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Showing posts from May, 2014

Playing in the dirt

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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!

The Hills and the Valleys

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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 sunse

We're Home!!!!

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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

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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 trul

Day 10 and Day 11 Post OP

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 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

Day 9 Post Op

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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.

Almost went home :(

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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

Day 8 Post Op

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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