Elyse has been home for two weeks now, and it has been a whirlwind to say the least. CHEO did a great job facilitating our transition home, and set us up with home visits from a nurse, dietician, and occupational therapist. Elyse has also been having regular visits to her pediatrician and follow-up appointments at the hospital with the hematology and ENT clinics to monitor the resolution of her blood clot and granuloma. Suffice it to say this little lady has way more of a social life than we do these days!
happy to be home
Our biggest challenge right now continues to be her feeding, although we are making progress day by day. She started nursing again within our first few days at home, and is slowly getting stronger and able to take more each day. In the meantime, we are still using the NG tube to top her up and ensure she is getting enough calories and staying hydrated. It has been a fine balance of trying to have her hungry enough to want to eat without losing weight -- and the game plan seems to change every other day, depending on how she responds. The OT was in today and noticed a big improvement from last week, which is very encouraging.
staying entertained during a feeding
It has been difficult at times to lose the mindset that something else is going to go wrong. One of our first nights home, Elyse was unusually fussy and none of us slept much. We started to wonder what it could be -- is she getting sick again? Maybe brewing another infection? Should we take her back in? It wasn't until the next morning that we noticed two freshly cut bottom teeth peaking out from her gummy smile -- a sweet reminder that life goes on, and maybe it's not always the worst case scenario. She certainly does not seem to have missed a beat in her developmental progress, which is a big relief.
what's all the fuss about?
Despite a few extra challenges and a significant decrease in sleep, it has been absolutely wonderful to have our baby back home again. And being home in time to prepare for Christmas as a family has made it that much more magical!
