August 26th, 2016. The day that we had our 20 week scan and the perinatologist broke the news to us that something was seriously wrong with our baby’s heart.
January 20, 2017. The day that Regina was finally discharged from the NICU, after 24 long days. She was not feeding by mouth at all.
Last Friday, the scheduler called from the children’s hospital to schedule Regina’s open heart surgery. We scheduled it for May 26, but that could change based on whether an emergency or a heart transplant pops up, or (God forbid) if Regina gets sick. I have no doubt in my mind that whatever date her open heart surgery ends up being, it will be a date etched in my mind forever.
The surgery will take several hours. They are going to open up her chest cavity, stop her heart, and put her on the bypass machine. She will be intubated. She will have a line running from her chest to drain all of the fluid. She will have several scars left on her little chest from this, the greatest of which being the one where her chest was opened. I am going to have to hand off my tiny, precious babe to the surgical team, knowing all of this. It is going to take all of my strength not to clutch her to my chest last minute and run out of there screaming.
She needs this operation. She is dying. Every day I watch her struggle to breathe and gag, retch, and throw up all of her feeds. She cannot cry. She cannot laugh. She cannot eat by mouth. Every night I lie awake and listen to the constant hum of her feeding pump and her gasps and grunts. I wonder if I should turn on all of the lights and check to see if she is in distress. Chest retraction back “to her spine” as the cardiologist says? Nasal flaring? Is she turning blue? The fact of the matter is that she is dying and only by cutting her open and repairing her heart does she have any hope of surviving this.
They say that God hand picks the crosses for you to bear in order to sanctify you and bring you closer to Him. He can give you the grace to bear it, if you only ask. It seems so cruel and heartless sometimes. Why must I bear this cross? Why must Regina? Why can’t we just cruise through a pleasant life and slide on into eternal paradise? Must we climb this exhausting ladder? Jesus waited four days before coming to Lazarus. Four days!! By the time he finally arrived, Lazarus was already dead! Mary and Martha had been mourning the loss of their brother for four days. And when Jesus arrived, what did he do? Did he just chuckle at them and raise Lazarus with the lazy flick of his hand? No. He wept. He mourned the loss of his dear friend, even though he knew he was about to raise him from the dead. He knows my pain. He felt it himself. It’s ok for me to cry sometimes and break down under the weight of it all. But God’s Divine Will is not our will, and we cannot see all ends and purposes like He can. A diamond only becomes a diamond through extreme pressures. Without those pressures, it is just an ugly rock. I am not up to this task. I am nothing without Him. The upside to these trials is that I have no choice but to surrender and trust in Him. Jesus, I trust in you.
Scott and I have been working hard to plant the seeds of faith and tend to the garden that is our family, and we are hoping it bears fruit. What’s that you say? Too heavy-handed a metaphor? I won’t argue with you.
Now, for the crowd sourcing portion of this (admittedly whiny, sorry about that) blog post. I really want to put together a little something for Regina so that (God willing) when she is older she can see how many people were praying for her and loving on her when she was going through this. Any suggestions? I have seen people ask for cards (I guess I would have to get a P.O. Box for that), ask for pictures emailed or sent to them of sweet notes of encouragement from people and their locations, etc. My brain is a fog these days. What do you think?
Thank you, as always, for all of the prayers and support. We wouldn’t be able to do this without you. Truly.