In the spring of 2015, we welcomed our third child — a beautiful baby girl — into our world. She was born at 35 weeks and though she had a brief NICU stay, we thought we had dodged a bullet. She came home from the NICU with no medical accessories. Just our sweet baby girl.
As time went on, it became clear the medical support we had been so happy to leave behind in the NICU was becoming more and more needed at home. Her weight plummeted and her length and height didn’t advance.
At 16 months she was given an NG (nasogastric) tube and we were hopeful that she would grow — maybe even catch up. We patiently waited four months with the NG-tube until our GI nudged us gently towards a G-tube (gastrostomy tube). We couldn’t disagree. This wasn’t working. She received her G-tube in June of 2017.
Our world gained a whole new vocabulary. From converting ounces to milliliters, hang times (how long formula is good hanging unrefrigerated), to weights and gains of my daughter herself. We slowly built a stockpile of medical supplies and our home looked more like a pharmacy than a cozy two bedroom.
My husband and I learned along the way and leaned on some very special friends who had been where we were headed. We became experts in our daughter’s care. We took on the role of caretaker and physician/nurse. We researched and read every medical journal and blog article on her care and diagnosis.
Siblings Show the Way
The constant in all this was her two amazing brothers. They were six and eight when she was born, and they were used to being their own duo. I thought for sure having a sibling would be difficult. We were pleasantly surprised.
They loved her from the start. Their sweet baby sister.
They were curious about her tube in her nose. We all were. But they loved her just the same. Where we saw a beautiful face marked with tape and rash from the adhesive, they saw her smiling eyes and contagious giggle. Their funny baby sister.
When we grieved over the decision to put in the G-tube, they saw her gaining milestones and having more energy. They were excited to teach her new words and help her learn to walk. Their brilliant baby sister.
A bond has been formed between them. The protective older brother cliché plus. They look out for her and make sure she is safe, but they also teach her to stretch her boundaries and take risks. Their brave baby sister.
As I sit near the playground, my husband tries to stand back and let her choose her own path up the play structure with no interventions, despite his anxiety building. Her brothers show her the best way to maneuver through the tubes and down the slide with her backpack on, backwards. Their fun baby sister.
They balance us and they complete her. She’s so lucky to have siblings who see her as their sister first. Sweet, funny, brilliant, brave, and fun. A tubie second. We all need more of that. They’re teaching us every day.