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
Hi guys.
Sammy's still hanging in there. He had a few fits last night where he's clearly VERY unhappy, which is uncharacteristic for him, but in all fairness, the kid just had open heart surgery not even five days ago. On the other hand, we've had a lot more playtime out of him, and a lot more smiling, too. High and lows - but they're his highs and lows - not morphine's, not any other medication's... alllll Sammy.
They stopped the isuprel, which was keeping his lungs from spasming and keeping his heartrate elevated. They also took him off the pacer, so his heartrate now is all his own. The electrophysiologist came in to look him over this morning and started tossing around the real possibility of a pacemaker, at which point the head cardiologist (whom we LOVELOVELOVE) popped his head in and said, "Sammy will tell us what he needs." Even Sammy's surgeon said that while being in the 60s isn't optimal, he's fine with it as long as it only happens when he's sleeping. The good thing? So far, he's staying in the 80s & 90s - even while asleep!
Our feeling is this - if he stays in the 80s & 90s (even if he occasionally slips into the 70s while he's sleeping), they'll probably keep him in the CICU for another day for observation. Our hope is to be moved to the floor by Tuesday if they're happy with his heartrate and we have no other complications presenting themselves. (Knock on wood. Everyone. Now. ;-)) Though, we've learned to take things day by day - so our goal is to have another uneventful day like yesterday, upping his feeds, playing a little bit, and keeping those heartrates nice and happy in the 80s, 90s - and dare I even hope for it? - 100s.
I apologize for not returning emails/phone calls. All my energy is really wrapped up in Sammy right now, and I really don't like leaving his room all that often (we can't use cellphones here). Thanks for understanding.
Edited: He's in a deep sleep nap, and hitting high 60s. :-(
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This Hope for HLHS site belongs to Erika, Jason & Samson
my 23day old grandson had the 1st stage on monday. he was doing great until last night, his heart stopped 3 times! today he did fine, until a while ago when his heart rate went down to 50ish.
Posted by: sara LEE at March 2, 2007 7:13 PMIS THIS NORMAL???