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Photo Sets:
Pictures from Stage 1, the Norwood
Pictures from Stage 2, the Glenn
Pictures from Stage 3, the Fontan Please note - these pictures, for the most part, are "safe". If you're interested in post-op pictures from the Norwood, please email us at us@babysamson.com for access.

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Miles for Miracles - Together in Heart.
posted by Mom on March 30, 2007
Walking
Sammy, training for the 7-mile Miles for Miracles walk

Our son Samson was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. We knew at 20 weeks pregnant that he would need three open heart surgeries, the first when he was a tiny four days old. Little did we realize how blessed we were to live so close to Children's Hospital Boston, one of the best hospitals in the country for children's cardiac care.

Sammy spent a month of his first year of life at CHB - a total of 29 days for surgeries and another 3 for dehydration and an upper respiratory virus. He spent 14 in the CICU after his first surgery, the Norwood procedure, and 5 on the "step down" floor. Then, at five months old, he spent 10 days at CHB after the second surgery, the Glenn procedure. Each person worked as a team that moved seemingly effortlessly to give Sammy the very best care possible. We can't find enough ways to thank them for giving Sammy such a fighting chance. Helping to raise money so that CHB can continue their research, support their doctors, nurses and staff and take care of our children in the best ways possible - that's a cause we could get behind!

It is for Sammy, and for many other reasons, that we are walking Miles for Miracles this June.

Many of you know our close friends Susannah and Reilly. At 20 weeks in-utero, little Jack was diagnosed with an endocardial cushion defect, a heart defect that will require open-heart surgery at CHB. We knew that Jack and Sammy would be lifelong buddies (like their dads!), but we would never have imagined that they would share this as well. Jack is due in July and we know he is in fantastic hands at CHB.

Last year we walked as Team Sammy with some of our amazing family and friends. This year, we're joining with Su, Reilly and little Jack-to-be, as well as our good friends Alicen, Chris and their little girl Ellie and Amy, Lou and their son Jack. We met Alicen & Chris before Ellie was born and spent many a night together as Sammy and Ellie recovered from their Norwood surgeries together. We met Amy, Lou and little Jack when we were in for Sammy's Glenn. Jack was just a newborn, in for his Norwood. It's amazing the bonds you form as heart families!

So, more appropriately this year, our new team name is Together in Heart!

If you're local, please consider joining our team! You have the option of doing the 2-mile walk or the 7-mile walk, both along the beautiful Charles River. If you can't join us, if you've been touched in some way by Sammy's story and life, please consider donating to help us reach our individual goals of $1,000. (Donate to Jason or Erika.) We don't have enough ways to thank CHB - we'd like to make this one really count!

Thanks!

Previous entry :Sedated echo
Next entry: Fourteen month update

Comments (1)

Hi...

I wrote you before, I have a 9 month old with hlhs. I was noticing on your pics that your little guy was napping with a stat probe. Is that required for him, or did you guys just buy one for your own sanity?

Also, what are Samsons oxygen levels? And one more question... What medications are Samson on? Sorry for all the questions, I'm just wondering where Everett is at... it's nice to hear about other kids progress.

Thanks so much, feel free to not post this but if you could email me at expeditionkae@hotmail.com that would be awesome!

~Karley

Posted by: Karley at May 16, 2007 9:54 PM
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If you've recently received an HLHS diagnosis
PLEASE contact us if you want to talk. Having others who have been through this there for us (even when we just needed to freak out!) has been so, so instrumental in coming to terms with what's we're up against.

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If you're looking for info on HLHS
Please check out the resources. We were overwhelmed with what's availabe on the Internet; hopefully this will narrow it down a little for you. Be sure to read up on all the babies who are doing well - there IS hope!

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