On Monday, January 14 at 11am, Sebastian went in for Gtube surgery. Ali put on the blue smock and matching net hat and carried him back to the room where he’d be put under general anesthetic. Curious George accompanied them. I know what it is like watching your child ‘go under’, I’ve done it a few times before. I was thankful Ali took Seb back this time, I was just too emotional. And Seb needed me strong.
How did we get here?
When Sebastian was a newborn, he came home from the hospital with an (nasogastric tubes) because he wasn’t nursing; finishing a bottle was a challenge; and he had severe reflux. I was feeding him, then pumping for his next meal after I got him back to sleep. In the early days I had a hand pump and it was a timely affair. I read the ‘What to Expect the First Year,’ skipping through to topics such as colic and sleep. Skipping over milestone bits at the beginning of each chapter.
In those early morning hours after he had just gone back to sleep, and I was pumping, I researched NGtubes on the Internet. I stumbled upon photos and stories of children with Gtubes (gastronomy tubes). They scared me. So much. I was determined that this would not be my son. I would make sure he never needed a tube inserted into his stomach for eating. I couldn’t even fathom it.
Sebastian took his ngtube out about two weeks after he came home AND finished his bottle that night. Huge triumph. We didn’t put the tube back in. He decided to nurse at 4 months, just before we moved to Cairo. At 5 months he stopped taking a bottle and continued to nurse until he was 2 years, 8 months. Something I am both very thankful and proud about. Despite his rough start, he was a chubby baby.
After Seb stopped nursing, he kept growing in length, but his weight did not keep up. For the past 2 years we’ve been followed by a nutritionist and dietician. Gtube surgery has come up and I’ve always fought it. His weight was comparable to other kids with CP, right? It wasn’t until we had Tallula that I started seeing such a huge discrepancy in his weight gain. Well, that’s not entirely true.
This past year has been very stressful. I know he’s smaller and lighter than he should be. I do a lot to add calories. And he loves to eat. But the energy he uses to eat is not replenished by what he eats, not to mention the energy he uses to play and walk in his walker, which he’s doing every day. When Seb gets sick he quickly loses weight due to loss in appetite. Getting that weight back can take months. It’s been a vicious, stressful cycle.
The inner battle ended just after we returned from our trip to London. While we were there, Sebastian had trouble eating. He was tired and not eating enough made him more tired. When we returned, we decided that Sebastian would have the Gtube surgery. He needed the Gtube surgery. I was heartbroken. Heart. Broken. We both knew we had to do what was best for Sebastian, as difficult as it was. I had been working towards acceptance for months. It’s difficult to think about adding ‘one more thing’ (joining another FB group!) to the current list.
There was a lot I was worried about. I discussed it endlessly on CP forums, etc. I did the research. How would it affect his reflux? His sleep? His mobility? His diet? Would it work? Would it change our lives? For the better?
Stay tuned for the surgery, the recovery and the journey so far…