One thing that can happen to CDH babies, but hasn’t been checked on with Liliana, is scoliosis. Ever since she’s been home, I’ve been concerned about her spine and whether it was straight or not. Last night, while changing Liliana’s dirty outfit, I bent her forward to look at her spine — it was curved.
It got to me a little bit. First, there was the CDH. Even though it was fixed 4 months ago, the effects of it have been ongoing. Liliana’s reflux is still a major issue for us, with her gallstones and bilirubin levels maybe preventing her from properly digesting the milk fat. Now there’s another issue, scoliosis, which most likely will need constant observation.
CDH is a rollercoaster of health problems. Even though Liliana’s hernia wasn’t as bad as most babies’, we struggle with the lasting effects of it. Sean and I are worried about reherniation, which is less probable for Liliana because her repair did not involve a patch.
The only resource of information to us about all the effects of CDH has been the internet, and even then some topics have been difficult to find information on.
I believe a great resource for CDH parents would be a book, in the same style as What to Expect When You’re Expecting. There would be information about all the associated diseases and health conditions, along with their symptoms. All the information you’d need would be in one place, not in various stapled handouts nor random web pages. Hospitals would be able to provide them to parents expecting a CDH baby, or at the very least reference it as a comprehensive resource.
All I can say is that I could definitely use a book like that.
In other news, this past Saturday we took Liliana to lunch and a photo shoot in the company of her grandparents. Liliana dirtied her diaper during lunch and I had to change it in the mall bathroom. It was a bit intimidating to change her incredibly messy diaper with people going back and forth behind me, saying how cute she was.
The worst was yet to come. We went to the photography studio, got Liliana into some cute clothes, and got some photos taken. Then, Liliana started bawling! We’d pick her up and get her calmed down, but once we put her down to take more pictures, she started crying again. We managed to get a few more photos with Grandpa holding her, but since Liliana really didn’t like all of the camera flashes we stopped.
All in all it was fun, but probably not something we would do again until she got older. I’m looking forward to the spring and summer seasons so that I can take Liliana outside and take some beautiful pictures of her!