Actually, the doctors told us there’d be days like this. But that doesn’t mean we liked it any better.
Last night was a great night. They were able to get her oxygen levels on the ventilator down to 40% from 70% and her numbers all tolerated that really well. She rested well and was stable this morning with more good numbers. Then, between 10AM and 11AM several things happened. She had vomited some last night so they changed her sheets which is always a little tricky. They also changed her OG tube (the one that goes down her mouth and into her stomach) to a bigger tube that might be able to suction out her stomach acid better so that vomiting won’t continue. She was started on a “test dose” of Lasix – the diuretic that’s supposed to pull off some fluids and help her swelling go down. And she had her first bowel movement (that’s actually a really good thing…. It was one of the “to-do” items before she can begin to be fed through a feeding tube). After all that, her O2 stats started dropping. There are two numbers and we’d like to see them above 85, preferably in the mid-90s. Between 11:00-12:30 they dropped from the mid-90s to 80s and 70s. Her heart rate also elevated from 120s to 160s. Long story short, we watched those two O2 numbers continue to drop throughout the afternoon, ending up as low as the 50s and 60s. There were lots of different theories about what could possibly be causing that including: agitation from all the action in the morning, not enough blood volume from too much diuretic, shifted position of the cannulas (her ECMO catheters), or possible infection. The doctors and nurses tried several different interventions to little avail and Clara just started getting worse. Not only were her numbers dropping, but she was starting to look a little gray and just didn’t appear to be feeling very peaceful. After several hours of guess and check that didn’t work, finally the ECMO Fellow came in on call and adjusted her cannulas which seemed to fix the O2 stat issue as well as decrease her heart rate. They also called the cardiologist in to do an echocardiogram and determine if there was a heart complication. The good news about her heart is that the function still appears to be okay. However, it did appear that her left ventricle was a little underfilled and her pulmonary pressure had really spiked (it was 85 on Friday and 105 today – the ideal goal is to have it between 30-40). Since we must address the issue of pulmonary hypertension and it doesn’t seem to be getting any better on its own, they started on her nitric oxide through her ventilator. Nitric oxide should work by relaxing the pulmonary artery and bringing that pressure down. However, since she has low tidal volumes on the ventilator, it may not work. We won’t know until the echocardiogram is repeated tomorrow. If it is not working, they will try an IV medication instead. The problem with an IV medication is that it will reduce all blood pressure – both her pulmonary pressure and her systemic pressure, and we don’t really want to see her systemic pressure drop.
The hardest part of today for me was not just all this medical talk or the inability to figure out what was causing the problem or even sitting and watching her numbers continue to drop on the monitor when we knew they needed to go in the other direction. The hardest part of today was watching my daughter in distress. This morning when her stats first started to drop she had several silent “cries.” Her face twisted up just like a screaming baby and her eyes squinted, but no sound came out. I know that babies are supposed to cry, but they’re supposed to cry because they need a clean diaper or to be held or to be fed. I had no idea why Clara was crying and there wasn’t anything in the world that I could do to help her. I wanted more than anything to sweep her up in my arms and hold her and rock her and kiss her head, but of course I couldn’t do that either. I just had to watch her silently scream and not be able to do anything to fix it. It was really heartbreaking. It was the first time since she’s been born that I’ve truly felt like I was not giving her something I was supposed to be able to give her; that I experienced the pain a parent feels when her child suffers. It’s terrible. And I couldn’t stop thinking about how God feels that way about us, too. How much it hurts him to see us suffer. That even as I was feeling pain watching Clara, God was also feeling pain to watch me. A parent’s love is truly a powerful thing. I’ve heard people say that their understanding of “Fatherly love” changes once they become a parent themselves and today I felt that for the first time. I feel like I love Clara so much, but I know it doesn’t hold a candle to how much God loves us – me and Clara and all the rest of us too. That’s a lot of love.
As of this evening, Clara is stable again. Her O2 levels are back where they’re supposed to be in the upper-80s to mid-90s. Her heart rate is back down to the 120s and she’s pink again. She’s resting peacefully and not gagging on her tubes or hiccupping or crying. She even had her eyes open some this evening and was looking around. We’re thankful to once again be on the other side of a rocky day, but know that today also presented new problems and issues. Please continue to be in prayer for her. Pray that her pulmonary hypertension will begin improving and quickly. Pray that the nitric oxide would work tonight and that the IV medication will not be necessary. Pray that her O2 stats and heart rate would stay stabilized throughout the night and that she would rest peacefully. Pray that the cultures that were taken today will reveal that she is infection-free. Pray that her ECMO cannulas stay in place and do not cause her any more distress. Pray that she would be able to pull off some of this fluid without it sending all her other systems into shutdown like today. As always, continue to pray for the large team of doctors and staff who are in charge of her care and who are responsible for making decisions about her treatment. Pray that all her family, parents and grandparents alike, would get the emotional and physical rest that we need to continue standing by her as she fights. And please continue to thank and praise our God for his faithfulness to us during this time.
I found myself today thinking about the story of Jesus calming the storm in the sea of Galilee. (Matthew 8:23-27, Mark 4: 35-40, Luke 8:22-25). A big storm comes up and the disciples freak out and wake Jesus up and then he rebukes them saying, “You of little faith, why are you so afraid?” and then he calms the storm and the disciples are all amazed and shocked and impressed with his power. Today I was like one of his disciples – scared and panicked and hating to be out of control. I want to be reminded that we will continue to go through some storms with Clara and that I must trust the One who can calm them. It’s not an easy lesson to remember….
Thank you all for continuing on this boat ride with us, for weathering the storms and for praying us through it. Thank you for sharing our requests with others who are willing to join us in prayer and surround Clara with the Holy Spirit who loves her even more than Robert and I do. And thank you for loving us, especially on days like this.