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. 

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.