Rebecca has been 
growing well and is now just under 
5lbs. !!!!! Yes, you read that right!!! Lol. She’s 2220 grams as of last night…I’m excited to see what she’s up to tonight. When we pick her up now, it finally feels like there’s actually a baby in the blanket. I used to feel like she was practically going to float up into the air when I’d pick her up.
The docs are trying out different feeding routines/supplements and so forth to try to get her more ready to come home. They’ve been letting her take as much as she wants out of the bottle, but she doesn’t take as much as she needs (she needs an unusually high volume of food for her size), so she’s still on the NG tube for part of her feeds.
For a while there I’d thought we were almost ready to head home, and then a problem came up with her feeds, and we were set back again. That was hard. But things are looking hopeful again.
Thank you to all for your help and for your prayers. We really appreciate hearing those who tell us that we are in their prayers. I truly believe that it has made a difference for Rebecca. I am so grateful that we can care for each other and petition the Lord for each other. It must please him that we care about each other so much. I know that Rick, Mike and I are grateful.
Love, Jane
Rebecca’s growth has leveled off a bit, and now the doctors are concerned that Rebecca still has an undiagnosed problem. They are consulting with experts such as “metabolic geneticists” to look at rare genetic problems among other things.
After being so excited that she was growing normally, we’re finding this news a little hard. But we’re hopeful that the news will get better (again) soon. In the meantime, we’re enjoying her very much. Besides being very small, she’s not too different from a regular full-term baby. The doctors say that she seems a little behind developmentally (apparently she should be looking at things more at her age), but overall, she’s doing very well.
With her broviac line out, she’s a lot easier to pick up etc, and we both spend a lot of time holding her and feeding her etc. Rick is the bottle expert (preemies need a different approach to bottle feeding than full-sized babies).
Michael is with his dad right now, which helps make things a little easier for us.
Thank you all for your love and prayers. We appreciate all that has been done for us very much.
Love, Jane
P.S. I forgot to mention that Rebecca hit 1500 grams a couple of days ago, which is 3 lb 5 oz. She had been hovering around 1300 for about 8 weeks, and then after she was given the antibiotics for her tummy and was also given a ton more calories/protein, she began growing better, and put on 100 grams in one week. The next week she put on about 55 grams, but that was also the week that she had her broviac taken out, and that actually has a bit of weight to it, so she put on more than it seemed. But then this week she’s leveled out a bit again, and hasn’t grown much. Rebecca is definitely a “woman of mystery,” but with everything she’s been through, she amazes everyone with her resilience.
Rebecca has recovered well from her eye surgery, and was off the ventilator in just one day, much to our relief. Her follow-up eye exam was yesterday, and apparently her eyes look the way they’re supposed to. She’ll have another follow-up in a week or two, and hopefully she’ll be doing just great.
The really great news is that it looks it may have finally been figured out why she hasn’t been growing properly and what to do about it. A pediatric gastroenterologist from Primary Children’s was consulted and he said that he had seen a few children over the years who had an overgrowth of the good bacteria in their intestines. The bacteria can form such a mass that the body can’t cope with the food coming through, and the body just dumps the food without absorbing it. Rebecca’s stools haven’t looked normal, but the doctors had thought that it was just from her jaundice problem.
So a few days ago, Rebecca was started on a different kind of antibiotic, and we waited and watched to see if her stools would change. And they did! And she’s been putting on weight! It’s a bit too soon to tell, but we’re hoping that she’s on the road to growing normally. And for the past two days, for the first time in her young life, she has actually weighed more than three pounds! She had been pretty fussy the previous couple of weeks, and we’re wondering if she just didn’t feel good from not having the nutrition she needed.
She was 40 weeks on Thursday, and three months old on Friday. This has been a good way to celebrate her due date! She also has seemed a lot more content the past few days.
Anyway…thanks to everyone for their love and help and prayers. It has truly made a difference for us.
Love, Jane Tomlinson
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
P.S. Remember to put the 'flame' in your life!
This Wednesday, June 2, 2010 at 7:00 pm in the YW room. Dinner will be served. Guest speaker: Michelle Davis.
Karen Pedersen provided a wonderful scrapbooking class Thursday night! Among many things, she taught us all about the various shades of yellow. Apparently in the scrapbooking world, yellow is really called "creme brulee." We were very enlightened. But we were almost as appreciative to Anne Ieremia-she didn't sign up for the layout but came anyway, just to help! That really worked out well for the rest of us there. She stamped and tied and cut her way into being voted the "Most Valuable Scrapbooker" of the evening. It was a great night and a great way to witness first hand some more of the talents of our wonderful Relief Society president. Karen was very patient with those of us (who shall remain nameless) who may have been a little lacking the art of scrapbooking. :)
