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
Sammy had his sedated echo today, and he's really quite loopy still. Since I know it'll wear off and that he's okay, it's actually kind of funny. It hasn't kept him from singing Diego or nesting boxes, his second favorite game (the first being taking lids off and putting them back on...and off...and on....and off...and on). He's one smart pumpkin.
He came through the echo with flying colors. Two of my favorite statements from his cardiologist: His right ventricular function is probably better than mine and His heart function is excellent - as good as any heart could be. When I asked him if he meant any regular heart or any surgically modified heart, he answered - any regular heart. So Sammy's heart is working just as well as yours or mine - it just works differently!
So his cardiologist was thrilled (as were we, of course). Sammy does still have a bit of a pinch in the aorta that's causing a bit of back-up (regurgitation) in his tricuspid valve, but it's not anything he's worried about. He expects that they'll do some work on it either during the pre-surgery cath or during his next surgery.
One of my other fears was alleviated. I've had in the back of my head that Sammy somehow might not end up being a candidate for the next surgery and would end up on the transplant list. Dr. Brown made it very clear that it's rare for children to not be candidates and that there are usually other problems that land them in that position. Sammy is in perfect condition for the Fontan. He didn't talk dates or even estimates of dates, and we forgot to ask if we could schedule it for the same time as little Ellie's so that we're all in the hospital together. I know Ellie's cardiologist chuckled at that one when Alicen asked him - Can't say we've ever had a request like that before!
We also learned that he probably won't be able to ride rollercoasters, but he will be able to get drunk and have sex. I love that our cardiologist humors us the way he does. He essentially told us that he'll be able to do pretty much anything any other kid can do. Whoo hoo! Dr. Brown agreed - my son is a rock star!
Another thing that was nice to hear - we met with the genetics counselor who has been following Sammy as part of a study. She believes, based on our family history and Sammy's CHD, that it was just a genetic fluke and not a predisposition for CHDs. After spending the last year and a half wondering what I could have done to cause this, it was nice to hear from someone who does this for a living that I probably did absolutely nothing, that his heart was just one of those things. Of course, I'll still wonder, but it was really nice to hear.
So we're home and exhausted. We'll be getting an event monitor over the next few days to record Sammy's heart rhythms the next time his heartrate drops. Other than that, I discovered that Ativan is fantastic for taking the edge off and that Au Bon Pain ham and cheese croissants fill this emotional eater's needs just perfectly. More importantly, I was reminded of this - there's no way in hell I could do this without Jay. I definitely think Sammy gets his rock star personality from his dad. :-)
Previous entry :Look who's one!
Next entry: Miles for Miracles - Together in Heart.
I have a son with hlhs that just turned 8 months old... It is so wonderful to look at Samson and see him doing so well. I actually found your website before Everett, my son was born. Samson and your family has really been an amazing inspiration for us. We forget all the time that Everett has a CHD because Everett is doing amazing too. You would never think that he has gone through two open hearts.
Your website is what kept me going at the start of things and before I knew it I had my own little Rock Star too!
We live in Traverse City (northern Michigan)and don't really know any other families with CHD's. I feel like I know you guys:) Thanks for your amazing webiste!
I know what you mean about expcting them to say Sammy won't be a suitable candadate for the Fontan and would need to be transplanted! I had the same fear when we were to Owen's clinic appointment in November. I flat out asked the cardiologist and she reassured us that Owen was doing fabulous. Those clinic visits are a double edged sword - I always get edgy and fearful of what they might say but in the end it always turns out that they tell me he's great and that it very reassuring. Owen has a diagnostic cath scheduled for early April and from there we start planning for the Fontan (gulp) within 3-6 months. It's so nice to read about how well Sammy is doing.
Posted by: Janet at March 23, 2007 3:26 PMI am sooo happy to heat of Sammy's development gains! My daughter, Michaela [almost 3 y.o., HLHS pre-Fontan] has that similar kink just past her aortic arch. It narrows to about 5.5mm, when it shout be about 12mm. Becuase of this, her Fontan has been in contention...to the point of us finally leaving the surgeon (and hospital, UCSF) that we had fought so hard for her to get in the first place. Seems there are some "issues" with said doctor which has forced us to go elsewere.
Well, in short, her cardiologist (and other peripheral doctors) feel it is neccessary to address the aortic arch first before attempting the Fontan (which, frankly, we are in no hurry for her to get yet). After 5 months of this ordeal, we finally have a date. We found another surgeon (@ Stanford) and asked him to review/assess her situation, and he also agrees that the aortic-fix is very neccessary. We have a month until then.
We're a bit nervous, sor forgive the blurt of this comment. Reading about Samson this time just triggered it & I felt like I needed to tell someone, that's all. You guys are still in my prayers.
Posted by: Michael Kost at April 20, 2007 10:45 AMJacob (TGA) had a sedated echo Tuesday. He was definitely loopy even before he fell asleep. Like you, because I knew he'd be okay, it was quite funny! He entertained us all.
As a previous poster said, the PC visits really are a double-edged sword. I am so anxious leading up to them, but have been fortunate enough to get almost 100% good news at each one.
I'd love to add your site to my blogroll if that would be okay!
Posted by: Jenni at April 27, 2007 9:01 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
Wonderful to hear!! Yah, Sammy!
Posted by: molly at March 21, 2007 4:30 PM