One year ago today, I received the most devastating phone call from Ezekiel’s neonatologist.
I still remember all the details of the exact day. It was a Monday and I had been placed on call at work, only to be called right back to work on the Oncology Unit. I was already having an “off day” because I arrived to work later than my usual start time, and got a late start to receiving report and meeting my patients. And before I could even start passing out morning meds, it was time for me to go pump at 9:00am. And that’s when the doctor called me.
To give a little history, Ezekiel had just had a major surgery a couple weeks prior to connect his esophagus to his stomach — an anomaly he was born with. And he had been doing absolutely terrible since the surgery. He had to have 3 emergency chest tubes placed at the bedside for recurring pneumothoraxes. Only I was allowed to visit him, and Chad wasn’t allowed at all anymore (thanks for some of the worst memories, COVID). And I had just witnessed him nearly being coded the day before, because he was in respiratory distress EVEN WITH a breathing tube down his throat. It was terrible.
Apparently he had more of these “spells” over night, because his doctor called to tell me that morning that he didn’t do well at all and that he didn’t know how many more times they could bring him back before they couldn’t anymore.
My heart literally dropped into my stomach and out of my rear end, onto the floor. The tears immediately started flowing, and I could hardly even gather myself to relay all of what the doctor said to Chad.
The only option at this point was to have an emergency surgery to try and fix the problem, which no one really even knew what the exact problem was!
By the grace of God, we were both able to leave work soon after that call and rushed to Ezekiel’s hospital to sign consent for surgery. And to this day, we are so so incredibly grateful for our managers and our team for making it work for us to leave so abruptly (because you can’t just leave on a whim, working in a hospital).
When we arrived to the bedside, our son was not our son. He was just a shell of a tiny person, that was completely lifeless. He was having such a hard time breathing that the doctor gave him a hit of rocuronium, to paralyze him so that he wasn’t fighting and struggling anymore. If it weren’t for the breathing tube in this moment, he would be dead.
Hours went by as we waited for Ezekiel to have his surgery — but praise God, they were able to come up with an inventive way to save his life. OUR BABY WAS GIVEN ANOTHER CHANCE TO LIVE!
The weeks following this surgery was a bit rough of a recovery for him, and a total of 2 months went by where he was dependent on the breathing tube and was only being fed IV nutrition. He literally didn’t grow at all in those 2 months and was officially classified under “failure to thrive”.
Fast forward to exactly a year later, and our son is a completely different baby than the one described above. It took several more surgeries, lots more ups and downs, and a huge leap of faith leaving our whole entire lives behind in Texas and bringing him to Florida for more specialized care.
And although Ezekiel is finally thriving, and getting to do more “normal” toddler things.. as normal as we can get, anyway — there’s still a long road ahead for us to walk through together. That is why we have made the official decision to permanently relocate to Florida. Our life in Texas is no more… but I’m sure we will be back eventually. Maybe in a few years. Because no matter where we are, Texas will always be home. Actually, scratch that.. because for me, home will always be where God, Chad, and Ezekiel are ♥️
I’m so grateful for this “new” boy of ours, new opportunities, and this new life. Thank You, Jesus.
Noah’s Ray of Sunshine 