At 14 weeks we found out that there was too much fluid in my tummy and that my baby had Down Syndrome. When the fluid suddenly started draining, the doctors decided to take the baby out at 31 weeks. It started out as a routine c-section but became a life-threatening procedure.
After our boy, Beck, was born, there were 3 ambulance rides, 2 different hospitals NICUS, 2 surgeries, and 93 days in the NICU. We were trying to balance raising a toddler at home while also taking care of Beck an hour away. Beck had a bowel disease that the doctors were only able to fix once he becomes older.
When Beck was able to come home, he was on oxygen, had a g-tube (feeding tube on his tummy) and a Colostomy bag. Before the surgery, Beck’s life was filled with physical therapy, speech therapy, doctor appointments, and phone calls to pharmacies. When the day of the surgery came, everything thankfully went as planned.
He has since done well developmentally with eating and moving. Most of his nutrition comes from eating baby food instead of a bottle but is slowly learning how to drink through a straw. People say that life with a Downs child is no different than life with a “normal” child. However, “normal” children don’t have physical therapy every other week. They don’t have 5 specialist doctors that they must see every 3 months. They don’t require medication that causes you to be on hold for 45 minutes with a specialty pharmacy to get a refill every month. Life is very different with Beck, but that’s ok. He brings a whole new level of bravery, joyfulness, and patience into our home which is something special. Although we have many more hills to climb, we have learned that if we do them together, we will and can make it.
No two journeys are alike, but the goal is the same: to grow and support the ones we love. Here’s to the families that had a couple of extra steps along the way. Outstanding support deserves recognition. #bebefitgotyourback
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