Thought I’d let you know how it’s all going….
Benjamin has been home since Monday now and it all seems to be going ok. He definitely doesn’t have the energy that he used to. He is able to sit up on his own now but tires very quickly and I’ll often find him just laying on the floor playing with his toys. He is bum scooting again but definitely not as fast as he used to. Yesterday we went outside on the deck for a while to enjoy the sun. I think he thought it was very bright since he kept sitting there squinting. He did enjoy it though. I think he has to get used to going for a nap as he has been crying every time I put him down for a nap. This could be because he spent a lot of time in his bed in the hospital so maybe he thinks I’ll leave him in there.
Nights have been going ok. I’m still not sleeping ever since he came home. I just need to get used to him being on the bi-pap and trusting that the machine won’t malfunction etc. The worst is trying to get the bi-pap mask on him in the dark. His feeds need to be adjusted so he doesn’t eat while he’s sleeping and since he’s not allowed on bi-pap while eating, we have to put the bi-pap on at 9pm at night. But I think his feeds are almost adjusted so he only eats at breakfast, lunch & dinner. Then we need to work on the rate of the feed since it takes an hour. It’s a little too long for Benjamin as he doesn’t like to just sit there.
We are very happy to have him home:) It’s a big adjustment for all of us right now as we’re trying to figure out a routine and trying to adjust his feeds. But it’s definitely beats driving to the hospital to visit him.
Please pray for strength for us as we adjust to a new normal.