**Disclaimer: Photos posted within this blog show the reality of child hospitalization. A few photos may be disturbing.
A birth defect that 1 in every 4000 babies is born with. From there, there are at least 6 different types.
As many of my readers know, our oldest son was born with this condition. He was born with (thankfully) an easier type. His type didn’t fit the mold of the 6 most common but was most similar to type A. Normally this is found via ultrasound but because of the unique way our son’s esophagus developed, all appeared normal. We were blindsided.
I’ve mentioned in several posts that we had minimal time with our son before he was transferred to Children’s Hospital of WI and he was to have surgery when he was only 3 days old. We were specifically discharged a day earlier because of this small detail.
Tuesday, March 31st was the surgery date. I was an absolute mess. We got to the Milwaukee at about 10am after getting home late the night before. We weren’t yet in a room at the Ronald McDonald House but would be the next day going forward. We walked him to the OR at about 1pm and we wouldn’t see him again until 11pm that same night.
I couldn’t even tell you my state of mind for those 10 hours but I can assure you that despite healing from a cesarean, I was pacing. I was anxious and I certainly was feeling deflated as time wore on, even with the occasional update.
We were warned of the risks and all the possibilities of set backs. That’s normal for any surgery. The only thing is, we didn’t think we’d fall into that category…
Five days later would prove to be the worst of our entire stay.
Joseph had made the comment he wasn’t breathing right Saturday night as we were readying to leave for the night. I had just finished reading a story to our little man and after being assured by staff, we gave our kisses and left. I stayed at the RM house but Joseph decided to make a trip home to go through our mail and whatnot and just check things out at the farm.
As fate would have it, the nurse woke me up at 3am. She wouldn’t say much but she did say it was imperative I come at once.
Peter’s lung had collapsed. They ran X-rays as I watched helplessly as he cried out. An emergency bedside procedure was done to place a chest tube to drain the fluid leaking from the surgery site into the chest cavity. He was then placed on another antibiotic to prevent infection.
Joseph returned later Sunday…and that night the fluid became too much and P stopped breathing. I remember how disturbing the alarm was as his vitals dropped on the monitor. Nurses poured in and had to perform CPR with a balloon to try to open his lungs. They attempted a new chest tube at bedside, slightly larger then the first, but by Tuesday, one week since his first surgery, our little boy was back in the OR.
The surgery started with the intention of sealing the esophageal leak, but the tissue was too inflamed and any tampering would rip through the tissue and make the leak worse.
So, another chest tube was placed in addition to the one placed at bedside. Only, it was an adult sized tube, sandwiched between two ribs, and it caused immense pain for our little guy. We didn’t hold him, didn’t move him, touched him very little. Lot of tears were shed and a lot of morphine kept him sedated most of the time but it didn’t make our job any easier.
It eventually started looking up and tubes started to vanish as he no longer needed them. There was only one more challenge left.
Mastering his NJ tube/pump system. Peter had his first “meal” at 19 days old. Hard to believe he felt like he was starving for that long, heartbreaking even. But this was the final step.
We were discharged 6 days after that first feed and though our road to recovery was no where near finished, this was the roughest stretch.
All in all, going into this we had NO idea what TEF was, but after our experience, I can tell you that it should be a requirement to spend some time in a NICU prior to becoming parents. Not only is it an eye opening experience, but there is so much we take for granted. I know I will no longer take health for granted. When we fell pregnant with our second child that is all I preached. “As long as baby is healthy…”
I could care less if baby was a boy or girl, so long as it was healthy.
I could care less if my vbac didn’t go as planned, so long as we both came out happy and healthy.
It didn’t matter the topic. I only wanted a healthy baby. And we got a healthy baby boy to join big brother P and us.
A year and a half later you’d never guess our ordeal, or that P was even a sliver less than 110% healthy. His scars serve as a reminder of our pained beginnings but they in no way define our future.