This is a long update about Axel’s current situation. We are so frustrated and it seems like we keep going backwards.
Previous to now, he was happily (ok not always happy but ok! Lol) eating all his bottles. He had eye surgery 8 days ago and was a bit sluggish to recover, but since then he will hardly eat via bottle at all.
He became so dehydrated and lethargic after 4 days, they put his nasal feeding tube (NG) put back in last night. He just isn’t the same after his eye surgery last Thursday and won’t bottle, though Chris can still get him to. Seasoned NICU nurses and OTs can’t feed him and I can’t anymore either.
I stayed overnight with Axel. Mostly to work on feeding, but also because he’s lonely and just lays there all day.
Chris took care of Jaxon and basically got no sleep, just as I hardly got any up with Axel most of the night (plus pumping time). And what did I accomplish? Not much.
I had a long conversation with Axel’s doctors this morning to decide between keeping an NG at home or going with a G-tube. Both have benefits and drawbacks. There is no clear answer as to what is best for Axel and that makes it so hard.
Before his eye surgery last Thursday, Axel was taking full bottles for 2 weeks! Definitely meeting discharge criteria. Now, I can’t even get 10-30ml in (a full feed is 90-100ml). More worrisome is the fear he displays when he sees the bottle, how he freaks out, and how he suddenly loses his appetite after starting to eat. All signs of aversion, which is likely from him being strapped down and force fed as he’s crying and choking for 2 nights. I am so mad at myself for not speaking up sooner about it against the nurse who did that.
Because of that, we’re likely going to have to get a G-tube for Axel too which is another surgery and anaesthesia. And, adds more complexity and medical expenses at home. And more specialist appointments to our already overbooked medical calendar.
Or, the other possibility is that his brain is changing and can no longer figure out how to eat. That’s what they tell me, from his brain damage. But I don’t really believe that.
Having two tube-fed babies at home is not how I pictured ending our NICU journey. We have to decide between NG and G-tube and it’s hard. Especially hard because Chris can feed both our boys and I can’t. I need to be able to do it all once he goes back to work so that’s added pressure too.
The team here can’t believe Chris can feed Axel so well so they have asked him to stay overnight tomorrow to do all Axel’s feeds and they want to watch how he does it. They say they haven’t seen a case like Axel’s before that isn’t a clear cut aversion, aspiration or not-eating issue. He’s confusing everyone here from the docs, OT, physio and Complex Care.
Also as a side note, nothing makes you feel worse as a mother than knowing you can’t feed your own children and having to admit it to a group of 10+ people daily, and then having them ask for your husband to come do it instead. Although they are all very nice to me and I’ve asked them to watch me feed Axel and tell me what I’m doing wrong, but they just keep saying I’m doing everything right and they have no additional advice.
But it doesn’t change the fact that I feel like shit, can’t believe this is our life and where we are now, and worried about taking care of them at home.
As Chris will stay overnight tomorrow, it means I’ll be alone with Jaxon for at least 24 hours and to be honest that thought terrifies me. It’s like I can’t even take care of my own children and that is a horrible feeling. In his case, I do have the G-tube to fall back on but it’s difficult to manage alone with him (while he’s screaming and thrashing around).
What kind of mother is afraid and dreading being alone with their own child? I cry when I think about later tonight, wondering how I will do it. And just praying I can get an hour or two of sleep.
Just feels like things keep getting worse instead of better. And not to sound like a total pity party, but no one actually gets how hard it is on Chris and I. These aren’t normal babies. Things aren’t fun or happy even some of the time. It’s hard, we’re stressed, and no one can help (with the actual baby care anyway).
I know so many other people have worse situations so I’m not saying we’re the worst or trying to compare to anyone else, but it’s just… hard. And keeps getting harder. That’s all.