflamed and to prevent infection, but it really stings my eyes and I cry a lot when they try to put them in. My cry sounds really weak right now because of my swollen vocal chords, but I've been crying more than I ever have because I don't feel so good these days. I'm trying to be tough, but sometimes it gets hard for me. Thanks for your prayers...
9/7/02 I lost a little weight (about 20 grams), but that's okay... I'm still 4lbs! :) Today was another tough day. The wheezing got worse today, so the doctors gave me all sorts of medication to try to reduce the swelling of my vocal chords. They are worried that if I don't respond to the medication then they may have to put me back on the ventilator or the CPAP. Neither of those would be good for me, because I need to be able to breathe on my own. I started to improve a little by 9pm, but hopefully by tomorrow I will not be wheezing any more.
9/9/02 I'm still having a rough time. My wheezing has not gotten any better even with all the medications so tomorrow they may have an ENT (Ear,Nose Throat) doctor look down my throat with a scope thing. They want to take a look at my vocal chords and see if there is something wrong. Today I was working very hard to breathe because of the wheezing and I kept having desats (lower oxygen levels). I am also still having problems with apnea (pauses in breathing) which lead to bradycardias (heart rate drops). They had to raise up my oxygen levels in order to keep my oxygen saturation at 99-100%. As a result of all of these problems, we had to hold off on the breastfeeding. I still have a ways to go before I can go home. Please pray that the stridor (wheezing) will go away by tomorrow. Also please pray that I do not get an infection because they had me on steroids the last few days to help the swollen vocal chords. Steroids suppress the immune system so I am more prone to infection. They may have to give me more steroids to help with the wheezing. Also, my next eye exam is this Wednesday. Hopefully the abnormal blood vessels are disappearing and my eyes will complete recover with normal vision.
9/10/02 Praise God! My stridor (wheezing) has subsided a lot today! You can hardly hear it anymore! The ENT doctor took a look down my throat and he said my vocal chords were moving normally and that I had mild edema (swelling). This is good news because this can be healed over time. Also, this morning I had a few episodes of bradycardia and apnea again so the doctors ordered a chest x-ray and they drew more blood so they could check my blood gas and CBC (complete blood count). They wanted to rule out more serious problems such as infection or more serious lung problems. The good news is that I do not have an infection and that my chest x-ray was normal. The only bad news is that my hematocrit (has to do with the red blood cells) was low and my carbon dioxide was high. They will not give me another blood transfusion at this point because they want my bone marrow to produce its own red blood cells. The carbon dioxide was high because my breathing has been very labored for the last several days. Hopefully, as I will stabilize over the next few days and these two things will go back to normal. Tomorrow is my eye exam...we'll let you know tomorrow night how that goes. Thank you for your prayers. May God bless you as you pray...
9/11/02 My eye exam today was not very conclusive. My left eye still has significant bleeding from the surgery so the doctor could not get a clear look to see if the abnormal vessels were regressing. My right eye looks about the same (stage 3). We are praying that all the abnormal vessels will have regressed by the next eye exam (Tues). Although the prognosis on my eyes is pretty bad right now, we are praying for a miracle so that I can have perfect vision. We serve a God of miracles! I gained 20 grams yesterday so I'm back to 4 lbs and 1 oz. Also, today I started nursing again. I did it twice with my mommy, and she says that I did a super job. Even the nurses are impressed with me! The doctors are hoping that if all goes well, I may be able to go home in 3 weeks or so. There is still a lot that needs to be done before then, so please pray that I would continue to grow healthy and strong so that I can go home with my mommy and daddy. They are pretty sure that I will still need monitors at home (heart rate/respiratory rate/oxygen saturation levels) and I will need supplemental oxygen at home. This means that I will need to wear the nasal cannula even after I leave the hospital. My mommy is hoping that I will not need to have the NG tube when I go home because that means she is going to have to put a skinny feeding tube down my nose into my stomach. I don't like it and she doesn't want to do it... so please pray that I will be able to get all my nutrients either through the bottle or through nursing. Even with nursing, I'm going to have to feed from a bottle for up to six months after I leave the hospital because I'm a preemie with BPD (bronchopulmonary dysplasia= lung problems). Preemies that were as young as me and weighed as little as I did need extra nutrients & calories in addition to breast milk. So I need to be good at eating by bottle and nursing if I want to go home without the NG tube. Thanks for reading...
9/12/02 Today was a great day! I am doing such a super job with nursing and bottle feeding that they are going to let me try to do all my feedings with orally for 24 hours. If I continue to do well and gain weight, then they can take out the NG tube! They are no longer limiting my feedings to 30ml/every 2 hours. I can eat as much as I want whenever I want! So when my mommy is there I can nurse whenever I give my mommy the signal that I'm hungry (usually crying : )...and when my mommy is not there, the nurse will give me a bottle filled with breastmilk and special fortifiers along with vitamins and iron. This is a BIG step, and my parents are so proud of me they keep telling me that all day long! : ) Today I lost 30 grams, but hopefully tomorrow I'll gain weight again. Overall, this has been a good day. Thank you for all your prayers...
9/14/02 I am doing better and better each day! Today the nurse took out my NG (feeding) tube. So now all I have in my nose is the nasal cannula. I am doing a great job with my bottle feedings. I am eating very well and gaining weight. After two days I gained 120 grams. I am now 4 lbs and 5 oz! I weight twice as much as I did when I was born!
9/15/02 Today I weighed 4 lbs and 7 oz! All I did today was eat, sleep, and leave little presents in my diapers for the nurses and my mommy and daddy...I like boring days (so do my mommy and daddy). : )
9/16/02 Great news! The doctor said that I may be able to go home next Friday! I'm doing a super job with my feedings! The nurses say that I'm the best eater in the whole NICU! : ) I'm also breathing more and more on my own. If it weren't for my eyes, I probably wouldn't even need supplemental oxygen. The oxygen is considered low flow, so it's minimal, but it's enough to keep my saturation at 99-100%. I will be 36 weeks (gestational age) tomorrow! Oooh, I almost forgot...I got 4 shots today (2 months old immunization shots). My mommy thinks that I'm tougher than she is. I only cried a little. Lastly, tomorrow is my eye exam...I'll let you know some more good news tomorrow! Please keep praying for a miracle!
9/17/02 Today my mommy is going to write because it's hard for me to describe my condition as clearly as she can...
Two eye doctors checked Faith's eyes yesterday. One in the morning and one in the evening. Faith was very pooped after these exams because they are very, very uncomfortable. First, they dilate her pupils. Then, they clamp her eyes open with a special speculum. The eye doctor has this contraption on his head that shines a beam of light into her eyes and magnifies his own vision so he can see into the back of the eye where the retina is. He then uses a spoon-like instrument to move her eyeball around to see what is going on in her eye. A nurse holds Faith down so that she will not squirm during the procedure. It's very difficult to watch and even more difficult to listen to because this is one of the few times Faith screams and cries. (She just got her 4 immunization shots and she just cried a little, so we know she is one tough cookie). The eye doctor in the evening is the one who actually saw her a week prior to the surgery and he is also the one who performed the surgery. He told us that her eyes have definitely improved, but that she is still very much in the danger zone for retinal detachment. He also told us that she would have definitely had retinal detachment if they had even waited another week to do the laser surgery. He says he has never seen ROP progress so quickly in a baby and that he is very glad that they did the procedure that day. He told us that even from the time he checked her eyes in the morning until a few hours later when he did the laser, her left eye had gotten significantly worse. The doctor had so thoroughly covered her eye with the laser that he really doesn't think he could possibly find more area to laser. There are still very many high risk factors that exist for retinal detachment so he wants to check her eyes weekly for the next couple of months. Because the vessels had grown so erratically and were so twisted and inflamed a large ridge of scar tissue had formed between the part of the retina that had blood vessels and the part that the blood vessels hadn't grown to yet. The hope is that after basically lasering every part of the retina that didn't have vessel growth yet, Faith would have a lesser chance of retinal detachment. The doctor said that the PLUS disease has disappeared. That is a very good sign. However, he would like to see the ridge of scar tissue disappear in both eyes. He told us that even one dot (the size of a period at the end of this sentence) of the scar tissue could cause retinal detachment, so we can't rest easy until this scar tissue disappears completely. There are several other risk factors, but I will stop going into so much detail because it can be very overwhelming. He told us if Faith's retinas begin to detach, then they would have to do a vitrectomy, which is a very serious, invasive surgical procedure that may only leave her (if successful) with the ability to see an object and pick it up. We are continuing to pray for a miracle. We know that many people are praying for Faith and we continue to ask that each of you would pray for God's miraculous healing on her eyes. Even the doctor says that she needs a miracle because her eyes could go either way (good central vision to complete blindness). There are several nurses, residents, and even the eye doctor is praying for Faith because they all want to see her eyes improve. We want to see God glorified through this and we know that it is very possible. Please continue to pray for Faith. Even after this retina problem resolves, she is at high risk for cataracts, crossed eyes, lazy eye, and later on in life (teen years) glaucoma and late-onset retinal detachment so she will be closely monitored for the rest of her life. Sorry for the very long entry today, but I know many people wanted to know how her eye exam went and it is very hard to simply describe each exam as "good" or "not good". The eye doctor is going to check her eyes again this Friday, so we will have a better idea of whether or not Faith can go home next week.
Finally, some great news! Faith is gaining weight very, very well! She weighed 4 lbs and 11oz today! To give you an idea of how well she is doing...the doctors would be happy if a babies gained 15-30 grams a day, but Faith gains from 30-80 grams everyday. She is eating very, very well and her lungs look better each day. She is only on supplemental oxygen right now because of her eye problems. They still need to keep her oxygen saturation levels at 99-100% in order to prevent any possibility of further abnormal vessel growth in her eyes, but in terms of her lungs she doesn't seem to need the supplemental oxygen. Her doctors are very happy about her progress. They tell us she has done very, very well for a preemie born at 26 weeks gestation. She did not have many of the more serious problems that preemies can have (i.e. bleeding in the brain, heart defects, intestinal problems, etc.) We are TRULY BLESSED and THANKFUL for this. The only very serious problem she has is her eyes and we continue to entrust her vision to God. All in all, there is much to be thankful for and we praise God for His continue faithfulness to our family.
God bless all of you.
9/18/02 Today I gained 50 grams! I now weight 4 lbs. and 12.5 oz. At this rate, I'll be at least 5 lbs by the time I leave the hospital. The nurses heard a heart murmur when they were listening to me today, but the doctors do not seem too worried. In July they did an exam and they noticed there was a small hole (2mm) between my left and right ventricle in my heart. The doctors were not worried back then because those holes usually close up as they baby gets older. So sometime before next week, they will do another exam to see if that hole has closed. If it hasn't already, it should close up on its own eventually. Also, the heart murmur was not frequent and it could also simply be the result of the BPD (lung disease) and it should go away. I'm continuing to do a great job with my feedings. I eat a little more than 2 oz every 3-4 hours. When I go home my parents will put extra vitamin and iron drops into my feedings every day. Also, I will need a puff of a bronchodilator (it opens up the airways) every 12 hours. Lastly, my parents have to put two different drops in my eye a few times a day. One is a pupil dilator and the other one is an antibiotic. This is very minimal for a preemie, so my parents are very happy about that. Most preemies born my age, leave with a whole load of medications, so I consider myself very blessed. My eye doctor is going to check my eyes on Friday...let's continue to pray that my eyes would be completely healed. I love you all...thanks for loving me through your prayers.
9/19/02 Today I gained 60 grams! I now weight 4 lbs. and 14 1/2 oz. My mommy and daddy think I'm getting real chunky and they love it! No big news today...I love these nice, boring days.
9/20/02 Lots of good news! I AM NOW 5 LBS AND 2OZ!!!! I'm getting rolls all over my body! I love it! My eye exam today showed that my eyes are getting better. The ridge of scar tissue is still there, but hopefully it will disappear without pulling on my retinas. The eye doctor is going to look at my eyes again on Tuesday. I also had an echocardiogram done today to check on the little hole between my two ventricles. I don't know the results on that yet. Some more good news...I should be able to go home next Saturday (9/28)! I will definitely need to go home with oxygen and monitors, so my parents are going to get trained on how to use these things next week. Lots of stuff to get ready before I go home, but I can't wait!
9/22/02 I hit a few bumps in the road....I've been having bradycardias with my bottle feedings. Sometimes I choke while I'm sucking on the bottle and this causes my heart rate to drop. Sometimes my heart rate will pop right up again, but other times it takes more time to get my heart rate up again. If this continues to occur, then they may push my discharge date further until this problem resolves. One of the possible explanations for this is that I'm getting confused between nursing with my mommy and sucking at the bottle. At first I didn't have problems doing both, but I'm having a harder time with the bottle now because the sucking mechanism is different. Please pray for me...I have to be able to do both for a while because I need extra calories/nutrition from a special formula and extra vitamins and iron mixed with the breastmilk. Babies with BPD need this extra supplement along with breastmilk, so until I get stronger and healthier I need to be able to do both. I really want to go home on Saturday, so hopefully this problem will resolve quickly. The good news is that I'm still gaining weight! I'm 5 lbs and 4 oz today. : )
9/23/02 Today was a good day. I gained weight again...I now weigh 5 lbs and 6 oz! I didn't have any bradycardias with my feeding. Praise God! Tomorrow is my next eye exam...I'll let you know how that goes tomorrow night. 5 more days and I get to go home (God willing....)
9/24/02 My eye exam today showed that my left eye is improving. My right eye is still worrisome because there is more bleeding in this eye as well as dilated blood vessels that haven't gone away yet. Both eyes are still at high risk for retinal detachment, however, the right eye is even more of a problem because the problem area is located right in the visual area. The eye doctor tried to do as much of the laser on the parts of the retina in the periphery so that it wouldn't affect the visual area as much. Unfortunately, right now the problem hasn't gone away completely so we have to keep praying. I like my eye doctor. He's really nice. He's even praying for a miracle because right now all we can do is wait and watch my eyes heal. I'm going to go home on Saturday (God willing) so now I have to go to his office to get my eyes checked weekly. My next exam is Tuesday. Hopefully by then there will be great improvement in both eyes. I'm still gaining weight...I'm 5 lbs and 7 oz today! Also, I want to thank all the people at Juliette Low School and EKPC for giving me such nice gifts! There were two showers for me today. I am one blessed child! Thank you for all your love.
9/25/02 The eye doctor that did the laser surgery wants his colleague (another pediatric ophthamologist) to look at my eyes again. He will be looking at my eyes around lunch time tomorrow. It seems that they want to make sure that they will not have to do more laser surgery before I leave the hospital. This is serious enough to warrant another visit from another doctor for a second opinion. The doctors always have to collaborate before doing surgery. The last time the doctors took a "second look" was before Faith's laser surgery a few weeks ago. Please continue to pray fervently for my eyes. I really want to go home and be with mommy and daddy and I hope that I will not need anymore surgery. Thank you for praying. I'm counting the days before discharge on my little fingers (3more days, God willing).
9/26/02 Praise GOD! I get to go home in two days!!!! The eye doctor took a look at my eyes again and he doesn't think there is any more places that they could possibly laser at this point. Both eyes are still at high risk for retinal detachment, but the right eye is worse. At this point there is really nothing they can do except wait and see how my eyes heal. The right eye still has some activity going on in there which is why there are still dilated vessels in that eye. God willing, those will regress very soon. The only way they will do more surgery is if my retina begins to detach. He wants to check my eye on a weekly basis for the next couple of months to see if the retina begins to detach. But, hopefully my eyes will heal quickly and they will not need to check my eyes so often. I forgot to mention a few days ago that my echocardiogram showed that the little hole between my ventricles has closed up! Praise God! I am soooooooooooooooooooo happy that I get to go home! My mommy and daddy can hardly believe it's true. The big day is Saturday. I can't wait!
9/28/02 I'm going to go home in a few hours! I can hardly believe it's true!!! I'm going to go home with oxygen, cardiorespiratory monitors, and a pulse oximeter (this measures the oxygen in my blood). My room is going to be hi tech! My mommy and daddy will put new pictures on the website as soon as they have a chance. I'm so happy I think I'm going to burst! I'm also sad because I'm leaving some nice friends behind at the hospital. If you have a chance, could you also pray for my friends? My friend Zandra has been in the hospital longer than me. She already had 2 surgeries because of problems with her esophagus and trachea (windpipe). Her mom and dad's name is Tom and Tiffany. My other friend Trevor was born at 28 weeks (gestational age), and he's has Grade 3 & 4 hemorrhaging in the brain. He may have cerebral palsy, but it's still too early to tell. His mom's name is Linda. Also, could you pray for Sarah? She was born at 25 weeks (gestational age) 3 days after I was born. She still has about 3 more weeks in the hospital if all goes well. Her parent's name are Jim and Kim. Lastly, my friend Hannah was born at 27 weeks (gestational age) and she left last week and had to come back again this past week because of bradycardias. She has trouble with her oral feedings, so it's very stressful for her mommy. Her mommy's name is Leanne. I'm going to miss all my new friends from the NICU, but hopefully we'll all be able to see each other at a NICU reunion someday...
I want to thank God for watching over me these past 11 weeks. I was born at 26 weeks gestational age and now I'm 37 1/2 weeks (gestational age). I was born at 14 inches and 2 lbs and 2 oz and now I'm 18 inches and 5 lbs and 11 oz! I'm doing remarkably well. I do have BPD (lung disease), so I will not be able to go out to public places for several months (except for the doctor's office). I am more susceptible to colds/infections because my lungs are weaker. Also, I'm not allowed to have any children visitors or visitors who are sick (even with the common cold) because babies with BPD have a harder time handling respiratory illnesses and at times could end up back in the hospital if it affects their ability to breathe well. I will be getting a special shot (synagis) for the flu every month until March or April. This shot is especially for babies born under a certain birth weight and/or with respiratory problems. Also, I have two different ages. One is my actual age (based on my July birthday) and a "corrected age" which begins at my due date (October 15th). Premature babies follow the "corrected age" when it comes to developmental milestones so technically right now I shouldn't be doing much so I'm already ahead of schedule. : ) All my immunizations follow my actual age. A little confusing, huh? I will continue to update you on my progress (especially concerning my eyes), but it may not be everyday anymore because me and my parents will be busy bonding. : ) I thank God for all of you who have been praying for me over the last few months. I am one blessed child and I can't wait to meet all of you someday. May God bless you!