Sunday, October 4, 2015

Our Miracle Boy

Ewan's open heart surgery was Thursday, September 24th. We checked in at 6:00 am, and he went back with the anesthesiologist at 7:30 am.
Such a sleepy boy! We had to wake him up around 5:30 am
Playing in the waiting room.

I had been feeling peaceful all morning...until the surgeon came to talk to us. He listed a myriad of possible problems and complications, most of which ended in death. It terrified me. There were several things that could go wrong that I wasn't ever aware of until that moment. The tricuspid valve was precariously close to the hole and may incur damage from the surgery. The heart's electric system runs down the mid-line of the heart and is invisible, so fixing a hole and stitching around it might damage the system and make a pacemaker necessary. The bypass machine causes an allergic reaction and causes the blood vessels to leak fluid, so Ewan would most likely look puffy when we saw him. He gave the statistics for complications on the bypass machine, which only increase as the child's age increases. He then went into all the scary details about the possibility of the heart not starting again, which, once again, increase as the child's age does. My peaceful feeling was shattered and I was suddenly filled with fear and anxiety. Ewan's surgery was to last 4+ hours and included an internal echocardiogram to begin with, then they break the sternum and spread the ribs, thin the blood and lower the body temperature, basically unhook his heart from the body and hook the body up to the heart/lung bypass machine, stop his heart and repair it, hook it all back up, do another echo to make sure it all worked, then wire his sternum back together and stitch him up. They called us from the OR several times to give us updates as they went, which was simultaneously calming and scary. It was nice to know what was going on, but I also cried every time an update came. To know your child is currently on a bypass machine and his heart isn't beating...well, it still gives me a stomach ache to think about.
Eventually we got the call that the surgery was complete and they were stitching Ewan back up. About 30 minutes later the surgeon came to talk to us. He said, "That was the biggest hole I've ever seen in a heart hands down. I honestly don't know how he has lived so long, and how he's doing so well has no explanation." Quin and I both, in that moment, knew without a doubt that Ewan's life had been preserved by the Lord, and his very life is a gift and miracle. Before we even heard the rest of the update, my body filled with chills and the honor of being his mother overwhelmed me. I was taken back to this time last year when I was filled with doubt and fear over another adoption and another child to care for. I remembered in a split second how we debated the decision to adopt for months and how I couldn't get his face out of my mind. I recalled how, when the definitive answer finally came, I knew he was ours. I don't even know how to put into words how honored I feel to be the one chosen to be the mother to a living, breathing miracle child. Quin's whole body was shaking he became so overwhelmed by the doctor's news. "I honestly don't know how he has lived so long."

The rest of the update was no less miraculous. The doctor had to remove Ewan's tricuspid valve because it was over the hole. They put a plastic mesh patch on the hole and stitched it into place, then had to reposition the tricuspid valve at a slightly different angle than it had been. Ewan also has a small hole between his two atriums, and the doctor purposely made the hole a bit larger to act as a "pop off valve" for the heart. He was very worried about the pressure in Ewan's heart after surgery, and hoped that this hole would act as a buffer for the newly repaired heart and that the blood pressure wouldn't be too high in the right ventricle, which feeds blood to the lungs. The big worry is pulmonary hypertension, which they anticipated would skyrocket for a while after surgery. He said in the echo post-surgery that the repaired VSD still had a small leak in it, but only about a millimeter. It would hopefully fill in by itself around the stitches, but if not, it is an inconsequential hole. He said overall that things went well, the surgery was a success, and that we could go see our miracle boy in recovery 30 minutes from when he left. I can't even imagine the crazy miracle that modern medicine is! They stopped my child's heart, fixed it, then got it beating again. I don't think that will ever not amaze me to think about.

We headed to recovery, and I was pleasantly surprised at how great Ewan looked! He was sleeping peacefully with his eyes half open (which he often does). He didn't look puffy. He looked pale, but I was expecting him to look terrible, and instead he looked good!
He felt very cold and the nurses were working on warming him up. He had about three nurses working on him when we got there. Once they had him settled a bit more, the charge nurse explained what all the tubes and monitors were and gave us a lot of valuable information. Ewan's hands were tied down, which really freaked me out for a few minutes, but the nurses explained that Ewan had a breathing tube in and when he started to wake from the anesthesia he would be disoriented and start ripping things from his body. He had several wires and tubes hooked directly to his heart, and it would be a disaster if he pulled them. They showed me the wires in his heart and explained that they were carefully monitoring any arrhythmia and would shock his heart directly if needed. There was a chest tube which was filled with blood that was draining from his distressed heart. There were IV's all over the place. There was a monitor on his forehead and more wires and tubes coming out of his little body then I ever knew possible. They explained that while they would like to keep him sedated with a breathing tube in for as long as possible, they needed to start waking him up because the sedation medication causes the heart to pump hard, which they were also trying to avoid. We had an excellent nurse who never left Ewan's bedside. She monitored every single thing going on with Ewan like his life depended on it, because it did. Quin and I sat and waited for our boy to wake up.

Ewan became twitchy for about an hour before he woke up. Suddenly he was awake, terrified, and fighting. About 10 nurses and doctors surrounded his bed and held him down while the respiratory therapist removed his breathing tube. I was completely overwhelmed. He was screaming, but no sound was coming out (because of the breathing tube). He had tears flowing from his eyes, and there was nothing I could do to calm him. His heart monitors started beeping like crazy because his heart was going nuts out of fear. The breathing tube finally came out, and he was screaming a terrible visceral scream. He had no idea what was happening to him. He was yelling, "MAMA!!", but he didn't recognize Quin or I. All I could do was lay on him and sob. I was so overwhelmed and full of sorrow for my boy. They gave him morphine, and he quickly fell back asleep.
He slept for about two more hours, then the same episode happened again. He kicked his cute nurse who was trying to hold his arms down right in the gut and was fighting for his life. It was so scary. I hated this part. They said he had post-op delirium and nothing we could do would help him, but I sat and rocked his bed for hours. He was in and out of sleep all afternoon, but luckily the episodes became less violent and he was less scared with each waking.
The nurse told us they'd had a meeting previous to surgery about how much care Ewan would need to receive. He was a very high-risk patient, and it's not often that 7 year olds are able to have VSD repairs. They had several safe-guards and plans put into place before we arrived, and once again, miraculously, Ewan did remarkably well. His pressures were high, but not all that high. His heart had some arrhythmia, but they weren't too concerned about it at that point. His stats all looked great. Finally, by about 9:00 pm, Ewan woke up and was himself for a few minutes. He knew who we were and was responsive...and thirsty! He drank lots of water, which the nurses said he could have as long as he didn't throw up.
I headed home around 10:00, and Quin did the night shift. Friday morning, the day after surgery, I was getting ready to head to the hospital and had a strong realization that Ewan was most likely abandoned by his birth parents because he needed heart surgery. Ewan was 10 months old when he was found. Most people do not have health insurance in China, and a staggering number of parents are faced with the impossible decision of leaving their child and hoping they get medical care or keeping them knowing they cannot afford the life-saving surgery their child requires. Since the cardiologist told me Ewan should have had surgery in his first year of life, it hit me that at 10 months, I bet his mother gave him up to save his life. I became very emotional thinking of the awful, terrible choice it would have to be to leave your child in a park and hope they get the medical care they need or to keep them and know you were responsible for their early death. I can't imagine having to make this choice. It breaks my heart. And to know that Ewan didn't receive the medical care he needed for seven years made me even more sorrowful. All I want to do is find his birth mother and let her know he finally got his surgery. He is taken care of and so very loved. I wept thinking of how happy this would make his first mama.

I made it to the hospital Friday morning and Ewan was grumpy, but he was definitely Ewan! He had been awake nearly the whole night watching movies and coloring. He had had lots to drink and was eating crackers when I showed up. Quin went home to get some sleep, and I took over at the bedside. I ordered him a breakfast of Ramen noodles and scrambled eggs and he gobbled it all up! We knew it was time for more medicine when he would start to get grumpy. The nurse the first day told us the second day would be the worst because the anesthesia would be all out of his system, but the pain would be terrible. It was definitely a long day. Ewan refused to sleep and was extremely grumpy. He was eating well, though, and we entertained ourselves by watching movies, coloring, painting, and playing with toys.

He even got up to go to the bathroom! Quin came in the evening, and we all spent time together for a few hours. Grandma brought the kids up to visit, and it was a much welcome distraction!

Quin and I were able to eat dinner with them and Ewan was very excited to see them! I went home to put the kids to bed and Quin stayed to spend the night again.

The second night Ewan slept through the night and was in a much better mood Saturday. The nurse had removed several wires the day before, and continued throughout the day to remove gear. Quin sent me a picture on Saturday morning of Ewan walking around the Cardiac Intensive Care Unit, chest tube and oxygen in tow! The physical therapist had shown up to make sure Ewan could sit up. He surprised everyone by walking laps around the CICU! After the third lap, the physical therapist chuckled and noted that he wouldn't need to stop by again. Ha!
On his walk, Ewan found an electric piano that he moved into his room all by himself and continued to play for the rest of his stay there.
He was grumpy, but he was also doing incredibly well. Saturday afternoon he got moved to the Children's Surgical Unit. This is a great indication that Ewan was doing well and didn't need as intense of care. He could have unlimited visitors in the CSU as opposed to only three at a time in the CICU, so the whole fam came to visit! It's always nice to break up the day with a visit from your siblings and grandparents!

Quin spent the night again on Saturday, and it was the plan that my mom would come take over for a few hours while we went to church together since it was the primary program and our other kids were participating. We were all surprised when we were told Ewan would have a sedated Echo that morning. We decided it would be best if Quin stayed with Ewan instead of watching the kids in the program. They also removed his chest tube and bandages.
It was good Quin stayed, because Ewan was super grumpy coming out of the sedation again. I came up Sunday afternoon and spent the rest of the day with Quin and Ewan. It was so nice to see Quin! We'd been passing in the night for days and hadn't even had time to talk. Plus it gets lonely sitting in a hospital room all day! We got to go to the playroom and had a fun time!

Ewan also had a blast "fishing". We had a few more visitors on Sunday, and it was our best day in the hospital.

Sunday was Mid-Autumn Festival in China. That is a big holiday there where they celebrate the harvest, the moon, and family and friends. It reminds me of our Thanksgiving. Since it was our first Chinese holiday together, I thought it would be fun to get some traditional Chinese mooncakes to celebrate. These mooncakes are only available during Mid-Autumn Festival. Quin went to the Chinese market on Saturday to pick some up. Despite the feast above, Ewan had no interest in the mooncakes. I don't know if he doesn't care for them or if he just wasn't in the mood. He got excited to see them, but didn't want to eat them. Maybe we'll make our own mooncakes next year.
 Quin decided to go four for four and spent the night again. 
I have to post this video of Ewan and the electric piano. This went on for HOURS. Hilarious, annoying, maddening.

I came up early to switch him, but we found out Ewan would be going home soon, so Quin worked from the hospital room while we waited for discharge. Of course it always ends up taking hours and hours longer than anticipated and we didn't get home until about 2:30. It was SO nice to get out of the hospital, though! We were all going stir crazy! Ewan was super grumpy by the end and was throwing a fit when the surgeon came in to say goodbye. I tried to get a picture of the, but this is the best I got. Pathetic.

In the hospital Ewan was pretty dependent on Morphine for about the first three days. They took him off of it and he was doing well alternating Lortab and Motrin. We'd have to stay right on top of the pain meds, though, or he would spiral out of control pretty quickly. He was also on oxygen so his right ventricle wouldn't have to do so much work and would lower the pressure in his lungs. He is taking blood pressure meds to help the left ventricle pump harder as it was being sluggish (which is apparently a common side affect of heart surgery) as well as a diarrhetic to keep the swelling in his heart down. The doctors all told us multiple times that they couldn't believe how well Ewan was doing. We saw the surgeon a few times as well as Ewan's cardiologist. We also saw two fellows regularly and four doctors employed by the hospital. Every single one of them was surprised at how well Ewan was doing. They also expressed surprise that he was even able to have the surgery. It's all so overwhelmingly incredible! 

We came home with Ewan on oxygen as well as the medications he was taking in the hospital. It's the hope that at his two week appointment he'll be able to get rid of all of it! I sure hope so, because keeping oxygen in his nose has proved to be a full time job! It's exhausting how many times he rips that out of his nose a day. The first night he needed Lortab, but by Tuesday morning, he was acting completely normal. He said he didn't have owies and didn't need medicine. I gave him Motrin to stay on top of the pain, but he hasn't required Lortab since Tuesday. He blows my mind! Being home has been a breeze for him! He acts like his chest wasn't cracked into just a few days before. Truly the hardest part is keeping him chill. The biggest worry is that he would fall and disrupt the wired-together sternum. He's happy, playful, and eager to show his "owies" to anyone who asks!

I am so beyond thankful for the gift and miracle that is Ewan's life. Thank you all for your prayers and good thoughts. We could feel them all and it was such a comfort to know so many people around the world are rooting for our boy!

Thursday, September 17, 2015

The Busy Boys

We've had a busy and exciting month! Ewan and Milo certainly keep us on our toes. Ewan is SUCH a fun addition to our family! He enjoys each moment and experience like it's the best he's ever had, and he is a true joy to be with.
Trying on life jackets before we head to the lake.
We went boating for Jie Jie's birthday, and Ewan had a blast on the Wave Runner! He seriously LOVED it!

He also is the real-life Curious George. He gets into EVERYTHING and makes the biggest messes imaginable, but he's always genuinely trying to help or is simply curious and leaves a wake of destruction behind. One example is when he dumped four boxes of cereal into the dog's bowl. It covered the floor of the kitchen and down the stairs. He was so proud that he'd given the dog food, though. Stinker! We also do a lot of grunting and gesturing to get our point across, much like George does. Curious George is friendly and kind and enjoys every activity he does. Ewan again! Every morning at the crack of dawn, Ewan climbs into our bed and exclaims, "George!" I keep thinking I should say no to him watching, because heaven knows he doesn't need ideas on how to be a curious little monkey, but YOU try saying no to his big brown eyes! Impossible! So I just repeat the Man in the Yellow Hat's mantra of, "Be a good little monkey!" and hope for the best! The theme song always reminds me that good things come to those who are curious:
You never do know what's around the bend
A big adventure or a brand new friend
When you're curious, like Curious George

When everyday is so glorious, then everything is so wondrous
There's more to explore
When you open your door
And meet friends like this
You just can't miss

Get curious and that's marvelous! And that's your reward
You'll never be bored
If you ask yourself, what is this?
Like curious, like curious, like Curious George.

Even though I joke about the lack of English, Ewan's actually he's learning at lighting pace. We've finished the whole first series of Signing Time (you can quiz him. He knows every sign) and have started the second series. He understands a lot of phrases now and is starting to say them. My favorite thing he does is say (as enthusiastically as possible) Good Morning! No, not just in the morning. He doesn't quite understand the whole morning part. He says it to anyone he hasn't seen for a few minutes. It makes us giggle every single time.

Another think Ewan is really into right now is Toy Story. He LOVES, LOVES, LOVES Woody and Buzz. Loves them. He's going to be Woody for Halloween...if the costume lasts that long. I finally had to hide it because he was wearing it 24/7!
Ewan sure has a friend in Woody! Best buddies! Here's a video of them playing together. 
Ewan insists on sleeping with Woody. He won't even attempt to lay down if Woody's not there with him. I think it's the cutest ever! There's nothing like little boys and Toy Story! This Woody has a pull string, and Ewan has every phrase memorized. Yee Haw! is heard around our house a lot!
Ewan finally had his appointment with the Ophthalmologist at the end of August. He, not surprisingly, needs glasses.
I ordered him some Miraflex frames, but they don't fit his face very well. I'm working to buy another pair called Tomato. They are made in Korea and fit Asian kids much better. The only problem is they don't carry them at a retail store in Salt Lake, so I will be ordering them online soon. 
He doesn't love wearing them because they either press against his eyes or slip down. He sure looks cute, though! When they put the glasses on his the first time, his reaction was amazing. I sure wish I would have recorded it! He kept saying, "Woah!" over and over again. It was SO cute! He was seeing clearly for probably the first time in his life! 

Another thing Ewan is obsessed with is animals. He goes over all their names, signs, and sounds about 500 times a day. We went to the state fair this past Friday and I knew it would be a hit for this animal-loving boy!
 Here is his first look at the cows. Cows! He couldn't even believe he was seeing cows!
 He started yelling hello to them from quite the distance.
 I just had to include these two pictures because he looks so dang handsome in his glasses!

Milo loved the sheep as well! 

  Next up were the goats. Goats are always a favorite with our family. They're so funny!
 I wish these pictures had sound. Ewan kept saying, "Hi, goat!"
 He was showing us the baby goats. If there's anything cuter than a goat, it's a baby goat!
 The sound on this picture would be, "Baby! Baby! Baby! Baby!"

 Getting brave and petting the goat!
 We asked Ewan several times if he wanted to ride a pony. He was VERY excited about the idea!
 So we bought tickets and waited in line...

 But Ewan quickly decided the idea of riding ponies was much better than actually riding the ponies. Haha! Luckily Quin grabbed him off as soon as he set him on. Ewan gleefully watched his siblings ride from a safe distance.
 Milo, however, enjoyed the pony ride!
 Ewan was adamant that he be able to ride every ride he saw. As soon as we'd get close, he'd want nothing to do with the rides, though. Luckily he agreed to ride on this little train with Mei Mei (who is just as big of a wimp as Ewan is when it comes to rides.)
 I say luckily because he had the time of his life! He was adorable!
 He yelled, "WAHOO!!!" through the entire ride. I just love this kid!!
 He was so proud of himself!
 And I was, too. He's hard to see in this picture, but he has his arms up whooping out a victory call. He's just the best.
  And this guy's favorite things at the fair were all the lights and...the food. Haha!

 Ewan insisted on going in this little fun house type thing. I made Geh Geh go with him to help him out. Ewan was SO excited!

 High fives all around!
 And then it was time for the Big Yellow Slide. He rode with my dad, or Pops as he's known around here. Ewan had SO much fun!!

 I know these pictures are awful, but I had to include them because the look of pride, joy, and excitement on his face is just too much!
 And then, because he literally is not physically capable of hearing music and not moving his body, he broke out into a victory dance.
 Including lip syncing to a song he had never before heard.
 Oh, Ewan. You certainly take the party with you! 
 And for one final event before bedtime, Ewan played a duck game where you pick a rubber ducky out of a pond to win a prize. 
 He won this stuffed animal duck...
 then threw it back into the water. Because all the other ducks were in the water. Whoops. Ewan got to take a soggy stuffed duck home. Winner winner! 
All in all it was a marvelous adventure at the fair!

A few weeks ago Ewan started a Dancers with Disabilities class at Tanner Dance. Tanner Dance is amazing, and this class is even more amazing. I am kind of obsessed. 

It's a creative dance class with a live pianist, an incredible teacher, and lots of assistants. Several of the assistants are adults with special needs. Melt my heart. Seriously, I cry every time I watch them. Given Ewan's love of dance and mother who is with him nearly 24/7, he relishes in his hour at dance every week. I let him go in by himself and then I sit near the door. He cried for a minute in the second lesson because the music stopped and a helper told him to stop dancing as well. It upset him and he was yelling for me. I ran in and scooped him up and thought, "YES! That is exactly how you should be reacting!" Other than that, he has loved every single second of dance class. In fact, he signs "dance" to me every day to ask me if he has dance that day. We get to drive his friend with us as well, so it's a double dose of fun!

It has been so long since I've done a Milo update! Milo is doing well with Ewan. It's interesting to watch, because Milo tries to copy what Ewan does every once in a while. This is a major accomplishment and makes me so happy!
 Milo is the most laid back, easy, smiley, happy baby on planet Earth. He is a gem!
 He is by far the easiest child to parent, even though I have to physically take care of him (feed, dress, change diapers, etc.) He is generally happy and entertains himself easily.
 He loves big and has a ready smile. He gives the BEST kisses and hugs and is my little snuggle bug.
 I just love him! On July 6th, it was Milo's "Plus One Day". This means as of July 6th, he's officially been with us longer than he was in the orphanage. SO awesome!!
Milo is getting pretty darn close to walking! He's kind of a chicken, though, so he has to be in the right mood to try. Here he is the other night.
I didn't catch his best attempt on video, but you get the idea. He'll be running around here before we know it! Milo only has about a month and a half of Early Intervention left, then he'll be in the special needs preschool. Aaaahhh! I have my first real IEP meeting for him in a few weeks and I'm SO nervous! I can't believe my little baby is growing up so fast! We love this squishy little guy!

Ewan's open heart surgery is scheduled for one week from today, which is September 24th. He will go in the day before for some more tests and we will go to a class to prepare him for the surgery. We requested a Mandarin translator be present for the preparation class. Who knows how much he'll understand, but we owe it to him to try. He will be hospitalized for a minimum of four days after surgery. It could be longer depending how his heart pressures react after the surgery. Please keep our little guy in your prayers! We feel blessed that the surgery is possible, but it's scary at the same time!
Our sister-in-law is 40 weeks pregnant, so Ewan thought he'd copy her at Sunday dinner ;) I have a feeling the greatest challenge of heart surgery is going to be keeping this boy low-key for 6 weeks. Heaven help us!