Medical update

We have had one crazy week! It seemed like our entire week centered around all things medical. Medical procedures...medical treatments...medical appointments...medical complications...medical plans. It feels like we had a crash course in pediatric cardiology and cardiothoracic surgery. It's enough to make my head spin at this point!

A lot of people have asked about how Kai did this week, so I want to give a quick (relatively speaking, of course!) medical update. However, so not to only focus on his medical condition, I also want to give some update on how he's doing in general.

Ok, first the medical side of things...

Kai is diagnosed with multiple heart and pulmonary defects. The primary defects that we are concerned about immediately are the hypoplastic right heart syndrome/pulmonary atresia. This means that his right ventricle is non-functioning (the dr described it as a small  muscular mass, not a chamber as it should be), his tricuspid valve is too underdeveloped to function, and he is completely missing his pulmonary valve. Because of these heart defects, Kai was having pressure issues in his right atrium. This was causing residual problems with his left atrium and his liver. His procedures Monday were to help alleviate this. Fortunately, the procedures went well and he was such a tough kid! He has had some complications from the procedure, but he is doing well now. We think these pressure issues are resolved and should be "good to go"!

Our medical plan was to take care of these pressure issues and then schedule his final open heart surgery. But...we found some other issues that we were not aware of and definitely were not planning on. As we met with the surgeon, he showed us pictures of Kai's heart...and told us that our medical/surgical plan will now need to change. 

Kai's pulmonary artery, which has the job of carrying deoxygenated from the heart to the lungs, has a fairly large "kink" in it. Here is what it a normal heart looks like:

Here is what Kai's pulmonary artery looks like:

Do you see the difference in the pulmonary arteries?! These are supposed to be straight tubes, not bent in half.  With having pulmonary atresia, his little heart already has a tough time getting deoxygenated blood to his lungs. This makes it even trickier! We also found out that he has coronary artery fistulae. Coronary artery fistulae is a congenital condition where the coronary artery abnormally attaches to another blood vessel or heart chamber. Because all of this wasn't enough, we also found out that, because of the combination of Kai's heart defects, his red and blue blood does not have a way to mix. So, the surgeons need to remove part of his atrial wall. Essentially, they will be creating an atrial septal defect (ASD), which is a congenital heart defect where there is a hole between the right and left atrium. Here is what a ASD looks like. The location with labeled with the number 4 is where a hole will be created.

In a normal heart, this would need to be repaired. But, because of how his heart functions, Kai needs this defect....so because of his heart defects, surgeons are going to create another heart defect! Can you see why my head is spinning?!

All of this means that we are looking at more surgeries than we expected. His first open heart surgery will be to make the repairs mentioned above. The following surgery will be the more major procedure. It will be to bypass the entire right chambers of his heart.

I know we have a long road ahead of us...but this kiddo is such an inspiration.  We've been told on a few occasions that it is a miracle that he is alive. Kiddos with this number of defects and the degree of severity of his defects typically don't survive. Not only is he alive, but he is living...really living!

Here is just a small sample of pictures and videos that show who he is. He is so much more than his heart defects!

He LOVES to sing:

Well Behaved Rabbit (Mandarin)

Twinkle, Twinkle Little Star

He LOVES to sing about Jesus:

Jesus Loves Me

Happy Birthday to Jesus

He LOVES to sing with his brother:

Two Little Tigers (Mandarin)

Can you tell that he enjoys singing?! He also loves hiking, making puzzles, praying, Sam, dogs... and he has an abnormal obsession with broccoli! Here are just a few pictures of this boy who is full of life!

adoption video

Here is just a super short post...

Click here to see a video of our adoption (China, October 2014)

What a difference a week makes

So, in my last post I had to write about the reality that comes with the adoption process. There is a lot of grieving that takes place...and Kai experienced it intensely. We were so excited to see him because we had been looking at his pictures since March. We felt like we already knew him and were living life each day with him in our hearts and minds. He, however, knew nothing of us. He knew only of his facility and the nannies who cared for him. We didn't look like anyone he had ever seen; we didn't speak the same language; we didn't do things the same as the nannies. Realizing that he was leaving them to live with complete strangers was tough. But, it was good. It was good for him to be able to mourn that loss and for us to be part of that with him. It was good for us to see that he had formed strong bonds with the nannies that had cared for him and that he cherished those relationships. Honestly, I would have been more concerned if he showed no emotion at all! We know that his grieving is not done by any means. I know that someday he will grieve not knowing who is birth parents (and not being able to ever find out who they are), where he was born, and so on. It is hard to watch him grieve, but it is necessary for him to go through. I came home from China to a great surprise...and a great reminder (thanks, Christy Boeve!):

But, for now, a week has made all the difference in the world. He is a totally different kiddo than he was last week at this time. His tears and screaming have been replaced by laughing and giggles. His eyes literally twinkle. He sings and sings and sings. I have to try to video him singing "Twinkle, Twinkle Little Star". This was a song that he came to us knowing in English and it melts my heart every time he belts it out. His name, Kai Xin, means "happy"; there could not be a more perfect name for him. Don't get me wrong...he is still a 2 year old boy who is going to test the limits. But, he is just a riot. God has given him such a magnetic personality. You can't help but fall in love with him!

This little guy has been through so much, especially considering his medical issues. We know that when he has had his heart surgeries he was there alone in the hospital most of the time. So, I can only imagine that he associates hospitals and doctors with pain and being alone. I know I would! Well, one of our turning points came last week at his medical exam in Guangzhou.  For part of his exam, Chris and I were not allowed to come in the room. When he was brought back out, he kept saying, "Mama, Baba. Mama, Baba" over and over again.  I think he was surprised that we were still there, not just dropping him off with doctors to have a procedure done. He needs consistency to know that we will be there for him and that we will meet his needs. I think as he realizes that we are there for him, he trusts us more and more!

 Thanks for all of the encouragement and prayers as we welcomed Kai and he welcomed us!

And, of course, I have some more pics to share!

Adjusting and bonding

I have had several people message me-particularly other adoptive families- wondering how things are going since our Gotcha Day. Well, last Monday through Thursday looked like this...

Monday through Thursday had tons of smiles and laughter. Kai wanted to do everything Sam was doing and, literally, copied everything Sam did (fortunately, Sam was a really good sport about it!). He called Chris baba and me mama. Things were looking pretty good....really, too good. Chris and I said that there could be no way that the adjusting and bonding would go this well (although, secretly I know that be both wished it would!).

Then Friday happened. Things unraveled in an instant. We witnessed a complete 180 degree switch. We knew from the moment Kai woke up that morning that we were going to be in for a change.
 As soon as a saw me Friday morning he began screaming, refused to change his clothes, refused to eat, and cried all day. When I say cried all day, I mean cried ALL day!  He also began pulling out his hair while wailing and flailing on the ground. His little heart could not take it, emotionally or physically. He would sob so hard he would cough and gag. His little heart would race so fast and his little lips would turn blue.

To keep my sanity, I took him out to the park for a walk - there I was, a blond American lady in the park with a Chinese kid with dirty pajamas, snot running down his face, a bald patch on his head, crying and screaming at the top of his lungs. Needless to say, I had several people stop and stare!

This was probably the day that he realized that he was not going back to the orphanage or foster facility. Up until that point, we were probably fun and novel to be with, but now he knew that this was not a temporary arrangement. He had nannies and other children that he was leaving behind. As much as we know that we can offer him a loving family, great medical resources, structure and stability, he only knows his nannies and facility. He was grieving that loss HARD. We have been preparing ourselves for this for a long time, knowing that adoption always involves loss. But, it was very difficult for us, knowing how to console him and help him trust us - along with trying to keep our sanity!

Our past few days have been similar to this - a whole lot of crying, screaming, tantrums (and that includes me - I ended up calling my mom in tears last night!). We have worked really hard on being affirming, loving, calm, consistent, and structured with him. Even with having his physical and TB blood test today, he has been doing well. He has only had 1 complete meltdown. To his credit, it was a good one - almost worthy of me buying a bottle of wine out of the vending machine at the medical facility (really, there is a wine vending machine there!). But, after a good nap this afternoon, things seem to be looking up!

We would appreciate prayers for Kai - that he continues to trust us and  bond with us...For Chris and I - that we continue to keep calm and consistent (and sane)...For Sam that he continues to be such a trooper while we are here. He has been absolutely fabulous through this experience and patient with Kai (and us!). He fell apart in bed last night; his words were, "I'm sick of Kai crying and I miss Ellie". I'm surprised that it has taken him this long to miss the dog! So, we'd appreciate continued prayers for all of this!

Adoption Day

24 hours after our Gotcha Day was our actual Adoption Day (In China families have 24 hours after signing guardianship papers to make the final decision about whether they want to proceed with the adoption or not). This was a HUGE day...huge because of the significance of Kai actually becoming part of our family...huge because of the all of the appointments and travel that we needed to do on this day.

To begin our day, we started back at the Registration Office in Zhengzhou, which is the provincial capital of Henan province. There were we were presented with our actual adoption certificate, showing that we are the legal parents!

After being presented with our certificate, we also found out that the Registration Office also waived our registration fee, which was 1,450 RMB (or about $225). Apparently, they are planning on increasing the fee but have not yet decided how much. So, in the meantime, they have decided to not charge at all! What a nice surprise!

After there we headed to the Notary Office in Zhengzhou. Here we just turned in some documents and paid our notary fee of 3520 RMB...unfortunately, they did not waive that fee! It was very hot and smoky in the room that we were in, but Sam thought it was cool.

After a short lunch, we were headed out for the biggest, most exhausting part of our day. We needed to head to Jiyuan City, which was about 2.5 hours outside of Zhengzhou. This is the city where Kai was found and where the orphanage is located. Because this is where Kai is originally from, this is where we needed to apply for his passport. Ok, here is a disclaimer on the photo...we were all HOT and TIRED. I felt terrible (and ended up getting car sick on the ride back...very humbling experience!). Basically, we were all completely sick of it, so this is the best we could do!

Aside from the busy schedule, various appointments, almost 6 hours in a van, 85 and HUMID weather, and getting sick, we had a great day! Kai started really bonding with us. By now he was calling me Mama and calling Chris Baba. He calls Sam gege (older brother). He wanted absolutely nothing to do with the orphanage director (this is her in the photo), but only wanted mama. In fact, he only wanted to be held by me the entire day. I have to admit, my arms were a little sore! He did not want Chris out of his sight, but did not want to be held by him. He is loving his big brother and literally copies everything Sam does. This has been a good reminder for Sam about being a role model! And, he talks...and talks and talks and then talks some more! If he's not talking, he's singing. There is a song he sings about 2 tigers; it is to the tune of "Brother John". I was singing the English words and he kept repeating the same phrase to me. I asked our guide what he was telling me. Apparently, he was telling me that I was incorrect :) If he's not talking or singing we know he must be sleeping!

One of the things that we were starting to notice was that Kai wanted absolutely nothing to do with the items that we were given by the orphanage director. Absolutely nothing! Whenever he saw an article of clothing or the toy train that we were give he would scream. Loudly. He took them and hid them under the bed. We're going to hold to them (in hiding, of course) and take them home with us. I think he'll want to see these again at some point...or maybe it's just that  I'm just not ready to let go of that part of his life before joining our family. At the hotel, Kai enjoyed looking at his new clothing and wanted to put most of it on all at once. Although most of the clothing we brought is too big. He is in a 2T/3T shirt and 12 month pants. Seriously, this kid has the longest torso and shortest legs!

I will be posting more pictures soon!

Gotcha Day

So, we have been in Zhengzhou since Sunday but have not had any wifi connection. So, it looks like I have a lot of posting and updating to do. I was going to start by posting pictures of our trip to the Great Wall, which we visited while still in Beijing, but I'm guessing most people want me to get to the good stuff..Kai!

Our Gotcha Day was Monday. This is when we received Kai and signed papers for guardianship. We arrived at the Registration office in Zhengzhou around 10:00 am. Kai was already there when we entered the building, since he had taken the bullet train with his nannies earlier that morning. It's a really good thing I put on waterproof mascara! I melted when I saw him. He was so much cuter and sweeter than any picture could ever show!

We had the chance to hold him, feed him, and I rocked him as he fell asleep. To be honest, he was quite indifferent toward us when we first met him. He didn't have much emotion at all when I first held him. He really sort of ignored me. To start building a relationship, we had the chance to feed him...yum, fish congee out of a can!

Before they left, we had the chance to speak to his caretakers. Fortunately, one of them spoke English. We took advantage of that and asked LOTS of questions. We asked about his heart, heart surgeries, special medical issues to look for, toys he liked to play with most, daytime schedules...you name it, we asked about it. The updates that we received had conflicting information on them, so we really appreciated this opportunity. One caretaker in particular had a very difficult time leaving Kai. She kept coming back and wanting to hold him. Eventually, the orphanage director asked the nannies to leave, but we were thankful to get have the chance to speak to them. We also appreciate all of the love, care, and time they have given to Kai before becoming part of our family.  Kai did not have a reaction when the caretakers left...no tears, no tantrums, no smiles...again, not much emotion at all.

Eventually, he ended up falling asleep. I think he was tired from leaving Shanghai so early in the morning and overwhelmed! So, I just got to hold his while he slept. I have to be honest and say that I loved it!

Once we left the Registration Office, we had the rest of the day to start bonding and adjusting to life as a family of four! By the end of the evening, he was calling me "mama" and was copying EVERYTHING Sam did! God is so good!

I'm working on loading the our Adoption Day pictures onto the computer. So, as soon as I get these ready, I'll do more posting!

Beijing

After a LONG flight, we have finally arrived in China! Well, we really arrived yesterday, but, let's be honest, we were way too tired to give an update! So, now you're going to get a ton of information...and pictures.

Chris, Sam, and I flew out of Chicago Tuesday night (we got there around 9:00). We had a direct flight to Hong Kong, where we arrived Thursday morning around 5:20.  After a 3 hour layover, we got back on a plane for a 2.5 hour flight to Beijing. Needless to say, we are thoroughly sick of being on airplanes!

After spending an hour in line for immigration, we finally were able to get our luggage and meet, Alice, our in-country rep for CCAI. She took us to our hotel (which is beautiful!). We were going to take a "short" nap before heading out for dinner. Well, we never made it to dinner but we did get some much needed sleep!

This morning we headed out on a tour of Beijing. This city is amazing!  We are in awe by how many people there are here. We knew heading to Beijing that it is a city of 21 million people...but today we got to experience it first hand. It's certainly different than our little town in Michigan!

As we traveled to Tiananmen Square and The Forbidden City today there were, literally, people everywhere (and, everyone smokes!).  It was slightly overwhelming...but so beautiful. We learned so much about the rich history of Beijing (and China, in general)....the Dynasties, Emperors, policies, etc. The pictures will never come close to doing this city justice, but here are a few that captured our experiences today:

TIANANMEN SQUARE

THE FORBIDDEN CITY

One of our favorite places was The Imperial Garden inside The Forbidden City. The trees and tree trunks were breathtaking. And then there are the rock formations!

 The last part of our tour today was visiting a hutong community in Beijing. Here is more information about what this is: hutong Beijing

We had the chance to take a rickshaw ride (and only had 1 near collision!) to a local family home for lunch. We were served a traditional Chinese meal while some in our travel group ate in the living room and bedroom. The food was amazing - definitely not Chinese buffet food we have in America!

HUTONG

 I had to post this picture...of all the fascinating things we saw today, Sam was taken by this pet pigeon in the cage where we ate!

Tomorrow we will head out to see the Great Wall and enjoy an acrobatics show in the evening. Sunday morning we will leave EARLY for the airport to fly to Zhengzhou. Monday will be our day to officially welcome Kai into our forever family! We would appreciate your prayers with our upcoming travels, welcoming Kai, Kai welcoming us, Kai's health, and for a smooth adoption process!