As I have explained before, I knew when we said yes to Mira that she had a heart condition. I researched and Googled and Pinterested raising and caring for a child with a CHD (congenital heart defect), and I pulled apart medical journals and science-based documents all about HLHS. We knew the first surgery was complex and risky, and we knew recovery time could be a very, very long time.
I knew it, but that doesn't mean I grasped it. You can say 3 weeks to 3 months and your brain can "hear" it but not get it. Tomorrow, Mira will be four weeks old and it seems impossible to comprehend life before her or life once we go home. All I can now know and understand is life now, with her here in the hospital. It has been long and exhausting.
Yesterday, Mira was extubated for the third time. Extubated means they removed the breathing tube. In Mira's heart, blood going to her body and lungs are mixing together, so telling how much oxygen is going to her body is always like hitting a moving target because it depends on how strongly the heart pumps and how deeply the lungs breath and at the same time the rate of how much blood flows to her lungs and how much flows to her body. Imagine her heart as a lake where salt water (oxygenated blood) and fresh water (unoxygenated blood) mix and then flow out two different streams, one heading to her body and one heading to her lungs. So it really is hard to keep the flow balanced, especially considering the stream bed to her lungs is wider because her shunt is so large. We had really thought that it would be weeks before Mira would be extubated again because one team of doctors felt that she needed to grow into her large shunt. After a few days of extra calorie formula, increasing her hemoglobin, upping her heart meds, and then seeing some increased sizes of her breaths while on pressure support trials, they felt like it was worth another try. I was thrown for a loop because I legitimately prepared for multiple weeks before another attempt. I just couldn't get my emotions in control of the worry that she was not ready and would fail again. It made me sick to my stomach. I asked countless questions and probed them for ideas and methods we could try to make this time different. I apologized to every doctor or nurse on her team (and there's a ton of them) for being overbearing momzilla and then my eyes would fill up with tears and I'd tell them just to please hold my hand through it because I'm just so scared.
Sunday, they extubated around one pm. The doctors began to trickle into the room, the CPAP was rolled in, the lights turned on, and everyone was foaming up their hands and rubbing in the hand sanitizer. I picked up it was our cue to step out, told her I loved her and to do a good job, and I made it around the corner just out of sight before I blubbered into a mess. I was nauseated. It was the same feeling I vividly recalled feeling during moments of motherhood with Makinzy - the first time she rode a bike without training wheels, knowing I had to let her try and that I couldn’t protect her from falling. It made me queasy and sad and so, so helpless. It was literally all I could do not rush back in there and say no I can’t let you do this. Granted, I knew better. You can’t protect them from hurt. I can’t stop Makinzy from getting hurt because she didn’t make the team, I won’t prevent her first accident (let’s pray it’s minor) when she gets behind the wheel, I can’t stop her from making stupid mistakes. I just have to let her and trust in God’s plan for her life and I have to believe in her success. It dawned on me that I have to do the same with Mira and I will have that same feeling over and over and over again as her mama.
The wait to hear how she did was excruciating. I paced. I flopped. I stared. I scrolled. Repeat. It was supposed to take around 45 minutes to an hour, and they gently shooed us out around one… and then it was after 3 before Jake finally just called from the waiting room. In turns out, one of the doctors who was going to come get us never made it out to see us because she was whisked away with a critical patient (no hard feelings on that, because, you know, it’s the ICU, understandably). It also took extra time because the doctor sat by her bed for a good hour making sure she was okay. In some ways, this was harder than surgery day. With surgery, it was going to be good news or bad news, and we had hourly updates. It just was what it was. This meant waiting and watching and nail-biting.
Her lactate levels (which elevate when she is under stress, exercise, or in her case, heart failure) stayed low and didn’t bump up like last time. Watching her blood gases have been dance-inducing, amen-shouting, fist-pumping moments.
Mira’s heart condition is a life-long fight. It isn’t a quick repair and done. There’s no way to fix missing half of an organ, short of a transplant. But thanks to these surgeries, she has a chance to go on and live a full life. She has hope. Every stage is a process. Right now, she has to ween from the CPAP to a high flow oxygen nasal cannula and tolerate her feeds when we resume them again. Her lactate levels need to stay low during that so we know her heart can handle the increased work of digestion, and then we can move up to the floor.
I’ve heard people call us good people for taking this on. For living in a hospital for weeks. For choosing to love a baby this sick, this fragile, this risky. It makes me feel weird to hear it. Because, truthfully, I don't believe we are any different from anyone else. I feel guilty hearing this knowing the doubts and protests I’ve had inside. Really, we’re just a family who was prepared to love whatever child laid in our arms. We just wanted to be obedient. Jake and I have been striving for spiritual maturity in obedience. We have learned to long for our Father’s praise of “well done.” It is that desire that formed the words yes in us. Our mission work is not in a foreign country but within our family. Our mission is to love the children He gives us.
“It is written that we shall “stand before” Him, shall appear, shall be inspected. The promise of glory is the promise, almost incredible and only possible by the work of Christ, that some of us, that any of us who really chooses, shall actually survive that examination, shall find approval, shall please God. To please God...to be a real ingredient in the divine happiness...to be loved by God, not merely pitied, but delighted in as an artist delights in his work or a father in a son—it seems impossible, a weight or burden of glory which our thoughts can hardly sustain.” - CS Lewis