"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
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying
Mama here.
What a rollercoaster.
Sammy's out of surgery and in recovery. We were able to be with him - they actually encourage it. He's stable, but paralyzed and sedated. His chest is still open - Jay was able to bring himself to look at it, but I can't bear it at all. Luckily, they keep a blanket over him, and I get to peek at his nose and that crazy wild hair and those tiny, tiny toes. I'm going to have to settle for nibbling those toes for the next few days - hopefully by the weekend they'll start weaning him off all the things I don't understand, and hopefully by the weekend we'll get open eyes and that little squeak and the little lip kissing smacks I love so much. It all depends on when they take him off the ventilator.
The surgeon said that Sammy handled everything wonderfully - as best as they could have expected or wanted. And same thing for the steps now - the nurses said he was doing amazingly. Of course, I still feel like we're walking on tiptoes and that at any moment, it could all fall apart - but we're holding on to the little baby steps he's making. That's all we can ask, and really, all we can do.
As for us, I think we're holding up okay. I sometimes forget that I just gave birth a few days ago, and that on top of it all, I'm a painful, swollen ball of hormones. Jay has been incredible - I don't think I would have survived any of this without him. Our families and friends have all been so incredibly supportive, and knowing you're all out there pulling for our little boy - a boy many of you have never met from a mama you've never met - amazes me. It's all such a source of strength and energy for us.
Right now, though, our bodies are a mixture of sheer exhaustion and adrenaline, and it's hard sometimes to figure out which one should win out. Everything hit us tonight - sort of like the adrenaline all exploded and our bodies went into this incredible crash state. I wish I could describe it better, but it's all just such a surreal fog. So we're taking care of ourselves while the nurses and doctors take care of Sammy - we're back at the hotel for some Jeopardy (and one of the answers was just Samson! What a coincidence!), a nap and an attempt at a sense of normalcy. We're going to need all this energy when he starts to wake and we really start to become responsible for doing all those parent things. We can't wait.
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