It's been a while since I've been able to write an update. Rebecca has been off oxygen for some time now, and is doing well on "room air." She also got moved to a different part of the NICU, and into her own private room! Up until now, she had been in nursery A, which is for the babies who are not in a fully stable condition, but once she was off oxygen she was moved over to nursery B, which is for the babies who just need to get bigger. Rebecca has more issues going on than most babies in nursery B, but because she's still going to be there for a while, and she's basically stable, she got moved into one of the private rooms when it opened up. It's a really nice room with big windows, and it's quieter, so we were really grateful for the move. Her two big issues right now are her feeding/growing and her eyes. She actually just had her weekly eye exam, and it has been decided that she needs to have laser surgery tomorrow. She developed a condition called "Retinopathy of Prematurity" and she also has something called "Plus disease." Premature babies don't have their blood vessels grown all the way towards the front of their eyes, and some of the very small/early babies run into problems as those blood vessels try to grow forward after they are born. A ridge can develop and the blood vessels are not able to grow forward anymore. That's the ROP. If it's not treated, the retina can detatch, leading to blindness, but that is very rare where this laser surgery is available. The Plus disease is where the arteries in the eye begin to grow short-cuts across to the veins, instead of developing a nice capillary bed like they're supposed to. Anyway, she's having her surgery tomorrow (Thurs15th), and we pray that it goes well for her. She has to be put back onto the ventilator tomorrow until she's recovered from the surgery, and she'll be back in nursery A for a while. Rebecca's other big issue is her feeding. The doctors were concerned that she had a "stricture," or narrowing, of her intestines, and the last month has been spent doing various things to try to rule that out. But they were not able to confirm that she had one. So now the most likely explanation for some of the problems she's had with her tummy getting distended and with spitting up is that she is very sensitive. For example, whenever she's given a bigger dose of her multivitamins, she isn't able to keep it down.
It has been rather stressful, because one of the things that they've tried is giving her full-volume feedings of mom's milk, but diluted with water. The reason it was stressful to us is because she still hasn't grown much and I hated to see her on reduced calories. I told the doctors that she’s got a “stick figure”!
Finally she was put back on full-strength mom's milk a few days ago. But she still wasn't gaining weight. Preemies need extra calories to be able to grow properly--I'm not exactly sure why--and there's various different fortifications that can be added to mom's milk for that. Two different ones have been tried on her in the past, but her belly got distended after each one, which is part of the reason that there was concern about her having a stricture. I had wondered all along if her problem was more intolerance to the actual fortifiers rather than having a stricture, but because the stricture would have been a much more serious problem, the possibility of that had to be eliminated first.
I had heard that there were other fortifiers that were more gentle and easy for the babies to tolerate, and last Saturday, I began asking the staff about what those were. There was a lot of discussion back and forth, and I found out that there is one called Prolacta which is basically dried human milk. When I heard about it I said, "I want that one!" Apparently it's expensive and so is not used that often, but it's very easy for the babies to digest, and with Rebecca's history, the doctors and dietitian all agreed that it would be best for her. She's been on it for 1 1/2 days, and seems to be doing well so far. She'll be on it a while more before any more changes are tried, but if she does well, they'll add some other stuff too, which will give her some extra, badly-needed protein.
Apart from her medical issues, she's doing well in many ways. Her head has been growing at a normal rate, and even though her arms and legs are smaller than they should be, she's surprisingly strong. She sometimes scooches right up out of her swaddling, and the nurses find her in funny places inside her isolette.
Most babies of her age are in regular, open cribs, but because Rebecca is so small, she is not yet able to maintain her own body temperature and has to stay in the isolette.
She has been having "nursing lessons," and is doing well. Annie, the lead occupational therapist, says that Rebecca is the smallest baby she has ever helped learn to nurse in the 30 years she's been working with babies! Rebecca's mouth is so small, I had my doubts about how well things would go, but there are lots of people here who know how to help, and things are good.
Rebecca seems to be able to learn quickly (so far), for example she has picked up nursing fast, and everyone seems to think that she "responds appropriately" to examinations, interactions etc etc.
Although we're concerned about Rebecca having to go through the discomfort of the eye surgery tomorrow, we are grateful to know that the doctor who will be doing it has a really good record of success, and that it usually goes very well.
And after she's recovered from the surgery, her broviac line can come out next time the visiting surgeon is around. And then she'll be able to wear clothing! That will be so fun! Rebecca has been the fortunate recipient of our ward's abundant supply of preemie girl hand-me-downs, and she has also been blessed by friends and family members who have amazingly good taste in baby clothing, and I just can't wait to dress Rebecca up in all her gorgeous outfits!
Rebecca has been sleeping off her eye-exam while I've been writing this, which is part of the reason I was able to get away to the parent lounge and use the computer. Babies who are fed through the nasogastric tubes are usually fed every three hours, and breastfeeding attempts are done at those times, but Rebecca is on continuous feeds (i.e. it's constantly, slowly dripping through) due to her tendency to spit up, so it's been decided that our nursing attempts will be when she's awake and alert. So usually when I'm here, I'm sitting in her room, watching to see when she'll wake up well. I don't like to leave it for the nurse to tell me when she's well awake, because by the time the nurse notices, Rebecca is usually very upset, and that's not the best way to have a good oral feeding lesson.
We are grateful to everyone for their kind interest and help towards our family. I'll try to get some new photos to share soon. I’d better go now.
Love,
Jane Tomlinson
