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
He's awake!
Of course, he's awake and in significant amounts of pain, which causes him to scream, which causes even MORE blood to rush to his head, which is what's causing a lot of the pain in the first place, which causes him to scream more, which causes his blood pressure to go through the roof... see a problem here?
So he's on little mini-shots of morphine - just enough to take the edge off. The night started out rough with a couple of these screaming episodes, but then he WOKE UP around 5 - eyes wide open - and SMILED at me. His eyes were the clearest we've seen, and he was looking around, taking it all in. He cried for a little bit, but we sat him up and I cradled him in my arm (the surgery redirects the blood flow to the head, so sitting him up helps to drain some of the pressure). He is PINK - the week or so before the surgery, he was getting progressively bluer. But nope - he's a dark pink all over - and man, he turns PURPLE when he screams. Before this there was very little change in his coloring, even during a hissy fit, so this is strange to see.
I made an exception to the no-TV rule we like to think we follow but never really do, and he watched Breakfast with Big Brown Bear (or whatever the hell that show is), ate about an ounce & a half, read some of Pajama Time with me, and then went back to sleep.
He woke up with the fuss-fit again, so more morphine and he's dozing. His chest tube is scheduled to come out today, along with the Foley cath and possibly another one of his lines (I'm not sure which one it is). They're still concerned about his heartrate - under the pacemaker, he's only pushing low 70s while he's awake. The hope is that once more fluid drains from around his heart and his body settles into his new circulation, so will his heartrate. So we'll see.
Please, if you have a moment, pray/meditate/send positive thoughts that his heartrate heals to a better, higher number on its own and that his blood pressure comes down a bit and stays there. We'll update if/when things change today, or else we'll post something later on tonight. My guess is that we'll be spending another night in the CICU - which is fine with me. I want him all better before they send us off.
As always, thanks for your love and support.
(P.S. There are a few more post-op pictures on flickr - we're still trying to decide whether or not to put up the immediate post-op pictures. They're not as rough as the post-Norwood pics, since his chest is closed, but they're still kind of hard to see.)
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He looks GREAT! Really, he looks better than I do on a good day. I love adore those chubby cheeks. His color really does looke nice and pink in the picture. Still thinking of all of you every minute!
Posted by: jessie at July 21, 2006 11:42 AM(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
He looks WONDERFUL....The prayers are working.
Posted by: Grandma Mary at July 21, 2006 11:29 AM