Light At The End Of The Tunnel

Ezekiel has been in the NICU for over 4 months now. He had been doing so well over the last few weeks, and we were finally seeing the light at the end of the tunnel of our NICU journey!

This past Tuesday night, we were set to room in with our little guy. — Rooming in at the NICU is basically a “trial run” of spending the night with our soon-to-be NICU graduate, to see if we can manage all of the equipment and any medical needs he is going home with. — The night started off really good.. Ezekiel was so calm and chill, and we both though it was going to be a great night and that we would be able to finally bring our little boy home the next day.

Well, we thought wrong. He became extremely fussy in the middle of the night. Not normal baby fussy, but like a really concerning type of fussy. He wouldn’t settle down for almost 5 hours straight. His body was flailing from pain the whole time, he cried until he was exhausted and his eyes were rolling into the back of his head, and his oxygen levels kept dropping extremely low. He even became mottled towards the end because he wasn’t oxygenating well anymore, and this was very dangerous — especially since his lungs are still premature and of course, he has his heart issues.

Nothing we did for him worked. We switched off throughout the night, tried various positions and techniques, and nothing calmed him down. We finally had to bring him back to the bedside in the NICU, where the overnight neonatologist ran some labs & tests, and gave him sedation so he could finally fall asleep and normalize his breathing and heart function again.

Ezekiel had “failed” our rooming in trial. ☹️ Discharge was obviously cancelled for Wednesday morning, and Ezekiel’s doctor went back to the drawing board to try and figure out what exactly was causing all of this and what we should do about it.

I don’t think we ever went into specifics about ALL of Ezekiel’s medical problems, and I still don’t feel prompted to go into detail about it now. But his congenital anatomy basically was causing him severe reflux that lead to a lot of pain/discomfort, and he wasn’t tolerating the bolus feedings or any of the formulas that we tried using to fortify my breastmilk for extra calories. And due to all of the stress that’s been put on his body for a little over a week now, he has had a steady decline in his lung and heart function.

Some changes have been made over the last few days, even more were made last night.. and now we are back in the waiting period to find out exactly what’s going on with our little boy, to see how well he tolerates the changes that were made, and to allow his body some time to adjust to everything & stabilize before we even TRY to bring him home again.

I’m sure many of you are disappointed that we didn’t get to bring him home this week, and I have to admit I was a little disappointed & defeated at first too. But then I quickly snapped out of it, and instead thanked God for allowing this to happen while Ezekiel was still in the hospital. With how bad he acted and looked the night we roomed in and how unpredictable he’s been over the last few days, we definitely would have brought him straight back to the ER had we been at home already.

Today is my first real Mother’s Day, and I thought that my baby would be home by now. I thought that I’d be waking up with him next to me in the bassinet, and that his daddy and I would be able to snuggle and love on him in bed this morning. But Ezekiel needed more time in the NICU. God wasn’t finished with him yet, and although it’s hard — I know that trusting and patiently waiting for God is always worth it.

We almost never know what God has planned, or why His timing is the way it is. But I trust Him fully and entirely that He will never allow anything to happen without working it all out for our good. God loves us so much, and we are so grateful that He stopped the discharge because clearly Ezekiel wasn’t ready yet.

Ezekiel still hasn’t gone back to his normal self, and there are quite a few “unknowns” that we are dealing with, so we have no idea when he will be ready for discharge at this point. And it’s just like what my husband wrote in his Instagram post earlier in the week — we don’t know when he is coming home… but when he does, we won’t be sharing it right away. We have gone through so much with this kid and with pregnancies in general. We have never experienced bringing a baby home, ever. Our sweet Noah went to heaven before he was even born into this world, and Ezekiel came kicking and screaming but has been fighting for his life and has had to overcome many obstacles in the NICU since December. So we deserve to enjoy every single moment of Ezekiel’s much anticipated homecoming, and love on him and each other — privately, as a family — when that time comes.

We thank all of y’all for your constant prayers for Ezekiel and for our family. God has truly been faithful to us, and has brought us through A LOT these last few months/years. Without Him, I’m not so sure we would have been able to endure any of it. ♥️

The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid, do not be discouraged.
— Deuteronomy 31:8 NIV

The Lord is my strength and my shield; my heart trusts in Him, and He helps me. My heart leaps for joy, and with my song I praise Him.
— Psalms 28:7 NIV

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