As the weather has started to shine, Navy has, too. This week brought more play time, more smiles, and more bright, open eyes than previous weeks.

Yet.

This has kind of been a whirlwind of a week. It started last Friday afternoon when the NP sat down with me and told me that it really wasn’t normal how grumpy Navy is and how difficult it’s been to wean her. I was taken off guard because she seems so much happier than what I remember of Kai. The NP consulted with someone else and they decided to start her on a new medication to treat for Neuro irritability and she suggested there may have been some trauma to her brain from the breathing episodes. Well, that’s a fun thing to wonder about over the weekend.

I called rainbow kids on my way home and they’ve truly been amazing. She explained the irritability is more likely due to not being developed (she’s been sedated most of her life) and is something she’ll grow out of.

We started that new medicine (gabapentin) and everything turned around nearly overnight. We’ve been able to wean aggressively. We were on track to be off morphine in about 3 weeks, and now we’ll most likely be off by Monday (one full week later). We’ve also been able to wean her oxygen and she’s doing well with that. She’s also had some really happy awake + calm times so we could do quite a bit of therapy with her. However, the biggest change is her big, bright eyes came back. I think this is the first time I’ve seen her eyes so clear and bright and happy since her birth. You can really tell that the drugs are coming out of her system. She’s so beautiful ?

Then Wednesday was a pretty hard day for me. The nurse we had that day said she was looking through Navy’s file and realized she’s never had an official diagnosis. After some digging we found that genetics hadn’t signed off and they recommended doing another test. After looking up what they wanted to test for it, I panicked. Navy checks a lot of the boxes, and it’s related to vacterl so you can have both characteristics. It’s a really nasty disease and something that would change our lives drastically. As I was looking this up, a baby in the same room was “under suspicion” of having covid-19 and everyone had to gown up. Looking back, I’m sure they didn’t really think he had it otherwise I wouldn’t have been able to leave.

I don’t think I’ve had a panic attack before, but Wednesday night and Thursday day I was pretty shook up. However, Thursday night Steve convinced me to read some Harry Potter ⚡and conference talks and it helped me reset and I feel more ready to accept whatever may come. Also, rainbow kids told me that she really thinks she looks too good to have that disease and that’s also reassuring.

The care team decided to hold a care conference with the geneticist and the entire team. To be honest, we’d been expecting him to just say he wasn’t worried about it and move on, but he reiterated that he recommends testing for it. We’ll do a blood draw on Monday then it will take 5-6 weeks to get the results back.

But, a lot of positives came from that conference! The attending doctor explained that Navy has chronic lung disease right now, but she will grow out of it and is doing incredibly well. He expects her to be able to run and roll around in the mud and do anything she wants except climb Mt Everest. We will start oral feeds on Monday!! That’s such a big deal! Then we will wean her clonodine (which should be easier) and they even gave us a timeline of going home within the month. Ahh!!!

She’ll most likely come home on some oxygen to help with her pulmonary hypertension and possibly still a feeding tube as a lot of babies have to work up to taking a full feed though a bottle. But compared to where we were, it’s crazy to think she only needs two little wires to help her out.

So proud of our big strong girl and grateful for each day with her?❤️