As I sit in our apartment holding Julia and listening to Kaitlyn & Claire talk to each other like they’re in a musical (to the tune of “Sixteen Going On Seventeen”), I am so grateful we have survived this adventure so far.
As I said in my previous post we were moved to a private room. This private room was in the mysterious 10 South wing of the hospital. Now you may be asking what made it mysterious. We were told 10 South is where we would go before she was discharged. We’d have a private room with a window seat for one of us to sleep on overnight, and our own bathroom with shower. We started in the Surgical ICU then went to the Neonatal ICU. During Julia’s last couple of days in the NICU we heard she would get moved to 10 South. Everyone raved about it. How great it will be to have a private room, how knowledgeable the nurses are with the Spica cast she’s in, how happy we’d be. So we were intrigued. Being parents of a NICU graduate (Kaitlyn was a preemie for those of you didn’t know) Sean and I were happy in the NICU. We knew how things were done, how scheduled everything was, how thorough everything was recorded, and the attentiveness of the nurses. But again, everyone said we’d love 10 South.
We were moved last Wednesday night. We went from a nurse at Julia’s side all of the time tracking almost every move to being in a room by ourselves to take care of our sweet baby with check-in’s about roughly every hour from a nurse. After a very long, exhausting night I was ready to go home. Julia’s amazing urologist came in to check on her and I asked what I needed to do to go home. Julia needed to have her PIC line & feeding tube out, eat well, grow, and continue to heal from her surgery. Well I guess Julia was ready to go too because she met all of those requirements (Yay!).
So Saturday we received the confirmation Julia was getting discharged A huge victory! Our nurse was amazing in getting everything ready for us (a nice gift bag full of supplies for us to take care of Julia at home), and making sure we didn’t have any questions. Then we broke out of there! It was great timing too because Kaitlyn, Claire, Papito, and Mimi were only a few hours away from our apartment.
This week has been filled with lots of family time. It has been wonderful having our little family of five all together again, and of course having Papito and Mimi too. We have all gone to Julia’s follow up appointments which have gone well, went on a quick scavenger hunt, played outside, visited the science museum, & went to a Redsox game. This week has been so much fun and I’m sad to see it ending so soon.
Now we wait. The next big day on our calendar is the 27th. Between now and then we just need to continue to let Julia heal, eat, & grow. On the 27th she will have an ultrasound and x-ray to make sure her bladder has healed then do some trials without her SP tube draining her urine to see if her bladder can do what it’s supposed to. If all goes well we are hoping to be HOME towards the beginning of May. Thank you for the continued thoughts and prayers. We cannot wait for everyone to meet her! xoxo, Tori