It’s hard to believe that you’ve been in the NICU for almost four weeks. It has flown by. And then again, it feels like we have been here.. forever. We still don’t have an estimated time of when you may get to go home, but the road there looks more and more clear with each day.
Tomorrow is our day, big guy. You are scheduled for your surgery in the morning, and we will anxiously wait for you to wake up once everything is finished. This surgery will consist of your surgeons placing your gastrostomy tube, which is a feeding tube inserted through your abdomen to your stomach. This is how you will eat for a few months; possibly more, possibly less. We aren’t too sure yet of when you’ll pick up on the process of swallowing, but we are taking it one step at a time, just like we have been. You seem to do well at a slow but steady speed, and if that is how this journey plays out, well, we are okay with that.
After placing your G-tube, your team of surgeons will do an operation called a Nissen Fundoplication. This is basically to correct your GERD (Gastroesophogeal Reflux Disease). This is a fancy way of saying “acid reflux.” Many babies have acid reflux, and almost all babies who have had TE Fistulas have acid reflux as well. In your case, your reflux is so bad and so detrimental to your health that the only choice we have is to surgically fix it. Your surgeon has been saying for weeks how she hopes that she would not have to perform this surgery, that medication would help ease your reflux, that this is the last resort. But here we are, and I believe the benefits outweigh the risks. Risks that come with surgery are things that may affect you later on in life; not being able to throw up, burp, or get anything out of your stomach if perhaps you needed to.
Your father and I have been sick for a few days, and haven’t been able to see you, but today we are feeling much better and are so excited to get to you.
We hope we will get to bring you home before Christmas.
I didn’t ask for much this year, just for my families health, for you to come home, and maybe a chance to watch Home Alone 1, 2, and 3 from my own couch with some hot chocolate. If I don’t get the last thing, I’ll be alright. We’ll have many more Christmas’ together to get to that.
Love you, son.