I Don’t Know How You Do It :: Parenting a Medically-Complex Child

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heartTHE BEGINNING:

One day in early January 2015, our lives took a sharp turn and we found ourselves on the rollercoaster that is CHD (congenital heart defects/disease). My precious daughter has a critical heart defect; she has a heart that didn’t fully form. I don’t know if I can explain this fully, but at this point in our CHD journey, I was in a state of shock…a fog that wouldn’t lift. Colors turned way down, music lost its magic. Waves of anxiety kept knocking me down, I couldn’t keep my head above water. No matter what anyone said, I could not process it. Encouragement fell on deaf ears.

I kept hearing that 1 in 100 children have some sort of heart defect, but only 25% of those are critical. My child’s defect occurs more like 1 in 10,000 kids. Many other syndromes/issues/defects are very common in conjunction with heart defects. My daughter has scoliosis as well. By miracles beyond my comprehension, she does not seem to have any developmental delays, any neurological concerns, or other genetic issues.

Every day of my pregnancy (after learning about her CHD), I worried she had died in my womb. If more than five minutes went by without me feeling her move, I would shift into a state of panic. As horrible as it was, I was so glad to know, though. I could not imagine being surprised by this sort of health issue once she was born. We had time to process the news, interview surgeons, tour cardiac ICUs, meet cardiologists, and on and on.

For some reason, one memory stands out as a beacon of hope during those terrible months. My husband and I were in the waiting room of a cardiologist’s office, waiting to be called back for a fetal echo. All of a sudden, a preteen and her mom breezed out from the doctor’s office and to the front desk to make a follow-up appointment. The girl was tall, had long, pretty brown hair, and she looked super normal and healthy. She was nonchalant. Maybe even bored. For sure, this girl had a heart defect that had to be checked…but her life didn’t seem ruined? She looked strong, and so did her mother. They made their appointment, said goodbye, and walked out. My life was crashing down around me, but maybe it wouldn’t always feel this way. Maybe that girl was giving me a brief peek into the future. It was exactly what I needed to see.

THE HORRIBLE MIDDLE:

My daughter has survived three open-heart surgeries, all in the first 13 months of her life. Surgery day is…well, almost unimaginable. There is almost nothing as hard as saying goodbye to your baby as a group of silent anesthesiologists, cardiologists, and staff roll her bed down the hall into the OR. It is agony. That’s the best word to describe it.

Surgery day is the worst day of our lives, and it’s also the best day of our lives.

When they call us to say, “She’s out! Come out to the hallway and you can see her for a minute before we take her back to her room,” we literally sprint to that hallway and wait. We are shaking. The doors open and I see her dark hair on her bed and the tears are impossible to stop. They pause so we can see her and touch her; we marvel at how much better her color is now that her heart is repaired. The reunion is brief because they have much to do to get her on the road to recovery. Meanwhile, we collapse into each other’s arms and wait for the surgeon to give us the details of the surgery.

She spent months in occupational therapy and physical therapy; I’m proud to say she walked at 14 months, just four weeks after her third surgery.

Around her 18-month check-up, she got RSV, and for some reason, that was my breaking point…not the three OHS or the therapies or the echos, etc., but the virus that wasn’t that bad and didn’t require a hospital stay. I’d stayed “strong” for a long, long time, but was at the end of my rope. I was crying (a lot) each day. I was so short-tempered and on edge and made a lot of mistakes. I started an anti-anxiety med and it saved me from losing my mind.

NOW:

Things are going great. I cannot believe that four years in, she is thriving and the rest of us just can’t imagine life without her. I still hold my breath when pregnant friends go in for their 20-week sonogram (I urge to get very clear pictures of all four chambers of the heart). I urge moms to make sure their newborns get a pulse oximetry test after birth. I’ve met many, many moms with heart warriors, which has been so wonderful. I’ve joined Mended Little Hearts of Dallas as the social media coordinator.

By God’s grace, her prognosis is excellent and she has a great quality of life. Nothing keeps her down for long. Her heart won’t ever be truly fixed, but we’ll keep repairing it and doing whatever it takes to keep her healthy. Whenever I start to worry about the future, I remember how much she has overcome in her short life. I pray daily for technology improvements, more research, more opportunities in the cardiothoracic surgery field.

heartMy job is to be the expert on her specific condition, to be the memory of her complex medical history, to tell her story with confidence so that she can see how important it is to advocate for herself once she’s grown.

My goal is that she grows up knowing that her heart is different, but that it’s not what defines her or controls her. I want her to find echos annoying, not frightening. I want her to go without thinking of her CHD for days, weeks, months. I want her to be so unfazed by her scars that she’s not self-conscious about them, ever.

I remember one of the notes I saw in the cardiac ICU on her post-op paperwork as an 8-day old: “This one’s strong.” Yes, she is. She’s the strongest person I know.

Klyde Warren Park Charitable organizationThis post is part of our series featuring Charitable Organizations in the Dallas Areas, written by our Instagram Manager, Whitney.  Our goal is to feature charities that Dallas Moms care most about!  Click here to find out more about these organizations.

5 COMMENTS

  1. You have written this beautifully. Just what I needed to read. My son is a heart warrior as well. Unfortunately we were not diagnosed in utero and I found out 6 hours after he was born. He just had his second OHS and just turned 6m. Hopefully just one more to go once he’s 3. Thank you for sharing your story!

  2. Amazing story and the same thing happened to me on February 2015 with my son Liam. 3 OHS later and I’m now the director of Mended Little Heart OK!! Great job

  3. Hi!I am from the Philippines who is inspired by your heart journey story!I am a heart mom too.i have an 18-month-old son who has a Perimembraneous VSD and advised for an OHS this year after his Nephrologist declared that he is VUR free as he underwent a Ureteral Reimplantion Surgery last July 2018- that was a nightmare for me and for my family but thank God he is just super strong…
    And that OHS will be the best day of his life…of our life as you quote it!thank you so much for the inspiration!

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