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 :)

Day 5 Post Op Happy Mother's Day

Mother's Day-2014

Well since it's mother's day, why start with a lot of sleep? Moms are not suppose to sleep.  We had a rough night last night.  New nurse learning the ropes of "our system", Huahua was already crabby and sleep deprived, and stats on that funny machine kept beeping all night long!  Between meds, labs, x-rays, diaper changes, blood pressures, checking the tubes, weights, and that machine that would not stop beeping we might as well stayed up all night!

So we are hoping for more sleep tonight. 

Best News of the day....The chest tubes came out.  The worst news....The chest tubes were pulled out!  OUCH!  I had to watch, of course be with her, but I could see the excruciating pain in the mother's face (the Dr) who had to pull them out.   I held it together, but by the third tube, my heart was just aching for her little soul and it showed.  As mothers it is our responsibility to do what is best for our children and we know at times they may have to endure pain to get there.  This surgery was painful, recovery is hard, but this is what her heart needs to make living possible for her.    Her chest X ray looked good and her oxygen was good but then started to decline as the day went on. Possibly due to dehydration, because she in on meds to help her lose the water and not taking in much liquid.  We are hydrated her in the evenings and trying to get her to drink more during the day.  It's a fine balance of keeping her comfortable with fluids (basically allowing her to drink and keeping her lungs dry to avoid infection)

She continued to walk today more than ever.  Her heart rate would climb and oxygen would decline as expected but with her she continued to go.  Towards the end of each walk she would begin to slow or ask to be picked up.  Making great progress.

Please pray for her to begin eating and drinking again.  She asks to go home regularly, but this is a big hurdle right now for her to heal.

Mother's day is the also a special day for an adoptive family to remember the special woman who gave birth to the princess we get to call our daughter, sister, grand daughter, and niece.  We hold her in honor for the inconceivable choices she made in putting the needs of this precious child first.  I don't know why we were chosen to be her family, and at times it doesn't seem fair or right that a woman half way across the world would have to ache in pain for her child and we would reap the joy of this little one.  We pray for her to have peace. That she would some how know  her little she so unselfishly placed in a safe place to be found so she could find medical care and live is safe, and so loved and is receiving the care she so desperately needed.  Thank you to her birth Mom for giving Huahua life.  We promise to nurture, love her forever, and teach her about you, the woman who loved her first!

Do you think pushing your own wheelchair is acceptable 5 days Post Op Fontan?

Didn't know she was going to want to walk around outside or we could have put on shoes.  But wait with that IV in her foot--shoes don't fit anyway.  We can always wash the socks.  Just thankful she feels good.

A bit of fresh air.  She keeps asking if we can go home.....me too :(
Huahua has a home this Mother's day.  Her first time, a real home to call her own, pray for the little ones still waiting for their Mama to find them and bring them home.

Playing with her friend Nathaniel while mom took a shower.  She perked right up to see a friend.

Nathaniel watches over Huahua to protect her.  So sweet!

Feeling happy without those chest tubes.  She smiled for the X ray :)

A little family time.  The wheel chair is still the favorite.

Walking with Mama and Baba.  

Daddy getting some snuggles in with Huahua.

Happy Mother's Day 2014!  What a good looking crew!

Almost two years ago, God used this valley to humble our hearts and bring our family to learn one special way to serve and bring glory to his kingdom.  Follow the Lord's calling and he will  bless you!

Day 4 Post Op

Not happy during our first walk of the day, but got progressively better as the day went on.  We walked further and further and at one point I think she forgot she was attached to so much and tried to take off quickly!  She gives high fives to the other nurses around the floor. Notice the elevated heart rate after a short walk.  It's like a marathon for her at this point.

Sat in a chair for awhile today, enjoying the upright position more now.

This is a nurse for previous day...stopping for high five along the walk.  Apparently there has been a little jealous talk about who gets to have Huahua for a patient.  Supposedly if you had her first, you're her primary, but we seem to have many claiming to be the primary nurse!  It's great to be loved Huahua.  And she's even been grumpy, wait till she turns on the sparkle and charm :)

Pet pals visited the peds floors today.  She liked to visit, but not pet the dogs.  She rubbed them with her feet a little bit but with Huahua as a dog you earn her trust before I pet you!

This is Chip, both of these dogs have been in the program since we were here with Jackson two years ago.  What a great volunteer program at the hospital.  Thanks to the Pet Pals.  On the way off fifth floor we swung past the nurse's station and introduced Jackson's little sister to his two favorite nurses who were on duty- Betsy and Brian.  Again she wasn't impressed!  Might take a few more days to get some instant smiles.
Chest tubes are hopefully ALL coming out tomorrow at once.  Pray for that experience to go smoothly.  We will use Versed and lots of pain meds!

LATER IN THE DAY......

Daddy was able to get her to giggle.

Starting to feel a little better!  We saw a few smiles tonight.

Jordan was sad to leave, so Huahua was giving her some hugs to comfort.  Their sister bond is so sweet :)