Playing in the dirt

Friday we went to the hospital with our bags packed in anticipation of possibly being admitted....her x-rays showed the pleural effusion (fluid) around her right lung unchanged, but the lungs slightly improved from a fluid stand point.  So the doctors/surgeon discussed and decided we could go home and enjoy the weekend!  We will return on Tuesday morning at 9 am to repeat the process with our bags still packed.  Praise God for a day the family was able to spend together at the races Saturday.  Huahua enjoyed just being a little girl and getting really dirty.  Occasionally she hopped on the bike to give the throttle a good twist.  She enjoys exploring and loves to be outside.  She found favorite rocks and leaves to carry with her.  She played so hard yesterday she fell asleep in the car as we were leaving the track.  Jordan was such a good helper taking care of her little sister.  The two have such a special bond.   

Here she found a little spot to sit and later stand on the rope swing!  Yikes!

A face with determination.  Twisting full throttle had Dad laughing hysterically.

Huahua says she's going to race like her brothers, but Mama has to sign the permission slip too and that is not happening anytime soon!  I saw her spotting up the little minis.  

We took a long needed bath at home after this mess :)  The fists are full of piles of dirt too!

The Hills and the Valleys

Some people like the live on top of the mountain looking out over the hillside enjoying the breeze through their hair.  Others feel more protected in the valleys down near the stream.  Either living situation brings it's own natural beauty and obstacles.  We built our house upon the top of the hill enjoying the breeze and views, but unless you have a secure foundation in the Lord no matter where you live rough weeks can make you feel like your family can be blown right off the hillside.   We started off the week with a discharge from our 2 week ICU stay; probably the most expensive "vacation" a portion of our family will ever take.   It was a formality we knew we would undertake when we stepped out in faith and adopted Huahua and I am so thankful to be on this side of the surgery with her.  We knew the risk going into the surgery, but never wanted to believe our baby might not survive the initial procedure. So no matter if you want to live in the valley or watch the sunsets from ridges, your faith needs to remain strong and focused on the true healer to walk through the unknown with a medically fragile child.

So now is the unsettling part....getting her body to start functioning with the fontan circulation and her new pressures.  She is active, lively and happy and but it's so hard to believe her lungs are still filled with pesky fluid.  Her breathing is more stressed the last day or so and she will go in tomorrow for another X ray.  Pray for her lung fluid to have decreased, so that she will not have to be readmitted.  If she is admitted, they will sedate her and place another chest drain tube.  If necessary for this procedure, pray for her spirit to continue to be strong and accepting of this treatment, as we continue to love on her and bond with her.  Last time in the hospital when the subsequent drain tube was put in, she was getting fussy.  She can tell when level of activity increases in the room, as more people always arrive for procedures.  She is so keen and aware that something is about to happen and it usually involves her in an unpleasant way!  I began singing "Jesus, Loves Me" and so softly the three nurses began all singing along.  How sweet is God!  He is in control and will heal her according to His plan.

Being at home around her siblings is the best medicine for her.  She is at peace with lots of laughter and fun!

Getting checked out on Wednesday.

She told me it was okay if she colored her hands with chalk because she could just wash them off when she was done.

Love those sweet eyes.  Today after running some errands she had the car keys and she said "Mommy, Huahua drive the truck home"  I asked her if she was old enough to drive and she said "yep!" with a boat load of confidence.  So full of life and energy.  We are so blessed with this girl :)

We're Home!!!!

We're home!!!!  We came home yesterday afternoon.   The children were so excited so see each other and the house was very loud with excitement, playing hide and seek, and eventually we had to settle down later in the day and watch a movie...."Frozen!!!"  Today a friend dropped off a meal and her little friend Ella went for a walk with her.  They enjoyed picking dandelions in the yard smelling the fresh country air.  Feeling so blessed to have my baby home with this surgery behind us.

Tomorrow we go back to the clinic for an echocardiogram to see how she is functioning and see the cardiologist.  Thank you for all your support and prayers.

Day 12 Post OP...... Still at Hospital

Enjoying her breakfast in bed.

So why are we still at the hospital when she looks so good???  Her lung x ray shows fluid in the lungs on the right side again this morning.  There is a balance after the fontan procedure of fluid intake and pressures in the lungs.  We are trying the find the happy medium for her body with oral lasix medication in comparison to her daily input/output.  They are monitoring her closely, along with oxygen saturation, which have been fluctuating on the lower end of the acceptable level.   We are thankful for the team of doctors and nurses working to make Huahua's heart/lung function at the most optimal level.  So if that means a few extra days here, we will endure.

I

She gets a little antsy in the room.  I figure soon they will just want to kick us out of the ICU!

Always entertaining the nurses.  Stacey is one of her favorites.  She has the pull cord on her name tag and let's Huahua pull it over and over and over again.  You can tell which nurses truly love their profession and strive to make this a happy place for the kids.

Who wouldn't love this giggle and laugh?

Another favorite nurse, Karen, taught her this move.  Thanks alot!  I told her keep teaching her tricks she'll be extending us
some  free babysitting!

Nothing makes her smile more than these goof balls!  Hard to believe it's only been 5 months she's been home.  Huahua is so part of this family we can't imagine it any other way!

Dad took them all downstairs while I took a shower. Huahua was able to be off monitor for awhile.  She loved the freedom of no attachments or cords dragging behind her.

Handsome young brother is just head over heals for his little sister.

Funny faces ;)

My sister and me!

We all had lunch together outside in the sunshine.  You forgot how good the sun feels.  What a great afternoon with the whole family.  The kids played hide and seek and chased the bouncy balls around.

Played hard, and then passed out!

Day 10 and Day 11 Post OP

 Looking out the windows on the fourth floor awaiting in anticipation for her brothers and sister to arrive.  Everyone was coming for a pizza dinner.  She has begun eating well again.  She feel asleep last night talking about everything she was going to eat tomorrow.

Saturday's 4 am x ray was clear.  As much as the x ray's show.  Apparently they don't show true amounts of fluids.  When she had her drain tube put back in there was about 3 times the amount of fluid expected.  Her little body was hiding it.  Good news was though it did not drain much afterward and this morning they removed it.  It leaked a little bit and the bandage was changed a few times, but we are much happier without the tube hanging outside our chest!  Today (Saturday) is another test day.  Trying to allow her to be as if she were at home.  We will drop the oxygen and continue to she how she manages on her own balancing the fluids/pressure in her lungs.  Pray for a clear x ray in the morning so we can go home!

Everyone wanted to be either pulling or attached to Huahua & the wagon.

She really lit up to see her siblings tonight!  They really missed her too.  

Mom really is needed at home....Jordan went to school today without pants!  Nice new shirt though!  I guess they all
thought it was a dress.    Yikes :)

Sweet sisters.....bonded forever...the best healing is snuggle time.

Day 9 Post Op

When you commit to do something, how much are you willing to put into it?  Time, money, effort.... If you have ever read the book  " Not a fan" by Kyle Idelman  you may know where I'm going with this.  If you have given your life to the Lord, how much are willing to give up or lose in order to gain a Christ like attitude?  This week, well even our whole adoption journey,  has brought new meaning to are you truly a follower or just a fan of how Jesus instructed us to live?

We specifically choose a child with a severe heart condition knowing she would need intervention.  Oh but that's where the line between our faith and intellectual knowledge cross.  I can rattle the structure of her anatomy and how this procedure has improved her heart functioning and stay in a safe place.  And then everyone must ask that fatal question.  I know they mean no harm......  "She'll be all right now?", or "she won't need any more surgeries?"  God is in control.  We don't know where she will be in 15-20 years.  All we know is that she has a very complicated anatomy and at this point her fontan procedure appears to be doing well, which means providing circulatory function for her heart.  We brought her home to be our daughter, part of our family.  It has changed how I view and appreciate the small things in life.  She is a blessing.

As I sat in the lobby tonight eating pizza with Huahua, who was half asleep in the wagon.  I noticed a woman eating alone.  Her face became red and she was clearly upset.  I asked her to come and join us and reluctantly she did.  I told her I was having the same type of day and at least we could just cry together during dinner if anything else.  As we talked about our children's diagnosis I noticed her faith necklace draped around her neck.  Why does her son have cancer at age 10?  Because that seems cruel.  And why does my baby have a heart defect?  I don't know and won't know; but two woman could sit down and have a good talk/cry and feel comfort in that moment knowing that God is in sovereign.  The place God has brought us both tonight hurts, but has purpose.  Our children hurt, whether we carried them in our womb or traveled the world to bring home.  God placed us on these paths that intersected at the hospital and they will bring Him the Glory.

So that brings me back to the point how much are you willing to put in to be a Christ follower or are you just a fan (as Kyle Idelman says in his book)?  This week has challenged me and brought me back to my knees again.  We said yes Lord, she will be our child, but as I held her tight in my arms rocking her, she looked so sick again with the tubes, and a part of me just ached thinking she might not be mine forever.  That is the part where our hearts need to be completely given to him.  For the Lord already knows His plans.

Not feeling well, but we needed to get out of the room!  They drained 170 ml off her lungs in the procedure.  Not much draining the rest of the day.

Beautiful even feeling yucky!

Dozed off a few times during our ride.

Playing awaiting for her goofy medication this morning.

Last night having a sucker!  

Almost went home :(

We woke up with hopes of possibly going home.... but found another lung X ray with fluid.  During the morning rounds everyone was fairly confident she has been doing so well that if her x ray was clear she should go home.  She has begun eating well, accepting the fluids we insist she drink, taking her orally meds (lots of them even though they tast yucky!)  in great spirits, playing, walking and then came the disappointment about mid day after her x ray......you'll be staying at least another day.  She keeps asking to go home and I love she loves her home and it makes me sad I have to tell her not today, maybe tomorrow, maybe not.  Please pray for her lungs to clear tonight with the help of some changed meds.  If they do not, she will have another drain tube put back in tomorrow which will keep us here for another few days at a minimum. :(    As disheartening as this sounds, I am so thankful for the team of Doctors and nurses working with her.  Thankful we have healthcare, thankful she is home with a family to support her, she is safe and so loved and in good hands.  Thankful God is in control of this entire situation.

We get a little stir crazy on the ICU floor.

Doing hot laps on her "dirt bike"

Chips and a movie....can you guess which movie?      "Frozen"!!!!!

Day 8 Post Op

Pictures are from DAY 6 and 7.  Falling a bit behind blogging :(  Sleep deprivation is catching up.

A Girl has to have her purse to go out for a walk right?  This was her idea and she actually had two of them, but the second one was in the cart since it was too heavy.  She continues to high five the nurses through the hallways bringing a bit of sunshine to the ICU.

Yesterday she received the largest balloon from Pastor Tom and Darla with "Frozen's" Ana and Elsa on it and of course it had to come with us for walks!  It's as big as her!  But when your this cute you can get away with just about anything in the hospital.

Pet pals came to visit last night.  What a blessing... she climbed right up and wanted to lay down with Millie.  Grandma and Grandpa have Golden retreivers, so loved snuggling Millie.    Still doesn't like dog kisses though.  Me neither!

Huahua examined her nails.

On the way back from pet pals we stopped at the toy room and picked up a tricycle.  She rode it back part way till she got tired.  Then evening phone calls to her brothers for a daily update.  Huahua really wants to go home.  We BOTH DO!  She asks alot.  Getting closer each day.  

We are so blessed to have this precious this girl!  Praise God for her incredible healing and spunky spirit. Pray for her to have clear Echo today.  Previous one had some blood pooling behind heart.  Pray for her oxygen stats to keep up on her own.  They are allowing her to continue without supplement.  Pray for her body to work properly with the new Fondan circulation.  Pray for a clear lung X ray.  Pray for us to go home soon!

Thank you for all your words of encouragement, visits, meals, house cleanings, help with the children and prayers!  Huahua is a blessing to us all and were so thankful we have such a community of support and love.  She is so loved :)