Feeding Jack: from bottles to a g-tube. How’d we get there?
Parents, have you ever thought about your baby drinking a bottle as a straight up miracle?
One of the last battles of a NICU stay is bottle feeding. Take bottles, go home! It can be an exciting yet frustrating journey as you watch your baby learn to suck, swallow, and breathe in a coordinated manner and grow big enough to have the stamina to take full volumes. They say that one day it “clicks” and babies don’t look back. You wait for the day — the day it clicks, and they pull that orange feeding tube from your baby’s nose. (Or in Ben’s case, your baby pulls it out himself, declaring he is THROUGH with tube feeds!)
Ben had nearly mastered bottles by the time Jack was big enough and ready enough from a respiratory standpoint to start working on them. The day was SO exciting! He was slow — like PAINFULLY slow, but that was okay, he’d get it. He just needed time.
Shift after shift he’d try a bottle and he’d manage to get decent volumes but it was taking him FOREVER and he never quite got the coordination down. It didn’t make sense why it wasn’t clicking like it had with Ben. Our doctor referred us to Vanderbilt for a swallow study because they became worried about aspiration. Honestly, it all happened really fast.
Jack’s first swallow study showed that when he would bottled feed, milk would pass through his airway instead of going into his esophagus. (Aspiration) Liquid in your lungs is never good. Compound that with the fact that Jack was born long before his lungs had time to mature? AND add on chronic lung disease from time he spend on a ventilator? You have a recipe for disaster.
Jack’s priority is his lungs. Healthy lungs = healthy Jack. The safest way to feed a baby who aspirates is definitely a g-tube. I’ve said it before — do I hate it? Yes. Am I thankful for it? Absolutely.
So when is the g-tube going away? This is a really sensitive question! Believe me, I wish I could tell you it was going to be gone tomorrow or next week or even next month.
The g-tube is not going anywhere anytime soon. Unfortunately, this is not just an issue of Jack learning to take a bottle. He CAN take a bottle. He LOVES bottles! But we have to protect his lungs from being fed. He is currently not allowed to have ANYthing by mouth — nothing passed orally (NPO) — except a pacifier dipped in milk.
He attends speech therapy on a regular basis and we will be working with his therapist to help him overcome his feeding issues and aspiration. The process of weaning off the g-tube will take months, probably years. Things will look different for us — first foods, birthday smash cake — Jack’s journey toward eating won’t look like a typical child’s.
He will have regular swallow studies so that his doctors and therapist can assess his coordination and aspiration and develop a plan for safe eating. For now, we are learning how to keep him interested in eating and allowing his lungs to get strong and healthy. The day he can have a bottle safely or try his first foods will truly feel like a miracle to us, because it will be!