Today was overall a very good day for Clara and we are celebrating God's faithfulness to us! Her echocardiogram showed today that there is multidirectional shunting across the ductus (fancy talk for we've got the blood in her heart starting to flow in the right direction now!) which indicates that pulmonary pressures are near systemic pressure. Remember when I said we needed her pulmonary pressure (blood pressure in the lungs) to be less than her systemic pressure (normal blood pressure). So far it's been "super-systemic" which means pulmonary pressure was way higher than her systemic pressure. If they're getting closer together, it means that her pulmonary hypertension is improving! So, it was a good echo report.
The doctors thought last night/this morning that she might have some kidney stones because there was some calcium in her urine and yesterday's urine output was so low. A renal ultrasound today revealed completely normal kidney function and no kidney stones! Her chest x-ray looked unchanged. Our only other incident today was a little equipment malfunction. It looked like Clara was spiking a fever and so we were turning down the temp on her blood going through the circuit to try to cool her off. They took cultures to have them checked for infection and started an antibiotic. Her temp looked like it was around 102, but her body felt cool and then her heart rate started dropping pretty rapidly. It turns out that the temp probe had gone bad. Unfortunately, since we'd been cooling her body, her temp had really dropped down to about 90 degrees! Poor baby! We warmed her back up again and are thankful that she likely doesn't have an infection. A few hours later, all her stats were back where they belonged. (It reminded me of a game that Robert plays in the car sometimes where he turns the A/C up as high as it will go until someone can't stand it any longer - "Cool Out" he calls it Clara did not like Cool Out. She was fussy and shivering and so pitiful. We thought it was from a fever and were so sad to realize what had really happened!) I'm just thankful it didn't last long and that we got her happy and warm and comfortable again pretty quickly.
The two drugs that I mentioned last night (milrinone and flolan) were weaned down (this resulted in her systemic blood pressure rising back up to where it was and her pee output starting back up again), but we've left them at low levels while we try to....... TRANSITION OFF OF ECMO!!! This is huge news, but also a big step and a little scary. We will (hopefully) begin this process tomorrow by slowly reducing her "sweep gases" which eliminates CO2 from her body, while increasing her vent settings and allowing her to do more of the lung work herself. This is another "dance" - where we will turn settings down for awhile, then probably have to turn them back up again, give her a rest and then try again a little while later. If it goes well, it could take 3-4 days to have her weaned off all the way. It's like giving her lungs a little chance to exercise and practice before letting her really go on her own. Please be in prayer for this specific process, that our little girl will continue to surprise us all with what a fighter she is and that she'll wow us with her ability to do this work on her own. Dr. Petty has said we've got a good "window of time" here where she seems to be doing well and we want to give this a shot before any further ECMO complications arise or we have to think about changing out the ECMO circuit a second time...
We are so deeply grateful for the past few days of positive steps in the right direction for Clara. We feel like we've got some good momentum going now and want for it to continue. One thing that I'm very excited about is that our nurse today said that once we're off of ECMO and on a regular ventilator, we should be able to hold Clara for the first time. I can't stop thinking about how sweet that will be. Especially today when she was shivering and fussy (silently, of course), I wanted so desperately to pick her up and wrap my arms around her and hold her tight. That desire seems to be getting stronger and stronger every day, so it was a real encouragement to hear that it might be a reality before too much longer. I'm praying that prayer image over and over again right now. I can't wait to hold this precious baby in my arms:
Her night nurse from last night made her that crocheted flower for her hair today. How sweet!!
I love her little fingers and I love her little toes. I love that little button nose, too. But today, I was especially loving on those sweet little lips. They pout and blow spit bubbles and she sticks her little tongue out and I think they're just the sweetest thing around. Someday we'll get those tubes out and that tape gone, but in the meantime, I'll keep loving them just the way they are.
And these are the kinds of things that get me really excited these days: this pee is yellow!! For the last week or so it's been bloody and red and we have never really figured out exactly why, but today for some reason it's yellow again. I'll take it! Plus, her urine output was back up again, so we're back on the diuresis game plan for the time being....
The big things to pray for: continued improvement with pulmonary pressures/heart function, protection from ECMO complications and any further setbacks and successful weaning off of ECMO this week. Of course, we are continuing to praise God for doing immeasurably more than all we ask or imagine in the life of Clara and in our lives too. We have so much to be thankful for, but are especially grateful now for this miracle of healing. May it continue with great momentum.