Wait for the LORD; be strong and take heart and wait for the Lord. Psalm 27:14
When I got to the hospital, I found out that she'd been capped off for about an hour already! Since that was more than the doctors were expecting, I was delighted. Her blood gases were looking good and she was doing a great job on some higher ventilator settings. Everyone seemed so pleased! I could have done a dance. I expected her next blood gas test to show that she was getting fatigued and would need to go back on the pump and rest again until tomorrow. I would still have considered the day a success. But over the next several hours, her gases just kept improving and we were able to pull back on her ventilator settings. Soon it was two and half hours...four hours...and at five hours it seemed like we weren't slowing down or turning back. As of right now, Clara has been capped off for twelve hours. Her little lungs are doing all the work of oxygenating the blood going through her body. She's doing it! Every time a doctor/resident/therapist/nurse/med student came into the room and picked up her chart, their eyes bugged out and we heard exclamations like, "WOW! Really? This is incredible!" We were practically skipping with joy. This little baby is not to be bound by our expectations. She is full of vigor and determination and today she surprised us all.
We are prayerful that Clara will continue what she's started overnight. Once she's been capped off for 24 hours, we can "decanulate," which means take out those big ECMO catheters and have ECMO behind us. At the end of the day today, the doctors were all discussing and planning for her decanulation tomorrow. The ventilator settings that she's on right now aren't too high, but we would also really love it if they could be lowered a bit more overnight, too. She's getting 50% oxygen right now (we started at 100% this morning) and that is as low as we'll go on that. But the doctors would love to see her be able to oxygenate with lower pressures too, so perhaps we'll get those down some in the next twelve hours. It's always possible that she could putter out and that we'd have to turn the ECMO pump back on. So, please continue to pray that she just keeps truckin' overnight.
I sure am proud of this baby. She has worked so hard today; I really believe that God has given her a fighting spirit, a will to live and the determination to continually exceed our earthly expectations for her. We are surely singing His praises tonight for Clara's big day because we know that it is His work in her. We are thankful for your many prayers, too. Do you see them being answered? Isn't it incredible?
I prayed this morning asking for patience. God answered that prayer in a way that He doesn't usually - he seems to have taken away this wait for now! I know that there will be many other opportunities with Clara in the days and weeks and months ahead where patience will be required, where my timeline is not the same as God's, and where I will have to trust His plan for her instead of my own. I got the message, God. It's in your hands. I'll wait if I have to. But thank you for today.
I didn't take a ton of photos today... she's still super puffy and I didn't change her hairbow (that purple one from yesterday seemed to be working so well, I didn't want to jinx anything!). But I need to give some kudos to another member of the awesome staff at Brenner Children's Hospital who has been really, really good to us. This is Dave, one of the respiratory therapists who helps watch her ECMO machine:
|Dave, working hard (or at least pretending to!)|
Here's Sweet Mama getting a listen in at those good strong lung sounds:
So, thank you Dave for your hard work today. Thank you Clara for showing us all how strong you are and how badly you want this. And most of all, thank you God for your perfect timing, grace and mercy. You're always worth the wait.
Things to pray for:
- Continued success capped off tonight (and reduced pressures if possible).
- Continued diuresis. We are still fighting that battle. Even though Clara had great urine output today, she's getting so many fluids, we just can't seem to get ahead of it. Getting off ECMO will help.
- Successful decanulation tomorrow. It's not as scary as canulation, but is still a big day and a huge hurdle. Pray for Dr. Turner who will be doing the procedure.
- We need to get some more "lines in" (IV access) to Clara. She's been getting all her meds through the ECMO pump, so once she's off of it, we have to get them in another way. She's been so swollen and puffy that nobody has been able to get an IV in her. They're trying again tonight. We really need some access so we can transition smoothly off of ECMO!
- Above all, please offer praise and thanksgiving to our God, with whom all things are possible.