GI, Jackson

Hard, But Good Decisions

Every parent is faced with difficult decisions around our children. In the moment it can feel overwhelming, but looking back you realize although it was hard it ended up being a sound decision.

In Jack’s first year of life we were faced with two such decisions. Although they were almost eight years ago I can remember them like they were yesterday.

Jack NG tubeThe first decision was putting in his feeding tube. We had struggled with bottle feeding him for four months, working with therapists and trying everything from different bottles to different formula and feeding techniques. For him, eating hurt so much that he would take a little bit and then stop. At four and half months old he was still only eating the same amount as he did as a newborn. After many conversations with our pediatrician we decided to put in the NG tube.

We were worried that not only was he falling off of his growth curve, but he may not be getting enough fluid to stay hydrated. She explained the process and that this would buy us some time, taking pressure off of us trying to feed him and him trying to eat. Even though the thought of sticking a tube up your child’s nose (yes, I had to do this) was horrifying, we knew it was the right decision.

After the tube went in, Jack’s personality blossomed. The pressure was off of him and he didn’t hurt anymore. We were able to enjoy him and not worry constantly about how much he was eating.

Eight months later we were faced with another difficult decision, moving from an NG tube to a surgically implanted G-tube. This forced us to realize that he was going to be tube fed for years, not months. We had tried many times over those eight months to get him to eat on his own, but the memories of the pain were still so great that he would try briefly only to stop again.

PEG tube.jpgThe NG tube also had become a hindrance for him. He was crawling and starting to play with other children. The tube was a point of interest on his face and children would grab at it. He was also vomiting several times a day due to the tube in his throat. We also were tired of the stares that we would get from people when out in public.

The night before his surgery I took a photo of his clear tummy, knowing that it would never be the same. He would either have a tube sticking out of his stomach or a scar where the tube was. We knew it was the right decision, but it is always hard to admit your child into surgery.

After the surgery, we got his amazing cheeks back (no more NG tube taped to his face) and his personality continued to bloom. In doing so, we bought ourselves more time to kick-start his eating while doing it on his and our terms. Jack has been eating on his own for years and after removing the G-tube, never looked back.

Looking back these were extremely hard times, but we know we made the correct decisions for our family and our child.

When have you been faced with a difficult decision?

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  1. Paul Charkiewicz says:

    Wow, those pictures! What a flashback!

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