What a great morning visit we had! Annaleigh was due for a diaper change and the nurse let me do it! It was the first time in my life I’ve changed a diaper, and it was on a tiny 1 and a half pound little girl who is so fidgety that the doctors postponed procedures on her yesterday! And it was great! The hardest part was folding the already-tiny preemie diaper to fit the even smaller baby. And she’s swimming in it!
Brooke got to change Charlie’s diaper for the first time. Luckily for her, he hadn’t pooped, so cleanup was a bit easier. But he did poop three times yesterday, so his digestive track seems to be working just fine. Unfortunately, his central line came out yesterday so the doctors will try to put another one in tomorrow.
Lily is still on the respirator, but she looks really good. And she opened her eyes again since she wasn’t under the warming jaundice lights this morning. She grabbed her mommy’s hand and held on tight and looked at her and seemed to be perfectly happy. Her arm motions continue to be the most expressive, as you can see by the picture on the left here.
During the day, all three babies had their brain scans to check for any bleeding. Most brain bleeds show up during the first 24 hours of life, and here we are in day 5 and there are no major brain issues. Charlie and Lily showed no signs of a bleed at all and will be checked again at 21 days and before they’re discharged in a few months. Annaleigh has a small bleed but Dr. Hiatt says it’s nothing to be concerned about at all. He described it as a sub-epidemial (sp?) hemorrhage, which sounds a lot worse than it is. Basically, it’s a blood clot that will most likely liquefy and dissipate with time. She will have an ultrasound every week to check its progress but he wasn’t concerned it would be anything serious.
Dr. Hiatt also had a conversation about risks for mental retardation today. Obviously that is a big concern about any baby that has been born 15 weeks premature and it has been in the back of our minds for a long time now. He said there are three major causes of mental retardation: a difficult birth, brain bleeds, and a difficult clinical course in the ICU. Fortunately, our babies had a relatively uneventful birth (if such a thing is possible for such a sudden delivery). And today’s ultrasound showed nothing of concern as far as brain bleeds. The third factor is the tricky one. Over the course of their stay in the NICU, the more serious issues they have, the more their risks go up. But the doctor was very quick to point out that the babies are now five days old and have had nothing seriously wrong with them. So the risks are there and they are real, but we are confident that our babies are strong.
We had a really nice afternoon, too. Brooke’s friend Lauren came for a visit to the NICU and got to meet everyone. Then we snuck down to the cafeteria on the first floor of the hospital and had a nice lunch and went to the hospital ice cream social. Brooke was instructed not to leave the 4th floor for anything but trips to the NICU, but we were confident that she was healthy enough to handle it. And happily, we did not get caught! (Of course, any St. Peters employees reading this blog, please ignore this paragraph.)
And then came the breast milk conversation. Let me just say, we haven’t laughed that hard in years. If you have never done so, find yourself a pamphlet that describes how to breastfeed. In the one we have here, there’s a series of pictures that show “what not to do when breastfeeding.” The drawings are so hysterical that I’m sure Brooke must have popped a stitch from laughing. And now, hours later, my face still hurts. Brooke used the breast pump and was able to produce enough to feed the babies five meals! Not bad for a first time!
There were a few bumps today too. When we brought the breast milk down to the NICU, we learned that both Charlie and Annaleigh are no longer being given any food. Charlie had a number of “episodes” today in which he stoped breathing. Annaleigh was doing this for the first few days (and still is sometimes, though not as often). Because of this, they are talking about the possibility of putting him back on the respirator. Dr. Hiatt warned us that this was going to be a possibility so we weren’t blindsided—just disappointed. Charlie looks the best of the three because he’s so much bigger, so to see him have a rough day is discouraging.
Annaleigh isn’t being given food anymore because she wasn’t doing well digesting what they gave her. So now we can add this to the numerous little things that seem to be causing Annaleigh some trouble. First there was the heart murmur and ductus valve yesterday. Today there’s the small brain bleed and the poor digestion. Luckily, all of these seem to be “minor” issues, as long as they don’t add up to anything major. On the plus side, she continues to breathe on her own and she looks noticeably stronger than she did just yesterday. Her weight is now only two ounces lower than her birth weight, so technically she’s bigger than expected.
All three babies also had an echocardiogram on their hearts today, and we’re still waiting on the exact results. One of the nurses said she couldn’t give us the results because that has to come directly from the doctor, but she did say there was “no cause for concern.” So that’s another good thing.
In all, day 5 wasn’t bad at all, just maybe a little more stressful than the last few. Brooke will probably be discharged tomorrow, so we’ll have to find a way to leave and get into some sort of normal routine at home. It will be very hard to leave St. Peters and our babies behind. We’ve grown used to having the babies within a three-minute walk. After tomorrow, they will be at 45-minute drive away. We knew this was coming but now that it’s here we’re dreading it. Hopefully, things will go so well for them that being away won’t be a big deal at all. Keep your fingers crossed for us!