The first days leading up to her first week of stay at Loma Linda were just as equally hard and worrisome and stressful as that first horrible day of learning all of this.
The first few days were all about meetings and signing papers and labs and tests and everything just kept coming back bad. And we just kept crying. And I can not emphasize enough about how important it was to having our family and best friends with us. Andrea and I would not have survived without them.
Tuesday morning we had to sign off on ECMO. ECMO is basically a machine that does the job of the heart and lungs when the body functions start to fail. In terms of heart transplant patients, most patients will be placed on ECMO, then have a device placed on the heart that can sustain the child for months while a heart is waited on. Based on what we know with talking to nurses and doctors, and how she came into Loma Linda and how she looked, they honestly thought she would be on ECMO sooner than later. Basically time was a waiting game. We waited hour by hour as tests kept getting run, mostly blood. She had to have a couple blood transfusions because so many blood tests needed to be run. She did come back for testing postive for two viruses; rhino and entero. Basic colds that we get. However, they think her getting these common colds pushed her heart over, and that is how we learned about this heart disease. Bittersweet I guess.
Thursday night was rough. During the day, the team could only describe that Emerson had an “episode” and looked like a seizure or stroke. They gave her a CT bedside and saw that one side on the back of the brain looked different than the other. The plans were that in the morning she would be brought down for an MRI. This does not happen very often for babies as young as Emerson. There is a lot of risk involved with this. She needs to be disconnected to her machines and put on mobile ones. She needs to be transported to the “dungeon” of the basement and it is cold. All her machines need to stay outside the door as she is on the MRI so long cords need to be connected. And this takes hours to do. Everyone rounding with us about this, including our nurse, did not leave without a dry eye. It was a very low point after an already emotional week. Emerson could not catch a break. It was bad news after bad news. If she did suffer a seizure or stroke, this would be detrimental. We went to dinner that night as a family, as we did every night, and Andrea and I just sat numb with emotion. Why did this need to happen?
There was so much more that went on as well. Talking and dealing with insurance. Need to talk to work. Need to talk with Social Workers. Need to talk with heart doctors. Every single day is an emotional grind. Every day is a battle to get out of bed. Every day waking up is the realization again that your 3 month old baby is in the ICU fighting for her life and needing a heart. It is so unreal even as I sit here writing this a week later.
I would say my thoughts are driving me crazy. And I can’t help it. Again, the FEAR of the unknown. I know that God has a plan. I have to believe God has a plan. It is the only thing that remotely gets me through this. I can’t help but question “Why?” Why us? Why this heart problem that can’t be fixed with surgery and recovery? Why a heart that needs to be transplanted? How long do we have to wait? Why? Our family really doensn’t have a history of heart disease, is this genetic? Is this an abmorality? If we have more kids, will this happen again? Because no one, and I mean no one, should go through this twice. No one should have to go through this once even! The thoughts are overwhelming. All I wanted in my life was to get married and have children and create our family. This is all I wanted. And now my first born daughter who is perfect is fighting for her life? And now I don’t know if I am willing to have more kids, because what if this happens again? I couldn’t handle that. So much doubt consumes me. So much of my future consumes me. My wife is such a rockstar, and a rock, and she has balanced me out so much, and I am tending to go to the darker side. I know this, I recognize this. I am just mad.
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