The last few days have been a whirlwind. I haven’t had much sleep so the details are a little blurry, but I wanted to keep everyone updated with the latest events and miracles.
Earlier this week: the message
Earlier this week, on my drive home from the hospital in Dallas, I was behind a semi truck that had Philippians 4:6-7 written on the back: “Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
Up until this point, everything with Ronin has been going well in the NICU. But table these words – they’ll be relevant to what transpired over the next 72 hours.
Friday: our special time together
On Friday, June 30, Ronin turned 3 weeks old (36 weeks, 4 days gestation). He was getting oxygen through a high-flow nasal cannula, but only at a low rate that they’d been able to wean down significantly since his first days in the NICU. He had been getting my expressed milk for nutrition via a feeding tube that ran through his nose down to his belly. Preemie babies do not learn how to suck and breathe simultaneously until around 33-34 weeks gestation. To help Ronin learn to associate nursing with a full belly, on Friday I was able to start nuzzling with him. A lactation coach brought me a special pillow and helped Ro and me get comfy. I “fed” him for an hour, and then spent time after with him sleeping on my chest. This time was such a blessing.
But after he was sleeping for a while, his oxygen saturation suddenly took a nosedive from roughly 80% to low 40%. He was looking at me while it happened, and although there was no pain in his expression, I felt like something bad was happening. By chance – or by providence – one of the cardiologists, Dr. Yamada, came to give me an update on Ronin’s latest echocardiogram during this incident. (She is the doctor that gave us the good news after Ronin’s birth that he’d be able to have the life-saving heart repair surgery once he was big enough. She’s also half-Japanese and since my maiden name is Hamada, I feel like we’ve developed a connection since my time in the hospital.) Dr. Yamada and the other NICU nurses assured me that Ronin was fine, and that preemies have oxygen sat drops like this. I left the hospital unaware that things were about to spiral.
As I was driving home, I got a routine call from the neonatologist, but she mentioned that Ronin was on a higher oxygen support than when I had seen him. When I had asked about it, she didn’t seem too concerned, so I felt okay.
Saturday: the downward spiral
However, at 4:40am that next morning, we received a call from the hospital that Ronin had to be intubated and put on a lot of medication to help with his oxygen saturation. A little later that morning I went to the hospital with my mom. There were now big machines in his NICU room helping him breathe. Although I was no longer able to hold him, I could touch him and let him know I was there. He held onto my finger with his little hand while I prayed over him.
Later on Saturday, Ronin was supposed to get another echocardiogram and have a PICC line put in as a more permanent IV. I went home with the intention to return the next morning; but later that afternoon, the neonatologist called to let us know that Ronin was getting sicker and would need to be put into a medical coma to prevent him from moving. We prayed as a family, then Ray and I immediately went back to the hospital. (Keep in mind that each drive in takes about 1 hour, 15 minutes.)
When we arrived to Ronin’s room, there were at least 12 doctors and nurses frantically swarming around my baby. I can’t even tell you exactly what they were doing, but I know we were close to losing our son. Machines were alarming. The lead doctor working on Ronin was swearing. A nurse had to literally run to get stat blood for a transfusion. Dr. Yamada and the neonatologist were giving us information, but Ray and I could only stand outside the room, holding each other. Watching. Waiting. Praying.
Then something changed. I don’t know what part of the intervention worked, but Ronin’s oxygen sats and other vitals got better. The tension left the room, and the doctors started high-fiving each other. Ronin was stabilized.
There were still a lot of moving parts so the next steps weren’t clear, but the team of doctors now had time to discuss options with us. I’m unaware of a lot of how the heart works, but since Ray previously worked in the medical field – and finished up his time in the Navy working in the cardiology department – I leave him to do a lot of the talking to the surgeons. There was a lot of relief when we left the hospital last night. I collapsed into bed when we finally made it home.
Sunday: prayer, gratitude, and peace
At 5:30am this morning (Sunday), we received a call telling us that Ronin’s vitals were fluctuating throughout the night. He was going to be moved from the NICU down to the Cardiovascular Intensive Care Unit (“CICU”) catheterization lab later that morning. Our plan was to get a little more sleep and then head back to the hospital, because nothing at that point was incredibly urgent. But at 9:30am Dr. Yamada called.
Ronin would need to have a stent put into his artery to help with blood flow and oxygenation; but the doctors just discovered that Ronin’s heart physiology would make the stent placement nearly impossible. If they tried to put it in and tore his artery, it would be fatal. If they didn’t attempt the procedure, Ronin could be taken back to the NICU and we’d be able to spend time with him… but he wouldn’t survive very long.
I’m so thankful that Ray told the doctors to try placing the stent. Honestly, I don’t know how I’d respond if I had to answer by myself. I had just watched his little body go through so much already. I didn’t know if my heart could bear him going through more just to have it fail. I want Ronin to live a long life, but I also don’t want my desires to go against God’s will – and sometimes it’s hard to know which is which.
This is where Philippians 4:6-7 comes in.
We prayed together. We asked our family and friends to pray. I thanked Him for the time he allowed me to spend holding and comforting Ronin earlier this week. I thanked Him for giving me new eyes to see more about my role as a mother. I thanked Him for growing my faith and intimacy with Jesus. I asked Him to be with my son and guide the doctors so that he would survive; but I also trusted that if this would be Ronin’s time to go to heaven, I’d still praise the Lord.
The phone rang when we were about halfway to the hospital. Ray put it on speakerphone. It was the lead cardiac catheter doctor calling to tell us that THE PROCEDURE WAS SUCCESSFUL! They were able to place a stent in a good position and Ronin’s oxygen sats were already back up. She didn’t say it herself, but later the other doctors and nurses told us it was basically a miracle that it worked. When Ray got off the phone, I couldn’t do anything but thank God over and over and over. Praise be to God.
Ronin will need a lot of time to recover from the procedure. He may stay in the CICU for the remainder of his time at the hospital, but we’ll see as things advance. As always, we can only take things one day at a time – just praying and praising.
Thank you to anyone reading this that has been praying for Ronin and our family during this difficult time. Please keep it up, God has been listening. We know He is using all of this to His glory.