Prayer request

We need prayers for Ronin.

Ronin had been doing really well for the last few weeks; growing to 7 pounds, completely off pain meds, and needing very little oxygen support. The cardiologists were really happy with his growth trajectory and there had been plans to have him come home sometime in September. Although we didn’t want to get our hopes up, over this last weekend Ray and I even set up a crib and rocking chair in anticipation of our baby boy’s homecoming.

But on Sunday evening, I had a call from the hospital letting me know that Ronin’s oxygen levels had started to decline and he’d been switched from a low-flow nasal cannula back to up high-flow. Then over the next few days he went from requiring 1 liter/minute to 2… 3… 4… and by Wednesday, 5.

On Monday they had done another echocardiogram to check on his heart, but the cardiologist was really pleased with Ronin’s stent placement and didn’t notice any troublesome changes. Since Ronin has a congenital heart defect known as double-outlet right ventricle (DORV), any issues with his heart are something they’d want to closely monitor to rule out first. (For more information about Ronin’s heart diagnosis, you can refer to my earlier post, “Life in the hospital: Part 2.”)

On Tuesday, I spoke with a neonatologist who seemed completely baffled with what might have caused the change. She decided to start giving Ronin micro-doses of morphine every 3 hours, thinking that he might be having low blood oxygen sat’s due to restlessness/agitation. So far nothing has necessarily improved in terms of his oxygen support, but other than being a lot sleepier now, he still looks peaceful.

Now Friday, he’s pretty much in the same condition. Still on higher oxygen support, but not necessarily in a critical state. With my limited understanding of what’s been going on in his body, it seems like this must be related to DORV causing oxygen-poor blood to circulate.

The cardiologist’s working plan is to dilate the stent in his pulmonary artery on Wednesday, September 6. When the stent was first placed – when the doctors saved his life back in early July – Ronin weighed a little over 3 pounds. Now that he’s twice as big, his heart needs to circulate more blood throughout his body. If the pulmonary artery were a garden hose, having the stent dilated would widen the hose and improve the rate of flow. Hopefully the procedure will be the only necessary intervention before his major heart repair surgery. Hopefully there isn’t something else going wrong that the doctors aren’t seeing.

I’m praying for Ronin’s body to stay strong, and for the doctors to have the knowledge and wisdom necessary to keep him safe. I’m praying for my family’s peace as we’re going through this marathon of challenges. I’m also praying that the Holy Spirit guides my days ahead. This has been a test of my endurance and perseverance, and I know it’s only by His strength that I’ve been able to keep from giving up. The lessons I’ve learned are invaluable, and this experience has made myself and my family so much stronger in our faith. I just want to stay in the center of God’s will – in His refuge. That’s the only place I’ll be able to continue experiencing His power, His mercy, His protection. And His peace.