Benjamin almost made it a week off of CPAP but had to go back on yesterday. He was breathing very heavily and his oxygen saturation was dropping. Last night he had rough patches when they took him off again so they may put him on a more scheduled CPAP weaning program.
As you can imagine, this is super frustrating. We were really hoping he wouldn’t need to go back on and CPAP would be something he could kick for good. That would mean they could get his hernia fixed and we could just focus on the feeding. But I suppose we don’t want to rush him – it’s not like we have a CPAP at home if he starts desatting there.
On the feeding front – we are making headway. He takes a bottle for a bit of almost every feed (and finishes a couple of bottles a day). Amy and I are getting much better at it and even I feel much more confident feeding him. And he is over 6 pounds now!
We are still waiting to get the full update from the eye surgeon, but the short version the nurse shared with us is that Ben’s right eye is doing what its supposed to do, but the doctor had a hard time even seeing the retina in the left eye. We are crossing our fingers that this doesn’t mean we should lose hope on the left eye, but at the very least we are happy the right eye is hopeful.
I just realized how often I use the word “hope”… I guess it’s appropriate, feels like hoping is our full-time job.
And at home, Benjamin’s room is ready and full of presents from our wonderful friends and family (thank you thank you thank you). We have a pediatrician picked (though his name sounds like a super villain). And the Car Seat Lady is going to evaluate our car seat and the installation in the car (might need to trade in our tiny Scion XA for something a little bigger…).
The fact of the matter is- we are so sick of the hospital and not having Benjamin home. It’s been nearly 5 months of this. At some point early on it stopped wearing on us because it became the new normal. But seriously – enough already.