September 25th is soon approaching.
Ellis will have her third open heart surgery that day. This will be the last part of the three staged reconstruction surgery for children with HLHS: a condition where the left side of the heart is severely underdeveloped or non-functioning. These surgeries usually take place soon after birth, at 4 to 6 months, and at 3-5 years of age. We’re told that after this surgery she’ll have three chest tubes draining during recovery.
Concerned friends and family always ask if this will be the last one. I wish I could confidently say “yes,” but the truth is I’m not sure. Additional surgeries may be needed in the long run. For now I can only focus on one medical hurdle at a time. It’s been an uphill battle getting to this stage and I have no margin to spare worrying about new health issues we may navigate years later.
The past four years have taught me the importance of essential things that I often took for granted: family, friends, health, peace, time, rest, priorities, gratefulness, and faith to keep us from falling apart into gazillion pieces. Many nights I could do nothing but mumble incomprehensible prayers to God when Ellis throws up for the umpteenth time and turns blue in the face. Other times when she is quiet in the car seat, I panic that something has happened. I reach over to make sure she is responsive and warm; out of habit, I ask Elliot to see what his sister is doing when we’re on the road.
One thing that surprises me although it shouldn’t is that God listens to prayers, those said and unsaid. He has done amazing things in hopeless and anxious-filled situations. Like in the throes of feeling disempowered and exhausted, God would send encouragement in tangible and intangible ways to refresh our spirits to keep going.
It’s been two years since Ellis was admitted to the hospital, so this upcoming experience is shaking me out of complacency. When she was a baby it was easier to do the hospital thing; now she understands and has awareness of what’s happening. Once again, we’ll be meeting with the Child Life Specialist to prepare for her for the upcoming hospital stay. Boy, do I have a newfound appreciation for this resource at the hospital!
Ellis has the hardest experience but I’ve learned that witnessing is also a tough job. The worst part is waiting by the operating room elevator and seeing a group of doctors and nurses wheeling her out in a hospital bed with wires, lines, and tube coming out of her body. This sight brings me to my knees. But I am there to hold her and comfort her through this experience, so I regain my composure and follow them to the doors of the ICU where I need to wait till she gets settled in. I tell myself I can do this, but inside I feel like a quivering chicken.
I’ll be there soon enough: in one week exactly. In the meantime, I’m going to eat more chocolate with my kids, make messy dinosaur crafts, try bubble gum for the first time, sneak in naps when they are watching YouTube, nag them to brush teeth (especially after they tried bubble gum), build another sloppy fort in the living room, and dance like looney birds to Kidz Bop!