We are about a mile into our marathon... We were told in the beginning not to expect a sprint. "ECMO is a day to day process, sometimes it's one step forward and two steps back to make progress."
She made it through the first three hurdles beautifully (transport from NICU to PICU, the surgery for the cannula tubes being put into her neck, and starting on the ECMO circuit). She continued to show signs of progress the first week (most notably was an issue with her fluid retention that they were able to resolve, so, no more swelling, the 'disappearing' of fluid around her heart, and a treat for us was that she was able to open her eyes). Because Noa was making slow strives towards improvement and the ECMO circuit is so risky to remain on ("borrowed time" they've called it) they decided to "challenge" her by tapering off ECMO. The plan was to decrease the flow of the machine in increments to see how her body reacted. They started at 50% flow and within seconds her pulmonary hypertension spiked and she was put back on 100% flow. This was the first attempt and she'd only been on the circuit for a week, so the outcome wasn't a surprise. I (Justin) arrived back from Spokane with Heidi's Mom (Ann) just after this happened. Noa's room was back to "normal", with just the two nurses there as opposed to 15 or so people attending her. They gave her the rest of Tuesday (the 30th) and Wednesday to rest and recover.
Wednesday (the 31st) we had a Care meeting with all of the specialists (Doctors, Physicians, and Surgeons, our case manager, and others) who've been involved with her Noa's care (and ours) since she arrived. It was a lot of review of our first week (good to hear), plans on going forward, and any an opportunity for questions we might have. The hardest question to ask was the "what if ?" They already had another 'trial' off ECMO planned for Thursday (11-1), and we wondered, what if she still doesn't respond well tomorrow? what if at this time next week (the end of her 2nd week on ECMO) status is the same? A tough realization to accept is that we need to prepare even for the worst outcome.
By Thursday we started following our new routine of going to morning rounds. All the drs that specialize in different aspects of Noa's care (neonatal, pediatric physicians, dialysis, pharmaceutical, heart specialists, surgeons, ECMO specialists) are present. Its a very good time to see and hear about the amazing care that Noa is receiving. It is a huge team effort to help this tiny little baby girl. At Thurs meeting, it was decided that she was doing well enough to try for the second time to turn down ECMO and see how she responded. Heidi, Ann, and the kids ran some errands and planned to be back just before 2pm for the procedure but again, Noa's running the show and she was ready earlier than expected...so the team went with it. This time they started with decreasing the flow to 75% for 5 minutes, 50% for 5 minutes... I was asked to hold her arms and legs close to her body to comfort her (like swaddling) and it really seemed to help her. She was able keep her numbers up (heart pressure, blood pressure, oxygen exchange, and other stats that we don't understand!!), so they decided to clamp off the flow which meant she'd be doing all the work herself. SHE WAS OFF ECMO FOR 22 MINUTES!! Her CO2 started to rise and they brought her back on the circuit. What an amazing experience it was to hold her little body as it took over from the machine. I felt her heart beating and the breaths she was taking through my hands. I was really proud of her, as was the whole team there for her. Heidi made it back just minutes after it was over.
With the success of Thursday's trial it was determined that they'd try again for a third time off ECMO today (Fri the 2nd) at 11am. Her stats from her blood work couldn't have looked better and there was no fluid in her bladder which had been a concern that she had too much since her catheter had worked its way out. This time the cardiologist was there to monitor her heart during the 'turn-down'. Before we knew it, they announced that she'd been at 50% flow for 11 minutes. They decided to clamped the circuit off and see how she was on her own. The Physician and the Cardiologist were back and forth in discussion about her hypertension. But what really pushed them to return Noa to ECMO was when the nurse suctioned her stomach tube and found fluid and fresh blood (often a sign of distress). She was off the ECMO circuit for only 9 minutes this time. A step backward (because she'll need a couple days to recover from it), but not a fail. She's just not ready yet.
So much has happen in the last 10 days, it's felt more like 10 weeks. I know that there's a lot that I've skipped or forgotten to mention, but those thing will be caught up on later when they come back to us. We were without a laptop for the first week and we want to thank Derrick for loaning this to us (via our dear friends the Mills!).
Thank you everyone who has given to us. And thank you for the amazing reports we are hearing of prayers going out for Noa and our family from all over the US and beyond. We are humbled and grateful for the support and love and wish with you the very highest for our precious daughter Noa Grace Rose.