Day 3 Post Op

 We took about a 30 ft walk today. This was on the way back to the room.  Not a fan of walking yet with the chest tubes and her entourage of medical things hanging from her body and following her around.  She does like sporting her blue glue which she wore for about 5 hours today.  She's practicing being a Dr.  Tonight she even replaced her lead stickers on her body!  Love to see the spunky self returning.

Made the corner and straight into her room!  Her surgeon is very pleased with her progress and said at this point she is ahead of the curve.  We always knew she was a high achiever ;)   Two of her chest tubes are drying up, while the third is continuing to drain.  She needs to start eating and have a bowel movement to start feeling better.  Pray for her to regain her appetite and get things moving internally.  All the narcotics are tough on the body, but necessary for pain control.  She has been managed well and we've been using about 1/2 the dosed narcotics.  She is a very tough cookie!  

A little doped up on pain meds....watching "Frozen"

 

Today we had a couple visitors and I was able to get a quick shower.  Thank you Meagan!  She was not happy I left the room, but it felt so good to get cleaned up! Her little friend was here to play but she's just not in play mode yet.

Below are Pictures from yesterday 5/8/14

Gotta love the brothers

Sweet Adoration

Tender Love

Everyone gives a little and hurts for her.  This is part of the whole experience of adoption and learning how the give to others not just physically, but emotionally in a time of need.  So proud of my children.

Jordan enjoys the extra goodies and snacks around the hospital :)

Missing mommy is hardest for her.

Jackson still loves to show off his tricks in the wheelchair.  Been there, done that, Hopefully NEVER going back!  He thought it might make a good talent show act.  With his fixator on , he loved to pull the break checks on his teachers just for fun :)  Gotta love that sense of humor.

Enjoying a little piece of chocolate to entice the appetite.

Day 2 Post Op

She made it.  The goal was to get out of bed and walk and she did.  Can you tell how she felt about it?  The reward....a long nap with mommy in the rocking chair.  She is doing very well today.  A bit low on some of her labs, because of not eating and trying to keep her on the dehydrated side to allow for her lungs to dry out.  She is still draining quite a bit of fluid out of her lungs and at best the chest tubes will start to come out Saturday, but more likely on Monday.  She has been a real trooper so far and is not complaining, except if we make her walk.  She has not begun to eat and was not wanting much for fluids until this afternoon was enticed by some chocolate milk.  Her siblings are coming tonight so hopefully that will raise her little spirit and get the belly going.  This afternoon the monitors were going off and she said "Quiet, I can't hear Frozen"  We've watched "Frozen" and "Nemo" a lot!  She's still got her feisty self and knows what she wants.  Thanks for all your prayers and support. 

Day 1 post op

Yesterday (surgery day) I actually woke up with a peace about the day.  The first thing I read was the prayer from an adoptive father the day he was going to meet and become a father to four children....."Lord I confess my mind is racing with imaginations of what lies ahead.  This is a little scary.  Grant me the grace and peace today I pray as we go forth.  What an incredible journey of adoption parenting.  Help me, Lord, today to focus to be still, to hear Your voice.  I know you are ever present....You have prepared us for this day, this season.  As I look to You in Your word, show me Your Glory...."   From Orphanology by Tony Merida & Rick Morton

He has prepared us for yesterday, this season.  Not that yesterday didn't still stink,  Handing her over was still scary, but I was at peace.  We know God's will WILL BE done and the more we submit the easier it becomes the handle the ups and downs, that are out of our control anyway!  We can give praise she is here, in our family, loved, protected and has access to medical care.  Her life has reason, purpose and this is just one small part of this year we will endure.  She is so much more than just a "heart baby".  She is a sister, a daughter, a niece, a grand-daughter, a friend, an advocate, a voice for those left behind, a miracle, a gift of pure joy to the world.

Last night she continued to be irritated every 3-5 minutes waking and crying.  They changed meds and we just could seems to get her comfortable. She continued to stop breathing while sleeping and then would obviously be irritated when we would stir her back.  The attending removed her pace maker about 2:30 am. to see if the sinus lobe was returning its function.  Within a few minutes she began to settle down a bit and breathing became less labored.  So the pace maker was left off the rest of the and she was able to rest somewhat better.  Her functioning has been good and the pace maker was not put back on.  Apparently the fontan circulation does not start completely functioning for a few days, but it's unbelievable to see her complexion is pinker and her nail beds are no longer purple!

Ryan stayed most of the day and Mom was able to take a nap in the sleep rooms!  Yeah!!!  Then Huahua took a nap on me out of bed and snuggled with mommy.  She has wanted either Ryan and I bedside constantly.  Good that we are her people and she trusts us to provide her that comfort while she recovers.  Thank you for all your prayers and support.  She has a long road ahead but is very strong willed and sat up today.  She wanted to stand up but then forgot about it after sitting up!  Pain meds make her forgetful, grumpy and loopy!  Pray for her as we are limited to the amount of fluids she can receive because of her heart/lung function right now.  They want her to become "dried out", allowing all the fluid/ blood from her lungs to drain (see picture below).  With her history this is very hard to impose on her and pray we can distract and still reassure her we love here and are providing for her needs.

Out of surgery and difficult evening

The surgery in and of itself was very successful and now we are in the difficult period of recovery. The surgeon was able to place the fontan shunt in the optimal place with essentially a small hole in it for pressure relief.  During the surgery her sinus node was giving intermittent impulses and eventually they were not able to get it to give consistent activity, so she was places on a external pace maker.  Hopefully over the next few days that issue will resolve itself when the swelling goes down.

She came straight to her ICU room about 6:30.  She has been terribly irritated and in a lot of pain. Her oxygen stats have continued to drop to low levels because she continues to hold her breath and refuses to breathe.  We assume it is due to the pain.  She is strong willed as we know and has a fighting spirit.  Pray for her recovery at this point and healing both physically and emotionally.  Even though she was extremely excited to come to the hospital, I think she may have others feelings now :(  This has been traumatic for her body in so many ways, but so necessary.  We will walk through the next few days faithfully trusting in the one who created her for His glory.

Off By Pass

Just received word Huahua is off by pass and doing well. Also reported that they were able to connect her with an external shunt from the interior vena cava to the pulmonary aorta.  Awaiting to hear if Dr. A was able to put a drain hole in the shunt to allow for pressure changes.  This is great news as things seems to be progressing as Dr. A had hoped.  Pray for her to continue to be strong in surgery and her pressures match what is needed for her passive blood flow to work.

Ryan and I are moving our things up to the ICU room now in anticipation of her coming out of surgery in the next few hours.

In surgery

Huahua was up bright and early with us.  Wanted to be held a lot this morning by us both while getting ready.  Funny how they can sense something's up even though she was still very excited to come to the hospital.  I eventually gave her the new Dora purse planned for the hospital to hold her over so we could get ready.  She fell back asleep on the way here.

The morning has gone smooth.  I took her back to the operating room while she watched Nemo on the anetheselogist's phone and she played around with the tubes.  Of course she wins anyone over within seconds and they begin to play with her, amazed with her language and pose.  God is using her for His purpose and I love to watch it unfold.

Our first update was about 9:15 and they had placed all her central lines and IV's and they were moving onto the next step of cutting through the surgical scars from previous Glenn procedure.  We just got word about 11:30 that she was put on Bypass and that she was doing well.  Pray as her heart and lung functions are being done by the machine and that her cognitive functioning would not be effected.

Ryan and I are doing well.  Trisha came and prayed with us and brought us some goodies!!  Staying busy walking around the hospital with our pager.  Trying not to sit still and think to much about what is really happening to our precious girl.  She should be on bypass about 1 1/2 to 2 hours for him to place the fondan shunt to start the new circulatory process for her heart.  The blood will then go directly fro the lower half of her body to her pulmonary vein to her lungs, bypassing the heart completely.   Incredible!  Then her single ventricle heart will only have to pump the oxygen rich blood out to her body.

Thanks you for praying!!! God is in control.

We do it out of Love........

This feeling of sadness circles around, as the day approaches.  Two more days.  The day we had hoped would be a year or at least many months away after she came home is closing in--the day we hand her over the a surgical team to make another palliative repair to her so uniquely formed heart.  It's a feeling we have experienced before with Jackson and it's that feeling that we experienced so many times before that led us in our faith to pursue adoption.  We are still human so I still have these emotions.  We can pray for her Fontan procedure to work, for the surgeon to know how best to attach the conduit, for her pressures for measure where they should for the passive blood flow to work and I will with all sincerity because God wants to know my heart.  And in the end I must submit to him and Pray for HIS WILL to BE DONE.  No matter what.  When we decided to adopt Huahua we did knowing her heart was what the medical field would call defective in many ways, so much so her native country wrote her off and wasn't even going to try to repair her heart. But we know God created her for a purpose and I continue to walk faithfully in this journey, love her as our daughter, no matter how much it hurts, until his purpose is revealed.

As we enter one of the hardest weeks, we remember we do it out of love.   As a parent we make decisions for our children out of love for their best interest.  Just as God sent his own son to die to save our lives by giving us the opportunity to become his children.  Adoption is a true reflection the gospel.  We have the opportunity to give of ourselves to care for the fatherless and live out the gospel.  We DO it out of love because Christ first loved us!

In the past few weeks, two families in the church have started pursuing adoption.   This past year other two families have also been pursuing adoption.  God has planted a seed in our church and Huahua's sweet smile has helped bring adoption to the forefront of many minds and may God use her for his Kingdom and finding homes for the fatherless.  We enjoy every moment, every laugh with her.  She is a treasure and joy for everyone she meets.  To think just a few months ago she spent her fall days out on a artificial lawn, with hundreds of other little ones, very few toys and very little guidance.  She transitioned into the line with others for meals, sponge baths and went to sleep without a mother and father to snuggle is heart wrenching.  Every child deserves a family, no matter what their supposed disability, or circumstance.  God calls it our duty to serve the fatherless as a reflection of the gospel.  I am so thankful we followed his call to adopt this princess.  This pain we feel this week may be heavy, but the joy we will reap from her in our lives is immeasurable.

Even though it feels like she's been with us forever, it's only been four 1/2 short months.  I thought I would share with you the day we met.  Magical....like all children....sent from heaven.

https://db.tt/a8ufFTNp   Gotcha day!
https://db.tt/qz3LGsC2   Playing together in civil building after nannies left.
https://db.tt/Fq0Gopd3    Watching water display outside civil building. An hour after she met us!

Three year old picture.

My siblings-Justin 10, Jackson 8, Jordan 5, Jessica Sihua 3

Race fan!

Coloring Easter Eggs

Loves her tum tum (candy!)

Hunting for Easter Eggs

Learning to ride a tricycle.  She prefers the dirt bike!  "Go faster!!!"

Hide and seek

Movie Nights