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In a heartbeat…

Today my baby girl is fighting for her life and instead of begging you to sign up for a virtual race or to buy a t-shirt,  I am begging for your prayers.  Her heart is strong and functioning properly for the first time in her life.  They think her lungs are in shock from the new flow and do not know what to do. This took everyone by surprise because she did so well in surgery and for the first 36 hours after and that is not the typical response to wait a day or so to start. There are no signs of infection, thank God.  What ever the cause is, she’s now in respiratory failure.

Today my baby girl is fighting for her life

in a heartbeat - our crazy blessed life

We checked in on Monday afternoon for all the pre-op fun, that night Lizzie could not sleep so we played and watched Cinderella at 3 in the morning.  Most importantly, I pushed aside my normal style of mommying and held her all night.  No matter the outcome I will treasure that night for the rest of my life.  My sweet, silly girl.

Tuesday morning came, they took us down to the surgery holding area and all of a sudden it was time to go.  They gave her a dose of versed and she threw her head back and laughed and laughed and could have cared less when I handed her over to the OR nurse.  I think the medicine may have done more to calm my momma nerves than it did to help her.  So off she went without me, behind a set of doors I knew she had to go through.  No matter what happened behind those doors I knew our precious daughter needed this chance.  While she was happy and vibrant and beautiful and wonderful, she reached her peak, without this operation there is no way she could continue to grow and be all the amazing things she has become.  I have to keep reminding myself of this.

 

in a heartbeat - our crazy blessed life
Lizzie’s hand pre surgery
in a heartbeat - our crazy blessed life
Lizzie’s hand 1 hour post surgery, love those pink fingers!

While this is the hardest and most painful thing either of us have ever endured, we would go through all of it again in a heartbeat.

There were a few surprises during the actual surgery but in the end it went very well.  The surgeon came out smiling and pumped about the outcome.  Lizzie did great through the night and the next day was taken off the ventilator.  She smiled and reached for me and was comforted by us singing to her and stroking her forehead.  On Thursday morning I was able to hold her, she looked at me with her sweet little face and I was in total awe at her beautiful pink lips and fingers and toes.  I still am.  It was smooth sailing, just like I planned.

Around noon she seemed a little restless so I held her again,  I sang to her and she calmed down.  She started to act really tired so I laid her back down so she could nap.  When she woke up, she never really seemed to wake up.  She just stared right through me and her oxygen saturation began to drop. I tried repositioning her and stimulating her to get it to come up, but it didn’t work.  She would not track or focus on anything, she wouldn’t flench.  Her doctor came by and asked if everything was ok and I said no.  He did a quick neuro check and sent her to CT.  Having started in the Neuro ICU out of nursing school, all the horrible possibilities went flying through my head. It did show she had a bleed on the brain (more than likely the results of blood thinners from surgery and low platelets), but it was determined to be very insignificant and not the cause of such a drastic neuro change.  They monitored her for seizure activity for 24 hours, there was no evidence of seizures, just brain waves consistent with sleep.  Only problem is she was awake.

 

in a heartbeat - our crazy blessed life

Her oxygen levels remained low.  After attempting several other things her levels continued to drop.  She became completely unresponsive and her breathing was very labored. Her lungs stopped working and CO2 began to build up in her body, and this caused the neurological changes.  So she was put back on the ventilator yesterday.  It hurt so bad to have this setback but it was agonizing to see her struggling so.  She is resting now as the ventilator does the work for her.  Today they had to put her on different ventilator called an oscillator.  It basically shakes her lungs promoting gas exchange while allowing her lungs to take a rest.  She is completely sedated and able  to heal now.  Her heart seems to be doing very well and the rest of her body is good too.  My prayer is everything remains that way.

The doctors are optimistic, but remain puzzled by the “why’s”.  I feel really good about her medical team, there seems to be a genuine love and concern for her by everyone involved.  From her cardiac and neuro surgeons to the sweet sweet housekeeper who came in here and saw me devastated.  She put her mop down, held me and reminded me that the Lord is with my baby and with me.  We feel lifted up by your prayers and we feel held, we are not alone.

This precious child, Susan Elizabeth Fowler, has brought so much joy to our lives.  Our family has been blessed beyond measure. While this is the hardest and most painful thing either of us have ever endured, we would go through all of it again in a heartbeat.  Just to see her smile, to hear her amazing little laugh, to hear her precious little voice, to see her first steps, to see her boss her big brothers, to watch her melt her daddy, to be her momma.  I’d do anything.

 

My biggest fear in all of this is that our situation would deter a single one of you from doing what God calls you to do.   All children deserve a family, to be loved…

in a heartbeat - our crazy blessed life

Follow Lizzie

Touch the Sky is working to support the adoption of a girl who was previously advocated by the name Tamarix. She is a bright, beautiful 12 year old little girl from Xi'an China who is deaf. She loves to draw and the orphanage director says she often draws picture of a family. She very much wants to be adopted and wants a family desperately.  Go to their page to learn how you can donate or buy a t-shirt/tote bag to support a grant that will allow a family to bring her home.

Start From The Beginning

You will find out just how crazy, strange, funny, sad, happy, weary, and BLESSED our story really is!

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Lizzie's Story

Start when we first met Lizzie for the first time and how she transformed our family forever!

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Our Hospital Story

The story that will take you through the struggle and joy of having a medical baby

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10 Comments

  1. Martha Meadors

    We are a Lifeline family who brought home our 5 yr old boy in April. He had heart surgery in July. Just wanted to tell you that he went off and back on vent less than 24 hours after surgery. He stayed there to give his body time for 5-6 days. When they took him off again, he did beautifully.

    We are praying for your little Lizzy to be healed and thriving. He is able!

    Reply
  2. Diana Dopp

    Praying for your precious child. My daughter had an illness that they said she would not live past 10 years. She lived until she was 34,prayers are what gets you through. Only God knows what the future brings, I so wish you have a bright future with your precious daughter as I did mine.

    Reply
  3. Judi

    Praying for your little one and for your family as well.

    Reply
  4. Carolyn L Rains

    Thanks for letting us know what is going on and the pictures to give us an image to pray on. I am praying for Lizzy every day and praying for you and the family to have the strength to hold on. “Thank you God for the medical team”
    Love, Carolyn

    Reply
  5. Beccy

    Still praying.

    Reply
  6. Rebecca

    I love reading your momma’s heart for her. Been praying for answers and healing.

    Reply
  7. Lark

    I’m a friend of Krista’s and saw her post about your little girl. What a trooper — both you and her! I am praying for your family.

    Reply
  8. Shelley Corrette

    We are praying for all of your family and little Lizzie 🙂

    Reply
  9. Dusty

    It was a blessing to meet both you and Lizzie today. I hope to see more of y’all. God is so awesome. Prayers for her swift recovery and peace for you. Blessings

    Reply
  10. Kelley

    Our beautiful girl is 15! She came home from China at 2 1/2 and had open heart at 8. She has now been dx with a connective tissue disease and has some high risk heart issues. I am a nurse, as well, so it is hard when you know too much. I will say that this is also the strongest of our 4! The most independent and such an old soul. She teaches me something with every passing day. I can’t imagine I would be “me” without her as my daughter. We also have another precious daughter adopted from China. She was 4 1/2 but her sn was age. She is a vibrant and talented 12yo now. We are so lucky and blessed to be their parents. I sometimes question why God would chose me. It is such an indescibible love for our entire family from their older siblings to grandparents. May God bless you on your journey. Prayers for a quick recovery and strength for all of you.

    Reply

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