I tried to be brave when we left Rose’s Eirs but I must admit it was a wrench. From my point of view it was such an intense 5 months of building strong connections with people and those relationships are left in NICU. Such a strange feeling .
Rose is now amoung her own kind and it has helped my headspace no end.
In NICU we were primarily surrounded by babies who couldn’t breathe or eat on their own but given time and support would be able to in a few weeks or months. Now we are with the group who need surgical intervention to achieve those goals and it’s helped reality hit home like a ton of bricks.
All of a sudden I can see how fast Rose could go backwards if she doesn’t get this fundoplication I’ve been dreading.. to protect her airway. There’s no way around the Gastrostomy. She coughs when she tries to swallow – so no more breastfeeding for us and I’m terrified her ventilation support (home C-PAP) won’t be enough when we trial it again… but I just won’t say that word yet.
Children’s is much more harrowing. Especially at night. Older children cry and cry and sound like James and Daniel would if they were in pain and I feel so relieved it’s not them crying but at the same time, equally devastated for their parents. Thank goodness Rose isn’t in pain but I worry so much that she may be soon and wish I could find a way to spare her more suffering.
Uncle Ben arrived early this morning at 7am and gave me a break so I could sleep lying down for a bit and have an unrushed shower. Was lovely!
Nap and shower were followed by breakfast with visitors from Hong Kong! Felt good to introduce Fi & Sharpy to Rose – they’ve been following Rose’s progress closely and are so lovingly invested in her goings on that they (like so many of you who follow this blog) have made me feel so emotionally supported. I’ve really needed to feel that. Thank you!
I’ve spoken to the mum who has a son with Gastrostomy, Fundoplication and Tracheostomy (there.. I said it!).. I’ll call it GFT. She was at the hospital for some appointments from 10am-4:30pm… I bet she can’t wait for the day, years from now, her son won’t have to set foot here again… Anyway she didn’t have the time or energy (I imagine) to answer my sheet of questions but said we’d talk soon.
In the meantime one of the parents in our room kindly let me see his daughter’s gastrostomy. She’s the same age (corrected) as Rose and it looks ok. Clean and neat and doesn’t seem to bother her. You get used to it apparently and just need to see it as necessary and no big deal. I’ll be so proud of myself when I can see it like they do! I know I will. Time and experience have incredible life changing powers.
Oh and she’s had her second 24 hour period of no vomiting (since food).. unfortunately it ended with a large vomit when the doctor was examining her this afternoon but I’m blaming the exam!!
Next step is exploring if an LBO would be useful so she’s just feeding, growing, smiling, SLEEPING and cuddling for now but watch this space:
Good night x