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
How have I let months go by without updating? Bad mommy!
- Sammy turned two! We had a toddler party at a local indoor playground, and Sammy could not control his excitement! For weeks leading up to it, all he could do was tell everyone about his party and his cake and his cupcake and the balloons and all his friends coming to play. He had an absolute blast! You can see a video here.
- He had a post-cath, pre-Fontan check-up and did very, very well. He sat for the xray and told us all about the balloon he wanted to get when he was done. He wasn't a fan of the EKG, but even still, he did so much better than I anticipated. He even let us have a real conversation with Dr. Brown - of course, he spent those ten minutes covering Dr. Brown with stickers, but all in all, there were considerably fewer tears than I expected. He looked and sounded good, and we're a go for the Fontan on May 21.
- Yup, May 21. Preop on the 20th. Expected stay is 7-10 days. Trying not to think about it, want it to be done already, want to get on with our lives and have a summer full of Sammy fun ahead of us. It'll be nice to be past the purple fingers and wheezing and the getting out of breath, but the thought of handing him over again? There are no words.
Otherwise, Sammy is fantastic. He is developmentally on or ahead. He is speaking in clear, complete sentences - we're talking 8-10 words without a pause, sometimes more. He "reads" his books to himself (loves Knuffle Bunny, There's a Mouse About the House and the If You Give... series), knows all his colors and shapes, can count to 20 (though skips from 7 to 12 for some reason) and can sing the alphabet, though we're still working on letter/number recognition. He is still obsessed with music, can name instruments on sight (close to 25, including the oboe and bassoon!) - and many on sound ("Do you hear that, mama? Is that a violin? No! That a CELLO!). Thanks to Little Einsteins, he uses words like "moderato" and "fortissimo" in normal play. He absolutely amazes us with his love for music.
He loves to have "pick-i-nicks", insists that we all drink together at the dinner table (waiting for him to kick off a toast one of these days), loves chicken nuggets dipped in ranch & ketchup, is using the potty more and more, and still taking bottles at nap and bedtime - but is FINALLY napping in his bed and not the swing! He's just over 24lbs - he clocked in at the checkup at 24lb 4oz, but we've gotten him at 24lb 10oz at home. He's still on Enalapril and baby aspirin, for those heart folks who are following that kind of thing.
Thanks for checking in on our little guy (and for letting me brag a bit :-)). Your love and good thoughts are much appreciated.
Previous entry :And we're free!
Next entry: Checking in
You have a date! I know how frightening that is, and the road leading up to it is not a fun one, but it's so sos so good knowing that soon you'll have it behind you and you can enjoy and nice long fun summer together. I am praying hard for you to have as much peace as possible, as I know all too well how hard it is to anticipate the big day.
Sammy is so dang smart! Wow, are you kidding me? You guys have a smartypants on your hands for sure.
Take care! Feel free to email and vent any time if you need to.
Posted by: Megan at April 15, 2008 9:15 AMWow. A date for the Fontan! There really are no words. I look forward to seeing you all on the other side of this and that Sammy returns to his active ways as quickly as possible. We'll be thinking of you guys!
-Alison (Abby's mom)
Posted by: Alison (Abby's mom) at April 20, 2008 3:44 PMSammy is really smart! But, you didn't need me to tell you that. Soon, surgery WILL be behind you. I am praying as always for your little genius.
Posted by: Jennifer at April 25, 2008 3:42 AMMy new goal is to have Seth home so that I can just send positive thoughts and prayers out for Sammy.. How's that?
He IS smart, wow! Kayleigh's his age and she's not doing half that stuff.. Hugs to all you guys!
Posted by: Kathryn at April 26, 2008 10:19 AMDear Sammy,
Hope everything goes well with your fontan and with all our love and prayers I know you'll be ok.
All our best wishes to your and your whole family.
Posted by: Geoff & Donna Stein (Aus) at May 7, 2008 7:34 AMThe 21st seems to be coming up awfully fast. I know how it feels as our Bridgette has the Fontan the same day. We will say a special prayer for Your family that morning as well.
Just checking in to see how you're doing. I know it's getting close.
The other thing ... I'm going to be in Waltham from 5/19-5/23. Not sure how far that is from CHB but if you wanted a visitor ...
Email me and I'll give you my contact info (cell, etc).
Posted by: Tricia at May 14, 2008 9:40 PM(If you haven't left a comment here before, you may need to be approved by the site owner before your comment will appear. Until then, it won't appear on the entry. Thanks for waiting.)
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This Hope for HLHS site belongs to Erika, Jason & Samson
We're here for you. That's really all I can say ... I can't say it's not going to be terrifying. Just remember when it's all over life is SO much better :)
Posted by: Tricia at April 13, 2008 9:02 PM