Monday, September 8, 2008

Update from 9/8/08

Hello everyone!

I hope you all are doing excellent!

I know an update on Janai is long overdue. I’m back at work for now, saving my time off for when Janai comes home, but my schedule is pretty tight now between work and the hospital and fitting time in between to get ready for her coming home and a bit of time to sleep at night for the next day. So much has happened with my little girl! Good days and bad days, as the doctors promised. The good news is that there have been more good days than bad ones!

Short version (for my busy friends): She’s doing well. She weighs 5lbs 5.4oz, and she measures 17.5in in length. She’s off the oxygen and breathing the same oxygen we all do. Now, she only uses oxygen during feeding time. She now drinks from a bottle, although she’s struggling a bit with that. Her temp is ok; temp-wise, she’s ready to be out of the incubator. Once she’s eating 8 times a day from her bottle, they’ll put her on a crib. And after a few more days, she’ll be ready to come home. The task holding her back is the eating thing. But we’re not in a hurry…whenever she’s ready. Thank God, her coming home finally seems real, and we’re so, so thankful for that!!!

Long version (if you have time to read a story J):

Janai used to be in the NICU Level 3, where the most critical babies are. At the beginning of August, they graduated her to Level 2, where the more stable babies are. This was a good thing, but we were not prepared for it, so it took us a while to adjust. In Level 2, many babies are bottle-fed and one nurse is assigned to 3 or 4 babies (rather than 2 babies like in Level 3), so the nurses are busier and their attention to each baby is bit less personalized. After the first week there, we decided to choose several experienced nurses with whom we felt comfortable as primary nurses for her care to ease our anxiety. We have learned to like Level 2 now; we get involved with Janai’s care a lot more, which is great training for when she finally comes home.

The day that Janai got moved to Level 2, she started having problems breathing. Our nurse that day was assigned to babies who were bottle-fed in addition to Janai, who was tube-fed, so there were periods of time when our nurse just could not come to her bedside right away because she was feeding another baby. And the other nurses in that area did not come to help either. It was horrible! We talked to the charge nurse about this problem, and that has not happened again since. That night, the doctor ordered X-rays, and they found out that fluid had started accumulating in her lungs; so they gave her diuretics which helped. By that weekend she started getting worse again, and she would stop breathing more often. We spent the night by her bedside because I could not imagine going home under those circumstances. The nurse kept saying all preemie babies go through this, but we kept insisting that this was not normal for her. So, finally, they ran a caffeine test through which they found out that her caffeine levels were too low. She had outgrown her daily caffeine dose! Once they added more caffeine to her body, she did much better. She hasn’t had breathing problems for about two weeks now. In fact, last week, the doctors determined her brain is mature enough to remember to breath on its own, without the help of the caffeine, so they have discontinued it. So far, so good!

About the same time that she went up to Level 2, one of her blood test showed one of her liver functions a little high. The doctor ordered an ultrasound and it turned out that she had itty bitty stones in her liver and her kidneys. Apparently, this finding was coincidental because stones don’t cause the elevated blood test result. So, she’s under supervision of a GI doctor for this problem. They gave her a medicine for her liver which is doing the trick and is resolving the problem. He thinks the first set of diuretics might’ve caused the stones in the kidneys, but that the new kind of diuretic will make them go away. And they blame the stones in the liver due to a bleeding that she might’ve had from trauma at birth. According to the GI doctor, the stones are being monitored and they will take a good while to disappear. They ran an ultrasound a week ago, and the stones are still there, but they haven’t gotten bigger nor has she gotten any more stones. So that’s a relief.

On the eating department, we’re doing so, so. The good news is that, since about 3 weeks ago, the doctor ordered to start bottle feeding her. They started slow, first one bottle a day and the other 7 feedings by tube. She struggled the first week, but by the end of the second week, she worked her way up to 6, then 7 and then 8 bottles…whatever small amount of milk that she wasn’t able to finish by mouth would be fed through the tube. The bad news is that once she got to 8 bottles, she had a setback where she would get too tired and not finish any bottle, so they put her back to 6 bottles a day. She worked her way up to 7 bottles and remained there for several days. She currently worked her way up to 8 again, but she’s not finishing the bottle every time. The doctor ordered the nurse to let her eat whatever she can eat in 30 minutes, and skip the tube altogether to observe her weight gain. She’s supposed to eat just under 2oz each bottle, and she seems to trend towards eating one full bottle, and the next time she eats only half, and then the full bottle, and then half. My guess is that they are going to put her back on 6 bottles again because she hasn’t really gained weight in 4 days. They tried adding a spoon of formula to the breast milk yesterday, in order to increase the calories of the milk and see if she gains weight, but I don’t think that approach will last long. The doctors and other parents had warned us that eating is the task that takes preemies the longest to master. The older she gets, the better she’ll eat. So, we’re giving her time. I know she’ll get there!

About a week or two ago, there was a great development regarding her oxygen. They discontinued use of her nasal cannula for oxygen, so she’s breathing room air like all of us!!! We were nervous about it, but my sweet girl pulled it off! She still gets the cannula during feeding times because feeding is a demanding task for preemies and she needs the extra oxygen, but she’s off it the rest of the time.

Another development has to do with her temperature. Her incubator used to adjust the inside air temperature based on Janai’s body temp. Since about 4 weeks now, they have changed the settings to where the incubator is set at one static temperature and Janai adjusts her body heat to the incubator. They started the air temp at 32ºC, and they plan to wean her down to 28ºC. Once she can hold steady temperatures at 28ºC in the incubator, they will graduate her to an open crib. Her temp was great and she was down to 28 degrees, but last Monday she had a sudden drop, so they bumped her incubator back up to 30. They did blood work to see if an infection had crept in, but everything came back normal. Since then, Janai has worked her way down again, and as of Friday, she’s at 28ºC again. We are just waiting for her to eat all 8 bottles and have healthy weight gain so that they can move her to a crib.

Last week, the doctors talked about Janai coming home this Wednesday, but I just had a feeling that wasn’t going to happen. It was too soon. And our guess turned out right. She has had problems eating and therefore she’s not out of the incubator yet. Once she eats the 8 bottles and gets moved to a crib, it still would take a few more days for them to monitor her temp and weight gain and to run a series of studies to determine whether she needs oxygen at home. Plus, if rooms are available, they will let us “room in” with her at the hospital for “final training”, where they give Adrian and me a hospital room and we spend the whole night with her by ourselves. So, I’m thinking my little girl might be in the hospital for at least another week, maybe two. Nevertheless, her coming home finally seems real, and we’re so, so thankful for that!!!

Oh! The doctor finally allowed us to tried breastfeeding, and we tried it for the first time Saturday, and again yesterday. At first, I was super nervous, but she and I got the hang of it. It was such a lovely and fun experience! Her muscles aren’t strong enough to take a full feeding from the breast yet, but she latched on well, and I have a feeling she’ll get better at it. In fact, yesterday, after trying the milk from “the source”, she didn’t want to take the milk out of the bottle anymore. She kept squinting her eyes when the bottle got in her mouth and she refused to swallow from it. After 3 hours, she was so hungry that she didn’t care what the milk tasted like, she almost inhaled that bottle! My poor sweetheart! Last, I finally got a chance to bathe her last Saturday. That was challenging, to say the least! She wiggles so much! I loved it, though. I cant wait to do it again! J

Okay… that is the full update.

Thank you all for checking on her! I do really appreciate all your support through this difficult time. And thank you also for keeping my little girl in your thoughts and prayers.

Have a wonderful week!

Lizet & Adrian

No comments:

Post a Comment