Accepting a G-Tube for our CDH Son
When we walked into our 20-week ultrasound, an abnormality was the furthest thing from my mind. I was focused on watching this new beautiful life kick and yawn and rub his or her eyes - oh yeah, and on finding out if we would be adding another little girl or a brand-new boy to our family of three. I was shocked and delighted to find out our fourth family member would be a boy! We had a gender reveal party for friends and family, I went shopping to embrace my new title of “boy mom,” and I was blissfully unaware of how drastically our lives would change with one phone call.
“All we can tell you is that his stomach appears to be in his chest, and his heart is on the wrong side. We need to refer you to Maternal-Fetal Medicine.”
My heart stopped. The world crashed down. I could hardly breathe. I struggled to get the words out and explain to my coworkers why I would be leaving. I called my husband and had to repeat, “It’s okay, I can do this…hold on… I can say it,” about five times before I choked out the news.
Fast forward about six months, and our amazing, strong warrior Bennett was born. He struggled through pneumonia—barely avoiding ECMO, had his repair surgery about a month old, and had weaned down enough on respiratory support to start attempting oral feeds at about six weeks of age. We had been through the wringer on the worst roller coaster of our lives. Surely this was where the “smooth sailing” portion of the journey came in, right? Unfortunately for us, wrong.
Bennett struggled with feeding, never taking more than 30 mL of his expected 100. We tried nursing for every feeding because he seemed to like that a bit better than the bottle. But bottle or breast, his feeds ended the same way every time, with an abrupt stop and immediate screaming—inconsolable crying. My poor sweet baby had been through so much already from his CDH diagnosis. It wasn’t fair that an act necessary for life, that so many babies find comforting and calming, caused my son so much distress. We tried propping his bed and adding some reflux medicine. We discussed slowing down his wean from pain medicine in case withdrawal symptoms were making it difficult for him. We had a swallow study done to be sure he had a safe swallow and wasn’t aspirating. His OT worked with him daily and said he had the appropriate mechanics for his swallow and was coordinating his suck, swallowing, breathing nicely. We were at a dead standstill with a baby who was miserable while attempting oral feeds and missing out on developmental opportunities because he was confined to a hospital room. It was time to have a care conference and discuss moving forward with a G-Tube.
I’m one stubborn mama—always have been and probably always will be (I’m working on it). I didn’t want this to be how his story went. My mind immediately went to, “It’s not supposed to end this way. I’m supposed to survive this journey in the hospital and bring home a ‘normal’ baby.” I wanted so badly to wrap it all up in a nice little box and shove it to the back corners of my mind. I wanted to bring home a baby who had been all patched up and forget about where we started. I didn’t want this lingering, constant reminder of what we had all been through. I wanted my baby to snuggle up to me and sigh a contented sigh while nursing and rocking in the dark. I craved and NEEDED that time to bond with my son. I felt so violated as if a part of my soul had been forcibly ripped from me. I did my time already! We had to wait so much longer than expected for his repair! We had to wait so much longer than expected to hold him, dress him, and interact with him. We missed out on all of that cuddly newborn phase that’s all about bonding, eating, and sleeping.
But if there’s one thing I’ve learned about parenthood, it’s that it rarely goes according to plan. Each baby is their own unique little human. They do things their own way. I had to put aside what I wanted and do what was best for Bennett, and that was getting him home ASAP. I’m not going to say it didn’t hurt. I had to accept that my perfect scenario wasn’t in the future, and that broke my heart a little. I cried when we left that meeting, the conference where we gave our consent to have our warrior re-intubated, under anesthesia, and under the knife again. I couldn’t visualize what a future looked like, at home, with a child with complex medical needs. And that was terrifying. We would be away from the support of nurses and doctors that we had grown to love and the weight of the responsibility of his care would finally be fully on our shoulders. I felt nauseous for the entirety of the class we took to learn about the pump, bags, extensions, and care of a G-Tube. I wanted to stick my head in the sand like an ostrich. How was this happening to us? This wasn’t my plan!
Special thanks to Abby Braun for contribution content to Accepting a G-Tube for our CDH Son.
Email stories@tinyhero.org to learn about how you can write for Tiny Hero.