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.
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying
Look who's 5!
Feeling nostalgic
Thankful
Cardiology checkup Nov 2010
Amazing little boy
Four years old
Happy holidays!
Home, home, home!
Recovery
Unexpected Open Heart Surgery
Fenestration-closing cath
One year post-Fontan!
NSTAR's Walk for Children's Hospital Boston
3 years old & cardiology visit
Wild Man
Update and Santa
Blue episodes and a cardiology appointment today
Ellie's Fontan
Post-Fontan Cardiology Visit
"You've gotta just let him be."
Sammy's Recovery from the Fontan
Life Post-Fontan
Bump from home
We are home!
Fontanized - Day 6 Update
Day 4 Post-Op 2:30pm Update
Fontanized, Day 4 Post-Op
Bump #2 - Pneumothorax
Little Bump
Fontan Post-Op, Day 2
Extubated!
Fontan Post-Op Update
Fontan Day
Fontan Pre-op Done
Checking in
Update, 2 years old, Fontan date, more
And we're free!
Pre-Fontan cath DONE.
Cath Day
Day 1, Pre-Fontan Cath Prep
Pre-Fontan cath
Twenty-three months: chatterbox, the holidays and the cath
Twenty-two months
Cardiology visit
Eighteen months
Seventeen months
Early Intervention Assessment
Fourteen month update
Miles for Miracles - Together in Heart.
Sedated echo
Look who's one!
One year.
11 1/2 months old!
Almost 10 months old!
Cardiologist Visit
Just about nine months!
Who is this kid, and what did you do with my baby?
Eight months old!
7 months old!
Coming up on 7 months
Six month update
Post-op Checkup & Life post-Glenn
And we're outta here!
Waiting to go home & a few firsts...
Truckin' along
Step-Down!
And the lines are OUT!
Happy updates
Post-Glenn, Day 4
Post-Glenn, Day 3
Post-Glenn, Post-Bronchial Spams, Day 3
Not fun - post-Glenn, night 2
Post-Glenn, Day 2
Post-Glenn, Day 2 - morning
Post-Glenn, Day 1, part 2
Post-Glenn, Day 1
He's out!
In surgery - updates
the wait
The night before the Glenn
Preparing for the Glenn
Update & Surgery
Milk Allergy Fun
Chatty Sammy
Cath Hospitalization
Catheterization
Gasmonster!
Teaching Sammy about the world.
Miles for Miracles
First bath!
Gassy infant prodigy
Rockin' Sammy
Revelations about mamahood
Babymoon, Part 2
Babymoon, Part 1
Home Sweet Home
Discharged!
Rumor has it...
Stepdown, Day 2
We have step down!
Today was pretty mellow
No step-down for you
Time to buy stock in St. Joseph's
One step closer
Extubation!
One step at a time
Done with the closing
Chest Closing
Birth story
Chest Closing & Mama in Triage
Recovery
Out of Surgery
Welcome, Sammy!
Samson Arrives
Labor update
Of due dates and inductions
Baby Grace
Snow baby?
Welcome to the jungle
Getting closer...
37 1/2 week update
Fighting the bad thoughts
Getting bigger - and closer!
31 weeks with Dr. Brown, CHB
31 Week Appt. w/ Dr. Johnson
One big monkey!
Starting to Get Ready
30 Weeks and Full-blown Panic
Silly Pregnant Lady
27 Week Visit
Fears
EFO Shout Out
Weird Pains & an Early Morning Trip to the Hospital
Fetal Echo at Boston Children's Hospital
DiGeorge's - Negative!
Evil Genetics Counselor
Full amnio results
22 weeks and Life Now
Pediatric Cardiologist
Redefining Normal
FISH Results
Embarrassing the poor boy already
The Baby's Name
Post-Amnio
Pre-amnio, Baby痴 name riddle
Reiki energy, and not being alone
Friends and Tarzan
Trying to get through the day
The diagnosis
Trying to stay positive
Pre-Diagnosis
Sammy is now one year post-Fontan!
The further we get away from his surgeries, the more I can look back at just how difficult and amazing the past three years have been. When you're in the throes of it, it is emotional and scary and hard, but when you can look back on it, it's truly impossible to acknowledge the hugeness of it all.
Thursday was one year. I climbed up into his little bunkbed and snuggled him while he still slept, amazed and feeling so blessed. He got up, had breakfast and went to preschool like a typical 3 year old. We picked him up and took him out for ice cream to celebrate, and then he was off for music lessons - drums. Sure, sometimes (not always!) he tires a little easier and has perpetual blueberry lips, but to realize that he's been through 3 open heart surgeries and is just about as normal as any other kid - it's incredible.
The strange thing? I felt all day long that May 21, the day of his Fontan, was really his birthday. I know his real birthday is in February, but it felt like he was truly given life on May 21. And in a way, he was. And we will forever be grateful for that.
(While you're here, would you mind donating to our walk in support of Children's Hospital Boston? We cannot begin to express our gratitude for all they have done for Sammy and countless other children. Thanks so much!)
Previous entry :NSTAR's Walk for Children's Hospital Boston
Next entry: Fenestration-closing cath
Me too. I felt the same thing with Elijah's 1-yr-anniv. this year.
I can't believe it has been a year already! Wow! It seems like just a few months ago that I was reading about Sammy's surgery and recovery.
Happy belated heart day all of you! xo
Posted by: Megan at June 4, 2009 4:20 PMI just found out at our 20-week appointment on Tuesday that our son has HLHS and VSD. We see a pediatric cardiologist on Monday. The past few days have been the most difficult of my entire life, with emotions ranging from both ends of the spectrum. My husband and I are still reeling with the information, enjoying time with our 2 year old daughter, and are very anxious and scared about our little boy's future.
I found your blog today and read through the entire thing in a matter of hours. It certainly sounds like there are a LOT of ups and downs, and it still seems so very scary to me. But you and Sammy have given me a hope I didn't know I could have after receiving this devastating diagnosis. My hope and prayer is that God will keep our son in His hands and that he'll make it through the 3 surgeries with flying colors.
We live in South Carolina, and for the past few days have been researching the best children's hospitals in the US. Boston keeps coming up in our search. It sounds like you received excellent care there, but it's so scary to think of uprooting our little family all the way to Boston for who-knows-how-many months.
Anyway, I just want to say congratulations on making it through this difficult journey and also thank you for providing me with a glimmer of hope.
Posted by: mom2lo at June 19, 2009 4:43 PMHi,
I happened upon you on Twitter and decided to check out your blog. Very nice!
My son Eli is 3 and has L-TGA and hypoplastic right heart. He just had a modified Glenn procedure, ASD closure and sub-pulmonary resection done in February. We're told he won't need the Fontan.
Anyway, it's always nice to meet another heart mom!
Lisa @ All That and a Box of Rocks
Mom to 6-4HH and 2CHD
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This Hope for HLHS site belongs to Erika, Jason & Samson
Happy Fontaniversary!!!
Posted by: Tricia at May 24, 2009 11:42 PM