January 1, 1998: One day after her birth, Lauren's tube was removed from her throat. They felt that she was doing well enough that she could breathe on her own. She is still under a mask with oxygen, but at least she does not have that awful tube.
January 2, 1998: I got out of the hospital, and I am able to see her for the first time since she was born. She gets very agitated when she is touched, and I feet so helpless sitting there watching her cry her little "meow" and there's nothing I could do. They finally let us hold her and that was so nice. She opened up her eyes and looked all around. She seemed so much more at peace after she was held. All in all, she is doing well. They are hoping to start the gavage feedings tomorrow. Basically that means that she will get fed breast milk through a tube in her nose.
I am doing okay . . . having a lot of gas pains and insomnia. Hopefully it will pass soon.
January 3, 1998: Lauren got her first feeding of breast milk via a tube down her throat into her stomach. This happened late at night, and we were not there for this. She was able to take about 5 cc which is about a tablespoon worth. She tolerated that well. We stayed with her all day and were able to hold her a couple of times. She still gets quite agitated when you touch her. She liked to be held but did fuss quite a lot today. Her oxygen levels are getting better each day. She is still under her little "tent" but we were able to lower the amount of oxygen that went in. She had an IV in her left wrist that was put in when she was born. They are not using it since she has an IV through her umbilical cord right now....called a UAL. The IV in her hand looked so painful and uncomfortable for her, and we asked to have it removed. They were able to comply and removed it. She seemed happier after that. There are so many pieces of tape stuck to her. When they pull it off, her poor skin looks so raw and sore. Also, Lauren went from a warming bed to an isolette today.
January 4, 1998: A big step today! Lauren was able to come out of the tent and now she is just breathing her oxygen at low levels through a nasal cannula. This is two little prongs that go into her nostrils. Her feedings are increasing. They are basically introducing five cc's more of breast milk into her stomach every three hours. She topped off at 25 cc's today. She seems to be tolerating the feedings well. If this continues, she will be able to have her UAL removed tomorrow. She seems more calm and more comfortable when she is touched and held. We did notice however that she is becoming a bit jaundiced. Her bilirubin levels this morning were normal, but the neonatologist is going to check them again tonight. If they have risen, she will stay under some special lights until the levels drop back to normal.
Lauren's grandparents (paternal) visited today, and it was nice for them to be able to see her. She also saw her maternal grandmother and great grandmother. Ryan came to the hospital as well. He has not seen her in person yet since he is not allowed in the NICU, but boy does he love their playroom! :) Ryan is doing very well. He does not really know what is going on at this point. I do not think he will really realize what is happening until she comes home. Even then, she is just one of the day care kids! <G> Anyway, we have shown him videos of her, and he seemed to show
interest. He calls her the bobby. While we were watching the video, we asked Ryan to give bobby his pacifier, and he put it right up to the TV screen. It was really cute. He is having so much fun staying with Aunt Jan and Grammie and Papa that he really does not care that we are gone so much. We try to be home in the evenings by dinner so that we can have dinner together and spend time with him before he goes to bed.
January 5, 1998: As it turns out, Lauren is a bit jaundiced ~ not unusual for a preemie or a newborn for that matter. She was under the bilirubin lights when we came in this morning. It was so cute because she had little blinds on her eyes. She was getting her first suntan! <G> Her color looked much better this morning as well. She was off the lights by mid afternoon with normal bili readings.
Lauren is up to taking 1 ounce of breast milk at feedings now. She is still taking her feedings though the NG tube. They do not want to have her start breastfeeding until her breathing slows down a bit. It could cause her to aspirate or inhale her milk into the lungs. She is still tolerating the feedings very well. They hope to get her up to 1 1/3 ounces soon. Since she is doing so well in her feedings, they removed the UAL today. She now is IV free!
Lauren is very stable at this point. The only reason that she is still in the NICU is because the step-down care unit is closed due to low census in the hospital. She is not ready to come home yet by any means. Her breathing is still at 80-90 breaths per minute. Ideally a newborn will breath at a rate of 40 breaths per minute. A baby in distress will breath about 60 breaths per minute. So as you can see, she is still has a way to go. The neonatologist told us that this is because of her premature lungs and that time will be what it takes to slow down her breathing. It could take a couple days or a couple weeks. Who knows? Anyway, she still has
not even learned to suck yet so that will take time as well. They tried to let her breath room air the other day but she was not quite ready for that. She still needs a little bit of oxygen to keep her going and keep her saturation levels up where they need to be. For this reason, Brad and I are trying to get her transferred back to Cayuga Medical Center here in Ithaca where she was born. We feel that they could do the same things for her that they are doing in Arnot right now. It would be a shorter drive for us
and would also allow me to breastfeed her and get that going because I would be closer and with her more often. It would be really hard to establish that with her being so far away, and we only spend about 5 hours a day there. We should have some more answers about that tomorrow.
She was more alert today when we held her and fed her. She had her eyes open almost all the time. Other than that, she sleeps A LOT and hardly makes a peep.
January 7, 1998: Today when we got to the hospital, we had a surprise!! Lauren was out of the isolette and into a little open nursery crib. She had also been off her oxygen since 5 am and her levels were great!! Not only that, they took the tube out of her nose. They gave her a bottle first thing this morning and she drank 30 cc from it which is great. She had another feeding as well before we got there. She is completely free of wires and etc . . . all except the heart monitor which they like to keep on until she leaves. Her respirations have slowed to a good level and she seems to be doing so well. Donna, the nurse practitioner, says that tomorrow morning they will decide whether she is ready to come right home or whether she will be transferred to Ithaca for a few days of follow-up care.
They allowed us to take her into an empty nursery "to act like she was our own" as they put it. I was able to put her to breast for the first time. She did not do very well the first time. We tried for about 45 minutes. She would put the nipple in her mouth and take one suck and make a weird face and that was it. I tried expressing into her mouth a little but she just did not take. We gave her a bottle and she did not take much of that either. A couple hours later, I put her to breast again and she did well. Her suck is so small and slight that it did not feel like she was really sucking,
but I could hear her gulp every once in awhile so she was getting something. Not only that but we gave her a bottle after the feeding and she would only take 20 cc. We ended up gavage feeding the rest to her (they put the tube back in her nose) because they insisted they needed to know that she was getting 50 cc of breast milk. My milk comes out so freely that I think she did get a good amount. We talked briefly to the Lactation Consultant on staff at the hospital, and she told me that it will take a lot of practice but it can be done. Lauren definitely did better the second time than the first. She was more apt to open her mouth up the second time.
Other than that, she is doing great. Her weight was down to 4 pounds and 13 ounces yesterday, but today she increased 2 ounces so that says something for her. She is so tiny you feel like you are going to break her when you pick her up. We will be glad when this is all over. Poor Ryan just gets tossed wherever and we miss him so much with all this running around. We will all be happy to get back to routine again.
January 8, 1998: We got news this morning that Lauren was ready to be transferred to Ithaca! We were pleased to hear this as the drive was getting to be a little much for everyone. We are all so out of routine and your body just gets drained so fast. Anyway, she is doing very well. Her bilirubin is still a bit high but it will be rechecked at Cayuga Medical Center tomorrow morning. She is breathing normally, has no tubes or IV's and is off all medications. The only thing that she still has is her feeding tube. Breastfeeding is still frustrating as she is not really sucking or latching on well. It does improve a little each time though. We are gavaging about 50 cc after each feeding (every 3 hours) which I think is a lot but that is the way that they wanted it at the NICU.
January 9, 1998: I spent the night at the hospital last night with Lauren in a special little room that the hospital maintains for guests on another floor. It was nice to be near her. The nurses are all eager to help me with her feedings and all share different advice and techniques for me to try. It is such a change from being in the NICU. I spend my day holding her and feeding her basically. She is on an every 3 hour feeding now. I put her to the breast 5-10 minutes on each side and then we use a soft cup to feed her after that. She is getting between 30-40 cc every 3-4 hours this way. Her bilirubin shot up today so she was put under the lights this afternoon. We are hoping that goes down so that we can take her home. The NG tube that was in her nose is gone since she is eating so well with the cup. She is improving with the breastfeeding as well so things are looking up.
As far as her overall condition, she is doing very well and should come home in the next couple of days. My mom and dad held her for the first time yesterday and they enjoyed that. Brother Ryan got to meet Lauren for the first time as well. He did not know quite what to think about her. He really could have cared less. He was too busy running around!
January 10, 1998: Lauren's bilirubin came down this morning from 19.4 to 13. That was good news to hear. Her pediatrician said that we will check her levels again at 4 PM tonight and if they stay the same or continue to decrease, he will remove the lights. She really looks less yellow today and you can finally see some white in her little eyes.
Breastfeeding attempts are still continuing and she is doing about the same. She will get her mouth over the nipple, suck once and that is all. Today she sucked a few more times, but still has a ways to go. The pediatrician feels that it is because of her rough start in life and her age. He feels that with practice she will be breastfeeding well in no time. For now we are continuing her breast milk supplements every 3-4 hours with a bottle. Yes, a bottle. I was against it at first but it seems to be helping her to learn to suck and is much easier than all the tube feedings. We will continue to use both, stressing the breast more and more each time.
January 11, 1998: Lauren came home today!! Her jaundice levels were down and since she is doing so well, the pediatrician said that she could come home as long as I felt comfortable caring for her. It is nice to have her home but bittersweet leaving the hospital. After spending 11 days here, I feel like part of the program so to speak. I am going to miss everyone a lot. :(
January 12, 1998: After a sleepless night :( we are doing well. Lauren was up all night long it seemed. She wants to be held onto all the time. She does like riding in the car though and will sleep while in the car or in her seat while shopping and etc. We did some errands today and she slept the whole three hours that she was out. Once we get home though, it is
scream city again. She sounds like a little mouse. It is hard to spend time with Ryan when she needs to be held all the time. He is adjusting quite well actually. He does not seem to mind her at all. His aunt is taking him during the day all this week so that gives me a chance to take care of some things that I need to do as well. He enjoys it too.
We went to the pediatrician today and got some bad news. Lauren has a cleft palate that no one seemed to detect. It is about the size of a pencil eraser on the back/top of her mouth. Basically what it is, is a hole that developed in utero. It was supposed to close but did not. She will need to see a plastic surgeon and have it operated on before her first birthday but not until she is at least 10 pounds. The pediatrician explained to me that it will basically be sewn shut. He also told me that this may explain why she is having some feeding problems and also why she spits up through her nose. Poor girl. If it is not one thing it is another.
Oh . . . another thing to mention, her jaundice is better, but we found out the reason that she had it so bad was because I am a B+ blood type and she is an O- blood type. We had an incompatibility which caused the jaundice. It is clearing up.
Lauren weighs 4 pounds and 15 ounces now. She will be seen again in a week to check her weight. She is not sucking at the breast well, nor is she sucking from a bottle well either. It takes me about 45 minutes to get the required 30 cc down her which is about an ounce. The lactation consultant talked to me again today and told me to hang in there because preemies tend to have these feeding problems and that it will get better . . .
January 16, 1998: Lauren is doing very well. She is eating much better now that we are using a large NUK nipple with a fast flow hole. She sleeps all the time except at night, and when she is alert, she is very alert. Every day she seems to be getting cuter and cuter. I have decided to stop pumping due to the time that it takes, so when she uses up my frozen supply (2-3 months), she will get formula. I feel really guilty about this, but right now I need to concentrate on her other needs and the needs of Ryan. Other than that, nothing new to report. She is doing well!! :)
January 19, 1998: We had a visit with the pediatrician today and Lauren looks well. However, she is not gaining weight as she should. She was only up 1 ounce from last week. Because of this, her pediatrician put her on a special oil called MCT. I need to add it to her breast milk each feeding. It will up the caloric value in the milk and cause her to gain weight faster. She is spitting up a lot through her nose the past couple of days so we are hoping that by adding the oil, she will at least get some extra calories in the milk that she is keeping down. She weighs exactly 5 pounds now.
January 28, 1998: Lauren did go up to her birth weight on Friday so we were happy about that. On Friday she weighed 5 pounds and 5 ounces. She got a clean bill of health from her pediatrician. Since she was having trouble with the oil drops and spitting up, I have stopped them temporarily. She has another pediatrician visit on Friday and if she does not seem to be gaining, I will start the drops again. We have an appointment on Monday with the Oral Plastic Surgeon so we will know more as far as her cleft goes. Also, I have been in contact with another Lactation Consultant and have been to a LLL meeting to get the breastfeeding started. I continue to pump and feed her the breast milk through a bottle. We are still hoping to get her to breast soon.
January 31: HAPPY 1 MONTH BIRTHDAY, LAUREN! :-)