I admit it, I was a total freak when it came time for my daughter to come home. I was happy but I was also terrified and incredibly nervous. I did not feel ready for my daughter to come home. But home she came and we started quickly settling into a routine of feedings and naps and sleep and more, cocooning ourselves from the outside world and attempting to normalize our lives. It lasted a total of 5 days and by that time we were a mess. We were stressed, Becky had feedings coming up, alarms going off on the monitor and had started sleeping endlessly. I honestly thought I was losing my mind.
After a series of calls, we ended up calling her pulmonologist (lung doctor) who had been managing her oxygen orders and her reflux medications. It was Friday afternoon by the time I called them and they got us in within the hour. We rushed to the appointment. The doctor told us our daughter had dropped in weight and was obviously struggling. We felt like total failures as he laid out the options. Change reflux meds and do outpatient tests or put her in the hospital so they could do everything there and observe her while we got some much needed sleep. He empathized with our situation and told us he knew this from a parent perspective himself as he left the room so we could make a decision. Thankfully we had my mother in-law there because as I was waffling about what to do and shaming myself internally for be a royal failure as a parent, she said bluntly, “She needs to go into the hospital.” She was right.
Reality is, hospitalization happens in this community, period. So prepare for it rather than have it come at you full blast and be completely unready. Some tips:
My daughter ended up spending two days in the hospital. She came home on a new feeding regimen, a new medication, an additive to her feeding schedule and full-time oxygen as opposed to only with feedings. While we were still tired and stressed, having the team take over for a couple of days was helpful and it got us back on track toward a smoother homecoming.