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.

Adoption Doesn't End at the Airport

Leaving Hong Kong

Earlier this week I shared about the medical side of our life with Jet. Now, we wanted to share about the adoption side of our life this past year. In our last post I gave a quick cardiology lesson at the beginning; this one will have a quick grammar lesson so that there's no confusion. Jet was adopted, past tense. He is a member of our family, present tense. However, today I'm not referring to adoption as a verb. In this post, I'm referring to adoption as a noun. This is a hard post to write, because it's hard to admit that while things seemed to be going well, in real life it's been probably the hardest year of our lives.

Many of you are familiar with our story, either through this blog, through our Jet Landing Facebook page, or through our video testimony at church. In no way are we downplaying our gratitude for the help and support we received while we were in China as well as that first month home. We had people clean our house while we were gone, dry cleaning dropped off and picked up, the refrigerator stocked, freezer meals left for us plus meals dropped off for weeks, calls and texts checking in...our every need was met.

The first hours home

In a way, adoption does end at the airport, just like labor ends in delivery. You come home with your new baby, you celebrate, there's balloons, you have friends and family help, and eventually that tapers off as your life settles into your new routine. Except, with some adoptions (a blanket statement covering special needs adoptions, international adoptions, adoptions of older children, or even foster care placements), the time it takes to establish a new routine is seemingly endless. I realize that everyone's experience upon arriving home is different, so I'll just speak from our own experience.

One thing happened though during that first month still stands out for me. We have friends who came home with their son approximately a year earlier than we did, and she didn't sign up for a day on the ever popular MealTrain site. Instead, she just texted and said "We'll bring you a meal in a few months. Trust me, you'll understand." I was perplexed, but I wasn't going to turn down a free meal. I'm not crazy.

As most of you know, we adopted a child with severe congenital heart disease (CHD). His file said repaired. While we knew there would be tests and routine monitoring, in no way did we expect it to consume our daily life. I still couldn't tell you if this was an "ignorance is bliss" or if we were just not ready to admit the magnitude of a special needs adoption, but we truly believed the initial tests and appointments would taper off once the "newness" of everything wore off. In fact, for about two months following our homecoming, I was seriously regretting turning down a promotion and quitting my job. We spent our summer slowly but surely exposing Jordan to his new life with us, feeling quite confident in our abilities as parents, and as parents of an adopted special needs child, but then real life set in. With a vengeance. And then twice after we had been home for more than a couple months that adoptive family I referred to earlier brought us meals on two separate occasions. And both times, I got it. I totally understood what she meant. The novelty had seemingly worn off, and we were floundering.

This past fall was incredibly hard for our family, as I was suffering from acute anxiety and random panic attacks triggered by medications that were supposed to help the anxiety. Jordan was sick or in the hospital or having tests done weekly with seemingly no end in site. Derek was just trying to hold the fort together during an incredibly stressful time at work. Altogether, I felt like an adoptive mom failure, and I didn't feel I could ask for help. I couldn't relate to friends' with kids of the same age because we were going through completely different experiences, and other adoptive moms (and dads) seemingly had it all together (at least per social media). I also didn't want to exhaust our "resources" for help--our small groups, friends, and family--which I now know was and has been pointed out to me as ridiculous. It was especially hard because I wanted to be involved in so many activities and groups and do all the things that I was used to doing BC (before children), but either Jet was ill or had a test or doctor's appointment, or I physically and/or mentally
was unable to and didn't want to admit it.

A few weeks ago, while Jet was in the hospital once again (this time with pneumonia of all things), I mentioned to some close friends that I just wanted things to be normal again, and one particular friend who has dealt with similar anxiety issues just said, quite bluntly, "They won't. But you'll find your new normal." She was right. It's taken us months to establish a routine--and that routine actually was learning to not have a routine. We take everything day by day now, sometimes hour by hour. We've learned to just swallow our pride, because really that was the only thing holding us back from asking for more help, and tell people what we need and when. Those two meals that my adoptive mom friend had brought? I will never be able to express how perfectly timed they were. I now know what she was referring to, when she said I would understand.

Showing his brave muscles!

Very soon, Jet will be having his open heart surgery so we will once again be leaning on our friends, family, and church family for support. In fact, quite often adoptive families face the exact same struggles with bonding, night terrors, and clinginess all over again if their child needs some sort of major medical intervention within the first year of being home. Think about it: once again, as I mentioned months ago, we are not the ones who will be most affected here. As unsure and nervous as Derek and I are, even with the major life changes and adjustments we've made over this last year, we understand what's happening. Jet does not. He's just two years old. In this past year, he left one family, joined another, flew around the world to a new home, became comfortable with them despite the fact that he's been subjected to multiple tests and medical interventions, and now will be having surgery in just a few short days. That's a lot for anyone to take in, but for a two year old, it can be downright terrifying.

So here we are, more than nine months since arriving home from the airport. And we are just now learning how to respond when people offer help. I'm trying to give myself more grace, which I always felt was an overused phrase but it fits, because yes, I do not have a normal child, and yes, it is okay to ask for help. (And isn't normal overrated anyway?) And thankfully, we have a great support system in place now. We simply don't know what the next few weeks will bring. We pray that Jet will be in the hospital for less than a week and fully recovered by May! Realistically though, we know that we may need help with meals, with the dog (why do we have one again?), with help around the house, etc. We know we have a church family praying for us, and most of all praying for Jet and his surgery and recovery. We know that all we need to do is ask, and someone will be there.

If you're an adoptive parent, especially one with a child who has significant health needs, and you've felt this way, find someone who understands. Talk to them. A friend, a therapist, a counselor, someone who has a child with the same condition(s) as yours or someone who has gone through similar things. Find what works for you. It's normal. It's not embarrassing. It's nothing you should be ashamed of. Maybe your church has a ministry that can connect you to someone. Maybe you can find a church in your area that has this type of ministry if you aren't sure. Derek and I so happen to attend a church that has a ministry such as this, and we know that we have the support of our friends and family as well.

If you're a friend of one of these adoptive parents? Call them. Text them. Ask what they need. In some cases, just do it. Bring the coffee. Or a donut. (Once, a friend brought me two chocolate donuts on her way home from work after an especially hard day. It was awesome.) Educate yourselves on adoption. I recommend reading The Connected Child, just so you can empathize with what they are going through. They may say they don't need help, so sometimes you just have to be forceful (but not too forceful--don't break any laws). Also understand that they may not be able to go out and meet at the park or attend Tuesday mornings regularly or leave their kid with a sitter. Chances are, they are secretly wanting help, but don't know how to ask. Or when. Or even for what.

The care of orphans and vulnerable children is so important, but we can't forget to support the families who do so. 

As adoptive parents, Derek and I have learned a lot since we arrived home. Our faith has grown, our ability to communicate with each other and work as a team has grown, and I'm pretty sure we might be able to pass a few med school exams. People often say adoption is a process. Believe me, it was! I have a file cabinet full of paperwork to prove it. But it still is a process. It didn't end once we were home from the airport. It didn't end after we were home for a few months. For us, it still hasn't ended. Yet even after everything, the blessings far outnumber the negatives, and as long as God calls us to it, we can't wait to do it all over again.

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

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.