We Summered Well

Summer has officially come to an end and school has begun for 2 of my girls.  When people ask how our summer was I happily reply that it was exactly what we hoped for: a successful heart surgery, time with friends and family and beautiful weather.

I decided to list our stats (statistics) from this summer and I think it is an exhaustive and impressive list.

• The biggies, as I like to call LBean and EBean, went to an indoor water park in the Wisconsin Dells, a Burlington Bees baseball game, 1 family wedding, the American Girl Store in St. Louis and the pool
•  One eye appointment (me)
• 3 pediatrician appointments (all at the same time!)
• 3 out patient echocardiagrams for ChinaBean
• 4 visits to the cardiologist’s office
• One heart catheterization
• One heart surgery
• Weekly art lessons for the biggies
• Weekly summer reading program
• 2 trips to WalMart 
• 4 + trips to Target
• 2 trips to Hobby Lobby
• 2 trips to the spa (maybe to reverse the affects of going to WalMart?)
• 4 haircuts (not on the same person!)
• 4 weeks at Jamie’s parents’ house
• 3 weeks at my parents’ house
• 1 ride on a horse
• 1 visit to the piggies
• 1 family picture session (success!)
• A round of vaccinations for 4 out of 5 of us
• 1 birthday party
• 6 days of VBS (vacation Bible School) between 2 churches
• Approximately 60 miles run outside in the fresh air
• Approximately 13 one-way trips in 7 weeks between Peoria and Carthage
• Two 12+ hour flights (four for Jamie)
• And, drum-roll…watched Frozen approximately 30 times…we’re ready to “Let it Go”

Summer ended and school started.  

LBean is in Year 4 (third grade for our friends in the US).  She got the teacher that she wanted and has a few good friends in the class.  Next month she will be going on a three-day school trip without mom & dad.

Outside the gate to the girls' school.

EBean is joining her big sister at Dulwich College this year as a Year 1 student (kindergarten).  She is very excited that her school will be studying super heroes for the first part of the term.

EBean with her teacher and classroom assistant.

ChinaBean is spending time with mom until she starts at her little preschool in September.

Celebrating ChinaBean's 3rd Birthday

Out in 8

Watching Frozen one last time
before being discharged.

Well, ChinaBean never ceases to amazes us.  We were told to expect 14 days in the hospital and ChinaBean was ready on day 8.   I was shooting for 10 days, so I appreciate her over-achieving ways. 

I think the smile says it all!

Buckled up and ready to leave.

We returned to my hometown to spend time with the grandparents and extended family.  ChinaBean will have a follow-up appointment next Monday.  The doctors will be looking for any type of fluid build-up around her lungs.  They are also monitoring the blood flow through the new conduit around ChinaBean's heart and the oxygen levels in her lungs.  For the next 6 weeks ChinaBean has some "Special Care Instructions": 1) we're supposed to keep her away from large crowds (lots of germs); 2) We are not pick her up underneath her arms, which would cause her incision to pull, and instead we scoop her up underneath her tush; and last but not least 3) she is on a pediatric low-fat diet which restricts her total daily fat intake to 15-20 grams (I feel ideas for a cookbook coming on).  For the last year we have been trying to get her to put on weight.  Our goal was 15 kg (we didn't make it) and peanut butter and Nutella were daily staples.  We'll have to switch our goal for the next few weeks.  As I understand it, the low-fat diet, will help prevent fluid build-up in her lungs and prevent unnecessary strain on the heart.  

The big sisters had made a welcome home sign and they
were very excited to have ChinaBean home!

For now, we get to enjoy all the best things that summer has to offer...working in the garden, very (very) slow and safe rides on the Gator, playing outside, picking flowers, digging in the sand and playing in the water.

Checking the garden with Papa Joe.

Riding on the Gator (slowly).

Flowers for Grammy! 

Playing keep away from ChinaBean.

Just checking the crops.

A little time in the sandbox.

Amelia's surgeon and cardiologist were very understanding and moved up ChinaBean's 6 week post-op appointment one week.  If her incision looks good and her heart & lungs sound good, our entire family of 5 will be able to return to China together (as in, on the same flight) for another year of adventure & memories!  That is good news for this mama as EBean starts kindergarten the Monday after we are scheduled to return.  I don't want to miss that!

This Year's Recovery: Brought to Us by the Movie Frozen

Seriously folks, I think ChinaBean has watched the Disney movie Frozen 10 times in the last 48 hours.  But, since ChinaBean is the one recovering from heart surgery she gets to choose the movie.  The hospital put the movie on their hospital entertainment network about 2 weeks ago and I can guarantee that it has the best money they've spent.  One nurse told us that before that the hospital only had 2 copies of the movie and they had to track which room had the movie for fear that the movies would not be returned.  

Watching it with mama.

And again with Baba.

ChinaBean has officially been moved down in her level of care to Pediatric Intermediate Care, which means the nurse to patient ratio is 3:1 instead of 1:1 or 1:2.  The hospital is at full capacity on our floor, so even though she's stepped down in care, we haven't moved rooms.

ChinaBean walked a little yesterday during one trip to the activity room and today we bumped it up to two trips.  Her pain is being managed by Tylenol and Ibuprofen now and she is making good progress.  We're still waiting for a few non-heart related systems to return to their normal functions, but that will come with time. 

Playing on the iPad in the activity room.

And a tea party with Baba and a doll I affectionately call Stinky Baby.

Even though Elsa & Ana are ChinaBean's favorite princesses right now, we did get to see many of the other Disney Princesses today.  Some students from the choir at IVC (Illinois Valley Central) have started dressing up as different princesses, and Prince Charming too.   They visit the hospital to sing to the children and hand out stuffed animals.  Cinderella performed for us and we really appreciated their visit.

Prince Charming and the Disney Princesses 

My princess with the other Princesses.

We are starting to see glimpses of ChinaBean's personality.  She talked more today, smiled some, did a little of her dramatic arm movements for the song "Let it Go" and even gave her day-time nurse a good-bye wave.  Everything is moving in the right direction.  Jia you!

On the Road to Recovery! "Jia You"

ChinaBean's Fontan surgery went well and she is successfully on the road to recovery!

The night before her surgery we decided to combine the best of East & West cuisine and we dined on Chinese and pizza.  It was a good "last meal" before the big day.

Mmm pizza & rice!

ChinaBean stayed up so late the night before her surgery; she was being silly and could not get herself to sleep.  I think that it worked in her favor because she was so tired in the morning that she forgot to ask about breakfast and water.  She was pretty relaxed going back to surgery (a little medicine helped with that too).  

Cuddles under a warm blanket with mom.

We arrived at the hospital a little after 6 am and they took ChinaBean back to surgery around 8 am.  We were in the waiting room for about 5 hours or so until we were called upstairs to see her.  Several visitors came to visit, both friends from our time in Illinois and Suzhou, as well as support from the Grandmas and Grandpas.  

Can you tell they're related?

ChinaBean's first night went well.  She had some nice long stretches of sleep and the nurses kept on-top of the pain.  Her first day post-surgery we got ChinaBean up and sitting in the chair and taking a few steps.  She has started eating and she will be on a low-fat diet until she is discharged.

We had a brush with local fame yesterday.  Julie K (http://juliekmusic.com), a local singer and performer, was at the hospital. The Child Life Specialist brought her to our room for a private concert.  Thanks for stopping by Julie K!

Thank you for all of the cards, texts, messages and videos!  We have enjoyed looking at them.  We're still working on getting a good smile from ChinaBean and it's nice to have things to cheer her on.

The Night Before (The 2014 Edition)

ChinaBean’s third (and hopefully last) open heart surgery is Tuesday.  Her congenital heart defect requires a three part repair and tomorrow is the last step in the repair.  ChinaBean’s heart has one working ventricle.  Last year’s surgery took all of blood traveling above her heart (upper body) and directed it straight into her lungs using gravity.  Tuesday’s surgery will now take all of the blood below her heart (lower body) and run it directly to the lungs, bypassing the heart.  It is called the Fontan procedure.  

She is a firecracker, but it has served her well.

All I can say is what a difference a year makes.  There is still fear, apprehension and large dose of seriousness leading up to this surgery, but we have experienced the good life since her last surgery.  We know how good it feels to watch ChinaBean live her life without worrying (too much) about what is going on inside her special heart and grappling with the should of, would of, could of’s.  After her surgery last year we were told to go and live life and we’ll see you in a year!  We were encouraged to watch her grow and keep her around other children and running outside.  No need to keep ChinaBean in a bubble!  

Last summer, the night before ChinaBean’s surgery was terrifying.  I didn’t know what the surgeon would find during the operation (ChinaBean has a very unique heart…why be boring, right?), I had no idea what she would look like after her surgery and how she would handle the recovery, I was worried about living in a hospital for a week or so and I was sad that I had to spend more time away from our older two daughters.  

Many of those fears have disappeared, although the surgery is still a scary thought, I am ready to watch ChinaBean live the good life some more.  I want to be other the other side of the surgery and helping her along the road to recovery.  

After last summer's surgery, we were told to expect ChinaBean in the hospital for 7-10 days.  She was a rock star and was discharged after 5.  This year, we are told to expect a hospital stay of 14 days.  A complication of this surgery are pleural effusions (fluid build up around her lungs) and there is nothing that we can do speed it up.  We just have wait for the fluid to drain.

As we wait and cheer on ChinaBean during her recovery, please pray with us for these specific things:

6 am Tuesday, July 8: That we would arrive safely at the hospital and ChinaBean would not be afraid.  That her surgeon, nurses and anesthesiologist be well-rested and prepared for her surgery.

7-8 am Tuesday, July 8: That ChinaBean would separate from us without fear.

8-9am Tuesday, July 8: That ChinaBean would peacefully go under anesthesia and that all the grandparents would safely arrive in Peoria

10-11am Tuesday, July 8: That ChinaBean would safely go on to the heart and lung machine

11am-3pm Tuesday, July 8: That ChinaBean would successfully respond to the Fontan procedure and come off the heart and lung machine.  That she would return to her cardiac room breathing room air and not dependant on a ventilator.

3pm-midnight Tuesday, July 8: That ChinaBean would be settled in her room, come off of her anesthesia well and begin the recovery swiftly.

Jamie is scheduled to return to China 2 weeks from ChinaBean’s surgery, so prayers would be appreciated that she recovers quickly (I am secretly praying for 10 days) that we might be able to enjoy a few days together as a family of 5 before Jamie flies.

If you wish to cheer ChinaBean on during her recovery, I know that she would love to see videos from each and everyone one of you even if she doesn't know you personally.  Just saying hearing her name in a video and a quick message about feeling better would be amazing.  If you’d like to do that, you can send it to me via an email, Facebook message, Skype video message (our Skype name is mcclintock.family) or any other way you can think of.  OSF St. Francis also allows you to send a free e-card to patients.  Go to their website and enter our information (A. McClintock, 4th floor) and the hospital will print out the card and deliver it to ChinaBean’s room.  Keeping ChinaBean’s appetite up will also be a challenge and any offers to bring her rice/fried rice, pizza, fresh berries or other fruit, plain vanilla ice cream or chocolate will not be refused!

Ready to be on the road to recovery!

There is a saying in Mandarin “jia you”  (pronounced ‘jai yo’) that is chanted and yelled at sporting events to encourage the players.  One website said that jia you is used “to cheer or encourage someone in action: persist! with more effort! Don't give up! etc.”  Will you join us and  say “jia you” to cheer on our ChinaBean?