Lily's third surgery was supposed to happen this morning but has been rescheduled because of spiking fevers throughout the night. It is tentatively set for Thursday and this means that we will definitely still be in the hospital for Christmas.
While on a short run yesterday morning in 40 degree misty rain, I came to the conclusion that my time spent in road bike racing was easier than these past weeks. My best year I road over 4000 miles and raced in many local races and even finished in the top 1/3 of the Ohio state criterium championship. The high heart rate, white-knuckle races were easier than having to deal with your infant daughter's multiple heart surgeries. I would recommend anyone read "It's Not About the Bike" which details Lance Armstrong's struggle with cancer.
3 comments:
David and I are praying for all of you. It just makes us want to cry that Lily needs another surgery. Please know we love you all and cherish the moments, however short, that we were able to spend with Lily. She's a sweet, beautiful baby.
I received your information from Sarah's mom (I don't know their last name) on Sarah's blog. My daughter is 19 months old and also has Down syndrome, and also had to have open heart surgery. It is such a stressful time for a family. We're praying for you guys.
I received your blog from another Down Syndrome mom. Reading Lily's story is verbatim like reading about my 19 month old Julia's journey last year. She had the AV canal and it went well, except we came out with a moderate mitral valve leak. Slowly she declined. They attempted a valve repair a month after her AV canal and it failed. They had to put an artificial valve in when she was just 4 months old (it was her 4th heart surgery). She has a St Jude's 15 mm valve which I think is the smallest one made.
She spent her first 8 months in the hospital, 4 months in the PICU on a ventilator and will have another surgery next year to put a bigger valve in. But, I tell you that to look at her today you would never know she had been so close to dying. She is 19 months, is saying words, eats everything in site, is starting to walk and is just the biggest bundle of joy you have ever seen.
We also had a 2 year old at home while Julia was in the hospital so I know what hell that is. If I can do anything to help ease your minds or answer any questions, please email me. The best advice I ever got was just take it day by day, don't look to far ahead into the future.
I will keep Lily and your entire family in my prayers.
Kimberly Diokno
kdiokno@gmail.com
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