At 36 hours old, Winston was postnatally diagnosed with Hypoplastic left heart syndrome: a congenital heart defect that is characterized by the severe underdevelopment of the left ventricle of the heart. After a traumatic intubation and near complete organ failure, he was rushed to the nearest children’s hospital.
Winston would spend the next 8 days in a medically induced coma before his first open heart surgery, and then another month inpatient recovering prior to being discharged at 5 weeks old. He had his second open-heart surgery at 5 months old, and we were in and out of the hospital several times those first few months.
From the start of life, Winston was NG tube fed. We were told repeatedly that heart kids like Winston just don’t have the stamina to eat enough orally. And as brand new, first time parents thrown into the world of congenital heart defects, what did we know? We love our medical team, and knew that they wanted what was best for us, but no one even talked “tube weaning." In fact, just before we began our wean, our medical team explained, “We are good at putting tubes in kids, but not so much at knowing how to get them out.”
When we came home with Winston at 5 weeks, old he was eating about 20-30% of his feeds orally and the rest was through the NG. Every few weeks, the medical team would increase his intake goal. With each increase in volume came a decrease in oral intake -- and so much vomiting.
OH, the vomiting! 3,4,5 times a day, 30-100 ml at every puke. But Winston needed to gain weight so that his second surgery could be successful, and we followed every feeding instruction given from our medical team to do so.
But as we neared his second surgery, we knew in our gut that Winston just wasn’t hungry and had no skills to eat. We made sure he had his pacifier and did dips of milk to practice sucking, but he was terrified of the sight of the bottle. It made him puke, and he knew it. We bought nearly every bottle under the sun (I call it my bottle library), hoping if we could just find the right bottle that would be our answer, but there was no ‘right bottle.' We just felt lost.
So, we began researching, knowing after his second open-heart surgery, we wanted to wean him from the NG and we needed to get his medical team on board. We vetted every major tube-weaning program out there for months, and we knew that GIE was a perfect fit. Their attitude of family togetherness at meal times, willingness to out reach into the community, and the support and encouragement they showed made us feel safe.
By his second surgery, Winston's oral intake was zero and he was 100% tube dependent. Our medical team started talking GTubes, but we couldn’t bear the thought of ANOTHER surgery and pushed back. For 4 weeks we, along with Becky, Elisabeth, and Olga discussed plans with our medical team and FINALLY got their blessing to begin his tube wean.
On October 1, 2017, at 6.5 months old, we started with GIE. By October 14, we pulled his NG tube, and by October 24 he was confidently eating goal feeds and back up to pre-wean weight!
Olga and Becky were our rocks! When we were scared and feared it wasn’t going to work they were there calling, texting, and emailing to provide us the support and encouragement we needed to get through those hard days. And we did it! We learned our son’s cues, he learned to ask when hungry, and everyone is SO HAPPY (especially since there is no more puking!)
After our very successful wean, our hospital feeding therapist admitted that she was against the tube wean as she thought that we would be wasting a lot of money, with no success. She admitted how wrong she was, and said Winston’s case inspired her to look into changing hospital practices. Now, she is working on developing plans to ensure her promise.
We are beyond thrilled that we hired GIE to help us be tube free. We feel like our baby can just focus on being a baby, and us on being his parents. Olga, Becky, and Elisabeth will always hold a special place in our hearts for helping us achieve our tube free goal.