My Daughter's Open Heart Surgery

This summer took a completely different direction then what we originally intended. As school came to a close in the spring, we began to get excited about various outings, lots of time at the pool with the kids and late mornings. But first I wanted to get Kailey's heart checked out as I'd had a nagging feeling for quite awhile that something was wrong. Despite having medical professionals tell me she sounded fine, I insisted on a referral to a pediatric cardiologist and got an appointment for her. I wasn't sure exactly what I was expecting them to find—maybe something off with her heart beat that could be corrected with medication—but what we discovered was much more serious. She had a massive hole between the two atriums of her heart known as an Atrial Septal Defect (ASD) and needed open heart surgery within six to eight weeks to close it.

The combination of a mother's instinct and the Holy Spirit is a powerful thing. Powerful enough that it saved my daughter's life in a situation we never thought we'd find ourselves. The past two months or so have been a mixture of traumatic, stressful, spiritual, challenging, inspiring and hopeful. We are extremely grateful and blessed to now say that "relief" is also part of that journey, ever since my sweet girl had her heart surgery on July 12.

We had known since our days in the NICU that she was born with a heart murmur. I honestly can't recall if she was given an echocardiogram at that time or not, but we were told she was otherwise healthy and moved on with our babies once they were all released one by one to come home. Two months after their delivery, we had the four of them under our roof and began life as a family of six with 32 bottles to give every 24 hours and about 60 minutes of sleep as new parents to quadruplets. There were follow-up doctor visits to check potentially worrisome issues with their eyes, with Kailey's hips and so on. But her extreme far sightedness actually correct itself as she grew and her hip dysplasia did as well. Logan and Trystan were both in great health and despite Harrison's serious illness in the NICU, he has zero complications to this day. Just two small scars—one on each side of his chest—to remind us of that day in particular we nearly lost our little boy.

As the kiddos grew and especially within the last year, I noticed that Kailey's heart seemed to beat extra hard and that it raced at times even though she'd be at complete rest and it should have been beating calmly and rhythmically. Any time we went to our pediatrician office, I'd ask him or her to listen to her heart and see if there was reason to be concerned. Earlier this year, we had a small issue arise that led to getting Kailey's kidneys completely checked out (which they did, everything turned up normal) and I also asked additional medical professionals to listen to and feel her heart. But everyone told me the same thing—she seems fine.

However, when we went to the pediatric cardiologist they had barely completed the EKG before whisking her into another room where one of the cardiologists himself performed the echo Kailey and diagnosed the ASD. It was just myself and my little girl at the appointment that day and I remember going into shock as I was leaving the building and wondering how this could be happening. Turns out, it was a congenital heart defect, meaning she was born with it. And it also turned out, that we caught it just in time. The cardiologist assured me that we couldn't have had an operation on it until about the time she was four so our timing was perfect. But he also gently let me know that the hole was so large that had this gone undetected for even a few more years the results would have been fatal.

The hole in Kailey's heart means that the wall that typically separates the heart's two upper chambers, known as the left atrium and right atrium, was compromised. In Kailey's case, there was almost no atrial septum or wall there. So a great deal of her oxygen-rich blood or red blood was pouring into the atrium that houses the oxygen-poor or blue blood, thus causing the right side of her heart to become very enlarged with all the extra blood being forced into it. A person's heart, we learned, actually sits at a slight angle with the right side pointing more toward the front of the chest. Since the right side of Kailey's heart was so enlarged that made it closer to her chest wall and was why I could feel it beating so prominently with just my hand.

Since the day of the diagnosis, I've learned more about congenital heart defects and complications than ever. We learned that small ASDs can often close on their own over time or even be closed by a minimally-invasive catheter surgery using an artery in the leg. But more extreme cases, like Kailey's, require open heart surgery. Immediately, the husband and I began to educate ourselves on pediatric open heart procedures and everything it entailed, what to prepare for, what kind of recovery to expect and long-term effects. The silver lining of having open heart surgery meant the fix would be final and there would be no need for Kailey to ever undergo any of this again.

We spoke with several surgeons, one even out of state, to both confirm the best course of treatment for Kailey and also ask lists of questions we had about the surgery, ASD repair and recovery. By the time we met with Dr. Eric Mendeloff, founder of the Congenital Heart Surgery Unit (CHSU) at Medical City Children's Hospital in Dallas, we felt that we had learned everything we needed to know and that we'd also met the best surgeon for the job. Dr. Mendeloff and his staff at the CHSU were phenomenal and we will always be grateful to them for their profound care and saving our little girl's life.

Not a day has gone by since Kailey's surgery that I don't thank God for giving me that "feeling" that something was wrong and leading me to the right place to diagnose Kailey and repair her heart. My mother's instinct has never steered me wrong and I know I have Him to thank for that! It has been been just over one month since surgery and we truly cannot believe everything Kailey has gone through or how amazing she looks and acts now!

Recounting this journey so soon after—especially since we had to make a return trip to the ICU due to complications less than one week after being released from the hospital—is certainly full of emotions for me as a mama. But prior to Kailey's surgery, I'd found some books and blogs and other information that proved vital to us surviving this journey as a family and also to help prepare ourselves as parents, Kailey as a patient and her siblings as her support team in what was to come and how things would happen. Just like I've shared my experience with a quad pregnancy and having and raising quadruplets, the husband and I agreed we needed to share this unique journey as well for those coming behind us that find themselves facing the same or a similar diagnoses and those overwhelming and fearful feelings of the unknown.

I'll be back soon with additional posts about the day of surgery, her recovery, the things we used to help prepare, what to pack for a week in the ICU and how to help siblings along through a process like this. A heartfelt thanks goes out to our family, especially our parents, who were vital throughout all of it and to our close friends who were a great source of encouragement and support these past few weeks.

Kailey now proudly talks about her superhero heart and we, as her parents, couldn't be more impressed and thankful with the true superhero that she is!
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