After the Honeymoon: Adopting a Child with Complex CHD

February 14, 2017 adopting a boy, adopting as first time parents, complex heart defect, Family Stories, February 2017 Feature - Heart, first year home, Heart System, heterotaxy, medical needs checklist, Morning Star Foster Home, pulmonary atresia, should we adopt?, surgery, waiting for referral 0 Comments


Prologue:

In our son’s room, we have a picture that reads: “Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.” (Joshua 1:9) We chose this verse for him, but in reality it applies more to us.

My husband, Derek, and I have been married nine years this past November. We have always felt led to adoption, not as a Plan B for not having our own biological kids but as a Plan A for growing our family. We felt that God was leading us to adopt our firstborn from China. We adopted our son in May 2016, after only about a ten month process. Let me just say, it’s been a whirlwind of a year.


Part One

On Friday afternoon, March 4, 2016, I was washing dishes when I heard my phone ring. I immediately recognized that it was our agency calling, and I am not ashamed to say that I let it go to voicemail — not because I had soapy hands, but because I had to get my suddenly racing heart under control.

You see, just the night before, I had cried to my husband that I didn’t know if I could do this. Although we had only had our dossier in China for two months and had begun the process six or so months earlier, we had looked at a number of children’s files and not one of them felt like our child.

Was our faith not strong enough for some of these conditions?
Were we truly honest in saying we were unable to accept certain special needs?

I was starting to believe there was something wrong with us, or with me. So we prayed together and on our own, and made some changes to our medical conditions checklist, and somehow finally felt the peace that we were seeking so desperately, which lasted into the next day. Until that phone call.

Of course, it was a vague voicemail asking us to call them back, which I did, with shaking hands and voice. The agency rep was so kind to me on the phone, because I’m pretty sure she could hear my nerves, and explained to me they had a match for us: a little boy, around thirteen months old at the time, with a repaired congenital heart defect that leaned more on the major than moderate side.

I still have the piece of paper I took notes on, my handwriting laughingly unrecognizable, and remember calling my husband immediately and repeatedly at work until he picked up so we could check our email together to read about this (already in our opinion) adorable little boy’s file.



Why not the immediate yes? Because we had only recently added moderate to major heart conditions to our medical conditions list — just weeks earlier. It was the one medical condition we argued most about. One of us was a resounding yes, and the other of us was a resounding no. Yet we both felt drawn to this little boy — a baby really — and wanted to submit our Letter of Intent right away.

Of course, as recommended, we met with a pediatric cardiologist on the team of CHD specialists at our local children’s hospital and also had his file reviewed by a pediatrician. The pediatric cardiologist was especially encouraging by telling us how complete the file was and that we could be looking at surgery in just a couple years or fifty, and would probably just monitor him via routine echoes. Fantastic! (We aren’t, by the way, saying that we were misled by the cardiologist. We are saying that based on the information we had, this is what we were anticipating, which is all any of us can do in that situation.)

We also were told by countless people how blessed we were because he was a Morning Star baby. We had never heard of the Morning Star Foundation, but we took everyone’s word for it that he had received and was receiving excellent care.

Looking back, we know how ignorant this sounds and how unprepared we were, but we really, truly felt that we were adequately prepared for everything. We weren’t so ignorant to believe that everything would be coming up roses, but to us, we felt like this would be easy to manage.

We sailed through the next two months of red tape and more paperwork, and before we knew it we were on a plane to China. Our Family Day was May 30, 2016, when Jordan Ezekiel (Jet for short) was placed in my arms by his precious ayi. The next two weeks of travel were typical of any adoption — more paperwork, and one step forward, two steps back in the bonding process. But even then it went better than we had hoped or imagined.

I’m sure you’ve heard it before, if you’re an adoptive parent, but there are two rules you typically read about in support groups:

1) Do anything and everything possible to get through those weeks in country until you’re home.

2) Prepare for the worst; hope for the best.

I will fully admit that I tuned out a lot of Facebook groups and resources leading up to Jet’s adoption because, honestly, those two rules terrified me. According to our paperwork, and every update we saw, he seemed like a normal, healthy little boy. I did not want to hear about horror stories and make them my “what ifs”.



If I were to foreshadow what the next few months would bring, let me tell you about our “triumphant entry” into the States. Everything we had planned on…balloons, a welcome committee of family and friends wearing red shirts cheering as we walked out of the terminal with our new son to collect our luggage, driving ourselves home from our local airport…

None of that happened.

After an incredibly long flight where absolutely no one slept and the temperature in the plane had to have been close to 80 degrees, we landed at O’Hare. Derek and I started gathering our stuff, when our seatmate pointed out to us that Jet’s nose was bleeding. And not just bleeding, but gushing blood.

Please remember, it was very warm, so we had stripped this poor baby to his white onsie which was now covered in blood. And then, just to really show us what parenting is like, he filled his pants… massively. I believe, to this day, Immigration and Customs took pity on us because we were through within ten minutes — the smelly, blood-covered hot mess horror story you’re imagining. We gathered our luggage, cleaned ourselves up, and did a last minute audible and called Derek’s parents to drive us home instead of waiting for our connecting flight.

I then spent the next two hours in a car from Chicago to our home trying not to vomit in their backseat thanks to a sudden migraine while listening to my still new son scream because he had never been in a carseat before. We arrived home four hours earlier than planned to a very small gathering of people on our front lawn instead of the original crowd expected at the airport. To summarize, nothing went as planned and hoped; just one thing after another.


Part Two

Fast forward to being home for one week and our very first cardiology appointment. We went in for a baseline echo, to be followed by a standard EKG and doctor consult. Ironically, the gentleman who performed Jet’s echo went to our church, which put us at ease — for a few minutes. I’m not claiming to be a mind reader, and it’s not like I know how to read an echo, but faces can be easy to read sometimes. And so when the echo dragged on, the increasingly intense-looking sonographer suddenly excused himself and came back a few minutes later with the doctor whom we had yet to meet. To be fair, I still didn’t know if this was common practice, but when the doctor suddenly took over and neither of them were speaking except for short words along with a lot of clicking and pointing at the images, I started getting… uncomfortable.

From there the nurses did what I now know is standard procedure: EKG, oxygen saturations, and regular vitals. Now, I’m not a nurse — I dropped out of nursing school before I could study anything good — but I’ve seen ER enough to know that oxygen levels need to be in the nineties, especially high nineties for a small child, and he was averaging levels in the mid/upper eighties. Again, not alarming… but… uncomfortable.

Finally, the doctor came in, officially introduced himself, and then proceeded to explain in great detail what he suspected Jet has. This was not the same doctor who had reviewed Jet’s file three months prior, but they worked together on the same team. Considering this was our first visit and he had only just received Jet’s history, Derek and I could see he still was, for lack of a better phrase, taking it all in.

Jet’s official diagnosis that day was heterotaxy with polyspenia and left atrial isomerism, narrowing of the pulmonary veins, and a narrowing of the entry into his right atrium. Oh, and abdominal situs inversus.

We had no idea what the majority of those things were. We only heard tone of voice, and that tone was, “Whoa. This kid has been through a lot and there’s more to come.” The doctor was incredibly factual with no leanings either way of how to proceed, and ended our hour long consult with a very offhand statement: “Long-term, he should be fine.”

Comforting.

This is when we started to realize the idyllic life so far with our son of three weeks was not going to be our normal.

Our honeymoon was over.

Since then, we’ve added pulmonary hypertension/mitral valve regurgitation, cor triatriatum and a pacemaker sometime in the future through multiple echoes, EKGs, chest X-Rays, a heart monitor, a cardiac MRI, a heart cath with stent placement, a liver/spleen function test… and an eye exam, because why not add significant astigmatism to the list?

Our cardiologist and I are on a first name basis at this point, because of almost weekly phone calls for about six months straight.



Every test Jet’s had to date has answered one question to raise two more.

In six months, we’ve had two ambulance rides, four ER visits, missed all major holidays due to sickness and hospital stays, and are currently waiting to find out when (not if) Jet’s open heart surgery will be scheduled, that, if you recall, we thought he had only a vague possibility of needing over the next fifty or so years. Every time we’ve gotten close to scheduling it, something else has popped up that has made the doctors reconsider.

Since Jet’s initial cardiology appointment, we hit the ground running and haven’t yet stopped.


Part Three

So where does that bring us? What have we learned? What is “the moral of this story?”

Jet has brought more joy to our lives and to those around him than we imagined possible. If you meet him, he’ll be your best friend and he will seem like any other normal toddler.

We are constantly in awe of the sheer number of people, including doctors, nurses, and lab techs, who have told us they pray for him or will pray for him — or even stop to pray for him right there. He is a fun, smart, nonstop, growing boy that is 110% personality. He loves kids, he loves babies, he says please and thank you and you’re welcome. He checks everyone’s heartbeat with his brand new “doctor kit” and doles out “pills” (he takes three a day). He has no fear, is quite willful, and has an incredibly high pain tolerance. He lets you know when he is unhappy with a procedure or a needle stick, but he doesn’t fight it. He is brave, braver than us, and doesn’t even know it.



Yet, he has a heart condition. His file said repaired. The cardiologist before submitting our LOI called it “bread and butter” cardiology at the consult. Maybe, possibly to the doctors, it seems that way, but to us as parents? There is no such thing. It is constantly in the back of our minds, and there are certain times we can’t treat him as a normal kid with a normal heart.

If Jet is sniffling, we immediately start albuterol treatments along with his already prescribed twice daily pulmicort to keep those lungs fully functional and oxygen levels up. If anyone is sick, we ask that they stay away. Once the pacemaker is in, he most likely will never play contact sports. He will probably never run cross country or sprints in track. We don’t care as long as he’s healthy! But our hearts break because his heart is unable to give him the choice.

It will always, always be in your mind that your child has a heart condition. I don’t care if your son or daughter comes off of the plane to go straight to the hospital for a heart transplant, or if your son or daughter has a fully repaired heart that requires annual echoes and EKGs for maintenance. I almost didn’t feel qualified to write this, because I read about families whose children are so much sicker than Jet, and I feel guilty for my own worry. I feel like I should be more grateful that he isn’t as sick as some children are — and I am. His case isn’t life or death. We are literally waiting for him to be sicker so the surgery will be the most beneficial. But I’ve learned there isn’t a “cure”. This is something he will, and we will, deal with for the absolute rest of our lives — regardless of how well his heart is functioning now. And that’s a common thread that all heart moms will forever share.

This has been eye-opening to us, and especially me. I like control. I like order. I like a plan. This is none of those things. God is 100% in control, and my life is so much easier when I submit to that… and give Jordan to Him.

We would, absolutely, no questions asked, say yes again in a heartbeat. We may have gone into this completely blind with a false sense of security, but in retrospect, it was a giant leap of faith that we didn’t even know we were taking…that continues. We have a new love for heart babies, and heart kids, and their parents that we didn’t know we would have.

Our eyes have been opened that most likely, and most commonly, our son and other CHD children like him, was not abandoned due to lack of love, but due to overwhelming love, sacrifice, and bravery by his birth parents — given up so that he might have a chance at life and living. While our hearts rejoice in our son, rejoice in his little repaired heart that will need some maintenance… our hearts also break for the family that had to make a choice to save their son’s life.

Adoption is beautiful, but it is courage and loss. Adoption is the bravest form of love.

There are days where our faith is thin, and we are frustrated or disappointed or scared or all three. Then there are days when we are on top of the world. We know parenting can do that. Parenting a child with a special need can do that more. We have not experienced tragedy ourselves, but we’ve seen it happen to other heart families, and in our humanity can’t help but wonder the “what ifs”.

And this is where we remember… we are not in control. God’s got this. He has me, He has Derek, and He has Jet in the palm of His hand, and not a hair will fall from Jet’s head without His willing of it. He is with us, and He will not let go. We cling to that hope, in our faith, because that is all we have. Now faith is the assurance of things hoped for, the conviction of things not seen…and without faith it is impossible to please Him… Hebrews 11:1, 6.

Remember the Joshua verse we started with? We’re keeping that. But we’ve also added, as both a praise and a prayer: Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen. Ephesians 3: 20-21



– guest post by Mary: email || blog || instagram



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