The most important thing to remember about the NICU is that it will one day be over. I had been told that and it has been a mantra that has kept me going on some of my toughest days.
But this week as her possible discharge on Wednesday loomed, I found myself facing the reality that while her time in the NICU is hopefully coming to a close a lot more of the NICU is coming home with her than I expected.
There would be feeding pumps, NG tubes, breathing treatments, and multiple medications as well as weekly visits from home health nurses. And if after a few months she did not progress her bottle feeding then there could be a G-tube placement.
It didn't seem as intimidating a week ago and all I wanted was my baby back so I wouldn't miss out on her life, but then as it loomed closer the reality of it is a bit more unverving. Thanks to http://www.feedingtubeawareness.com/index.html I was starting to see the possibility of a g-tube in our future as a more positive and temporary thing. Initially I saw it as a slippery slope to long term feeding issues that was only for "really sick babies." And I was certain my baby was not one of "them." But I'm beginning to accept that while it could be worse, RAD along with BPD and GERD are serious diagnosis that can cause some longer term issues that will complicate all of our lives. It sucks.
It's a mixed bag but it could be so much worse because I know of babies that go home on trachs and have much more complex issues. I tried to keep that in mind, but still felt down because my baby is going to have more struggles than I had hoped for. It still baffles me a bit that these issues were always present, but the initial NICU ride seemed so smooth and how she was 5 lbs ago did not seem to indicate what would come to pass.
I expected linear progress in bottlefeeding, but now I realize I was in denial and being a bit naive. I had seen her bottle feed like a pro, so once the formula was thickened to prevent aspiration issues she was having problem solved right?! Not exactly. Enter Reactive Airway Disease. I'm told that if her breathing was just fine she would probably be bottle feeding without a problem, but being the way it is it makes bottle feeding so much work that she is either incapable or uninterested for the majority of her bottle feeds. I was beginning to fear oral aversion and g-tube as more real possibilities. But then again, for at least two of her bottle feeds per day she sucked down all 75ml no problem. There is no way to predict the future and only our little Tara (who just hit 9lbs) holds the key to what happens next. Those of you that know me know I don't exactly thrive on uncertainty.
I had a rough bottle feed the Friday night that did scare me, and I got to see her get worked up for no good reason and be difficult to calm down. The next morning it got worse and she began wheezing and I called off the bottle feed. The nurse concurred with my assessment, which helped me trust my judgement. But it just shows me that I'll be having to make some judgement calls with no nurse to guide me about whether to continue a bottle feed or not in the future. I wanted to push her just enough to progress her oral feedings and she doesn't become "lazy" and progressively resort to NG feeds, but not push her too much that I compromise her breathing significantly.
I thought the scariest part was that when she cries and gets worked up it causes respiratory compromise, so there is urgency in getting her calmed down. Her oxygen dips into the 40's and she sometimes stops crying just due to the exhaustion that causes. I"m trying to figure out why the nurses aren't as alarmed by it as I am. With my son I can reassure myself that he is okay and can go ahead and get the bottle ready knowing he is fine and will stop crying in a minute when I bring it to him. With her I have to respond immediately and there is no such thing as "crying it out" with her due to her respiratory issues. That is a freaking ton of extra pressure. Did I mention I have TWINS! My little man is going to have to cope on his own more than I wish he did, because if they are both crying for attention she will have to be the one that gets it for medical reasons.
I think I'm also mourning the loss of freedom. I'm trying to understand the "reactive" part of RAD and if by simply stepping out my front door I'm putting her in danger. Do I really only take them outdoors for doctor appointments only? For how long? Am I being irresponsible if I put them in a stroller and take an evening walk alone with no people nearby in April? What if I take them to a relatives house?
I was hoping to regain my excitement about her finally coming home, but in the days before her discharge I was only feeling anxious and have so many unanswered questions about what the future holds and all the implications of her diagnoses. But then Sunday happened. Then Monday and Tuesday. And now it is Wednesday and in case you hadn't noticed there is no celebratory post that my baby is finally home.
The NICU journey is now far from over. Update to follow.