I choose hope. You really have to pick one. That isn't to say that my mind doesn't wander, mostly because I am trained to be prepared for every road. Then I feel guilty for doubting the power of my Lord. Today was another gift. Every day we are allowed to live is a blessing.
Today Ava was, uhhh, alive. That is really all I can say with certainty. I really stay away from the word "stable" at this point because it doesn't seem to be accurate. It doesn't seem any baby on ECMO can be considered stable.
ECMO has taken over Ava's circulatory and pulmonary system, basically buying her time to come out of septic shock. Let me explain some of what we are dealing with. Each item is a hurdle requiring God's grace. Ava got some type of infection, either bacterial or viral-we don't know. Thankfully, if bacterial, it is no longer in her system because bacteria love to adhere to plastic parts in the ecmo machine and tubing and essentially keep reinfecting the patient. The infection reached her blood. This is called sepsis-very bad. Sepsis can kill you, even an adult in as little as 6 hours. Ava's infection caused her to go into septic shock. The dynamics of her body changed. The big problem is that her blood vessels are very leaky. All the fluid just leaks right out making her very VERY swollen. She is unrecognizable. The shock also has the potential to affect other organs. During shock the body takes the available oxygen to the most critical places first, the heart and brain. The rest of the organs can have some degree of cell death from not getting as much oxygen. Ava's liver is not working right now. Her kidneys are working a tiny tiny bit. We don't know what kind of damage could have been done to the intestines.
So what needs to happen is that Ava needs to start coming out of shock. Her blood vessels need to start clamping up and holding onto fluid so her body can get rid of it. The lungs are completely unusable at this point. The blood vessels, when working again, will "pull" fluid off the lungs as it goes from a higher concentrated area (the lungs) to a lower concentrated area (the blood vessels). Think about a dry towel on the edge of the sink and how, if one corner is touching a puddle, the towel will pull all the fluid into the towel over time. Obviously the lungs need to be usable. Coming out of shock will also help the kidneys and liver to slowly regain function. She needs to get off ECMO as soon as possible. Her issues today mainly involved bleeding. Patients on ECMO need to be on a lot of heparin to keep the blood from clotting...therefore Ava is bleeding from several places. The surgeon stitched one place where she had the guide wire in her leg from cath lab. When I left she was bleeding a lot from the leg where the ecmo cannula was placed. As a result she is receiving lots of blood transfusions and platelets. She is bleeding in a few other places too, but these two were the places causing problems.
Today Shaun and I saw Ava cry tears through her closed eyelids. It was heartbreaking. I talked to her as much as I could before more sedation kicked in. Neurologically she still seems fine, which is one reason we are fighting so hard for her.
Music therapy came by today and interviewed us about Ava today and wrote a lullaby for Ava. We love it. We'll have to post it on facebook.
So prayer specifics.
Praise God for another day with my baby and for strength for Ava and for us
please Lord, bring her out of septic shock so her vessels and organs can start doing what they are supposed to
Lord please recover the lungs as fast as possible to get off ECMO as fast as possible-it is very dangerous.
Please help her pee off that lactic acid
Please Lord bring us miracle after miracle and help us give you glory
Just got a phone call---sends my heart a-racing. Surgeons are going to try and identify the exact place of bleeding in her leg and get it under control.
Today Ava and Ivy are 7 months old.
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