When the ENT was discussing follow up care with us for Natalie, she mentioned that she was part of a group of doctors that focused on cleft palate issues. That isn’t an issue that Natalie has, but because our doctor is part of this group, she has strong ties to the Craniofacial Center at Seattle Children’s Hospital. She referred us down there to have the team meet and start watching over Natalie and hopefully get us some answers on her various issues.
The big day was finally here and I was super nervous about flying down there. Flying with babies in general always gets me amped up, but add in the monitors, feeding tube and my pump - well it felt pretty overwhelming. Luckily, the flight down was a dream and she pretty much slept the whole way. We were worried about her ears bothering her, but she didn’t even stir as we landed. Whew!
Another awesome aspect to going to Seattle is that we have friends who live there and are super close to the hospital. (Thomas and I actually stayed in their house when we went down for the fourth of July one year). It’s so great to stay with friends that also have kids because they have all kinds of things that make it less stressful than staying in a hotel. I mean, what hotel would have a cool Lightning McQueen chair?
Natalie was unimpressed, but the boys thought it was great when we sent them the photo. :)
All of my stressing and planning failed me a bit this morning and I didn’t get her feed started early enough. So I had to pause her feed for them to do her vitals, which including laying her down to check her weight and length. If you have ever had a baby with bad reflux, you know that this is a terrible idea. She, of course, refluxed most of her meal right back out. Sigh - parenting fail… I swear she’s giving me the “Really mom?” look. Probably because she was currently only wearing a blanket.
The silver lining is that her breathing picked up that coarse sound that it has so often and all of her new doctors got to hear it. They definitely had some concerns about the reflux and it damaging her esophagus. They some ideas for different reflux medicines that insurance would cover.
As for the rest of the visit, there isn’t much to be done yet for her ear reconstruction, but we did get to meet the whole team. Once she is a little older, they can do some more imaging to see the condition of her inner ear structures and what the best path forward will be.
The trip home was very peaceful! We didn’t really get any answers like I had hoped we would, but they want us to come back in a few months so they can do an endoscope and take a good look at her esophagus and related structures while under anesthesia. Our local ENT took a look at her while she was awake and she has so many secretions that it was hard to see much. By putting her under for the procedure, they can really get her cleared out before taking a look. So a bit of a holding pattern until then… :(
But they didn’t send us home totally empty handed. We told them that she sleeps in a wedge, but ends up in bed with us most nights because she throws a fit after a few hours in it and we can’t get her calmed down until she’s on her back. So they had the physical therapy department squeeze us in and got her fitted for a different style of wedge. Our friend amazingly had a giant bag for us to stick it in to fly home with it, so it made the trip without falling apart.
Here’s hoping it helps!