Little by Little

 Might be able to keep this one shorter than the rest 🙂

Things are going well for Crew. He continues to make small progress each day. He’s up to his full 62ml of milk now that his TPN (and lipids) came out a few days ago. He is handling the feedings well enough that they were able to pull his extended dwell completely a day or so ago! They were keeping it in just in case.. So, he now only has an ng tube and nasal cannula for .12 oxygen.

Still hasn’t kicked the oxygen. It’s more and more likely that he’ll come home on oxygen. He hates the cannula being in and pulls it all the time and when he does, his oxygen levels stay up well. However, when the nurses try to wean him down he drops too low and they have to bump it back to .12. We’ll see where he ends up by discharge...

As for the ng tube, he’d need to be able to get his entire 62ml from a bottle in order for that to come out. He does really well sometimes, then only 20ml the next. They just moved him off of the preemie nipple that they had him on due to his weak neck muscles and him not handling swallowing well enough. He’s now on a newborn flow nipple since he’s doing so well sucking and swallowing now. 💪

That leads well to his therapy status - The occupational therapist fed him today and determined his bottle nipple could change and she also sees good improvements in his neck muscles. We’ve seen it too on his bed camera as he wiggles his head all around. She did say that he’s still quite weak in the neck and shoulders and wants us to start sitting him up more and even working with a modified tummy time that protects his O. He should get his plastic turtle shell cover soon (this week??) and that will make it even safer to flip to his side in that modified tummy time.

To sum it up... where we’re at now is that most likely he’ll have oxygen at home, he’ll have a therapist coming to our house to help with muscle gain, and can discharge once he takes his entire feeding from a bottle and his turtle shell is in.

We’re really proud of him and how much he’s fighting and working to get out of the NICU. We’ve had some good nurses lately and I know that they have been keeping him comfy, which is helping.

We’ve also started changing his O wrappings ourselves in preparation for him coming home.

As for other family things, Lindsay is healing very well and is up and at it quite a bit. This has been a huge blessing for her so that she can be here with Crew. Kennedy and Drake were pretty upset and shaken up by Lindsay and me being gone so much for that first week. Them having school this week has really helped them to get back in a groove. Lindsay and I are here during the day while they’re busy at school and then we try to get home at a decent time in the evening. I’m surviving - I do really well, but then someone here at the NICU will remind me of some things that are still areas of work for him and I’ll get myself tangled up in it too much 🤷‍♂️

Whelp, didn’t really end up being shorter this time after all!