Angry and sad...NICU: 72 days so far

[myra]

Need to vent here...feeling sad and angry this morning...any advice you have on getting through long NICU stays?

Our son Connor was born April 17 and has been in the NICU 72 days...longer than we ever expected him to be there. OH and I have reached and passed our breaking points multiple times already. We're doing our best to find optimism that he will be home soon and to try and stay supportive of each other, but we have had our share of really tough days. This week is especially hard because Connor was supposed to come home on Tuesday (the SECOND time we had a potential day for his discharge) but his medical team has made some frustrating mistakes that have kept us there longer. It's a teaching hospital, so the attending doctor changes every 1-2 weeks. When a new attending comes on, the plan that the previous doc put in place changes. The Nurse Practitioner is there throughout but she's not keeping to the plans with each change either.

The plan made 2 weeks ago was that he would come off caffeine (for his apnea) and if he went 7 days without any Brady spells he would be home on Tuesday. If he started having spells, he would be put back on caffeine. (Last time he came off caffeine, he started havings spells within days--it took them a week to put him back on caffeine- and then 5 days to get it to a steady state in his system) This time, on Day 6 when the caffeine was finally fully out of his system and as it happened the day the doctors switched, he started having spells. We asked about caffeine and were told it wasn't the problem-- just that he was immature and to give him some more time. We asked nurse practitioner- she said the same thing. We asked and asked and were told we needed to step back and leave his care decisions to his medical team. So the had us wait a couple days and they decided to run some tests...5 days later (yesterday) the test results came back that he needed to be on caffeine. The doc came to me and said "the results of the tests were as we expected- he needs caffeine." That's b.s!!- they kept telling us he didn't need it and now that they have hard data from an outside company, they are finally restarting him. If they really thought that, why not give him what he needed??!! I'm so glad that Connor is finally getting help, and it has been heartbreaking to see him turing pale and blue because of these spells. Heartbreaking that he should be home by now but they wouldn't help him.

I am so angry and sad that these added rounds of heartbreak and stress for OH & I could have been avoided...that he could have come home 2 weeks ago...or again 2 days ago if only they had stayed with the plan. We will give that feedback, along with other mistakes we feel were made, when we depart. I'm hoping he can come home very very soon.

 

[mara16jade]

I'm so sorry. I don't have any advise, but I read your story and didn't want to read-and-run. I'm sure you're doing everything you can, so just keep doing it. Don't let your and your OH's voice not be heard. You all are in my thoughts.

 

[jandksmommy]

I can't begin to imagine how frustrating that is! We were in the NICU for 117 days but we knew her stay would be that long so we never had the heartbreak of expecting her home only to be told she had to stay. I feel terrible about how they treated your concerns. The parents are an important part of a preemies medical team. The doctors and nurses change on a daily basis but the parent is ALWAYS there and sees what is happening. I was often asked for my opinion.

Will they send him home on caffeine? Our little one came home on caffeine and oxygen. She outgrew her caffeine dosage after about 6 weeks home and wasn't having issues so they took her off it. We still need the oxygen though

 

[rbourre]

My daughter was in the hospital for 62 days and on caffeine for most of them. She got off 1 week before she came home.

I hope he comes home soon.

 

[Blue12]

I am so sorry to hear of your difficult situation. I wonder if it would help to voice this concern to someone at the hospital. That regardless of it being a teaching hospital, that you want some consistent care and decision making for your precious little boy. I have found with my daughters medical situation you really need to fight and speak up for them again and again and again. Don't be afraid to demand it. xo

 

[scarolinarn04]

When my son was in the NICU (also at a teaching hospital) there was always inconsistencies with the treatment plan because of physicians changing. Had it just been me, then I would have gone along with what they said, but I don't like confrontation. My husband, on the other hand, has no problem telling people if he doesn't like the way something is going. Basically, my husband called them on it and insisted that we stick with the original plan. Had he not then I know we would have been in the hospital longer. Ours wasn't related to the caffeine, though, we were trying to get him to take all feeds with the bottle prior to discharge. I can understand not wanting to "make a scene", though. Good luck with your little one, hopefully it won't be much longer.

 

[myra]

Thanks everyone for your support. Scarolina- I also shy away from confrontation but like your OH, thankfully mine didn't either. And our frustration got to the point that I even pushed past that some. Thankfully our son came home this week- and we will never have to go back there. The last couple weeks just left us with such a negative feeling towards it all. But on to the positive now...Connor is home and we are all adjusting to living under one roof. Despite the exhaustion we're feeling, it is amazing and wonderful to have him home and to be able to be with him anytime without having to make the drive into the hospital, which id done twice/day every day he was there.

 

[jandksmommy]

Congrats on the homecoming!!!!