I apologize for the vulgar title but there's absolutely no other way to describe our day. We experienced the NICU roller coaster last week and today we expericed it going 500. We went into the evening feeling so good about how the surgery went and how her lungs were looking. Then we received the dreaded phone call from our nurse around 7:30 this morning. They needed to open Kambry back up because it appeared she was bleeding in her abdomen. They believed it was causing so much pressure that it pushed up on her diaphragm and caused her to lose volume in her lungs. We cruised over to the hospital so we could be here before she went back into surgery. Again, we waited and waited and the surgeon finally came out to the waiting room. They couldn't find much bleeding in her abdomen. The bleeding was coming from above the patch and filling up the space where her lung should be. They inserted a tube into her chest that drains any blood and fluid from that area. They are closely monitoring this to make sure the bleeding isn't increasing. This is where it gets complicated. The ECMO machine requires her to be on blood thinners so they don't get clots in the machine. Anytime she has surgery they have to turn off her blood thinners. So after her 2 surgeries, the machine has started to get a few clots. One was in the cannula right by where it enters her body. It was too large to go through but they were worried it would block the flow. So the decision had to be made to either get a whole new ECMO machine hooked up, or vacuum out the clots in the tube. The doctor decided to just vacuum the clots in hopes that we can get her off ECMO before more clots get in the way. Ideally, she could come off tomorrow. But again, expect the unexpected. Right now they are aggressively trying to open her lungs so the can repeat the test to wean her off ECMO. She's getting several x-rays to watch her lungs and once they look like they have enough volume, they will do the test. The doctor said once the window is open, they'll remove the ECMO right away regardless of the time of day. This would be huge so they could stop the blood thinners and the risk of bleeding should go away.
I'm doing my best to stay strong and be a glass half full, rainbows and butterflies type gal but I'm not going to lie - today I had some low moments. I can't even begin to describe how hard it is to see your baby go through so much. I prayed a lot. And read messages and blog posts to keep me going. So thank you everyone for all of your encouragement! You may not be physically with me but you're here in spirit and helped me get through this rough day. And to Lon, for being an amazingly supportive husband who is always there to catch me if I fall. I couldn't ask for a better teammate for life. And to the nurses and staff at the hospital. I wish you could meet them all. Ah-ma-zing! While I'm so excited to get Kambry off ECMO, I'm going to be so sad to see her ECMO nurses go.
The Bible verses we read today dealt with perseverance.
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
We are ending the evening on a better note. Kambry is stable and we are waiting for her next X-ray. Hoping to see some good improvement in her lung volume! And ready to face another day.
Love to you all,