Claire had follow-up appointments at Children's Hospital in Birmingham today. She got a chest x-ray, then saw her surgeon and pulmonary doctor. I usually take a picture of her when she goes to the doctor, but didn't get any good ones today because she kept trying to crawl off the edge of the table!
Her sats reading was 100 and the pulmonary doctor said her lungs look great and that he can see improvement between today's x-ray and the one taken in February. Her left lung is still smaller than normal, but is growing well. I asked if I could leave Claire in the church nursery on Sundays and he said that would be fine this summer, but I need to keep her away from children this winter during cold/flu season. He said she would qualify for RSV/Synagis shots again this winter.
The surgeon said Claire's diaphragm repair still looks good and that she can go a year until her next x-ray unless she has any problems. We need to watch her closely for signs of re-herniation (trouble breathing, pain after eating, vomiting). I asked if she was less likely to re-herniate now that she is almost a year old and she said no, that it could happen at any time (eg. during growth spurts) and that she will need annual x-rays "indefinitely" to make sure everything is staying where it should be.
The surgeon also said Claire's latest x-ray looked like she might be developing scoliosis, but it could have been because Claire was wiggling around during the x-ray (I hope!). Scoliosis is a common side-effect of CDH, so we will need to watch her for this as she grows. I'm going to talk to her pediatrician about it when we go for her check-up next month.
Claire weighs 16 lbs 10 oz and is 27.5 inches long. She grew 1.5 inches since February, but didn't gain very much weight and dropped off her curve on the growth chart. They were hoping she would be closer to 20 lbs by the time she is a year old. She has always been small, but has always stayed around the 10th %. She is a lot more active now though (crawling, pulling up, cruising) and burning more calories. They sent a nutritionist in to talk with me. Claire is eating lots of table foods and is also still nursing. I was planning on gradually switching her to whole milk after she turns a year old. The nutritionist said I need to switch her to PediaSure instead so that she will get more calories (whole milk has less calories than breastmilk/formula, and PediaSure has more) and that I can go ahead and start giving it to her now. I gave her some vanilla PediaSure in her sippy cup this evening and she wasn't too thrilled with it. Pray that she takes a liking to it and fattens up!
I stopped by the NICU on our way out. It was freaky being back there and brought back a lot of memories. I showed Claire off to some of the nurses who had taken care of her, including the one who helped transport her from UAB when she was born and took care of her those first few days. He was glad to see her and said she looked great and that "made it all worthwhile." They have had a slew of CDH babies come in lately. They had four come in this week and one of those passed away. Another CDH baby was arriving this afternoon, and two more were about to be born at UAB.
Now that Claire is nearly a year old we are going to transfer her follow-up care to Vanderbilt Children's Hospital, which is MUCH closer to home. Both doctors I saw today gave me referrals and are going to transfer her records up there. I will miss everyone at Children's in Birmingham and it was sad to have to tell them goodbye. The doctors and nurses there are great and they know us and seem to genuinely care how Claire is doing. But I'm sure the doctors at Vandy will be great too, and I will feel better being closer to them in case we have a problem. And since we won't have to travel for follow-up appointments anymore James can go with me because he won't have to take off work.