November 7th: Eye of the Tiger

I got to see Ava open an eye today, just one, briefly. She can't, yet, open the left because of swelling. Her head ultrasounds are showing no signs of brain bleeds, which is a huge risk with ECMO, so that's good. There's potential damage from swelling on the brain, but we already knew that. It is encouraging that she moves her right hand and arm, her mouth, and her feet a little. 

Since ECMO two and half liters of fluid have been put into Ava's little body. Think of a two liter bottle of soda and then some. This was done to help maintain her blood pressure. The fluid would help for a while, then her body would dump it into the tissues (called third-spacing) and then she would need more fluid in her blood. The goal today was to pull some of this fluid. The reason being that the ECMO circuit, the tubing and filters have to be changed out after about 5-7 days of usage because of little clots that form in the system. To do this the baby will be off ECMO for 3-5 minutes..scary because this is the machine that is acting like her heart and lungs. So, the idea is that we need to pull as much fluid off her body, hopefully her lungs, before the circuit needs to be changed. This way, maybe the lungs and ventilator will be able to deliver even a little bit of oxygen during the switch over.  The day shift was able to pull off 600mL and the night shift goal is the other 400. Her blood pressure will tell if she can handle this. People can now hear teeny tiny breath sounds in both sides of her lungs. The swelling looks better even with the 600 pulled off, better enough that I finally feel comfortable posting a picture. The nurse hid the left side of her head because that is where most of the swelling is, because she has to lay on that side of her head. 

Ava's kidneys are still not working and the liver labs were a little worse today. Hopefully they are better tomorrow. If her kidneys don't kick on after ECMO she may get some dialysis. The nephrologist was consulted today to help balance the amount of fluid pulled off, with the levels of electrolytes in her body, particularly sodium, so they are watching that lab value very closely. Her lactate is trending downward, slowly but surely. 

They switched her sedation drugs to things she is used to, so she was switched from fentanyl and versed to morphine and ativan. We always knew she liked her ativan, and that helped her blood pressure right away. Sometimes a higher blood pressure for her means that she has some pain and agitation. 

Every day we deal with specialists, attendings, fellows, chief residents, medical students, nurses, nursing students, charge nurse, CNAs, and ECMO charge nurse. Then on top of these folks we get doctors and nurses visiting from the NICU because they all fell in love with her up there. We also get doctors and nurses visiting that have worked with her the last few days. The staff is all amazing. Her nurse today was her flight nurse Sunday night. One doctor that was checking on her today had her Monday night and had ordered the Peritoneal dialysis drain to be placed by surgery to help drain fluid out of her abdomen. She told me that the surgeon was very pessimistic, acting as if there was no purpose in placing this drain for a baby who wasn't going to make it. The doctor today was happy that Ava has showed up this surgeon. I overheard the PICU fellow today say "Well since she is an incredible freaking baby why don't we try XYZ (some order involving pulling off more fluid)." That was nice to hear. 

We've made a lot baby steps forward today. Her body is better perfused (taking up oxygen). They are able to get a pulse in the leg with the giant ECMO cannula in it, whereas yesterday they couldn't. We are soo thankful for a lot of things today. Ava is still very critical and we still don't know what kind of organ damage has been done, and we still have a lot of risks every single day we are on ECMO, but as the doctor said the other day..every day where things aren't worse is considered a win. So today was a "win"

Of course we know that every win is 100% grace. We live because God allows it. I just hope that Ava's story is a testament of grace and mercy and a display of God's power through miracles. A lot of doctors, actually most of them, thought and acted as if there was a 0% chance of survival and all of these interventions were to appease the parents. Ava has already shown that God trumps statistics, among other things. My over-analytical mind keeps wanting to know a survival statistic to dictate how I should feel, but now I know that it doesn't matter because God is in control regardless of scientific research or how others have done on ECMO in the past. I know that you have to reach rock bottom to really feel complete reliance on and trust in God. I believe in prayer and I believe that prayer reflects the internalization of this reliance. 

Dear God; we praise you in the storm. This is an awful, horrible place to be, Lord, but we know that you are in control.