Meant for This: Parenting Children with Complex Heart Defects

February 20, 2017 adopting again, adopting as first time parents, ASD, February 2017 Feature - Heart, Heart System, infertility, surgery, TGA, toddler adoption, VSD 0 Comments

I want to start by saying that our miracle children astound me. We love them personally and uniquely. Their birthparents are revered in our home; we thank God they had the courage, strength, and compassion to have them and keep them safe.

I married my college sweetheart. Kyle is way more incredible than me; I serve a gracious, good God! What a gift I’ve been given in my husband of nearly ten years.

We worked a couple of years before deciding we wanted to become parents. We had a season of struggling to conceive followed by a new and exciting desire to adopt. I mean, switching gears to adoption sparked something so new in us!

We tried for almost five years to conceive a biological child, and then stopped. All of our stress slowly melted away. God had a plan for us all along; we only had to let go of our preconceived notions of family to allow for His agenda to come alive.

Over the course of those five years, over three were spent in infertility treatments and we had one miscarriage. During infertility, it was like we couldn’t grieve like we felt we needed to because there wasn’t an actual loss of life. After miscarrying, we felt free to grieve, and God soon changed the desires of our hearts.

Our dream shifted; we knew adoption was the right path for our family.

Looking back, I feel beyond blessed that we experienced the pain of not having a biological child. I now feel able to deeply, uniquely empathize with our children’s inability to be with their birth families. Also, I would not know and love my incredible kids if it were not for that season of infertility. It pushed us to go through all of the hurdles of adoption.

Willow and Jonas are uniquely our little loves; no one else would ever do!

When we found out (each time) that they had complex CHDs, we grieved. We grieved as a parent does when anything is physically wrong with their child. It also caused us to develop a ferocious protectiveness in our love for them.

Although we don’t want our kids to walk through sadness or pain, we believe God does not make mistakes. There is purpose in the pain. He is not only the Creator but the Great Physician; these heart ‘defects’ are not at all defects but are a meaningful trial meant for my children and for us.

We look at our children and see how perfectly and wonderfully God made them. Sometimes I cringe when people say to an expectant mom, “Who cares if it’s a boy or a girl, as long as they’re healthy!” I understand the sentiment, and at the same time I am so profoundly changed by watching my heart warriors fight to live. Their complex anatomy is difficult, no doubt, but it is purposeful and beautiful. They inspire me and so many others, and we wouldn’t change one thing about them.

The more I know about congenital heart disease, the more my mind is blown at how hard they fought before joining our family. Specifically, when we grapple to understand our kids’ complex hearts, we all – cardiologists included – are taken aback. There is a resilience to my kids that can only come from a hard start, physically and emotionally. Spend any time with them, and you’ll understand! Watching them soar as they continue to grow has been the joy and privilege of our lives.

At the beginning, we were not open to special needs. We were not open to toddler adoption either. It’s funny to me and so relieving now that my kids are in our arms. God taught us by moving us toward our children in baby steps.

You can’t conceive?
Consider these infertility treatments.
Your heart isn’t in it anymore and the loss of miscarriage has you aching?
Think about growing your family through adoption.
You don’t think waiting for infant adoption is the right path for you two?
Pray about international adoption.
At peace with adopting a toddler from somewhere like China?
Consider a child who needs serious medical intervention.

The decision process to adopt two toddlers with complex CHDs was obviously slow and cautiously maneuvered, but that’s about how it felt (only much more gradual). I cannot imagine if we had not taken the risk. I never, ever want to imagine the alternate life we could be living.

We believe God aligned all four of our circumstances to bring us to each other and give this gift of restorative, unconditional love. We live the good life with one another, and we fight all our battles together in this household.

Our daughter, Willow, is four years old and now thriving. Willow Mei had L-TGA with various other heart defects as well that allowed her to survive nine months with no interventions at all. Every doctor that meets her calls her a ‘fighter’. I mean to say, she doesn’t want them touching her! That fight she has is what kept her alive.

When we met, her oxygen ranged from 65-80, but you wouldn’t have known she was sick. She can make anyone smile! She’s intelligent and very verbal, and she has an independent strength that somehow mixes with her deep dependence on us as her parents.

When we said yes to her, she was 16 months old and her file didn’t look great. We were terrified we would finally have a child only to watch her suffer and fail to thrive. We got off the phone with the cardiologist who viewed her file, and we both cried.

We knew they were the tears of a mommy and a daddy.

When we said yes, we thought her best chance would be getting a Fontan surgery which is considered palliative since it would’ve meant only one ventricle in her heart. She had surgery one year after we adopted her. Her incredible surgeon and her team were able to give her a Hemi-Mustard Rastelli, so our girl now has one and a half ventricles! Her energy increased majorly after the season of recovery from surgery. This was a dream come true, and it was no cake walk of a surgery. It was absolutely terrifying.

Our cardiologist had assured us that she would absolutely have some complications; the likelihood of no complications was very slim. By the grace of God, the complications that we had during those long hours of her surgery were complications you’d prefer – if you had to choose in her scenario.

Once she was off the ventilator, she aspirated into her lungs, and we had two very scary events in ICU post surgery. She was re-intubated, and we were all slightly traumatized. She withdrew from that point on at the hospital, and not until we got home did we start to see little peeks of our precious girl’s vibrant personality again.

About four to six months after surgery, once we could breathe again and our girl was mended, we began to notice something…. We became incredibly jumpy regarding her safety. We would lash out at one another after little accidents occurred which was highly unusual for us. We began to understand that we had some minor medical PTSD from watching our daughter fight for her life.

Our jumpiness at anything related to her safety was our way of processing that difficult surgery.

Once we understood what was happening, we were able to communicate about it respectfully and eventually we felt less and less of those effects. I want to be frank about this, because it’s something that happens after long hospital stays. We were only at the hospital for twelve days, and then we had to be re-hospitalized for pleural effusions. I can only imagine how much more intense it is for those who have longer stays.

However, just like you can imagine, we were able to see life with new appreciation. We thanked God for the breath in our lungs… for the beating of our daughter’s heart. We didn’t care about material things, and we didn’t care about trivial matters anymore.

Every single day, we felt such gratitude for our doctors, for our daughter’s healing, and for God’s hand on her life.

We were given perspective, and that’s a beautiful thing to have.

After walking through the fire with our daughter during her open heart surgery nearly two years ago, we didn’t anticipate adopting another child with such a complex need. However, we were open to minor heart defects and decided that knowing and trusting our cardiology team in and of itself was a great reason to become parents to another child with this need. We had a team ready and waiting to go! But – as if we could ‘order’ the Creator around – we requested (through our social worker) that the need be not as serious.

His need was nearly identical, at least from our untrained perspectives.

Our sweet son is curious, and he’s a hugger! He wants to do everything his big sister does, and he is rarely fearful which is a tremendous blessing during medical appointments. If we find something out of place, we know who quietly moved it.

They complement one another so well. When we first adopted Willow, she was learning words at a rapid pace but not wanting to move around much. He’s been the exact opposite; he’s all over! She teaches him so much, from the alphabet to the concept of family – and he has taught her to be brave and climb the tallest towers.

The transition was far from seamless in adding a fourth person to our crew, but the struggle to adjust has made the result even sweeter.

Jonas had D-TGA with other heart defects that kept him alive three months before his first surgery in Nanjing, China. He had a complicated surgery there: the arterial switch. Our team of doctors was very impressed that this procedure was done on him prior to him coming home. Currently, Willow’s heart is looking fabulous, but Jonas is in a holding pattern.

Holding patterns are so hard; sometimes it is all I can think about. I wonder when we will suddenly be told that it needs to happen soon. We get check ups all the time. There is no need for emergency surgery at this point, but he will need open heart surgery to repair his aortic valve before too long. We have sought three opinions and have heard four different options. The issue our son faces is rare.

After going through such complicated and scary surgery with Willow, we weren’t about to do something complex without hearing several surgeons say that was the best option. We’ve decided at this point to wait for his aortic insufficiency to cause his aortic valve to nearly completely fail before operating. We are grateful that one of the most aggressive hospitals in the country has assured us that this conservative approach is best. They will then go in and attempt to repair his aortic valve in hopes that he doesn’t have to get an artificial valve.

There are several back-up ideas if that surgery doesn’t work. We are so very thankful for options. What wonderful medical assistance we have in this country. We consulted with a hospital that is 1,761 miles away from us without ever leaving the comfort of our home.

Technological advances and medical knowledge and precision has greatly influenced the quality of life for my children and for others with CHD. What never was possible is now possible! People are living out their entire lives with major and complex heart disease. The online community allows for connections between patients all across the world, and people are getting heart repairs that save lives because of those connections.

What an incredible time to be open to parenting a child who has a complex CHD.

The resources are out there. Not only are there babies who need families; there are children dying and desperate for medical interventions that are basic procedures in western hospitals. I urge anyone reading this to open their heart to these beautiful children.

If you cannot adopt a child with CHD, pray about how you can get involved. Support organizations like Little Hearts Medical, OneSky, and Show Hope. These organizations not only rescue children and seek to find families for them; they save lives. My two babies are prime examples.

They are fighters. They are stronger than I’ll ever be.

They’ve changed my life forever and for the good.

Because of their struggles, they can enjoy the good times more than most of us. There’s something in the spirit of a heart warrior that will change you once you get to know them.

Walking my children through medical stuff is the greatest privilege I’ve ever been given. I am who I am because of how they inspire me.

I am the first to say that this family dynamic isn’t for the faint of heart. However, we’ve found that God gives us strength. We don’t summon up our own strength to get through things. We rely on Him together as a family.

If we relied on ourselves, we couldn’t do it. We never even would’ve tried. There is nothing more fulfilling than living out God’s call for our lives, however difficult at moments.

We were meant for this, and the love we enjoy together as a family makes life remarkable.

– guest post by Amber

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