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.

NAM2016: Our Story Days 4-5 Hong Kong-Beijing

I feel like I should be dramatic while writing this and say "Where did we last leave the main characters of our story? Oh yes, about to board Cathay Pacific Flight 390 from Hong Kong to Beijing." But I won't. I'll just say we checked in to our flight, our luggage did NOT weigh too much, and I was the only blonde in the airport in our general vicinity. That's okay though, blonde hair is awesome.

After an uneventful security screening and on-time boarding (what?), we settled into our seats to enjoy a much shorter flight. Ironically, in the past flying for more than two or so hours usually gets me a little nervous. This flight was about three and a half--and flew by! (HA!) It could have been the jet lag, it could have been the amazing amenities on the plane itself, or it could have been our previous sixteen hour flight the day before that put it into perspective. Yeah, it was probably that.



Since it was morning, and we were all kinds of messed up, I decided to go for a second breakfast. Neither of us remember what Derek chose for breakfast--probably something healthy, light, and Western, but I was feeling so good that I decided to full-on immerse myself in the Asian culture and choose their Asian breakfast option. After all, all of the books and blogs and facebook groups told me this is most likely what my son has been eating for breakfast his whole life, so why shouldn't I give it a try? When I told the flight attendant my choice, she looked at me very strangely. "You want...the congee?" Yes please, the chicken congee. "It is...Asian? You know this?" Yes ma'am, thank you" I said with a smile. Friends, this is what it looked like. Congee is basically watery, boiled down, rice porridge that may have bits of egg and chicken (or pork, or can be plain). It looked...as appetizing as that picture shows. I did have a few bites, and truly it was not bad. Derek couldn't even watch me eat it or look at the tray until the flight attendant took it away. Honestly though, this was a fantastic way to pass an hour of a flight: How many times can you gross out your husband just by eating your breakfast? I will admit I have never made this since being home, and Jet doesn't seem to miss it. Maybe he does, I don't know, but he hasn't told me.

The Beijing airport was just like any other airport you've probably been in, except cleaner and in our opinion, more organized. In fact, all of the airports in China were similarly structured and had the absolute cleanest public restrooms I have ever seen. (This is very important to me.) Once we landed, we boarded a transport train to take us from our gate to wherever our luggage was. This is an actual photo, taken by Derek at about his eye level. I also would have taken a picture, but I had a woman actually leaning on me. I don't believe for support; it may have just been that crowded or I seemed approachable. (FYI, that's not true. If you look up personal space issues in the dictionary you'll probably see my picture.)

Once we got our luggage, we headed off to find someone from our agency who we were told would pick us up and drive us to our hotel. Since we did not take a photo of the people all waiting at the gate for pick ups, let me paint this picture for you. Before I do that, I just want to say there have been actual studies done by reputable statisticians that note that to each race, other races look the same. I'm sorry if that offends you, but I do believe there's some truth to that and have discussed it with my non-Caucasian friends who also agree. Plus, the color of good fortune or good luck in China is red. Now that I've cleared those two things up, Derek and I turned the corner with all of our luggage and see about a hundred people who to us look very similar, all waving some sort of red or white with red on it sign. Some of the signs were very professional with the passengers' names (we're assuming, we don't read or speak Mandarin) and others were handwritten.

In order to find our agency rep, we had to walk past all of these people waving signs and staring at us, because for obvious reasons, we stuck out. This is where Derek was actually starting to get nervous. Here we are, with absolutely no knowledge of the language, and no way to contact anyone easily ( as our phones had yet to start working again after turning them back on). We finally, finally found someone holding a piece of paper with CCAI written on it with a Sharpie marker holding a small red pennant type flag also saying CCAI. Hooray! We found our rep.

Derek, probably praying we would end up at hotel. 

Except, this was not our rep. This gentleman spoke absolutely no English. This was, I think I can now say at that point, Derek's worst fear being realized. The man confirmed somehow that we were who we said we were, and handed us his cell phone. Apparently, our actual agency rep was with two other families who arrived a few days before us and they were taking some time sightseeing. He assured us that this man would get us a cab, the fare would be paid, and we would end up at our hotel. This was, by very definition, blind faith.

What did we do? We went with it! What else could we do? In retrospect, we are very thankful we were with an agency who took such good care of us while we were in country because while we were there and since being home have heard horror stories of families being taken advantage of. This was, yet another example of the small ways God was reassuring us that we would be taken care of. The cab ride was interesting. Since we were in a big city we could almost pretend we were in the States, but the architecture, signs, and even the cars and pedestrians made it clear we weren't in Kansas anymore.

This was the best I could do leaving the airport.

Apartments

Not sure why we took this, but we did...

Our time in Beijing was only about twenty four hours. We checked into our hotel, ordered room service, did a little bit of walking, had dinner, and went to bed. We did zero sightseeing in Beijing except for walking around the area of the hotel.

Sunworld Dynasty

Romantic

In case you were curious, we stayed at the Sunworld Dynasty Hotel in Beijing. All of the hotels CCAI puts their families up in are at least 4 star, but the majority were 5 star. We had truly made it in life, clearly. Fun fact: for every hotel we stayed in, all of the bathrooms had clear glass windows open to the room with giant soaking tubs and gigantic showers. This is generally something that you see at like...all inclusive resorts in Cabo or Jamaica. This was unexpected here. We did not order nor did we expect the honeymoon suite at every hotel we stayed at, but apparently it was just standard. Had we been feeling up to it, we were within walking distance to the Forbidden City and Tiananmen Square, but truly just wanted to relax. We knew the next few weeks would be busy with travel and meeting our son, and our main priority for being there wasn't for sightseeing.

After a gourmet meal of room service chicken nuggets and fries (neither of us were feeling super great yet at that point because of no sleep and not having a regular meal schedule--we are very particular about that--we did venture off to do some exploring around the area. We also had received another call from our Beijing rep (who was stuck in traffic) and he advised us to find a bank to change over a not small but not large amount of our USD to RMB, so at that point I headed back to sleep and Derek searched out a bank. He located one around the corner and down a ways but of course it closed around 6 p.m. and it was 6:30 p.m. at that point. We decided to eat dinner at the buffet and then call it a night. The inside of the hotel was absolutely beautiful by the way. Everything in China--even if it was a "chain" was ornate and unique to each location.

Buffet from above

Indoor courtyard

Lobby

Sunday morning we woke up feeling pretty refreshed, and again excited to get this show on the road. I would just like to say the people who tell you that Beijing is dirty and smoggy? We did not experience that at all. Beautiful, clear blue sky both days and sunshine. It really felt like walking down Michigan Avenue in Chicago. We did some exploring around the area and found it to not be very crowded at all. Whether this was because it was still early (9ish a.m.) or a Sunday we don't know. We found out there was a (state-approved) church a little bit of a walk from the hotel but did not want to get too close in case of offending anyone there. However, the architecture was beautiful so I still snapped a quick photo. We did see many larger stores, with sports paraphernalia AND an Apple store, very exciting. On the lower levels of these stores you might be able to see tiny little shops that sold specifically to tourists, some of them very insistently. Considering we were Americans we were very clearly tourists, and more than once had a hard time shaking them off. (The shopper in me did want to stop, because there were many pretty things like scarves, jewelry, carvings, etc., but I knew we wanted to hold out to make sure we got authentic items.) 

We did finally find the bank Derek had discovered the night before. Hopefully I didn't break any laws by taking a photo, but it was a very interesting experience. Once again, the language barrier was an issue and the people working at this particular bank either spoke very little English or none at all, so there was a lot of gesturing and writing. Ideally, our guide would have been with us but that wasn't a possibility Sunday morning either (since he was making sure our transportation back to the Beijing airport was lined up, etc...I don't want anyone thinking he wasn't doing his job! There were a lot of behind the scenes things the guides took care of for the families so that we had as stress free experience as possible and could spend the weeks in country focusing on our children.) Also, the exchange rate is significantly different, so the USD we changed over seemed like a small amount but both of us were nervous walking back to the hotel carrying such a huge amount of RMB. 

We made it, safely, and were able to check out of our hotel room and finally meet the other two families who were traveling with us. Both families had previously adopted from China and had brought their daughters with them, which I'm sure was a very special experience for all of them. The one family was also adopting a little boy like us, and the other was adopting a twelve-year old girl about to age out of the system. As we were walking up to meet then, our faces must have been very transparent, because (I can't remember who it was--Jennifer or Rebecca maybe you'll remember) one of the moms took one look at us and said "first time?" and we said yes...and they said "first child?" And again, we said yes. Clearly, we must not have looked as confident as we were feeling but we were so thankful to be traveling with these families who had not only adopted from China before, but also had used the same agency and were believers. What a relief for us! Shortly after introductions, and a quick prayer, it was off to the airport again to fly a much shorter trip to Zhengzhou, where we would all meet our children the next day! 

Before I end this incredibly long description of our 24 hour whirlwind in Beijing, I wanted to also say Derek and I do have one regret about not touring anything in Beijing. You see, Jet was being cared for in a private foster home called Morning Star, located in Beijing. We were under the impression we would not be able to visit him or the facility since his "home" city and provincial orphanage was Pingdingshan, Zhengzhou. However, it wasn't until about a month or so ago that we discovered we could have toured the facility and met his precious Ayi who cared and loved him as her own son. If you are interested in Morning Star or would like to support their foundation, I would encourage you to visit their website here and check it out. Not only does your financial support go toward sponsoring the 10-12 babies in need of lifesaving heart surgery, medication, and care, you can also support family preservation by providing lifesaving heart surgery that parents in China simply cannot afford (and subsequently would be face with very hard decisions, including abandoning their child.) Please, please check it out. Without this organization, and this is not an exaggeration, we truly do not believe our son would be alive today. 

Thanks for sticking with us so far. I promise, the fun stuff is coming soon! 

NAM2016: Our Story Days 0-3: Peoria-Chicago-Hong Kong

Does this thing still work? Does anyone read this? Has it actually been six months since we traveled? Was anyone not aware that we adopted a child from China? Show of hands if anyone is tired of hearing about it! (I can't see you, so I'm still going to write.)

In case you didn't know, November is Adoption Awareness Month. I have basically taken a six month break from our blogging because there really just hasn't been time...but I could also be honest and say I was feeling lazy when I did actually have the time. However, it's important to us to get out our story of Jet's adoption--if not for you all but for him someday, plus talk about our issues that have popped up since.

I"ll just start on Wednesday, May 25th, which was the day before we left. Previously, we had decided to have everything packed and ready to go the day before that--so two whole days in advance. This is not generally how we travel. We do a lot of last minute trips and have gotten pretty good at throwing things in a suitcase and leaving a half hour later, so in retrospect this was not actually a good plan. We thought this would leave us a free day of doing fun things, but nerves about the upcoming trip plus about five separate runs to Walgreens left us with very little time. For example, I suddenly insisted we needed to bring eight toothbrushes--one for each of us, for each hotel. Derek loves me, and my neuroses, so he willingly packed them (but didn't use them but we'll get to that later).

But, J's room was done, or at least the important things were. His blanket was finished. The Ikea chair was assembled and we stayed married. Derek actually built the crib by hand--not just ordered from JC Penney because again, I am particular and he loves me. I will say the crib is amazing. If he didn't love engineering, he could totally go into the crib-making business. (We didn't take a picture of the whole room because we truly just forgot, but this was close enough.)

On Thursday, after a good night's sleep for both of us provided only by the grace of God, we left the house around 5am to head to the PIA for our flight to O'Hare. On the way there, I was actually feeling calm, so calm it was eerie. Full disclosure, I do take special "airplane pills" but I typically don't take them until we get to the airport and park the car. As we were driving on our short trip to the airport we both noticed there was a storm brewing but nothing terrible looking. Considering we were 90 minutes early there was plenty of time for it to blow over. 

Except it didn't. 

As we were parking our car, Derek got a text from a friend inside that said something to the effect of "Your flight's been cancelled!!!" with a bunch of--no lie--laughing emojis. At this point, our luggage was already out of the car, and honestly, we just assumed it was a joke. A bad joke, but still a joke. 

It wasn't. 

And also, just for future reference, the emojis between iPhones and Androids are different. 

I'm not going to lie--skipping the flight in the little puddle jumper from Peoria to O'Hare wasn't a hardship for me. If anything, I could even claim it as an answer to prayer--but that's probably a reach. We ended up going back home because it was so early even the car rental places in the airport were closed (again, thanks Peoria). I went back to bed for a few hours and Derek got McDonald's breakfast before we headed back to the airport to rent a car to drive up to O'Hare. It was an hybrid car, but beggars can't be choosers (Derek) and off we went!

After we figured out how to turn it on and leave the lot

Once we made it to O'Hare, we got to navigate the rental return mall and the shuttle bus system. At that point, we just wanted to get to our terminal because it was 11:30 and we were hungry...and then we realized the TSA line was even crazier than what we saw on the news. Does anyone remember what the lines were like Memorial Day weekend of May 2016? Yes, we were there. Four hours later, we arrived at our gate. Yes, four hours. Thankfully, our flight was delayed and so we didn't miss our boarding.

Chicago-Hong Kong

The flight was uneventful, but long. Personally, I loved the dinner they provided and Derek did not...but neither of us liked the lunch? Breakfast? Not exactly sure what the second meal was supposed to be. Does anyone know how they figure out what to serve for airplane meals? Here is where the time difference starts to confuse. We took off around 4:30 p.m. on a Thursday afternoon in Chicago, and after a sixteen hour flight landed in Hong Kong around 10:30 p.m. Friday night. Also, when I say it was a long flight? I mean they tacked on a couple extra hours. We were scheduled to land around 8:30 p.m., not 10:30. At this point, we were not even considering our purpose for this trip. We are sorry Jet, but our number one goal was to land, get through customs, and find food somewhere. Anywhere. And sleep.

Airport view from the room

We did finally make it through customs and checked into our hotel, which was attached to the airport. Our bellhop practically ran through the airport while we huffed and puffed through the humidity and jet lag--not a great combo. (Eastern buildings are not air-conditioned like our Western ones.) I purposely had booked a little bit nicer room (bigger) just because I thought we would have more time to relax. That was not the case, and I also apparently didn't book just a "little" bit nicer room...I booked some top level suite or something. Fail. Oh well. It came with a bowl of fruit and a minibar, and since we were both exhausted and sick we made do with that and went to bed to hopefully get some sleep before we were up and at 'em at 6 a.m. for our flight to Beijing. 

My husband, whom I love very much, is one of those people who can fall asleep anytime, anywhere, within seconds of head on pillow. I am the polar opposite of this and additionally, when I'm feeling tired and/or run down, anxiety tends to get the better of me. That calm feeling I was experiencing up until that point flew right out the window. Thankfully, since we did have the giant upgraded room, I got up and went into the living room so that I didn't disturb him and immediately started texting friends, since it was the middle of the day for them although middle of the night for me. (Time difference is thirteen hours ahead. Little trick--add one to your current time, and flip-flop the AM/PM.) 

This is when the worry set in. What if our son had more severe needs than disclosed? What if they made a mistake and he wasn't supposed to be ours? What if WE were making a mistake? What if, what if, what if? Having supportive, Godly friends whom I know were taking time out of their busy Fridays to spend time in prayer for me helped calm me down enough to get some rest, and I will never be able to adequately express my thanks to them. I didn't sleep exactly, but had a calm mind and spirit, knowing that God would be with us throughout the trip and that we were doing what He wanted us to do. On top of that, upon opening my FirstFive (awesome app btw if you haven't looked into it), this was my devotional for that morning. Providential. 

Sadly, we didn't get to see much of Hong Kong. It was cloudy and hazy, but from what we could see of the island the airport was on, beautiful. We would love to visit someday. We took a few more pictures that pretty much all look the same as this one, and enjoyed our concierge level breakfast. We looked very out of place with our casual travel clothes mixed with the businessmen and women in the breakfast area. Oh well. We grabbed our luggage and this time took a much more leisurely stroll from the hotel to our check-in counter for our airline. Hong Kong is a good mix of both Western and Eastern cultures, so we weren't completely out of our element here and the airport was so incredibly easy to navigate. And, it was attached to a mall. Perfect! We took one last selfie before heading toward our gate (and getting McDonald's for breakfast...theme?). For very little sleep, incredible jet lag, and nerves, I have to say we looked pretty good! Even though this seemed like it was the last leg of the trip, it was still just the very beginning. At this point though, we were excited to get to Beijing, and to get this show on the road to meet our son!

Ok, so my eyebrow was only a LITTLE bit up. It's fne. 

And last, but not least, here is a photo of Derek, holding his carry on which was full of things for our son. Our good friends Russ and Kel gave this to us for a baby shower gift, and we couldn't have brought a more perfect bag to carry things for our own little Jet!

Off we go!

...to be continued...