The biggest and most important success is that Clara has been breathing and oxygenating like a champ! Of course, she is still hooked up to the ventilator, which is doing the work of pushing the air in and out, and she is getting 3x the concentration of oxygen that we breathe, but the work of transferring that oxygen to the blood and removing the CO2 is all being done by Clara's lungs. We're so proud of her, and glad to know that she doesn't need ECMO machine. We look at ECMO like a fire engine: glad it was there when we needed it, but we hope never to see it pull up at our door again.
Another big success of the day is that Clara's kidneys seem to be getting back into shape after their less-than-stellar performance yesterday. Yesterday she had little to no urine output, and we were beginning to worry about renal disease/disfunction. When we went in this morning, the nurse was happy to report that she had been peeing out 10-15 mL/hr, a rate she kept up all day. We'd still like to see this amount come up, but for now we're happy to see functioning kidneys.
Those are two great big successes, but we've still got a very long row to hoe. Dr. Turner expressed it very well this morning: "Yesterday we had a very sick girl on ECMO. Today we have a very sick girl who isn't on ECMO." The biggest immediate hurdle Clara has to overcome is the massive buildup of fluid she's acquired in the last week or so. She's incredibly swollen right now, and it looks uncomfortable and it's definitely unflattering. Here's some pictures to give you some idea of how much extra fluid she's carrying around right now.
Here's Clara the day after she was born:
And here she is today:
It's definitely an unflattering picture (of me too); I'm sure one day she'll kick me in the shins for putting it up for the whole world to see, but I wanted to give everyone an idea of just how much we need to get this fluid off. Here's another way of looking at it. Her birth weight was 8lbs, 4oz (3.7KG). Her weight as of today is 16lbs, 5oz (7.4KG). That means that half of her current weight is unwanted fluid.
All this extra fluid is a problem because the more fluid she has in her tissues, the less her lungs are able to expand and fill with air. It's also very uncomfortable to be so swollen, so we're having to keep her more sedated than we might otherwise. And even though it may be a little selfish, it's also a pretty big barrier to us getting to hold her. And even though she's peeing again, she's still getting lots of fluids through her various medicines, blood products, nutrition, and feeds, and at the levels that she's peeing right now, it's not very close to being able to catch up to all the input.
We've had good luck with giving her Lasix in the past few weeks to get fluid off, but the problem we're running into now is that Lasix pulls fluid out of the blood and gets rid of it through urine, but the fluid she's retaining now isn't in her bloodstream, but in her tissues. So giving her Lasix or another diuretic now may still pull fluid out, but then her blood volume drops, and her blood pressure along with it. The body sees low blood pressure/volume and assumes this means that she's dehydrated, so the kidneys slow down and urine output drops, and then we're right back where we started.
We've got a few options to treat this. One is to just try to draw more fluid out of the tissues and into the vasculature (bloodstream) by giving her 25% albumen, which is a blood product that works as a kind of "fluid magnet." It stays in the bloodstream, and hopefully coaxes the fluid that's in the tissues to cross over. We're giving her 3 doses of 25% albumen daily right now. The other thing that we can do is try to un-confuse the kidneys by getting her blood pressure back up, sending them the signal to get going again. So she's on some drugs to keep her blood pressure up, but there's a limit to how aggressive we want to be with that, since getting her blood pressure too high could result in making her pulmonary hypertension revert to the severity that caused her to need ECMO to begin with. And third, getting her moving around can help move the fluid from tissues to vasculature, so we've lowered her morphine dosage a bit so that she can be a little more awake and mobile, and we're also doing some passive range-of-motion with her arms and legs. But again, we don't want to be too aggressive, because if we drop her sedation too much, she could be in pain, which can trigger her PPHN to regress as well.
So there's a lot of opposing forces that are in action here, and we're having to maintain a very delicate balance with all of the variables involved. We hope that the process will become much less delicate as ECMO gets farther and farther behind us and Clara's body parts all start to remember how to work without the mechanical support that it provided. And above all, we hope to see everything progress because of the direct influence of her Creator. We know that God's hand is over every molecule of water in her body, every treatment she receives, and every doctor who treats her. We may have to remind ourselves of it--OFTEN--but we know it to be true, because we've seen it time and time again in these past few days, weeks, and months.
OK, here are some slightly less unflattering pictures of our little lady from today.
Her Mommy, just adoring that chubby little face:
-Fluid to make its way out of Clara's tissues and into her bloodstream, then into her bladder, then out!
-Blood pressure to hold steady in the ideal range (high enough to stimulate kidneys, but not so high as to endanger lung pressures)
-Kidney function to continue to improve and urine output to increase
-Pulmonary Hypertension to continue to lessen and pulmonary pressures to continue to decrease until they are 1/2 to 1/3 of her systemic blood pressure.
-Successful weaning off of medications and ventilator support; getting closer to being able to do everything on her own!
-Clara's medical staff, that their hands, thoughts, decisions, and actions would be guided by the One who can truly heal.
-Chrissy and me, and the rest of our families. We're riding high on her recent successes, but all of our nerves and emotions have made several laps through the ringer at this point, and I can say pretty confidently that we're all pretty emotionally, spiritually, and physically weary, and we've yet got a long way to go.
-Praise and Glory to Clara's Creator and ours, for the blessings and miracles we've already seen and the ones yet to come!
Thanks to all of you who are following our story and experiencing all of this alongside us. We are continually humbled, encouraged, and blessed by each of you. We mean it. For realsies.