Wednesday, May 29, 2013

What Recovery Looks Like

Since ChinaBean's surgery, we have been in full recovery mode, which thankfully has been fun (mostly). She is amazing; a child's ability to heal, is amazing.

Here we are with ChinaBean's surgeon, Dr. Fortuna the day after ChinaBean was discharged from the hospital.  
We were working on bribing, I mean
encouraging, ChinaBean with chocolate
to sit still for an echo.  It worked!
Such a happy girl as she meets more extended family.

So, would you look this good 8 days after you had open heart surgery? Playing outside and enjoying the blue skies and green grass was my wish for this summer.

Both big sisters attended school in the US.  LBean was in first grade and EBean was in half-day preschool.  One day after I picked up EBean from school, we headed to a local park for a picnic.  ChinaBean is not supposed to be around large crowds for 6 weeks, so no big trips to Walmart or the church nursery yet.  But, we have tried to get outside and we've walked through a few of the small stores in town while she's in her stroller (and she can't touch any germy things)!

Yes, more matching dresses!
We've played...I remembered when this park was built and the entire community came together to build it within a few days.  It's fun to be able to take my girls there now.

We've eaten...Enjoying another hot dog at LBean's birthday party.

We've done a bit of reading.

And, hopefully daddy will be happy, we've introduced ChinaBean to BBQ sauce!

The challenging part of the recovery period has been changing the new habits that ChinaBean developed while traveling and during her time in the hospital.  Mainly, not sleeping in her own bed.  For about 5 weeks she was co-sleeping with us, which worked great in all the hotels and it was very comforting to her in the hospital.  But, it was not a practical long-term solution for me as I try to put three girls to bed on my own this summer.  

I am happy to report that ChinaBean is sleeping well in her own pack 'n play after about 3 nights of resistance.  We are also done buying formula and washing bottles and the paci goes "night-night" in the pack 'n play during the day until nap time or bed time.  Ayi (our housekeeper/babysitter/auntie/teammate) is not going to recognize her when we get home!  We are also working through ChinaBean's new medicine routine, which involves doses of medicine at 6 a.m., 7 a.m., 2 p.m., 7 p.m. and 10 p.m.  The 10 p.m. to 6 a.m. is pretty short for me and my beauty sleep.

On a completely different note, we've had a few funny moments as our family has experienced re-entry to the US.  Shortly after we landed, LBean told me she was sad that we were leaving China because Pizza Hut was there.  (For the record, I don't think LBean has ever eaten at Pizza Hut in China.  Now, Papa John's that's a different story...)  Oh boy, I was so excited with her that we were returning to the land the introduced the world to Pizza Hut!  (And, we still haven't been to Pizza Hut.)

For EBean, her funny moment came when I told her to just get some water from the sink.  "I can do that?" she asked.  "But it's from the sink!  I can drink sink water?"  Yes, you can!  Although I have to admit, I still pause at the thought.

Several expats that I've talked to mention feeling overwhelmed in the grocery store because of all of the choices that exist.  So far, that hasn't bothered me yet, but I did find the Taco Bell drive-thru menu very overwhelming!  As for groceries, I am not hesitating to buy as many blackberries, raspberries, blueberries or blocks of cheese my girls want.

Bring on the rest of summer!

Sunday, May 12, 2013

ChinaBean Update...It's All Good!

I am so happy to say that this update is filled with only good news.  My prayers of "please, please, please" have been replaced by "thank you, thank you, thank you".

Our Tuesday started very early.  A last bottle at 11:45 am, a 4:45 alarm, and a 6:00 am arrival time at the hospital made for a short night.  I did manage to sleep, though.  After checking in, ChinaBean had a blood draw for blood typing (and she was not happy about that) and an EKG.  Afterwards, we checked in the pre-operating area.  I managed to keep myself pulled together until the chaplain came in.  The chaplain was our link to what was going on in the OR and kept us updated throughout the day.  But it wasn't all tears Tuesday morning; we had some smiles too!

Taking some pre-op notes!

About 8 am, a nurse came to carry ChinaBean back to the OR (operating room). ChinaBean cried, but I think I cried more.  The first hour the surgical team were taking images and prepping her, and the actual surgery didn't start until 9 am.  ChinaBean's surgeon took some time to really look at her heart and see what the left ventricle looked like and where the placement of ChinaBean's heart was (its flipped and slightly rotated). From there he determined that a double ventricle repair was not the best option and that instead they would do a Bi-directional Glenn.  This is where the superior vena cava is directly run into the pulmonary arteries and it bypasses the heart's two atriums.  ChinaBean is unique because she has 2 superior vena cava.  Gravity and passive flow directs the blood right to the lungs to get oxygen to the blood.  

This will not be ChinaBean's last surgery.  The Glenn is the second step in a 3 step process.  She will need another surgery about a year from now.

We received a call from the chaplain when ChinaBean was placed on bypass and every two hours after that.  To keep us distracted, we had family and friends drop in and to keep the chatter going and bring us lunch.  I also had a friend in China who stayed up late in her time zone to play Words With Friends with me, although she did not go easy on me and let me win!

My friend Shanna brought us
chocolate-covered strawberries with
heart sprinkles.  The pager was one way
the hospital kept us informed on the surgery.

One of the nurses from the cardiology department stopped by and gave us more details on the specific procedure and what we could expect after the surgery.  She told us about the tubes, IVs and monitors that ChinaBean would have.  Then, she took us upstairs to the PICU to look at ChinaBean's room and we even got to meet her first nurse.  

Mid-afternoon the chaplain called and said they were finishing up the surgery.  He took us up to the PICU, we registered ourselves and got name badges and then waited in the "meditation room" for the surgeon to come talk to us.  The report from the surgeon was that ChinaBean did really well and the surgery went as expected.  He explained why the single ventricle route was the best, told us that ChinaBean did not require any blood products during the surgery (meaning, no transfusions), she wasn't on bypass for an extended period of time, and that she was already breathing on her own.  Then the surgeon escorted us back to see our daughter.

Many people had talked to us about the many, many tubes and wires she would have and I had really built it up in my mind.  For some reason I really expected the chest tubes to be humongous (probably too much Gray's Anatomy), so I was glad that when I saw her, I felt relieved.  She looked so much better than I had expected.

The rest of the day was spent trying to keep ChinaBean as comfortable as possible as she woke up from the anesthesia. A few times she woke up quickly and sat herself up and once she even stood up (oops)!

The next day, Wednesday, they felt her stomach was ready to handle something to eat.  Over the day ChinaBean was able to polish off 2 1/2 popsicles and that improved her mood greatly!

Eating her first popsicle. 

Lots to monitor
Wednesday afternoon, ChinaBean started doing this...

She was trying to sleep as close to me as possible while still being in the hospital crib.  We decided it might be best if we got a big bed and then Jamie and I could lie next to her.  It was a great decision and she immediately started resting better and continued to sleep off-and-on for the next 12 hours!  When she woke up briefly, I knew she was feeling better because she started using some words and giving me some "love pats" (where she pats my cheek).  It was a good sign.

When she woke up at 3:00 am on Thursday morning she was hungry!  She took a bottle then and again at 5:30.  Then she started eating like she hadn't eaten for 2 1/2 days because she hadn't!  She had sausage, oatmeal, ice-cream, cookies and, as you can see below, pizza.

Thursday night we said good-bye to Kris, the first nurse we had after ChinaBean's surgery.  Kris wasn't working for the next several days and we would (hopefully) be discharged by the next time she worked a shift.

Friday was another big day for ChinaBean.  Her chest tubes and arterial line were taken out and she went for her first walk.  Taking out the tubes there were no tears...walking to the nurses' station...all tears.
A little unsteady and not happy about it.

Even the paci can't make her happy.
After she made it to the nurses' station, ChinaBean hopped a ride in a wagon down to the activity room to pick out some new toys to play with.  The tea cups, spoons and forks were a big hit.

Friday night wasn't a great night sleep-wise for ChinaBean and therefor not for Jamie and me.  She wasn't in pain, but she couldn't get comfortable and was probably tired of sleeping in one spot.  She might have been regretting all of the food she had eaten the day before.  Finally at about 4 am she got comfortable and slept well for several hours.

Today we hope to take her for another walk and finish her last IV medicine before switching to all oral medicines.  Her additional oxygen was stopped and she is now completely on room air.

There are rumblings that we might be discharged tomorrow, which means I will get the best Mother's Day present I could have asked for. 

Tuesday, May 7, 2013

The "Night Before"

Well, here it is, the night before the surgery. I don't really even know where to start, all my thoughts, prayers, and worries are swirling around together.

I suppose I'll start with this weekend.  It was such a gift that Jamie's parents could drive our two oldest daughters the 2 1/2 hours to reunite the McClintock 5. We were able to spend time as a family.  Jamie and I got caught up on what our big girls have been up to.  They are staying with my parents and both are going to school in the same school district where Jamie & I went to school.  In fact, Jamie's oldest sister is LBean's teacher during her time in the US.  We also had some family pictures taken by a friend during her annual Mother's Day photo shoot and then spent a lazy afternoon at the zoo.  It was hard to send the girls off at the end of the weekend, and I know they miss us, but they are enjoying their school and time with family.

Working diligently.

This girl loves to craft!

EBean kept saying, "I'm in the pouch!"

ChinaBean's first trip to the Peoria Zoo.

As for the surgery, it was originally scheduled for this past Thursday, but it was pushed back so ChinaBean could get an MRI done.  It was Thursday afternoon that I hit a low point and all of the worry and fears came crashing down. Thoughts of my baby having open heart surgery, the uncertainties, the desire to keep our family going just as it is.  We knew our daughter would need surgery.  We knew that it would be complicated and scary, but thinking about it and living through it are two different things.  At a challenging point in our marriage (yes, Jamie and I have had those too), I remember looking at Jamie and telling him that I was ready for us to be the couple that could look back and say, yes, it was tough and hard, but we made it.  It's the same for our family, I am ready to be on the other side, to be able to look back and say "we made it".  When I hit my low, I decided I'd better start doing some serious praying and what seemed most appropriate was the face-down in the carpet, crying kind of praying.  I also sent out some SOS messages to friends back in China that I knew would be waking up soon and pick up where my prayers had left off.  It wasn't immediate, but I started to feel myself pulling it together.

Friday morning we headed back to the hospital for the MRI.  ChinaBean spent 2 1/2 hours in the MRI machine in hopes that the doctors could create a 3-D image of her heart and try to determine what kind of surgery is best for her.  The nurse we spoke with said that it is possible that in the future heart catheterizations might not be necessary and that MRIs could potentially give the same, if not better, imaging of the heart than a cath.  The whole morning wore ChinaBean and mommy out and we napped for 3 hours in the afternoon.

Last night as I drifted off to sleep, it seemed that the only word I could pray is "please".  That summed up everything I am hoping for.  Please keep her healthy enough to have the surgery, please let the surgeon be confident in his decision and well-rested to perform an amazing surgery, please let her do well on bypass, please let her require little or no transfusions, please let her be breathing on her own when she goes to recovery, please let her keep infections at bay and surprise everyone with her toughness and resilience.  Please was all I could pray.

And now it is today and tomorrow it's THE day.  I am praying that tomorrow is the start of a new journey, a journey where ChinaBean's heart is working better than it ever has before.

I know that my prayers have been heard, but I also have the wisdom to know that God does not have to grant my requests. (But I sure hope that He does!)

Thank you for our family and friends from around the world that have been praying for ChinaBean and sending her good wishes.  It is your strength and reassurance that will carry us forward when I hand off my baby tomorrow to the nurses.

Thursday, May 2, 2013

ChinaBean's Unique & Special Heart

From the moment we knew ChinaBean, we knew her heart was special and unique only to her.  We also knew that she was tough and a fighter (hence her American name which means "hardworking")!  I hope that by sharing a bit about ChinaBean's condition that others may benefit by our experiences.  

ChinaBean has a collection of congenital heart defects.  She has a hole between her atriums (the upper chambers of her heart), an even larger hole between her ventricles (the lower chambers of her heart), her heart actually sits on the right side of her body along with a few other unique traits.  In December of 2011 ChinaBean had a B-T (Blalock-Taussig) shunt placed to help get blood to her lungs.  The temporary shunt brought her oxygen levels up to the mid-60% range.

Last week we took one of the first steps towards fixing ChinaBean's heart.  On Monday afternoon we met the cardiologist that would perform her heart catheterization.  I liked her instantly because she handed out mini chocolate bars!  Our daughter needs a little encouragement (a.k.a. bribery) to warm up to the medical community.  Remember the picture of her getting her temperature taken?!

The next day we woke up early to head to the hospital.  Still suffering from jet lag, the 2 am bottle feeding before she was restricted from eating was a bit painful.  We did decide to proclaim ChinaBean's love for her dad!

They took her back at about 8 am.  During the morning the doctor performed 2 echocardiograms and a very detailed heart catheterization.

We had some good company to help keep us occupied during our wait.  Cathy, our friend from China and who has known ChinaBean as long as we have, brought us breakfast and kept us company until the cardiologist came to speak with us after the procedure.

Cathy took these pictures of us listening to the cardiologist explain what she found out about ChinaBean's heart.  My good friend Julie is in the background trying to listen to all the details because she knew we would be overwhelmed by everything the doctor said...and she was right.

We found out that the pressures in ChinaBean's lungs are good and she has not developed any secondary problems due to her heart conditions.  Her heart is on the right side as reported by China, but thankfully the chambers of her heart are not flipped.

We were originally scheduled to have ChinaBean's open heart surgery tomorrow (Thursday), but after we met with the cardiac surgeon this past Monday, it has postponed.  He has recommended that ChinaBean have an MRI so that one of the doctor's in the group can create a 3-D model of her heart.  Do you think they would let me keep it and put it in a shadow box?!

So, we wait some more.  Her MRI is scheduled for this Friday.  Next Monday morning all of the cardiologists will sit down again and discuss ChinaBean's case.  They will determine whether or not she has enough room in her ventricles to keep both of them (and keep 4 chambers in her heart) or if they will make a single ventricle (and take her down to 3 chambers in her heart).  We will meet the surgeon Monday afternoon and he will tell us what they have decided.  Barring any sickness, and if ChinaBean is cleared for surgery, we will be back at the hospital early next Tuesday morning.

Until then, we wait and we play!

We've toured the Caterpillar Visitor's Center in downtown Peoria.

Pointing to where Baba (Chinese for daddy) works in China.

Jamie received a US patent for his work on this joy stick.  Jamie has earned 3 or 4 patents (I'm a proud wife)!

We've introduced ChinaBean to Chick-fil-a!

We've visited friends!  

ChinaBean met one set of great grandparents!

Great Papa demonstrating the iPad mini.
ChinaBean opening her card and handmade quilt
from Great Grandma.

And, we've chatted with friends.

Now, we wait some more.