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
We had a cardiologist check-up for Sammy today. Everything's a-ok. If anything, our card is thrilled with everything except Sammy's weight gain (or lack of it - we had a few weeks of teething and reflux that made it tough for the monkey to keep much down). He said his tricuspid regurgitation is better than it was in October, and in October he had told us it was the best he had heard in Sammy EVER! So I'm thinking that was a good thing.
I also asked about the next surgery. Part of me wants to get it done with sooner than later, because I don't want Sammy to ever remember any of it, and the older he gets, the more he's understanding. The rest of me wants them to do it when he's like, 80. I know they do the Fontan as early as 18 months, but his card seems to think we'll still be in the 2-3 year range.
We have a running joke with his doctor - every time we come in, Sammy's got a different diagnosis written on his sheet. Technically, he's not HLHS, though they categorize him as such because he needs the three surgeries and will end up single-ventricle. On our last visit, he was labeled DORV (double-outlet right ventricle - even rarer than HLHS), and when his doctor asked us today what we wanted him to write on his sheet, I joked , "Mitral atresia." He laughed and said, "Yeah, that's my favorite, too."
Nothing like a little heart humor, right? I know there's a list out there - you know you're a heart-mom when... and I should add this: I know I'm a heart mom because the other day I was driving behind a car with "SVC" in the license plate - and all I could think of was "Superior Vena Cava."
(Seriously, though, his diagnosis is a combination of mitral atresia, hypoplastic left ventricle, coarctation of the aorta, malaligned ventricular septal defect (VSD), natural atrial septal defect (ASD). Who knew that someday I would know what all of these mean?)
The visits always leave me exhausted, like I've been crying for days and now I'm just wiped out. I don't know if it's the anticipation, the worry, the fear that something's wrong and we'll get wisked right from the office into the CICU, or the ultimate fear - that there's something really wrong and they can't do anything about it. Most of the time, though, I feel like our cardiologist is "patting" me on the head with his words, like Oh, sweet woman, he's okay. Really. Get some sleep, stop worrying so much and enjoy him for the great little boy he is.
Then we got home and he ate a ridiculous amount of avocado, let me chase him around the foyer, played piano, took a good long nap, read a book, crawled around some more, cruised around the furniture for a while and then ate some more. We snuck a walk in there, too, and even in the wicked cold, he stayed a lovely shade of pink. We went into this expecting a child who napped a lot, would be behind developmentally, would turn blue easily, and would likely have feeding issues. Instead, we ended up with the happiest baby in the world who, as we were told today, looks like he should be in a Gap ad and wears this mama out with all his energy.
Ok, enough gushing over how amazing he is. Knock on wood, kiss your kids a few extra times tonight, and be grateful for everything you have. I know we are - in case you couldn't tell. ;-)
Previous entry :Just about nine months!
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This Hope for HLHS site belongs to Erika, Jason & Samson
It is so wonderful to see how well your family is doing. Sammy is a cutey pie and I enjoy checking in on him and seeing him hit his milestones! You are right, he is amazing!
Posted by: Amy Fiorillo at December 13, 2006 1:17 PMYou have done such a service to families by having such a wonderful website. Although there will always be stress and worry, to see how positive life for these kids and their families can and should be is so valuable.
Keep up the great work Sammy!
Have a Merry Christmas and a Happy Healthy New Year!