Even the most flexible tree can only bend so far…
And I’m FAR from the most flexible. Today the stress is finally starting to cause fractures. This morning Gabby had a Brady right before I got to the hospital. It was too much for this bent tree to take. So I sat there rocking her and crying my eyes out. The poor nurse was sweet and just kept telling me she was sorry.
Our practitioner came over before too long. Likely the nurse had alerted her to the mental breakdown that was going on, and we had some discussion. I was mostly over my meltdown by the time she came, so I was able to speak without completely dissolving into a puddle. We went over several of the SAME things we’ve gone over before, only this time I felt it was time for some polite push back.
The thing is, Gabby is getting NO treatment whatsoever for these episodes. She doesn’t need oxygen when they occur. There is basically nothing that they are doing there that we couldn’t do at home beyond monitor her. I suggest a take home monitor or “emergency” oxygen if that’s what it would take. Kids go home every day with worse conditions than bradycardia, I know! She told me they were stopping sending home monitors with families nation wide because they were extremely unreliable. (Good to know) And she said that insurance wouldn’t let me take oxygen because she doesn’t “need” it. Okay, so why in the world does she still have to be in there?
That’s when she went into medical overdrive on me. This isn’t the first time that I’ve had medical practitioner jump to worst case scenarios to try to “scare” me into doing something when I’ve been pushing back a little. I think it’s just part of their training and expertise jumping in there, and honestly she wasn’t as bad as some have been. I didn’t feel she was acting condecending because of my “ignorance” but I still didn’t completely let her get away with it.
She mentioned before that Gabby could potentially be aspirating food, and that’s one that’s been mentioned several times through this process. The thing is, Gabby is NOT developing a oxygen dependency because of low saturation levels, so it’s unlikely that she is aspirating. I brought that up, and the NP agreed. Next she said that Gabby could develop a intolerance for feeding that could be “life long.” This was the part where I kinda realized she was grasping a little. She said that she’d be so irritated by these episodes that she’d start refusing the bottle and refusing to eat and end up with a gastronomy tube. What?! I told her that I’d seen no sign whatsoever of that in her, and again she agreed, but said that it’s something that “could” happen. At this point I told her that I didn’t think keeping her there for every “possible” “could happen” scenario was an option and that her ped at home could keep an eye out for any of those possibilities. I think she realized she’d kind of gone overboard a little now and backtracked to the “now” which was the episodes that she was having.
Finally she told me that she “wasn’t sure” this episode would count against her, and that she was going to get the opinion of the neonatologist in the morning. She also suggested going forward with the swallow study tomorrow to see if there isn’t some info we can get that will be helpful such as if thickening her formula will help. I agreed to all of that. What else can I do? Then she suggested that I room in with her tonight and maybe the next 2 nights as well to see if she does any better with me feeding her the whole time. I kind of feel like this is just a gesture to give me something “to do” because really, who thinks, honestly, that the mom is going to do a better job of feeding than the nursing staff?
But I’m going to do it anyway. I’m not excited about the idea of Claire and I having to spend the night in the hospital. It’ll be just me taking care of both girls, since this whole thing had to drag out past when Stu had to go home. I’m so frustrated right now it’s unreal!
So pray for us! Claire and I will be heading back up there after shift change (8pm) and then it’s all on me. *sigh* It’s not like taking care of babies at home. Not at all! It’s incredibly stressful! Plus I’m going into it with a sleep debt already thanks to the little princess who doesn’t like to sleep at night. 🙂 All of that to say, I really do need prayers tonight!