The first morning Seb woke up in hospital, my mom, Jerry, Tallula and I crowded around the computer to say good morning via Facetime. It was awesome seeing him right away. It was difficult for me not to be there, but less so with Ali by his side. I wanted to get dressed and ready to go as soon as I could. I couldn’t get there fast enough. It was very reminiscent of his time in the NICU after I had been discharged from the hospital. No waiting for buses this time, just rush hour traffic.
As soon as we got there, Ali had a shower and went for breakfast. Or vice versa, some details run together in my memory. I got lots of cuddles with Sebastian. We waited for rounds; when the group of doctors would come in and update us on his progress. The nurse had already been in early that morning to give him his seizure and reflux meds and change his dressing.
The doctors arrived just as Ali returned, filling the room. I had more flashbacks to NICU, the anxiety from waiting for the doctors and then the rush of emotions which come with what they say. The primary resident read off Sebastian’s history. A list I had not thought about technically in a long time. Failure to thrive (FTT) was at the top. I winced. I didn’t recall hearing that before. I suppose it goes hand in hand with our ‘elective’ (that’s what they called it) Gtube surgery. Regardless, sucker punch to the gut.
I can certainly argue that Sebastian is thriving. Despite his difficulty in gaining weight, that did not stop him from growing out of his clothes and shoes this past summer. It does not stop him from racing around in his walker, swimming or sliding down the slide at the park. It does not stop him from building friendships and having playdates. Or communicating with letters, pictures, and facial expressions. It does not stop him from living and being fully engaged in the world around him. No failure there.
But I digress.
So here we were. In the hospital again. Far far away from the one he’d been born in. The smell of hand sanitizer remains. The machines don’t beep. But finding the most comfortable sitting position is challenged by an IV in his foot (later moved to his hand once his feet become too swollen) and tubes in his nose and stomach. But we do all right.
My mom and Jerry stayed two more days after surgery day. Each day I came and went and came again. Lula and the grandparents stayed in the morning and I came back again for late afternoon/early evening after getting Lula settled into her afternoon nap. I couldn’t be there all the time, but I was there.
I was there in the beginning to make sure Seb got his meds sorted because for some reason it hadn’t been a priority for the staff. Everyone referred me to someone else. But the squeaky wheel (yep, that’s me!) sorted it out. I was there when he had a seizure. Thankfully he only had one. I was there when they changed his IV from his foot to his hand and when it got removed altogether and he was free!
I was not there when he woke up in the morning or went to sleep. But his dad was. And we had FaceTime. I was not there’s for most of the dressing changes. But I was there for a couple. I was not there when they finally took his NGtube out. That thing causes him more reflux than usual. I was there when the Child Life Specialist came for a visit and brought the activities for the afternoon: a rubber catapult kit. I was not there to help put it together, but papa-daddy was. I was not there when the nurse told him about the Bravery Beads necklace, but I was there when he put it together.
I was there when our friends came to wish Sebastian well with smiles, warm voices and funny, tear eating puppets. Thank you M and E. And Papa-daddy, for your dedication and imagination.
We were there as Sebastian started eating special (dairy and soy free) formula through his tube, building up the amount each feed, which was assisted by a special feeding pump every four hours. We were there not eating or drinking in front of him because he couldn’t eat until Day 4. And that day he drank chocolate coconut milk from grandma and ate sweet potatoes.
For some reason Sebastian had been placed in the corner room near the isolation wing. He got an extra bead for his necklace for that, but it also meant he didn’t have any visitors from the clowns or hospital canines, or even the music guy. Lucky we are so entertaining. And so are Elmo and the Muppets. There was a lot of reading books, watching movies and cuddling. Sebastian spent most of his time in our laps. And why not? That’s the best place to be.
Up next: Home. AND What is a Gtube and what does it really mean for Sebastian?