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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Sunday, December 1, 2013

Day 3: Remembering Lilly - September 2010

This is my 3rd post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

September 4, 2010 - October 3, 2010

On Labor Day weekend, we took Lilly with us to visit Frank's family at their river house in eastern N.C.  Lilly's weight was slowly dropping and she was having to work harder to eat.  (Her heart was to blame for this.)  She was hurting more and cried a lot of the night, making me cry too.

She finally fell into a restless sleep towards morning.  She looked so sweet sleeping on the couch she shared with me:
Once home, our search for the heart surgeon became more intense.  My aunt helped out by calling hospitals around the country.  Then lo and behold - she found a hospital that said "yes" and it was a hospital less than 30 minutes from her home!  Wolfson's Children's Hospital in Jacksonville, Florida.

We sent Lilly's records and I talked with the head cardiologist on the phone.  He was not afraid of Trisomy 18!  And he said they had helped other children with Trisomy 18.  Six days later we were in Florida and Lilly was checked into Wolfson's!

The doctors were very concerned about Lilly's low weight so they first worked to stabilize it and then get some ounces back on her.  The bottle was just not working as she was burning too many calories drinking little amounts.

So she had to get an NG feeding tube.  She did not like it!  (And can you blame her?  The feeding tube went through her nose, down her throat, and down into her stomach.)

having a bad nose AND bad hair day
The NG tube worked!  Lilly quickly began to feel better and start putting weight back on.  She had a bunch of ups and downs in the hospital, which you can read about in my September and October 2010 posts.  But still, she made steady improvement and was finally strong enough to have surgery to have a pulmonary artery band placed in her heart.  (She just wasn't strong enough for the complete heart repair surgery she needed.)

The PAB placement surgery went smoothly and the doctors were very pleased with how quickly Lilly recovered!

Not too long after the surgery, Lilly was discharged from the hospital and we were headed back to North Carolina, where she was to stay under the care of Dr. R, her local cardiologist.  He would monitor her and alert the Wolfson's doctors when he thought she was ready for the heart repair surgery.  Our job was to continue to try and get weight on her!

Two non-hospital good things from this month were: Lilly was not clenching her hands as hard anymore and ... she had learned to coo!

Getting ready to leave the hospital

Going back home to N.C.
"Sustain me, my God, according to your promise, and I will live; do not let my hopes be dashed." - Psalm 119:116

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