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
Hey.
Sorry I've been quiet - it's been a rollercoaster week.
We went to Sammy's cardiologist appointment on Tuesday. It was rough for me - I didn't want to be at Children's. I was certain we were going to get a date for Sammy's next surgery, and I wasn't ready for that.
Instead, our cardiologist ended up doing an echo on Sammy because his pulse in his legs was weak, and found that there was scar tissue from when they tried to fix the coarcation during his first surgery. It's causing a bit of a back-up in his aorta. It's not a huge problem right now, but his cardiologist wants to take care of it as soon as possible.
So Monday we're getting admitted and he'll have a balloon catheterization and monitoring on Tuesday (during which they're going to try to stretch the scar tissue out and open the pathway), and hopefully, as long as things go well, we'll be home Wednesday.
Mama was totally not expecting that at all, and I go back and forth between feeling okay with things (my baby is sick and this will make him better) and being really upset about everything (they have to do work on his heart). Some days it's hard to look at him without my heart breaking a little. (I always feel bad using that phrase now.) I think it's part of being a parent of a child with a CHD - you're kind of always holding your breath a little, even when things are going well. And when they're not so good, it's even scarier. We had such a good run, and I was able to feel normal for a little bit, and it felt good. Now I feel like someone slammed me with a reality check, and toss in there that he's been off the past few days... well, worrying so much is just exhausting.
We did get a sense of when his next surgery will be - they're looking at scheduling for the end of July. We want the same surgeon who did his first surgery, so they're going to call us with a specific date. Part of me is afraid of having that date hanging over my head; the rest of me wants to be done with it already. I want that space between the 2nd and 3rd surgeries to feel a little normal again.
So on Tuesday, if you could send some of that amazing energy and prayer you all pulled off last time, it would be most appreciated.
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This Hope for HLHS site belongs to Erika, Jason & Samson
Sorry to hear Sammy is going back in the hospital. We are facing a similar situation next month. With surgery a couple weeks later.
Posted by: Michael Reynolds at May 20, 2006 7:09 PMI agree about always holding your breath a little. But do your best to enjoy the "good runs" whenever you can. Our thoughts are with you next week.