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
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 seventeen months old, though some days I swear he thinks he's three. He keeps us on our toes - or at least in running sneakers - he is quite the energetic little man! He truly has more energy than we could ever have imagined, running circles around the other kids. We have noticed, however, that he breathes heavier when doing things like climbing the stairs - but it definitely does not slow him down! We took him camping at our favorite folk festival - Falcon Ridge - for four days. He did great, dancing up a storm and running around the hills. You'd never know he has a heart condition. (Knock on wood.)
We've been lucky - he's had no developmental delays whatsoever. If anything, Early Intervention's last assessment put him a bit ahead of the game. We're just happy he's happy and doing what a kid his age is supposed to. He's starting to sing his A-B-Cs (with prompting - "What comes next?") and he's a huge fan of Patty-cake. He'll sing along and make the motions - roll it, pat it, mark it. Too cute. He's also obsessed with his guitar, dragging it around the house, plucking the string and then singing. His vocabulary seems to grow every day, and he's a huge fan of saying "More please!" complete with matching signs. He's eating much better, too - loving anything fruit or veggies. We actually have to refrain from giving them to him sometimes because if we do, he won't eat anything else on his plate!
We're still chugging away towards 21lbs. He's still in the 5th percentile for his weight, following the curve just as he should. But he's quite tall for his weight - coming in at 32 inches at in the 50th percentile. Finding pants that fit this kid is quite the challenge!
In a few weeks, Sammy will start school for a few hours a day. This is so I can go back to work for a bit and Sammy can get more socialization than I can give him at home. I'm having a hard time with it, but I know he'll do great - he LOVES other kids and loves playing. When we interviewed the school, he went around and said hi to every kid and then made himself at home with the toys, barely even noticing that we had left the room.
As for his heart: we have a cardiologist appointment in September, where we've been told he'll be switched (FINALLY!) from Captopril three times a day to Enalapril twice a day. He's still on 1/2 a baby aspirin, but we've weaned him from his Zantac. They'll also schedule his pre-Fontan cath at that appointment, and then after his cath they'll schedule the Fontan. We expect it'll be sometime late spring - May or June. We're also hoping to be able to schedule it for the same day (or within a day) of his heart friend Ellie's Fontan. This way, we'll be in the hospital with Alicen and Chris for recovery - a great support for Sammy, but also for Mom and Dad.
Previous entry :Early Intervention Assessment
Next entry: Eighteen months
I can't believe how big he's gotten! Thank you so much for the mat recommendation for Abby's tummy time. She loves it!
Posted by: Alison (Abby's mom) at August 1, 2007 10:22 PMWow!! What a smart little boy! Way to Go Sammy! I cant believe it is already getting close for him to have his Fontan... Time flies! Hope you all are doing well, we think of you often...
Posted by: Faith at August 1, 2007 11:11 PMYou have such a beautiful little man! It's soo wonderful to read success stories like this. Our Baby Elijah just had his first heart surgery (partial Tetralogy of Fallot/MAPCAS repair) in May and we, too, worry a bit about developmental delays and weight gain, etc.. In the grand scheme of life, it will all even out, but it still concerns me daily.
Best of luck to you guys! The Fontan is the last surgery for HLHS, correct? That sure will feel good to get behind you.
Posted by: Megan Porta at August 4, 2007 4:05 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
It is so good to hear how great Sammy is doing.
Posted by: Michael at August 1, 2007 8:44 PMThanks for the update.