Wow, I can’t believe it’s been 6 months since my last blog entry. So much has gone on in the months that have passed. Ezekiel had his first big open heart surgery in August, discharged home in September, was readmitted to the Pediatric ICU in October (after only being home for 5 weeks), and then had to transfer to Johns Hopkins All Children’s Hospital in Florida for higher level of care in November.
What. A. Crazy. Few. Months!!
We have been here in Florida since the middle of November, where Ezekiel has already had 2 major surgeries. His first surgery was to repair his severe tracheomalacia, which was causing a huge obstruction in his airways. We have no clue how long he’d been struggling with that diagnosis, because the team back in Texas was never able to diagnose anything in their testing. The surgery took over 9 hours, and it was the roughest recovery he has ever had. Being under anesthesia for that long took a huge hit on his body, and it was tricky getting him off of the ventilator and back to his baseline. He was just so touchy, and even almost coded a few times! During those initial post-op days, Chad and I had to choose not to stay with him while he was awake because seeing us made him panic and get agitated every time. It was heartbreaking to not be able to do anything to sooth and comfort our own child!
With how his recovery went in the first airway surgery, we were both nervous to put his poor little body through another big surgery so soon. But his airway needed more work from the frontside, because his trachea was still collapsing and causing obstruction. While his sternum was needing to be opened back up for this second airway surgery, he was also needing a redo heart surgery because the previous repair from August had failed. So in less than a month’s time, Ezekiel went back to the OR for another major surgery that also lasted about 9 hours.
But this recent surgery absolutely blew our minds. God worked through the hands of our phenomenal cardiac surgeon and pediatric surgeon to COMPLETELY FIX & HEAL Ezekiel. He came out of surgery breathing on his own, and literally had the best and fastest recovery we have ever seen. Our strong little champ was on his way back to his normal self within DAYS! It was truly amazing, and I’m still in awe every time I think about how good our God is!
Our little fighter did so well and was totally back to normal soon after his surgery, just in time for his first Christmas. The hospital allowed both parents to be at the bedside for a little while on Christmas Day (thanks, C0VID) and it was the best! We got to open his presents together and took some beautiful family pictures in our matching Christmas pajamas. It really meant a lot to us to be able to celebrate the birth of our Lord Jesus as a complete family, and it truly was a special day for us.
Then fast forward to a week later — God continued to move through our little boy and he was able to completely come off of the CPAP ventilator, and down to 0.5 L of oxygen through the nasal cannula! Praise Jesus; this was the lowest oxygen requirement he’s been on in over 6 months!
It was such a beautiful and meaningful milestone moment, especially since this very miracle had been prophesied over Ezekiel just weeks after he was born. — Crazy story, but someone (we still don’t know who to this day) left a note in Ezekiel’s Bible when he was barely a month old that said: “Prophesy over his lungs and say to them, O lungs, hear the word of the Lord — I will cause breath to enter you, and you shall live. Ezekiel 37.” 😭 God used someone in that NICU to speak His promise over Ezekiel to us, and it truly was wonderful to see it all come full circle and finally come to pass!!
And as if all of the above things weren’t enough favor from the Lord, He also pierced through the hearts of a few people here at the hospital who sympathized with our tough year of missing milestones and arranged a short amount of time for the three of us to be together for Ezekiel’s FIRST BIRTHDAY. We were able to celebrate together as a family, and make memories of this huge milestone in his and our lives!!
All of the staff on our former specialty ICU here at Johns Hopkins also made Ezekiel’s 1st birthday so so special for us. One of his nurses came in on her night off to decorate his room, and quite a few of his nurses, RT, and techs came to visit him in his new room/floor for his birthday — showering him with gifts and oh so much love. I remember being on the phone while Chad was at the bedside, and hearing a parade of his former care team come to see him on the morning of his birthday. It really made my mama heart so happy, and I’m tearing up again as I’m writing about it. It’s so amazing that Ezekiel is loved by so many people, and I’m grateful for the light and joy that God has gifted our son with because I think that’s truly what everyone is drawn to and falls in love with.
Now here we are.. in a new room, on a new unit — he’s finally graduated from intensive/critical care for the first time in his life, and has new nurses, techs, and respiratory therapists who are falling in love with him just the same.
There are still a few things that need weaning and tweaking, but I feel it in my spirit that this over a year long journey of being primarily in the hospital is about to come to an end. And just like it’s the beginning of a new year, I believe that we are also close to the beginning of a new season in our beautiful journey as a family of three + Jesus.
Thank you all for being with us through ALL of the ups and downs this past year. We have really appreciated all of the prayers and support — both spiritually and financially. And most importantly — thank you so much for wholeheartedly following our journey and allowing us to share our milestones, vulnerable moments, and our faithful walk with the Lord with y’all. May this year bring you all so many blessings, infinite love, and an abundance of joy!
Noah’s Ray of Sunshine 