Hudson was born with Hypoplastic Left Heart Syndrome and spent more than 176 days inpatient. Now home with his family, Hudson’s first Christmas is sure to be extra special. Read about his battle with HLHS and how beauty can be found even in terrible circumstances.
Hudson was 9 days old when he was diagnosed with Hypoplastic Left Heart Syndrome.
When he was born, he was sent to the NICU due to respiratory distress, and when he started refusing feeds, the doctors ordered an echo. That’s when they determined Hudson had a heart defect.
It was like a bad dream. They rushed him to the Shawn Jenkins Children’s hospital, where I was told surgery would be my 6lb baby’s only chance of survival. Hudson went to the OR for the Norwood procedure at 11 days old. I remember his surgeon telling me he was unstable, but they were still hopeful. Hudson’s urine output started to taper off which caused him to be fluid overloaded, 2 days later he would need ECMO (a form of life support)
Hudson was on ECMO for 4 days before he was finally stable! Soon after he was extubated and making good progress toward the stepdown unit. Things started to slow down, but we had difficulty working on feeds. His team decided to place a G Tube. All I could think was, “Please, not another thing.” They say it’s a small procedure, but when it’s your baby, it feels like the weight of the world.
After a brief discharge, his team decided it would be best if he remained inpatient until his 2nd surgery. At 6 months old Hudson had the Glenn operation. I was always told this surgery, for the most part, went pretty smooth. However, Hudson had other plans. He stayed intubated for quite some time, and when they tried to extubate they lost his pulse. I stood backed into a corner while I watched a team of people resuscitate my sweet boy. Fifteen years from now, it will still break my heart to talk about it.
A few days later we tried again, and Hudson was successfully extubated.
After 176 days we were finally discharged. That was 176 day of my family being torn apart and Hudson not being able to grow alongside his siblings. The PCICU & step-down unit had seen many of my tears and breakdowns, but, ultimately, I had to stand tall and be his best advocate. I had to be everything Hudson needed. Hudson had to be strong too. He fought hard for 9 days to stay alive, it was a race against time! I now understand how much of a miracle he truly is.
I also now understand how nurses become your family, how big and resilient the CHD community is, and that I wouldn’t know half the things I do without both teaching and guiding me along the way.
What are we up to now!?
Hudson is 8 months old and we have been discharged for 2 months! It’s so surreal, his team didn’t know if he’d make it, and now we’re about to celebrate his first Christmas! He’s weighing in at 18lbs and gaining good weight! Hudson loves his brothers and sister so much, and since leaving the hospital his social and motor skills have blossomed. Hudson’s favorite thing to do is eat his feet and smile!
Life with Hudson is beautiful! While it comes with challenges, I wouldn’t change anything about him. A very special boy, with a special heart,he fits into our family perfectly!
Hudson has taught me to see the brighter side of things, if he can smile after all he’s been through then so can I! In the future, I have hope that Hudson will continue to beat the odds and hope he helps other CHD patients by sharing his story. I’ll be there to cheer him on the whole way!