There’s no place like home.Dorothy Gale- The Wizard of Oz
Hello there everyone! Long time no see… er.. read I guess. Quick update, and a readers digest version of our discharge story! Per my last blog post I went home to FL for a few days to get my head together. Of course on my way TO Tampa, my husband was informed by the NICU team that we were being discharged in two days. This was amazing news, but now I was in Florida. GREAT. So I had a SUPER quick trip home, and then booked it back to Philly, left the airport bright and early on that Wednesday morning, went STRAIGHT to CHOP, and met my husband. We signed a lot of paperwork, did some aftercare discussions with the nurses and nurse practioners and then we GOT TO LEAVE. It was SO SURREAL. We were taking OUR baby home! I didn’t quite believe it. I was sure that even as we were standing on the train platform readying ourselves to board the long Amtrak back to Florida, I was sure that someone in scrubs was going to pop out from behind the train car and say, “JUST KIDDING, Takes backsies!”
There were no take backsies, but that did not mean that our initial journey home was any easier. The baby had been sent home with an apnea monitor, he was still suffering from occasional apnea due to his prematurity, and while they had all been pretty mild events, the NICU team sent us home with a monitor, until further notice, we are still currently being monitored and working with the apnea team closely to this day. (Over a month later! Hello as this is an update from the future!) We are still in serial casting for Corbin’s clubbed feet, but overall his treatment is going well.
The transition home was happy but difficult. Lack of sleep, lots of bills, and the reality of coming home was both very welcome but also somewhat foreign. My parents and both of my sisters picked us up at the train station in Tampa after a 5 hour delay in the Carolinas. At this point we were dirty, hadn’t gotten any sleep, barely anything to eat, and I was out of both breast milk and formula for the baby, so was scrambling to get home. My sister Katie was bawling as we got off the platform and loaded the car, everyone was very emotional after the last six months finally seemed to be coming to an end. Or at the very least a beginning of the NEXT chapter of our lives.
The train was exhausting. It was loud, and there was no way effective way for us to set up the apnea monitor, so we took turns napping at night, while the other parent stayed awake to watch the baby breathe. It was not very fun, as my anxiety taking the baby home was already sky high. 0/5 stars, I do not recommend. It was rough, I cannot express how terrible I looked at the end of this journey. In days (at that point) old clothes, dirty hair, smeared makeup. My parents drove us back to our house. MY HOUSE, I GOT TO BE IN AND SEE MY HOUSE. It was so magical. Grandparents and siblings watched the kiddo while we were able to take very well deserved showers.
Since then we have spent the last month at many many doctor appointments. We have had a transitionary visit at our new Spina Bifida Clinic’s neurosurgeon, who I REALLY like. He said Corbin’s scans looks amazing, and we are doing a follow up in December just to make sure nothing major has changed. He is eating like a champ, (and pooping too!) Out next big hurdle will be getting his urodynamics done at a local urologist to make sure things are ship shape. His pediatrician has been very kind, we are getting our shots, and doing normal baby things. So far he is reaching milestones. He is head lifting, and tracking, and cooing. We still need to work on sleeping through the night but we are getting there!
Mommy is happy to be home. Its hard, but its… ours ❤