Wee Tanii Three

This past April, we told ourselves "Let's take some time. Let's have a normal summer, maybe even a normal, no surprises, ordinary year. Let's not do anything rash." I think we even wrote about it, if you go back far enough.

Because, to stay as honest as we've always promised you, that's what we wanted. Normalcy. No penny pinching, no sleepless nights, no doubts. A one way ticket to easy street. We earned it, right?

Yet tonight here we are, one month after our application approval to adopt our third child from China, because, truth be told, deep down that easy street ticket wasn't sitting well. Uncomfortable. A nudge that wouldn't go away. Wrong even.

As soon as we hit submit, we felt the familiar feelings of excitement and anticipation. Planning out bedrooms and sleeping arrangements (bunk beds!), who will travel (can we all???), and even what vacations will look like, ways we can cut costs and budget and look for support for this adoption.

Within a few hours though, a funny thing happened that I can't say I remember feeling before. All of the doubts and fears and selfishness that had made us say "Let's wait awhile" months earlier came rushing back with a vengeance, and so we decided not to say anything to anyone.

Do we still replace the 33 year old HVAC in our new home?
What about the flooring I wanted?
Can we still paint the walls? 
What about our boys and their current medical needs?
What about our previous and various commitments?
How will we pay for this?

What will people say?
What will they think?
Will they even care?

If you're just tuning in, you'll quickly learn this is our third time starting the adoption process in three years. Everything was so new and exciting throughout the entire process of the adoption of our oldest son that it felt surreal, like a real adventure, from the beginning of our home study to landing at the airport.

The process of adopting our younger son was a bit harder. There were many roadblocks, delays, and changes to the program; yet, because of God's timing we ended up being grandfathered in, so that other than waiting for all the  appropriate approvals, we were able to continue on and eight months after receiving our approval we welcomed home our next son.

Over the last two and a half years, because of adoption, because of our boys and their needs, because of our own heart change, we have felt aspects of our lives change and priorities rearrange and friendships evolve. It would be wrong to admit that we don't mourn what used to be, but if we hadn't said yes, if we had missed this, we would have not found a community of adoptive families that can relate, families that have been there, done that, and bought the t-shirt (and I mean that both literally and figuratively). Families that, by the time Judah came home just shy of two years after bringing home Jordan, had become the kind of friends we could text at 2am and they'd be up for a conversation.

Our tribe. Our village. Our people.

And so it was to these friends, both near and far, that we first tentatively spoke to about adopting again, to gauge their reactions, still with the intention of keeping this quiet to our extended friends and family because of our fears.

And it was those beautiful souls who affirmed us with a resounding YES. Who volunteered to be travel companions (we now have a wait list). Who offered encouragement and prayers right then. Who volunteered to help however and whenever they could. Who understood what we meant when we said our family didn't feel complete, that we are missing someone.

Who told us, when we asked what they thought others would think, "If people don't think you're a little crazy, you're probably doing it wrong."

They're so right. All of them.

Priorities: checked and balanced. We don't need new floors; we have a roof over our head and warm beds to sleep in. We don't need new furniture. We have empty spaces, but I'd rather those spaces be filled with little people and their things than with more furniture.

We have two boys with medical special needs, which means there will never be a "right time" to do this again. I'm a full time stay at home mom, and one of my main jobs is to keep our schedules up to date with all of our various appointments, procedures, therapies, and extracurriculars. Since I do plan to keep that position for quite awhile, it's a good thing that over time, I've even grown to love my new career. Although sometimes the everyday can be overwhelming, we take things as they come: day by day...and sometimes hour by hour.

We've learned and grown a lot over the last three years, but our biggest, greatest lesson that we keep being reminded of is that God is faithful. Let me be clear: I am not saying bad things don't happen, that loss and pain and fear are absent, but even then, at the core, we know He is still good. It's just as scary for us now as it was three years ago, to say "Okay Lord, You're in control here" and leave everything to Him: whether it be how we will be able to support the addition of this child financially or trusting Him with his or her medical need, or even knowing that He knows our son or daughter who we don't even know yet.

So we've decided we won't keep this quiet. We can't.

We do not want to lead with fear.

We will trust with hope.

Because even after all of our doubts and fears and anxieties, the God of 100 billion galaxies has walked with us every step of the way thus far.

For every time we said we can't, He said I can.

For every time we've said we don't know, He said I have a plan.

For every time we've said we're terrified, He said I am with you.

Make no mistake, we are not special people. We are quite ordinary, following the leading of our extraordinary God. And so, we will trust with the same hope and faith that's carried us thus far. We face many unknowns and uncertainties. We don't have a timeline. We don't know when we will be matched with our child or when we will see his or her face. We don't know his or her special need. We don't know when we will travel. The program has changed drastically from one adoption to the next, but we still believe a part of our family is still in China.

What we do know is that we have a village, a tribe of people surrounding us. We're asking that you join our tribe. We're launching a shirt fundraiser to help pay for our second agency program fee, with an explanation of how we came to arrive at this design later this week. Derek is hard at work making things in his woodshop to supplement our income, if you feel so inclined to buy. We hope to have a joint garage sale in the spring with two other local adoptive families, because we know we need community.

Most of all, as we have always asked you, please pray for our littlest person on the actual other side of the world and for that invisible red thread to bring us together soon.

Our little #weetaniithree.

The Skin We're In

"Mom! Mom!! I'm in that movie!"

We were watching a short clip about Chinese culture a few weeks ago, and admittedly I was zoned out when suddenly I heard my oldest say he was in that movie. Before anyone jumps to the conclusion of negligent parenting and not screening what they watch, Derek and I had both watched the video previously and thought the boys might like it. They did like it (it was about food, after all)...but I can assure you, they also were not in it.

My son is three and a half, going on fifteen. I know I'm his mom, so there's a little bias, but sometimes he shows a maturity that I don't expect. He wasn't actually saying he was in the movie, but he was noticing that the people in the video looked like him, and that's how his three year old brain expressed that to us. Not having expected that comment, I simply said "No, you aren't in the movie, but the people in the movie are Chinese, just like you." End of story.

Since then, if someone is watching a clip on culture or looking at photos, both of the boys now ask "Is that me? Is that my brother?" and I know they know it's not them. Each time, I say "No, that man/woman/boy/girl is Chinese, just like you." And for a week or two, that was enough.

But like I said, my older son is very observant. He's starting to notice differences more than his brother, and it's just one more thing in a laundry list of items that have recently bothered him.

"Mom, are your eyes blue? What color are my eyes?"
"Mom, do I have a brave scar?"
"Mom, did I live in China?
"Mom, did you come get me?"

Three years ago, to prepare for international adoption, Derek and I took numerous required classes to equip us with answers for when these inevitable questions came. Some of the important takeaways were (1) to always be honest but also (2) to keep our answers age appropriate.

"Yes, my eyes are blue. Daddy's are light brown. Your eyes are dark brown. Judah's are dark brown."
"Yes, you have a brave scar."
"Yes, you were born in China."
"Yes, Mommy and Daddy flew in an airplane to China where you lived to bring you home with us."

The other important takeaway? To read between the lines.

"Mom, why am I different?"
"Mom, what happened to me?"
"Mom, why was I not with you?"
"Mom...you really love me?"

These. These are the real questions he's subconsciously asking and not even realizing it. He's only three and a half, but his brain is in overdrive trying to make sense of things that may never make sense. If you were to read a child psychology book about typical anxieties in children and the ages they start to present, these fears that he's displaying are above and beyond what he is capable of understanding at his age, which makes for even more fear and anxiety. 

And the answers? They change depending on what he needs. Sometimes the answers just mean extra play time or hugs. Sometimes we use simple picture books to help reinforce simple truths, like all the cool things skin can do and all the colors it comes in, or books that remind us that we're a family, and families stick together. And sometimes Derek and I know we are out of our realm of expertise and look to the professionals to help us help them. This has made us once again batten down the hatches a little, so to speak, to give him (and really both of them) time to adjust and find their footing.

Our boys have beautiful brown skin and the darkest, brightest eyes. One has a giant dimple and the other has the most mischievous grin. One has a brave scar with a unique heartbeat and the other has special and oh so very capable hands. Now, just now, they're starting to realize these differences...not in others, but in themselves. One little girl asked one of our boys what that thing was on his chest. A high five for the other turns into a fist bump, because the other has suddenly realized he can't open and close his hand. These were the moments as parents we knew were coming, but it still hurts to hear and see. Yet, when we hear answers simply stated like "my brave scar" and see the flash of a dimple when a fist bump turns into a super cool handshake...those are the moments we pray they remember: the victories in the differences.

Our boys need to be secure in their identity. Part of that is knowing their background, their history, their ethnicity and culture. However, a much bigger part of that is knowing where they fit in. That scary things can or have happened, but we, as their parents, will be there to help them to the best of our ability. That this family loves each other and celebrates all of our differences. That they will always, always be a part of this family.

That they can know that God gave them this skin they're in, that they will know who they are, and who loves them.

Day by Day

Day by day and with each passing moment, strength I find, to meet my trials here;
Trusting in my Father's wise bestowment, I've no cause for worry or for fear.
He whose heart is kind beyond all measure gives unto each day what He deems best--
Lovingly, its part of pain and pleasure, mingling toil with peace and rest. 

When I was little, singing hymns before the Sunday evening service was one of the highlights of the day. Soon, I was able to play these hymns for myself. Unfortunately, for my very talented piano teacher (and very talented mother, aunt, and grandmother) I'm not a performance artist; playing hymns at an evening service is about as much as you'll be able to convince me to do for the general public. For me, I get the most joy in playing for myself. There is nothing more calming than sitting down in front of the piano and losing myself in the notes and words in a song, especially when I'm stressed or anxious. This particular melody has been in my head on repeat for a little over a month now.

We're just past a month post-op for Jet's first surgery, and today marks exactly a month from his second. And day by day is pretty much how we made it through the month of April, and even now to some extent. Jet was in the hospital exactly two weeks, with eleven of those days intubated and sedated. We had been hoping for a stay of half of that time, and each day seemed a little bit forward and a little bit back. And every day, especially after the second surgery, we were told we would see what the day would bring. Every day, we were told of a new med they were trying, or one that he was taken off. Every day, we would hear the words "maybe tomorrow...maybe tomorrow." His failed extubation made them extremely cautious to try again and to be absolutely certain there would be no repeat performances, but that didn't make it any less hard to see him try to get comfortable, try to lift his arms to be picked up and held, try to pull at the tubes and wires and IV lines because he was burning through the sedation faster than they could administer. We're just past a month post-op, but time hasn't dulled those memories yet, if it ever will.

The month of April was another anniversary of sorts. It was just two years ago, when Jet was only three months old, that he underwent his lifesaving surgery in China, where he was hospitalized for 41 days. Forty. One. Days. Three failed extubations before the fourth one was successful. Weeks in the ICU, where, unlike here, visitors aren't allowed in China. And I can't help but think of Jet's foster mama, his Ayi, who fought for him to have the surgery and paced the hallways of that hospital in Beijing waiting for news. And we owe her, knowing that she does this for dozens of babies. Loves them as her own. Taking care of them as their "mama for now" before they're placed with their "forever family." And like any mother, I think I can safely assume she doesn't want our thanks or to be recognized, because she was doing what any mother would.

This past month has been a blur. It was the beginning of April and now it's almost the middle of May. Knowing what he went through in China doesn't make those two weeks here in the hospital any less hard for him, or for us. It doesn't make the recovery process any less hard for him, or for us. We're still dealing with withdrawal and the medications prescribed to combat that. Next week is a marathon of appointments and evaluations for cardiology, physical therapy, and feeding therapy. Before the month's end, we also see the pulmonologist and have another eye exam...and a hearing test. In case anyone is concerned, I'm 99% positive they're going to tell me his hearing is 100% selective.

It would be easy to get overwhelmed with all of the appointments and therapies scheduled. Actually, it IS easy to get overwhelmed...even easier to worry. But then I look at the pictures of where Jet was a week ago, a month ago, or even two years ago, and realize how far he's come...and that time was just made up of single days and moments put together bringing us to now. Realizing that the only reason we--he--got through them was simply because of God's grace.

I wrote this under a different photo, almost eight months ago now, and it's still fitting...Yes, we will pick up leaves and rocks and acorns and seeds and a worm. Yes, we will walk by our own self without holding hands or in a stroller. And yes, we're very thankful that our independent and ball-of-energy boy can and will do these things! 

We might overreact for sneezes and coughs after almost a year now of being on edge or waiting for the next cold to hit. Jet might be moving a little slower...or at least more cautiously. We might have a newfound appreciation for hand sanitizer (and that's saying something). We might seem worn down and tired and housebound and maybe a little crabby (the crabby one is two). But without those moments of pain and heartbreak and fear and anxiety, we would have taken for granted the moments of joy and peace and calm that have sustained us until now and will continue to sustain us, thanks to the many, many prayers said to our Heavenly Father for Jordan and for us. Thank you to everyone who provided meals, coffee stops, stayed at the house, cleaned the house, helped with the yard, visited at the hospital...we will never be able to fully express our thanks to you, but we appreciate and love each and every one of you. We will continue to take everything day by day, or moment by moment, and hopefully continue onward and upward as things settle back down for our new normal once again.

Even If

"They say sometimes you win some, sometimes you lose some..."

Post-op first surgery

This. This is how we've felt this past week. A week ago Wednesday we were just returning home from the hospital following a much longer surgery than planned. Per what we were told that night before we went home, we were anticipating Jordan being extubated Thursday but it didn't happen...and then Friday...and then finally Saturday was the day.

It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now

Within minutes though of taking him off the ventilator, it was obvious something wasn't right. He was reintubated within minutes after his pressures dropped and his oxygen levels dropped to the low 30s and 40s. The epinephrine that was administered caused his healing heart to go into overdrive at over 200 bpm. It was terrifying.

But. Just as the nurse was seconds away, if not milliseconds, from administering a medication to return his heart to normal sinus rhythm, his heart rate dropped to the preset 120 bpm per the pacemaker. Just like that.

We do not believe in coincidences. We believe in a God who answers prayer. And we know people all over the world were praying for our son.

Although, true to form, once that ordeal was over with, Jordan being Jordan, once again confounded the doctors: he returned completely back to normal, with his body acting as if it should/could be extubated again. There were absolutely no signs that pointed to it not working, yet clearly there was something wrong. No more extubation Saturday, or for the foreseeable future.

Post-op Second Surgery

Sunday morning, the doctors conferenced and decided a CT scan was necessary. He was wheeled off with his entourage and back within a half hour while Derek and I "enjoyed" lunch. The PICU doctor on shift came to tell us it looked as if Jordan had an artery that was bleeding...not gushing, but trickling. That could be what caused the problems extubating--when the tubes were removed, the pressure from the fluid surrounding his heart and lungs caused Jordan's airways to close. We would know for sure shortly once the surgeon reviewed the CT. Derek and I just assumed it would be another couple hours, but no less than half an hour later the surgeon was standing in front of us, telling us Jordan needed surgery immediately to correct the issue. They still couldn't tell us what it was until they were in there, but Jordan would be wheeled down for his second open heart surgery within five days sometime in that next hour.

Yet, they discovered he wasn't bleeding or leaking anywhere--essentially his blood had coagulated too quickly to come out through the chest drain. Again, an answer to prayer? Possibly. This is where it gets tricky. The tests they ran could not 100% conclude that he had a bleed. Fluid doesn't show up on an echo, and his lungs looked clear on every x-ray. Who knows? But prayers were heard and answered, because the surgery was less than two hours and they were able to clear out the entire area of the clot.

However, he had another open heart surgery, and now his lungs were showing a bit of congestion by Monday. No extubation. Rest day.

Tuesday. No extubation. Echo looked great! Heart function fantastic. But no extubation and no plans to do so.

We've hit the highs and all of the lows. Maybe before this we were heart parents, but now...I feel like we've officially been inducted into the club. Passed the initiation. A routine repair that's been anything but.

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

Wednesday. Today. Tonight. Chest x-ray looks good and clear, chest drain is significantly less. And they plan to extubate tomorrow.

So here we are, a week later with Jordan's second extubation planned for tomorrow. How are we feeling? Tired. Worn out. Fearful. Weary. Will it work? If it doesn't, then what? Do we want to be there? How could we not want to be there? How much longer can we play this game? Yes. The longer he is sedated and intubated and resting, the more his body is able to heal. Yet, that doesn't offer much comfort when you see him fight his restraints, or shake his head no to every question, or cry with no sound and you can't pick him up.

But then Jordan reminds us in his more and more frequent moments of awareness that he's still in there. He's not able to speak, yet he's giving the nurses the side eye when he's irritated with them (which is often) and typically it's because he didn't get his way. He broke out of his restraints yesterday and it took three of us to get him situated again. He was determined to roll onto his side, and would not take no for an answer. He almost succeeded in pulling all of his lines out of his neck. He's on the least amount of meds since being admitted for surgery last Wednesday. The nurse said tonight if we didn't get him extubated tomorrow he'd do it himself. So moments like that? They give us the hope we need that the boy who ran toward his operating room to see his doctor friends faster than anyone could keep up with is in there, waiting to tell us anything and everything once he's extubated. He's still our fighter

And if not? If tomorrow doesn't go as planned?

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

And so. Please pray with us that tomorrow, our boy will turn this major corner. That we can step down from the ICU. That he will be able to breathe and talk and eat and walk...sooner than later.

And even if that's not the case, pray that we will be able to continue to stay positive. That we will continue to believe in God's plan for all of us. And most of all, that we will still praise Him for the work he is doing in Jordan's life.

Good night buddy. See you tomorrow. 

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." 

New Years and Red Threads on Red Threads

Exactly two years ago, we celebrated our New Years with what we still affectionately call our "press release." (You can read that here, if you're feeling nostalgic.) We announced to our friends and family our intentions to adopt our first child from China, and although we had no idea of an exact timeline we had hoped and prayed that we would be home with our son or daughter by the end of 2016. Lo and behold, that proved to be true by more than six months!

This post isn't a recap of our adoption process, or a rehash of our 2016--I think we can all agree there are a lot of those floating around and I have no desire to add to that list. However, one thing that I was remiss in showing in its completion was the puzzle piece fundraiser you all so generously donated to in our effort to bring Jordan home. If you want to see it in person, hanging in Jordan's room--and in color--to see where your name is, come on over! Otherwise, here is a photo I took in black and white before we get it framed. (We're very pleased with how it turned out by the way; I was very concerned that the majority of your names or words would be upside down, but they weren't!) I realize it's a little hard to read in the gray scale, but I've never been one to appreciate having my name splashed all over a donation or the internet without forewarning so we kind of made that the rule here too. Plus, again, this gives you a reason to stop on by the house to find your name(s) (and maybe a reason for me to clean it before you come).

You may be wondering though...this looks like the back of the puzzle? You'd be correct. The front of the puzzle looks like this--originally we had an orange one but due to some (ahem) technical difficulties we had to change to the other one we had--which is gray. All 252 pieces were "sold" and have a name, bible verse, or specific wording on the back. The frame will be double sided, so while we will probably display with all the names for Jordan to read some day, he will also be able to choose to view the true meaning of everyone's contribution. Family.
Jiātíng. You helped us build ours, and we're forever grateful, but you also helped a little boy connect with his forever family, which he will also be able to remember for the rest of his life. 

An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch of tangle, but will never break. --Chinese proverb

So where does that bring us for 2017? Well, we aren't sure. But maybe you noticed the new little Jordan at the top of the blog holding up a red heart balloon. He's pretty cute, don't you think? I have an awesome sister who does all sorts of graphic stuff for me...but especially when it comes to her future niece/nephew. We know that this next year will be different and some parts harder than others--but can't you say that about any year? What we do know is this: we have hope. We have hope that we'll have answers to a lot of health questions in the next few months. We have hope that Jordan will continue his good health. And maybe most of all, we are hoping that there is another red thread out there, connecting us with a little sister or brother for Jordan. We've been on the waiting child list since about a month or so after we got home (so almost seven months now), and specifically for another heart baby. We are hoping for a match yet within 2017, with possible travel in 2018. That may sound incredibly far away, but remember, it was only two years ago that we announced our intentions for adopting a child who was not yet even born. 

So right now, please join us in our hope for 2017. And pray with us that God will provide as he sees fit. Health, timing, and finances--and especially financially since we will be starting at basically ground zero. As we've been reminded though, throughout the past two years, God's providence is unwavering. He has provided and will provide, as He sees fit for our needs. And join us in praying for our future daughter or son--Jordan's sister or brother (and let's be honest, this kid NEEDS a sibling), who may already be born yet and facing medical needs we have no way of helping at this time.

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 us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen. Ephesians 3: 20-21

Perspective

In case you've missed it, Jordan's been in the hospital. (Newsflash!)  Hopefully and most likely he will be coming home tomorrow, provided he can maintain his current oxygen levels on his own without any supplemental. I'm not going to sugarcoat it...this is the fourth time we've dealt with this since August, but by far probably the scariest and the first time he's had to be admitted for it. (To be fair, one other time they wanted to admit him but we said it was unnecessary because we knew what prescriptions he needed and what they were giving. Since we're experts and all.)  And to continue this honesty train, we are growing quite tired of it.

Do you know his typical diagnosis for these breathing issues is the common cold? Something that for you and I is just an annoyance or aggravation is quite serious for Jordan. It's not something that we take lightly or that we joke about (much--we do call him a Special Snowflake, but it's all in love--and he's our special snowflake). We're to the point though that if he gets a runny nose, we immediately start our albuterol and have a game plan in place for the next day (or that day, since it is usually 3am).

Typically, the conversation is something like this:

Me: What meetings do you have tomorrow?

Derek: I am free between x and y, and would like to try to be at meeting at z.

Me: Ok. I have an appt at qrs but that can be rescheduled. I'll call triage if it gets worse or I'll wait 'til the peds office opens to see if they'll let us bypass ER this time. I'll text you with what I find out. 

And scene. Back to bed. 

This time, we did get the appointment with the pediatrician, and when we woke up I gave him his prescribed treatment of Pulmicort (twice daily to coat those special lungs). Unfortunately, it didn't help and he got significantly worse--enough that I decided 911 would be wisest thing to do as I can't drive and monitor the backseat no matter how close we live to the hospital (less than five minutes). To summarize, we were admitted within forty five minutes of arriving at the ER and Jordan was given oxygen support as well as his normal breathing treatments (plus albuterol). AND still his oxygen hovered high 80s with 40-60 breaths per minute, while dropping into the 70s when he was upset (and by upset, I actually just mean plain angry). 

Now, I know to some of you that seems super serious. And it could be, or could have been. After all, if this is what the common cold does, what would pneumonia or viral bronchitis or any number of more serious lung issues do to him? We know with 99% certainty that his pulmonary hypertension is the cause of this and we could see a significant decrease in these episodes once the required surgery is done. However, at this time, there are other contributing factors as to why that surgery has not been scheduled. (For example, the mitral valve repair will be more in depth than originally planned, and an unrelated issue regarding placing leads for a pacemaker needs to be solved first.) 

And yes, this was serious, and scary, and as previously stated, getting old fast. But this past week has put some perspective on that. I mentioned somewhere (facebook? Insta? It all runs together...) that this week has been full of ups and downs. For example, a precious little girl, one of J's "sisters" in China, that we very seriously considered submitting for earlier this week but did not, passed away just a few days ago--the very day another family submitted their letter of intent to adopt her--due to her own heart issues, only one week after her file made it to the USA. Other siblings of Jordan's from his foster home are no longer with us, with their hearts healed and whole with Jesus. 

So in reality, what do we have to complain about? Oh goodness, how terrible to live five minutes from the best children's hospital outside Chicago? And an ambulance makes it just that much faster. Oh stars, Jordan's oxygen is in the 80s! Listen, there are heart moms out there that would love for their kids to hit sats of 50. Or even 40. What? We have to wait indefinitely for Jordan's surgery? How inconvenient. We can't schedule our vacation until we know that. There are families who go to sleep every night, wondering if their child will ever qualify for surgery, or if surgery will be able to be done "in time"...or even wake up the next morning. This is not for dramatics, friends. This is real. 

We are blessed. We don't always act like it or show it. I will be the first to admit my frustrations over the past few days haven't been a Christ-like reflection. Our son is healthy and happy. His lungs just work a little harder sometimes, and we have to be extra careful with colds and teething and other aggravations to them, but they are fixable. This is not to say we won't be having a conversation with Jordan's doctor to see what or if something can be done sooner. But we can be patient. (I've been told it's a Fruit of the Spirit...as is self-control...which I did not point out. This is called irony, my friends.) We can be understanding. We can accept answers we may not want to hear...because we all want what's best for Jordan. 

Tonight, before I left the hospital, we snapped a picture of one of our favorite books we read to Jordan. He knows it well enough to "read" it himself by now as it's part of our bedtime routine. It's called The Story I'll Tell, and I'm sure I've talked about it before. It tells the story of a family adopting a little boy from China, and the different, adventurous ways they explain how he came home...ending with the truth, because--as the book says--that's a beautiful story too. It also doesn't gloss over the trauma of adoption, and since Jordan can't actually read we improvise some of the ending about his homecoming (see here). I cannot recommend this book highly enough, especially because there are so few books written about boys' adoptions from China. But we know that it's not enough to tell him his history. And right now, there are three verses that come to mind. I know some people claim a life verse, but I tend to go with situational. Life changes too frequently. Right now, it's these:

I have stored up your word in my heart, that I might not sin against you. Psalm 119:11 

*This is why we read, study, and memorize God's word. 

For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:8-9

*God is God. I am not. Plain and simple. 

Hear, O Israel: The LORD our God, the LORD is one....And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. Deut. 6: 4, 6-7

*This. This is our task. It is our responsibility to teach Jordan his heritage, to tell him the story of his birth and adoption. But ultimately it's our responsibility to pass on our faith, his heavenly heritage: the story of God's adoption of us with the hope that someday Jordan will embrace that as his own--doubly adopted.  Jordan is little, and doesn't always understand, but he is watching us and our reactions. That's something to keep in our peripheral as we proceed in the future. To remember that, in our earthly perspective, in the scheme of things? These little blips? To check our reactions. People are watching us. And we are thankful for our healthy son, who just needs some extra help sometimes. 

NAM2016: Six Months In

It has been a very long day. Of course, since I'm a glutton for punishment, yesterday I spent cleaning out Jordan's room and put away all of Jordan's summer clothes that just don't fit plus his Gotcha Day outfit and the toys and bottle he came with. Yes, the bottle he came to us with. The one that is in almost every single one of our China pictures, plus probably most of the photos from the first months home. Yes, we both cried when I put it in the box (but for different reasons). So really, I did not prepare well emotionally (or physically) to get through today.

And if you had told me I would be writing about our six month anniversary of the day we became a family of three from a hospital room, I probably wouldn't have believed you. Although we've known this testing would be coming and expected it, it's one thing to anticipate and push it aside and another completely to be sitting in an uncomfortable chair with interruptions for chest x-rays and vitals and meds. Derek is actually in the comfortable chair. I'm on the couch that pulls out into a bed, but it isn't quite long enough to sit on comfortably. Our room is actually really nice--so I shouldn't complain about anything except for my height not quite working to my advantage for once.

If you've been following our Jet Landing Facebook page then you'll know that Jordan had a stent placed during his heart catheterization, fixing one of his issues. However, the other is still to be decided. Our cardiologist was very firm that he will need surgery, but they (the team of cardio surgeons) will be discussing whether to do it sooner than later. Derek and I personally would prefer sooner while he is still little and won't remember it as much, plus could hopefully bounce back quicker than if he was older. Of course, when they say later, we don't know if they mean next summer or when he's six or sixteen. The risks of waiting would be possibly allowing permanent irreparable damage to muscles, veins, and arteries in the heart but on the other hand, but they just need to evaluate if there is a benefit to waiting.

Hospital Selfie! Happy 6 Months!
 Hi Pom Pom!

We are tired. There is simply no other way to phrase it other than physically, emotionally, spiritually, mentally just exhausted. Derek says intellectually doesn't count, but I do, since Jack Sparrow also agrees. Jordan is tired, probably with all of those things too. It really been a long six months of doctors and emergency rooms and conferences and phone calls and medication updates and changes and plain old education about his heterotaxy (which Google tells me is not a word, but it is.)

We're so, so happy to have this procedure behind us. Hopefully anytime it is needed in the future it will just be a routine event (and yes, the stent will have to grow with him, so it will be needed in the future). Our questions for the most part have been answered. We're still waiting on the surgical team to determine the next course of action but at least there will be a game plan in place instead of all the balls up in the air.

But...

We signed up for this. We knew, starting with the submission of our LOI (Letter of Intent--whoa...flashback to March of this past year) that this would be a possibility. Adoption is scary. There are no guarantees. It's a leap of faith that, quite honestly, you just have to close your eyes, take a hugely deep breath, and jump. We didn't know anything about how this would end up--and we still don't.

Yet it's still so totally worth it. Never would trade it, ever. Jordan has brought more joy to our lives and those around him than we could have imagined. The number of people who have stopped us to pray for us and for him--even doctors and nurses--still astounds me. He is silly,sassy, wild, talkative, extroverted, and loves an audience. (Opposites surely do attract; or maybe this is God's sense of humor again.)

Thank you for those of you who helped us bring him home. Thank you for those of you who have supported us so far. We're only six months in, and sometimes that can seem like forever to some people...but in reality it's still just a fraction of his life that he's spent with us--and a very tumultuous six months it's been for him. And although he can't yet tell us, we hope he also agrees that our family is pretty awesome with the three of us.

Perhaps you've tuned in to the blog this month because it's National Adoption Month or to see more in depth about how our trip to China went. And maybe you're tired of hearing about our trip or our adoption. That's fine! Sometimes, we got tired of reliving it. (Is that bad to admit? I'm not sure.) But the one thing I hope that's made a difference to you, whether you are just tuning in now or you've been with us since our very first post when we were just two people recording our travels, is the impact you can have on the life of a child. Derek and I have adopted one child. Just one. We hope to support dozens more. And, welcome more into our home someday. And there are families who adopt three, six, eight, or even ten children. There are good families who foster kids who have no other options but to move on from their biological parents--whether temporarily or permanently. There are children in Syria, in the Middle East, scattered across Europe in general who have no home, no clothes, and no food. There are women--girls--who find out they're pregnant and don't know what to do and how or if to proceed with the pregnancy because they have no other options.

These are not exaggerations. These are facts. The important thing to remember is that you can do something. It doesn't have to be traveling to China. It doesn't have to be opening your home to foster care or adopting a child. It doesn't have to be permanent! It can be lunch at your local public school with some of the kids who need a role model. It can be donating some diapers to your local women's pregnancy crisis center. It can even be financially supporting a family whom you know is adopting--or has adopted in the past! But please, please, do something. I promise, you can. 

We Interrupt Our Regularly Scheduled Programming

Today's Appt. Calm. Cool. Collected. Mickey.

It's time to take a little break from our China memories. Instead, I want to take a moment and talk about our current events. Today was the appointment, as we like to refer to it, for all the marbles. As we've previously mentioned, Jordan was born with significant heart defects that were for the most part repaired in China. Sometimes, that isn't the case with international adoptions and additional or completely different diagnoses are discovered once home in America.

However, since all we really received was a 5-10 page report on his surgery, general health, and likes/dislikes (you may remember some of those here), our pediatrician and cardiologist essentially needed to set baselines that we have no history of and no way of getting. The first wave included fun things like blood work and stool samples (yippee! Derek was in charge of those) and vaccinations--which Jordan was actually more than up to date on.

First Echo: Brave boy

We are so thankful to live within five minutes of not only a children's hospital, but a children's hospital that includes an entire pediatric congenital heart defect team of very specialized doctors. They were able to get us in for a baseline echo and initial consult within a week of being home, and we're beyond thankful that paperwork we received from China matched approximately what his echo told us. That being said, we had only been home a week and had known our son less than a month. It was decided to keep things status quo and see how the next few months went with some tests spaced out in there. There were a number of things we needed to rule out and/or diagnose which is what those tests were for. He's been a trooper for every single one of them, never fighting the doctors or techs administering the tests. Don't worry, he did let us know he wasn't happy about them, but he laid as still as possible for the tests he wasn't required to be sedated for.

To date, he's received two echos, one abdominal ultrasound, one nuclear imaging liver/spleen scan, three chest x-rays (one ordered and two in ED) and a cardiac MRI. We've ruled out things for the time being such as intestinal malrotation, and diagnosed him with heterotaxy with polyspenia--but no daily prophylactic antibiotic needed! He was also diagnosed with complete abdominal situs inversus (so if he has appendicitis, it would be on his left side--organs are mirrored). Also, he's received more EKGs than we can count, because I'm pretty sure they do those like they take blood pressure for standard vitals for him.

Ultrasound Complete!

Liver/Spleen scan Recovery

Waiting for Cardiac MRI

In the meantime, his lungs don't seem to tolerate colds very well. In August and October almost two months to the day he went from the sniffles to gasping for breath, so we got our very first ambulance ride for the first visit to the ED and the for the second time we recognized what was happening much sooner and just went straight to the ED. (Insurance does cover most the ambulance ride, but we live closer and can drive faster to the hospital than waiting for an ambulance to get here.) We have some options to think about to hopefully reduce or eliminate these episodes, but we will worry about that at a later date.

Also, just as a fun little extra, this little dude also has some nearsightedness and astigmatism. Nothing too serious, but enough that he needed correction. Considering how easily he transitioned to wearing his glasses, I think it is very safe to say that he knows he needs them. His attention span and attention to detail has skyrocketed in the past few weeks. Also, he looks pretty stinking cute. He really does need them, I promise. They aren't just for aesthetics. 

But. This is the day we have been waiting for since we got back from China. Not to sound overly dramatic, but really, as mentioned, this one was for all the marbles. All of the tests, procedures, and visits have led up to this point to know how we will proceed with Jordan's heart. We've been home long enough to know his patterns, his general health, etc. He's comfortable with us, and completely comfortable with the doctors (makes himself right at home). And so, the doctors and we scheduled today's appointments to set up a game plan for the future. 

Realistically, we know that the majority of his issues are considered repaired and are truly thankful for that. The concern is the existing condition of extra blood flow backing up in his lungs, (pulmonary hypertension) which is why all of these tests have led our cardiac team (we went from one doctor to several over the past few months) to decide to do a heart catheterization on Wednesday, November 9. In theory, this test should take about two hours, but due to some extra findings in his cardiac MRI it may need to be a little longer than that and require and overnight stay. One of the openings for the deoxygenated blood is too small, which does not allow it to return to the lungs to reoxygenate. If needed, this would be resolved with a stent. The surprise issue we found out today was that he has some blood pooling because of his mitral valve being too small. This does actually line up with the report we received from China, which is kind of a relief knowing that it is not a new development. However, the news we weren't expecting or hoping for is that if this is severe enough Jordan will require open heart surgery to repair this. Our hope of course, is that this isn't or won't actually be as severe as possibly indicated on the MRI. However, if it isn't resolved now, it will most likely need to be repaired in the future.

Right now, he is sleeping, and currently also wearing a 24 hour heart monitor to measure how his heart is performing. A few blips on today's EKG along with some of the other test results indicated there was a need to monitor this. Again, our hope is that this will resolve itself or that it isn't an issue at all. Otherwise, this would be an indicator of needing a pacemaker because he would be at a higher risk for a complete heart block.

Honestly?

About half of these things we anticipated. We assumed there will be a good chance he will need a stent. We knew that a pacemaker would be a possibility. The stent would require some routine maintenance as his body grows and adjusts, and a pacemaker would limit some of his activities as he gets older (such as contact sports) but if it keeps our son healthy and well that's fine with us! The shocker was thinking we may be facing major surgery before the year end. This time I will be a bit dramatic, but heart surgery isn't like getting your big toe operated on. This is his heart. You can take or leave a big toe (maybe have some balance issues but that's it). You need your heart to survive.

A few weeks ago, I posted on Instagram this picture of our silly, independent, energetic, little boy with a severe case of FOMO. All of those things I posted still hold true. He can and will run and jump (maybe work on his balance a little, but that's neither here nor there). We have an excellent team of doctors who proved over and over to us today and in the past few months that they don't just care about him as a patient but as a little person. Most of all, we have a God who can heal all things and knows what is best for Jordan. Please pray with us that his catheterization goes well, that any issues that can be fixed that day will be, that if we do spend the night in the hospital (required if any issues are corrected or extra testing done) we will get rest, and that if heart surgery is needed that God will guide the surgeons' hands, and most of all for bravery for our little boy.

In times of anxiety and uncertainty, I wanted to share what I turn to for peace and comfort. It's not found in the Bible, but is written with scriptural references. I generally use it for myself, but we can also substitute Jordan's name in there as well. I hope you'll find comfort in it l should you need it too.

Heidelberg Catechism, Lord's Day 1, Q&A 1:

Q. What is your only comfort in life death?

A. That I am not my own but belong with body and soul, both in life and in death, to my faithful Savior Jesus Christ.

He has fully paid for all my sins with his precious blood, and has set me free from the tyranny of the devil.

He also watches over me in such a way that not a hair can fall from my head without the will of my Father in heaven; in fact, all things must work together for my salvation. 

Therefore, by his Holy Spirit, he also assures me of eternal life, and makes me heartily willing and ready from now on to live for him.

1.1 Cor 6:19, 20. 2.Rom 14:7-9. 3.1 Cor 3:23; Tit 2:14. 4.1 Pet 1:18, 19; 1 Jn 1:7; 2:2. 5.Jn 8:34-36; Heb 2:14, 15; 1 Jn 3:8. 6.Jn 6:39, 40; 10:27-30; 2 Thess 3:3; 1 Pet 1:5. 7.Mt 10:29-31; Lk 21:16-18. 8.Rom 8:28. 9.Rom 8:15, 16; 2 Cor 1:21, 22; 5:5; Eph 1:13, 14. 10.Rom 8:14.