Sarah Jayne Ames (see her website at sarahjaynesphotos.com) was at our house again today, working on her project with the baby for her finals. Here are some of the photographs she sent us tonight…
There is this one, which shows the cavern inside her cleft palate mouth:
I promise she didn’t make the baby cry. The baby fell over, all on her own, and we just worked quickly to capture the moment! She also got this shot of the grafted tongue sewn to her lip in a tongue-lip adhesion:
Here she is with her ever present oxygen tubing that stretches out all over our house, wherever she goes, so that now she is trying to crawl we can find her by following the cord! This is maybe one of my favorite shots of all of them, because it captures her world as it is, and those eyes that know so much.
This picture was so lovely to me that it almost made me cry. Pierre Robin Sequence babies are often nicknamed “cabbage patch kids” because of their tiny chin and big eyes, and this one with her head full of hair. It’s urban legend that the lady who created them had a PRS child, but there’s no documentation of that (the Xavier guy stole them from the lady, but no one knew that until after the fad was over). This particular doll was sent to us by Kirsten, our heroine friend who has PRS but has already made it to her 20’s (and has another surgery scheduled between college semesters at Christmas time).
As the baby played with her doll tonight, she kept trying to share her oxygen with her doll. It was both tragic and adorable, that moment of normalizing her struggle. Next time we finish tubing when she can’t use it anymore, I will totally make it into tubing for the doll.
In the meantime, we are unexpectedly headed to Utah due to oxygen issues and the ongoing to-trach-or-not-to-trach and gtube or not gtube issues, and hoping to connect our hero-expert there with local providers to help her more consistently instead of arguing over what she needs or doesn’t need.
Cincinatti called today also, confused and upset that more hadn’t been done sooner. They agree a blue baby is not okay. Ever. They were in shock when they received her latest test results, and ordered more tests and pictures and procedures and the flexible bronch scope and pulm and cardio testing while we are there anyway in January, so we have to report there sooner than expected. They may or may not trach her, may or may not do another distraction, but still plan to do the cleft palate repair and the release of her tongue – both of which will shut off more of her airway. Gtube is still on the table, but now that she is back on oxygen again she has gained three pounds in two weeks so is back to the one percentile, so hopefully we can avoid that. We will see.
For now, here are some more pictures with the doll she loves: