Just One

I have to admit, for a long time, Derek and I didn't consider ourselves parents (or parents-to be) of a special needs child--mostly because Jordan's needs aren't exactly visible or noticeable. However, these past nine or so months have completely changed our views on the definition of special needs. We've realized that yes, Jet does have special needs, but because they are "hidden" (unless his shirt is off for you to see his "zipper"), they aren't obvious.

Last week, I had a chance to participate on a panel of moms of special needs children. As with most panels, there are many questions to be answered within time constraints, plus many of the questions asked didn't necessarily pertain to our situation. That being said, I wanted to take some time to answer some of the questions (or questions that we've personally been asked), because again, not many people would consider a congenital heart defect or congenital heart disease (CHD) a special need. I hope these questions help you understand at least a little bit of what CHD is all about. Get ready for a crash course on a very small subset of pediatric cardiology. 

1. What exactly is CHD? How is it diagnosed? What type does Jet have?
   
   CHD stands for Congenital Heart Defects, or Congenital Heart Disease. It's a fancy way of saying your heart is not normal at birth, and needs to either be corrected or have some sort of palliative care plan in place. It's the most common birth defect (approx. 1 in 100) and about 20-25% of those are considered critical (source: CDC) with over 40 varieties of CHD. Some of these defects go undiagnosed for years because they are asymptomatic until middle-late adulthood, some of these can be detected in utero as early as 22 weeks gestation, and yet others are noticeably present at birth. In the U.S., there are, I believe, only 13 or 14 states that require pulse oximetry for diagnostic purposes at birth for critical congenital heart defects (our state being one of them). Any and all kids with a diagnosed CHD will require lifelong care, specialists, tests, and possible surgeries and/or interventions to maintain the functionality of their heart. There is no cure for CHD. 
   
   Many heart defects can occur on their own or in a group (Tetralogy of Fallot) and some occur as part of a syndrome (i.e. Down's Syndrome, DiGeorge Syndrome (q22), Williams Syndrome, and Heterotaxy Syndrome). Jordan happens to have Heterotaxy Syndrome. Heterotaxy can come in many forms; and very rarely are two cases alike. Jordan's case is classified as "Heterotaxy/situs inversus, left atrial isomerism, with functional polysplenia." That doesn't include the list of heart defects he was born with (as each child with heterotaxy is different), but it does narrow down specific issues he could face throughout his life. In layman's terms, his official diagnosis means his heart and abdominal organs are mirrored, with his internal organs having a "tilt", and multiple spleens (anywhere from two to six) functioning as one. It also means he will have lifelong followups with cardiologists, pulmonologists, immunologists, and really, just a lot of ologists. If you aren't sure what exactly that means, here's a fun diagram from the Heterotaxy Network that can help explain what your internal organs look like (situs solitus), and what Jet's look like. 
   
   
   Next week, Jordan will be undergoing open heart surgery to further correct a mitral valve leak, which is contributing to his pulmonary hypertension (PAH), which snowballs into lung issues. Ironically and technically, Jordan also is diagnosed with asthma--completely and totally unrelated to his heart condition. This means that when he gets a respiratory virus or infection, not only does the asthma have an effect on his breathing but so does his PAH, which makes his heart work harder as well as his lungs unable to maintain his body's oxygen levels. This causes his oxygen saturations (sats) to drop to unhealthy levels. When your sats drop, your brain doesn't get the oxygen supply it needs, and this can have a long term and permanent physical effect on your body if not corrected. By correcting this now, we hope to alleviate some of the breathing difficulties Jordan has and prevent irreversible and irreparable damage. They'll also be repairing something called "cor triatriatum" which is definitely not spelled like it's pronounced. Basically, they'll be clearing out some tissue that's divided his two atria into three; another irony, since he was born with just one.
   
   In addition, due to his left atrial isomerism, he is at a higher risk for complete heart block and due to results from his most recent Holter monitor plus his unusual tiredness, Jordan's doctors have decided to go ahead and put in a pacemaker now. Because of his age, his pacemaker will be considered "temporary" because the leads will be sewn to the outside of his heart and the actual pacemaker will be placed under his sternum/in his abdominal wall. This mainly because younger children, let's be honest, aren't known for their balance and agility and having it placed there will minimize some risk associated with him falling on it and disrupting the leads (yet we still need to be careful). Once he is older, he will have a permanent pacemaker put in the "normal" place (upper chest muscle) and the leads hopefully put inside of his heart, and then he will only need the batteries changed periodically. Unless medical advancements are made (and they very well could be), Jordan will have this for the rest of his life.
    
2. What are ongoing supports you have in place for your child?
   
   This is an interesting question. Since Jordan's need is physical, his supports tend to be less behaviorally or developmentally focused, meaning it's less about therapies and more about maintenance. Currently, we see our cardiologist every three months, and more often if needed. We also have a pulse oximeter at home to measure his sats if he looks blue (lips, nail beds) or if he is coughing, wheezing, or retracting. We have a nebulizer to administer twice daily lung treatments as well as rescue medicine if he begins wheezing. Due to his asthma (and PAH) we have an asthma plan in place from his pulmonologist. Plus, we have "normal" CHD daily medications, like aspirin, epaned, lasix, etc. Because of Jordan's previous surgery, or for reasons unknown, we do have physical therapies and feeding therapies in place as well to help him catch up to his peers with his gross motor skills.
    
3. What do you most want people to know about your child and your family? 
   
   We are normal. We can go to parks, play outside, have playdates, go to church, childcare, and Sunday School. No special treatment is required. But we are not normal. There are times that we can't participate. There are times that when our son starts to cough, we immediately start to worry if this is serious or not. Certain times of the year, we just won't be going out. We are sticklers about certain vaccinations (whoa, that's a can of worms I won't discuss further). We have appointments and therapies in place that we need to schedule around. We deal with anxiety, PTSD, and loneliness, which is not exclusive to CHD parents but also to many parents of any special need.
    
4. How can our family best meet your child's needs in our home during playdates or parties?
   
   This is a great question, really, with a super simple answer. Educate yourself and use common sense. I'm not asking you to take a six week course on first aid, but simply assess the situation, and ask us if special accommodations need to be made. For example, if you're going to take Jordan somewhere where there will be a lot of physical activity, tell us in advance so we can give him a breathing treatment beforehand. If you see him take a particularly hard fall, inform us so we decide if we need to contact our doctor (because of his pacemaker). This next one should be a no-brainer regardless, but wash your hands, wash your hands, wash your hands. And my kid's hands. And your kid's hands. Really, just wash all the hands. And if anyone--anyone--in your home or that has been to your home is sick, was sick, or still has symptoms of being sick within 48 hours of Jordan or our family coming over, please tell us and understand that we may decide to forego the invitation. (Honestly, that last bit is something I feel should be practiced regardless.)
   
   And, just to clarify, when I say sick, I mean any sort of respiratory illness. Obviously, we don't want the stomach flu either, but while a respiratory type illness can make your child uncomfortable and even warrant a visit to prompt care (and yes, "healthy" kids can be hospitalized too, I'm not denying that), to date every respiratory illness has landed Jordan in the emergency room and an overnight stay at our favorite children's hotel, I mean, hospital. I'd take a 24 hour stomach bug every week (gross, not really) compared to watching my son struggle to breathe. And please, please remember, Jordan is not even close to being a "serious" case. There are heart children much, much more at risk for more serious complications due to respiratory infections or viruses, even death. Please, consider them before you take your sick child out and about to play groups, etc.
    
5. How can we help OUR children best understand/be sensitive to YOUR child's needs?
   
   Another great question! We don't know what the future holds for Jordan. And obviously, his friends are also two and three years old. Clearly, none of them care right now. Someday though, they might notice things that are different. Help them understand there's a possibility that Jordan won't be able to play rough or hard. That he might always be a little bit behind physically. Help them understand that this isn't something he is doing on purpose or for attention, especially if he ends up missing school for longer periods of time. Help them understand that Jordan's scar is not weird, or funny looking, but instead be in awe of their friend's bravery and resilience. Teach them how to pray for Jordan (as some of you already are). Teach them empathy, because as Jordan gets older, there may come a time when he struggles to understand his diagnoses and why it happened to him.
    
6. How can your friends best support you during times of struggle with your child? 
   
   I'll just list out a bunch of things off the top of my head, in no particular order. Don't forget about us when we are housebound for days or weeks or months due to illness. Text us. Call us. If possible, accompany one of us to a doctor's visit or test, because sometimes it's hard for both Derek and I to go at the same time.  Check in to see if anything's changed diagnostically. Meals are welcome when we've spent a day at the hospital or in the Emergency Room, or the day of a hospital discharge. (Even if it's McDonald's.) While the doctors have a very positive outlook on Jordan's lifespan and quality of life, we have no guarantee. These are very real fears, so please, understand them by lending a listening ear--not giving advice or assuming overreaction. Know that our plans can change in an instant. (We're still getting over the fact that we traded in seeing Rogue One for a two night hospital stay at Hotel OSF.) Most importantly, pray for us. We are completely, 100% winging it. Anything and everything we've learned thus far was a crash course as things were happening. 

I hope this sheds some sort of light on what it's like to be a CHD parent. I've "met" via Facebook and in real life some incredible other CHD parents that inspire us every day. I also hope this inspires you...not necessarily to adopt a child with CHD (or any special need...although that would be fantastic!) but to take note of other parents of and children with special needs. They will appreciate you taking the time to show them how you care. I promise.

Psalm 139:13-14 says this: "For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are you works; my soul knows it very well." While we are all uniquely made by our Father, we can't help but think of Jordan when we read this verse. In fact, we can't help but apply it to any special need. As Jordan's book reads, "He formed you quite perfectly, then said 'I'm done.' I'm happy there's you, because God made just one." 

Jet Fighter

When we were matched with Jet, we started a Facebook Group call Jet Landing for friends and family to follow along with our road to Jet (I really much prefer the word "road" or "adventure" instead of "process" or "journey", which I'll maybe explain in a later post.) For obvious reasons, and for our little play on words, we changed it to "Jet Landed" once we were home in the States.

Now, for the third time, we're changing it again. 

Our little guy is stubborn...

July 2016

 Our little guy is strong-willed...

August 2016

And our little guy dives straight into the middle of things, whether it's jam on toast or a crowd of people. This is how he approaches life. Center of. 

July 2016

These are all things we've learned about Jet over the course of the past nine months. His near constant motion, his happy demeanor, his curiosity...these are also things we've learned. We read these things about him in his paperwork when we were matched, but we were finally able to experience all of them in person and every day since our Family Day in May. 

But most of all? Our little guy is a fighter. And that's why we're renaming our group to "Jet Fighter." 

We've had so many tests and procedures. He's been a trooper through all of them. Most recently, we changed up some meds at his regular appointment in the middle of January, and got ready to hurry up and wait. Since Christmas, Jordan has been slowly sleeping more...and then finally the past two-three weeks asks to go to bed or nap before noon or before 7:30...and then takes a 2-3 hour nap plus sleeps a solid twelve hours a night without waking. Considering up to his bad respiratory infection in December he wasn't even taking a nap and just having a "rest time" in his bed for 2(ish) hours with toys and books, this was something we've been keeping an eye on.

Due to J's pneumonia from last weekend (that apparently may not have been pneumonia but we're still calling it that because no one really knows what it was), they discovered while comparing his chest X-rays from December to now that his heart was significantly larger, so last Wednesday we added some new meds and doubled the ones we were on, plus take his oxygen levels regularly, with instructions for labs to be drawn in a few weeks while the doctors conferred about possible surgery this year.

The final straw was we've gradually been noticing his lips being that blue shade you never want to see, and a few lower sats recordings this weekend than what he was previously capable of while healthy (now that his cough was gone). We emailed our cardiologist with our list of concerns. Since Jordan basically has been sick since the middle of December with only a couple of healthy weeks between, there was a good chance that we were worrying over nothing (maybe lips were blue because he was cold? and clearly he needed to catch up on sleep from the multiple hospital stays!), but we wanted the doctor to be aware that we were starting to notice these things. 

All of that background to say...our cardiologist called yesterday afternoon, and without much preamble, stated that we would be scheduling Jordan's open heart surgery as soon as possible, most likely toward the beginning of April. Apparently, our email on Sunday confirmed what he's been studying over the past week(s). To say the least, we were shocked. We assumed we'd be bumping up his next appointment, or maybe adding a halter monitor to the labs in a few weeks. We were not expecting him to say let's get things moving for heart surgery. (Which, by the way, is irony for you: here we've been expecting and expecting and expecting surgery, and the doctors always putting it off...and when we least expected it, BOOM, surgery asap.)

Today, 2/28/17

So that brings us back to our Jet Fighter. All of those qualities that I listed earlier? Those are what have gotten him through his surgery in China, his transition from his other family into our own, from one culture to another, and those are what will get him through this surgery and recovery. The surgery is more complicated than originally thought, but the doctors have a positive outlook on the prognosis. It will hopefully alleviate some of the pressure on his lungs from the pulmonary hypertension, as well as close up a significant leak in his mitral valve. It may decrease the severity of all of these colds and respiratory infections too. Previously discussed was a pacemaker placement, and while no mention was made of that yesterday, we assume that is also still on the table. They will also take a look at his mitral valve, and see if they need to or will be able to replace it some day in the future if it comes to that.

We would truly appreciate your prayers for all three of us in the next few weeks. Specifically, Derek will be traveling overseas for a week or so in March so I'll be holding down the fort and again possibly later in April or May. We absolutely need Jordan to stay healthy so the surgery can be performed as planned. And then for me, as the master scheduler, I have a number of odds and ends to tie up between then and now, such as we received a referral to pulmonology that is supposed to take place at the end of March but don't know if it will still be needed, and Jordan also was set to be evaluated for Early Intervention, also in March (due to a gross motor skill delay) that also might not be needed...as what would be the point of starting physical therapy two or three weeks before open heart surgery? Plus the normal pre-op tests, appts., etc. And pray for Jet...that he keeps his fighter stance, and comes out of this with a new brave scar?

And finally...we'd still appreciate prayer and wisdom for when our next match/referral comes. We truly believe he/she is out there waiting for us as we are for him/her...and life goes on outside of our little red brick house and OSF hospital walls. We want to be ready to say yes when that time comes, whatever our circumstances are at the time, but also want to be able to wait patiently. 

So many verses come to mind, so I'll leave you with some passages that have brought comfort to us recently: 1 Samuel 2, Psalm 46, and Hebrews 11. Please pray them with us, and for us: for patience (again), strength, wisdom, and faith. 

#lethopeshine

Three Birthdays, Three Families

Independence at its finest

It's already the 24th in China, and that means it's already Jordan's birthday! He's officially two! And, boy, is he really two. I won't say it's the terrible twos, at least not out loud or commit to it in writing, because while frustrating it's great that he is developing normally! He's asserting his independence more and more every day, and I don't know where he picks up half of the things he's learning but he does. I stopped counting words that he says and uses correctly, because it would occupy the majority of my day, and since he's been using the "two by two" (two word phrases by two years old) for a few months now I am unconcerned about his language skills. His physical strength is improving too--still doesn't exactly leave the ground when he "jumps" or have the upper body strength to pull himself up and out of his crib (not a terrible thing), but I've found he very much lives by the motto "when there's a will, there's a way." And boy, does he ever find a way (and the will) when he needs to.

We aren't doing much to celebrate; first of all, it was just Christmas so he has lots of gifts and toys to play with (and some yet to be opened), and second of all...he's two. He doesn't really understand what his birthday means yet. But, we did get him a few things and we'll be having his favorite Chinese noodles for dinner plus maybe going out to get cake shakes from The Little Raven Creamery...because Mommy isn't baking a birthday cake and cake shakes are awesome. In the meantime, while he's supposed to be napping (yet I can hear him singing and playing with his animals in his crib), I figured I would write a letter--to him, and to whomever is reading, to understand a little more what birthdays mean to us, and to possibly other adoptive families.

Dear Jordan, 

We have loved getting to know you these last seven (almost eight) months! Every day, you amaze us with something new, and we admire and love your silliness, your stubbornness, and your resilience. Those three things, while at times (quite) frustrating to us, will get you pretty far in life, and we can't wait to see how God will turn your little light into a big light for Him. 

But at some point, you'll understand that although you turned two, your previous "birthdays" were celebrated with two other families. We'll do everything in our power to support you and help you remember them, and the sacrifices they made for you in love. 

First pictures we received of J.
Approx. 1 year old. 

Your first birthday was celebrated with your Ayi and your Morning Star brothers and sisters, where the common thread you shared were special warrior hearts. Some of them are no longer with us, but most others of them are home with their forever families. Hopefully, someday we can all get together and meet and talk about your shared experiences. In the meantime, us parents try to stay in touch with you and your siblings--because that's what they were to you--and talk about your milestones and setbacks and adjustments to life with your forever families. We also will never let you forget the amount of people who prayed for you and supported you during your time at MSFH, before we even knew you were ours. 

And of course, we will work even harder to help you understand your actual Birth Day. How you have a birth mother and father on the other side of the world, who, we believe with all of our hearts, gave you a chance at life because they loved you so much--the ultimate sacrifice. Because of your complicated little heart, it's bittersweet, since we know that without them making sure you were found quickly, you would not be with us now. Birthdays are so hard, because we know that they are remembering you and hoping you received the care they so desperately knew you needed, yet if they were able to we know that they would have done everything to keep you with them--because that's what we would have done in their shoes too. 

You'll hear your whole life how beautiful adoption is. 

One month old 

But don't ever forget that adoption is courage, and adoption is loss too; and it's okay to mourn for that loss. We understand, because we are right there with you. It's so hard to put into words that we wouldn't give you up for anything...yet know that others bravely did just that. 

So please remember, and we'll help you until you're old enough to understand, you have three families celebrating and remembering you on your birthday, every year. We believe that God placed you here for a reason, and we will do our absolute best to help you learn and grow and find your purpose, as we promised when you officially became ours. We love you Jordan, and so many others do too.

Jordan, and so many others like him, were given financial and prayer support until they were matched with their forever families. Because of organizations like Morning Star, Jordan, along with many others, was able to receiving his life saving heart surgery through monthly sponsorship and donations. You can check out their website here (and maybe spot a picture of baby J), and if you so feel led to sponsor a child please check out their current Let Hope Shine-China Project. Yet the MSF goes a step further, and has what they call their Love Project. Donations to a project such as this would help families like Jordan's: that they would not have to be faced with the devastating choice of having to give up their child...or just give up. These donations enable Morning Star to come alongside these families, and help pay for life saving surgeries, or medications, or whatever is needed for family preservation.

There are many other organizations such as these, but for obvious reasons, this one is near and dear to our hearts. You can follow them on Facebook and Instagram for updates on their current kiddos. Of course, if you know of others to sponsor or follow, please do so! The ultimate goal for all of these types of organizations is to provide support for family preservation until there are no more orphans. Thank you for your consideration in supporting these at the very least, in prayer.