To My Daughter: Here's What You Won't Remember About Your First 3 Open Heart Surgeries
Originally published on The Mighty
I’m so very thankful that your first three open heart surgeries were in your first 13 months of life. The sweet result of all this is that while you don’t remember the scary things, we have become very… connected. You and I are close, we have a bond that is not easily explained. I can understand you no matter what you mumble, grunt, cry out. You sometimes place a hand on my arm when I need reassurance. You rub my cheek against yours. You give me hugs and kisses when I need them most. Our bond is one that can’t be broken. One day you’ll understand what you had to go through as an infant. And once you have your own children, you’ll understand what I went through as the mother who had no control over how to help her sick child.
This is what I hope you’ll never remember; this is what I wish I could forget:
“Ma’am. You need to know that this is very, very serious.”
The ambulance ride where we never stopped holding hands, on the way down to Children’s Dallas for emergency open-heart surgery. You, 5 months old, looking at me silently and I’m staring back at you, silently pleading with God to not take you from me.
“It’s time to extubate her.”
Thank God you won’t remember. I squeeze your hand and silently cry because I have no idea what it’s like, but I’m right there with you. I am so sorry. If it could be me, I would trade places with you in a millisecond.
“Just go home and rest.”
The words always said to me the first night following surgery. The blood pressure peaks and valleys. The meds tweaked. The watching and waiting. Me, off to the side, waiting to pounce if someone doesn’t immediately attend to you. I don’t understand how surgeons say that parents should go home to rest on this night. This is the night I want to be by your side, watching your vitals like a hawk. I will do whatever it takes if it means that you are comfortable and recovering nicely.
“We just don’t know how all this will affect her developmentally. It’s all up to her.”
Well, no, it’s all up to me, to us, to get her the therapy she needs, to obtain the precise medical care that is available, to research the gold standards in care and treatments, so that she has every advantage, every opportunity to have a “typical” developmental journey.
“We’re having a hard time finding a vein.”
Find it. I hate the digging to find a vein. I know which vein of yours they need to use. Get that IV set up now. You scream while I hold you still, whispering that I’m sorry and that you are so brave, praying that you don’t hate me.
“Is this Mrs. Reed? They’ve just opened her chest.”
Three open-heart surgeries. The calls from the operating room, updating us on your progress. Your recovery: the pain, the soreness. When your chest tubes are removed. All the medications: the ones with the adverse affects. How you can’t eat even though you are hungry; the ache within me because I can’t meet a basic need.
The vitals taken every hour. The medications given every three hours. The pain.
The fact that your chest was sliced open, your muscles and bones cut through to get to your tiny heart where it was lifted out of your chest and cut open, repaired and placed back into your chest. The fact that a bypass machine kept you alive for over 100 minutes during each surgery.
“Let’s do an MRI to rule out any neurological issues.”
OK. I’ll just be over here having a nervous breakdown. You tell me what to expect with future issues; I did not sign up for this.
“Maybe she could benefit from special shoes.”
“Her trunk seems weak.”
“Significant developmental and cognitive delays are common in children with this type of defect.”
“She seems strong, but you just never know.”
Physical therapy. Occupational therapy. Discussions about you trying special shoes to help you walk sooner. Me saying let’s wait, let’s see if you walk on your own. And then the moment, four short weeks after your third surgery, where you happily take your first steps, and the joy in my heart explodes like a million fireworks all at once. The pride flows from my voice, from my eyes, from my heart, as I watch you nonchalantly walk across our living room.
“Everything I’ve read says that kids with CHD should not attempt to have children of their own,” says someone who did her thesis on CHD’s affects, who cornered me and tried to tell me that I should limit your reproductive choices.
What I know now, based on conversations with your surgeons and cardiologists: you will decide when and if you will have children with your partner and your cardiologist. Nothing more, nothing less.
“Your daughter’s congenital scoliosis can only be corrected with surgery.”
Of course it requires surgery. You as a 4-month-old at Scottish Rite, snoozing when I got this news, and it was all I could do to not immediately fall apart. Now, we go once per year to measure your spine’s degree of curvature. If surgery is needed, we will do it. It is what it is. You’ll be fine.
“Whenever she has a high fever, that’ll require a trip to the ER.”
The high fever, unexplained, requires a trip to the ER, ever since you were diagnosed with Kawasaki’s disease. High fever could also mean a serious heart infection, endocarditis. I just feel like there are so many unknowns.
“Well, this could always mean an arrhythmia.”
Unexplained vomiting could actually mean a heart arrhythmia, which could mean an eventual pacemaker. Everything feels unexplained. What was once one diagnosis seems to have spawned into 15 different things to watch out for. I know I’m complaining too much here.
You won’t remember any of this, all these things that are burned into my memory. Thankfully, you won’t remember the emotion, the stress, the tears, the anxiety and for that I’m so grateful. Let me bear those emotions, so long as you are free from them. I want you to live fearlessly, bravely, with a clean slate. You’ll have future surgeries and procedures that you will definitely remember. Let those be smoother, where things can be communicated and understood, even if they’re painful and scary. My worst memories involve your searching eyes, obviously in pain, when you weren’t old enough to understand my tearful explanations.
Here is what I hope you remember: that you’re strong and resilient and able to handle whatever curve ball life throws your way. Despite your emotional mom who wrings her hands, you are actually fine. You’ll have annoyances, like echocardiograms; sometimes illnesses will require hospitalizations; whomever checks your heart at physicals will need to be forewarned.
What our heart warriors will never fully comprehend is that most of their parentswould trade places with them at a moment’s notice. If I could somehow take on my daughter’s heart defect so that she could live with a healthy, fully formed one, I would do it in a second. Let me be the one who has the weird symptoms, the sicknesses, the unanswered questions, the scars, the risks, the procedures, the open-heart surgeries, the recoveries, the additional issues that come after open heart surgery. If it meant sacrificing my life, of course I would do it with no hesitation. But somehow that’s not what’s being asked of me.
What I am is my daughter’s memory, her historian, her advocate. I do the research, I stay abreast on CHD research and advances in technology. I stay in the know on the goings-on of my local hospital, its staff and any turnover. I read the scary articles, I advocate for her at her school, I make sure all her doctors are always fully aware of her medical history. I don’t let the nurses’ gasps at my daughter’s scars faze me; I address that directly. There is nothing to be ashamed of, there is nothing to hide. There are facts to be addressed and then we move on. This is my daughter’s reality, but it’s not a death sentence. It’s not something to be pitied.
While I wouldn’t wish these memories on anyone, there are things I do want my daughter to know about her present and future:
My precious girl, I am so sorry you bear these defects. I’m so proud of who you are, how resilient you are. Your strength makes me strong. Please know I take full responsibility. One day you may be angry at the hand you’ve been dealt. Please blame me, not yourself. You are amazing without even trying.
The care you’ll need throughout life is not lost on me. This is not a little issue that will be fixed and forgotten. You’ll need lifelong care. You may need future surgeries. You may hate this. Know that I hated it first. That I’d take all of this on for you if I could.
You will persevere. You’ll know when it’s time to slow down, when to ignore your mother’s questions about how you’re feeling, when it’s time to check back in with your cardiologist. You have already surpassed and obliterated anything and everything heart warriors’ parents are told. I’m just along for the ride, ready to provide the background, the current state of local hospitals, the rumors and studies around the latest technological advances. I’m here to shout your accomplishments, recognize everything you’ve overcome and silently pray as I watch you grow into the woman you are destined to become.