Tune my heart.

I thought numerous times about blogging about life at home with Mira. I wish I could have captured in words the joy this little girl has brought us. I knew tough times lay ahead, just not like this. Just not now.


I knew we still had hurdles to climb, but I did not foresee this on Sunday.


Last Sunday morning as I was getting dressed for church, I knew Mira felt bad. And after we hooked her up to the pulse ox, she started desatting and you could progressively see her getting worse. Her color, her cap refill… it all looked concerning… but I never, ever would have predicted this.


When we got to the emergency department, they were great with her, got her on oxygen, she seemed more stable and happier, and we learned she might have her Glenn. I was unnerved, frustrated, scared, but still peaceful because while we had planned for this much later in the year, we were anticipating it happening. It wasn’t something unheard of or new. So we proceeded on to get the cough figured out and get her ready for the big surgery. Who would have know so much would change so fast?


First, the thought was a sickness causing the cough, and so appropriate viral panels, blood counts, screens, and tests were run. Negative. Then it was thought to be the Nissen (her anti-reflux esophagus wrap) causing her to choke on her own spit.


They intubated her for her heart cath Friday and for her EGD on Saturday to dilate the Nissen, and the plan was to extubate on Sunday and have pulmonary/ENT follow up with her at the beginning of the week.


Mira doesn’t like plans. (& mommy inserts shrug emoji here)


She coded on Sunday. They started CPR and they only did chest compressions for a few moments. I hit the ICU floor, with two other heart moms holding my hands, crying out to God while they worked. Every fiber of my being ached, screamed, and prayed, while every nurse, RT, and doctor ran to help Mira. It was awful. And such a huge set back. After a few days, we were able to come off two medicines (epinephrine and vasopressin), and her lungs have improved with the steroids/bronchodilators and diuretics. She’s was still having some fluctuations with blood pressure and heart rate that have made us nervous and we have lived with a constant state of held breath. Tuesday, they came off the paralytic and she woke up stable but completely out of it. We kept her calm as possible through the day and night. At 7:25 Wednesday morning, Mira had a second episode of bradycardia (low heart rate) and the team stopped her from going into cardiac arrest for a second time. They’re calling these pulmonary hypertensive crises. We’re had to start back on the paralytic medicine, which put us another step back from getting her off the ventilator. They changed up her sedation cocktail, decreasing the Versed and replacing it with Thorazine, and  and added Sildenafil (aka Viagra... I ironically shared a post on how this is useful to heart babies a few months ago on Facebook) to help her lungs. Her second screening for viral/infection came back negative as well so we’re back at a loss as to what put her into this tailspin that we can’t seem to get her out of.


I have grasped at straws to figure out a way to help her. I listen and advocate and learn as much as I can to know what to suggest or what to expect and how to pray.


I wish so very much that I had hope at the moment. Hope waxes and wanes, as does my anxiety. At times, I am positive and optimistic and feel a current on we-can-do-anything flowing through me, and other times, the worry and sadness paralyze me right wherever I am sitting or standing. When we brought Mira in last Sunday, I was concerned, but I could have never imagined we’d be in the position we are. A seemingly benign cough has put Mira in an absolute tailspin, and I keep crying out “mayday” to God, hoping for the best.


I have thrived off of details and obsessed over learning every detail of her condition and her care since day one. I learned what metabolic acidosis means, what a good mean arterial pressure looked like, and learned what PEEP and FiO2 means on a ventilator. I felt like knowledge gave me comfort and helped me to face the enemy head-on. But knowledge and details aren’t giving me any peace right now. I know we have a long way out of this deep, dark forest. First, we get her off the paralytic without her having an episode. Second, we wean her vent without her having an episode. Third, we get her through pressure support trials to show she can extubate. Third, we extubate and go onto a secondary support of oxygen - like BiPap or High flow - and stay that way without any episodes or changes in blood gases. Fourth, we figure out if the steroids and sildenafil are enough to keep her from coughing and having lung pressure issues, then we get her stable enough to reconsider the Glenn. Fifth, we have her second major open heart surgery and get through that and the recovery and then maybe we can go home. Whew. All that is why I have to stop thinking about anything but the day-by-day, moment-by-moment situation… if I don’t, I get consumed by the worry.


A friend sent me a post by Ann Voskamp that described the fear that moms of sick babies feel, and the part that resonated with me was the desire to worry. I am made of worry. I eat, sleep, cry, and talk worry. I do nothing but worry. And Voskamp wisely said that we should worship when we worry... I’m making this my anthem.

Worship over worry. Lord, tune my heart and heal my baby.