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're done with pre-op. It took forever, but a lot of that was sitting and waiting for the appropriate people to come and meet with us. Sammy did great through all of it - he's such my brave little knight. Pre-Fontan parents out there (or really, any families facing some sort of medical procedure) - go buy some small toys. These were HUGELY successful in keeping Sammy occupied and distracted from whatever was going on (xray, bloodwork, EKG, etc). We picked up a bunch at Michael's - little bug finger puppets, some spinny flashlight thing, etc. Each time we needed something "fresh" to get him through something, into the bag we went. And when he wakes from his nap, there's a little toy waiting for him in his Magic Treasure Box, too, for being so brave today.
We are to be at Admitting tomorrow morning at 7:30am. They expect surgery to last 4-5 hours. I'm anxious to have it done with - it's been hanging over our heads for way too long - but I'm terrified to hand him over again. The odds are in his favor (knock on wood), but hello - it's open-heart surgery. This is huge. Everyone we spoke with today focused on recovery and not the surgery, which was heartening. It almost felt as though Fontans are routine around here (which, at 1-3 a week, I guess they are), which was comforting. But still - when it's your kid? I have no idea how we're supposed to say goodbye to him and send him off tomorrow morning. I'm grateful we got to see his surgeon, Dr. Fynn-Thompson, who also performed Sammy's first two surgeries. I'm glad I got to say to him, Please take care of him. I know he will, but it was comforting to say it out loud.
Thank you to everyone for all the love and strength and prayer and wishes. A special thank you so much to my students, who left comments wishing us well and sharing good thoughts and love. You guys made me smile SO MUCH this afternoon when I really needed it most. You truly are compassionate, wonderful kids. And to the Sewing Mamas out there (and you, Deb!), thank you for your kindness and for Sammy's little goodies. They are awaiting the Treasure Box for when he's about after surgery. There are just so many people who have shown such love, I wish I could hug you each in person. Know that you are held in our hearts and that your words and energy are helping to carry us through this.
This time tomorrow, the surgery should be behind us and we can focus on recovery and getting Sammy home. Right now, I think I'm going to try to nap a bit with Sammy and Jay.
Previous entry :Checking in
Next entry: Fontan Day
Sending many prayers your way. You guys are all doing a great job. Tomorrow this will be DONE and Sammy will be on his way toward recovery!
Posted by: Megan at May 20, 2008 4:20 PMAm friends with Matt and Nay, who told me about the little man's surgery tomorrow. Will be thinking of you and sending lots of positive thoughts your way! Best wishes!
Posted by: Steph at May 20, 2008 4:36 PMMy family is praying for a successful surgery, quick recovery and strength for Sammy and his parents!
Love, Drew's Mom
Posted by: Drew's Mom at May 20, 2008 4:38 PMYour strength is so admirable - I love the "this time tomorrow" mentality...it will get you through!! It certainly did us. We are singing Sammy's praises around this house tonight and tomorrow - hang in there!
Molly
We love you guys! I'll up there in a second (well 45 minutes) if you need me for anything. Don't hesitate to call any time!! xoxoxo Anxiously awaiting your updates tomorrow.
Alicen, Chris & Ellie
We love you and are thinking of you all! Good luck tomorrow!! I'm holding my breathe until he's home!
Posted by: Jennifer at May 20, 2008 6:19 PMHang in there, Mama! Sammy is a rock star and he will fly through this like it is nothing at all.
You guys are in our prayers. Please, please call me if you need anything at all.
Hugs
Posted by: Susan at May 20, 2008 7:22 PMGive Sammy a high five from Jack! :)
We are thinking about you guys and can't wait to hear how well Sammy does tomorrow.
Amy, Lou, Emma Ann and Jack
Praying so hard tonight for you all. Literally sitting here in a silent hotel room and saying prayers over and over again. For Sammy. For his surgeon. For the OR staff. And for his amazing parents.
Remember Sammy was meant to be yours. There's a REASON he's here and he's yours for a reason. Others may not have been as brave as you are and that's why he was meant to be yours. He has a purpose in this world. He's going to fly through tomorrow. He's going to go home. He's going to run and pretend he's a plane. He's going to learn to ride a two wheeler. He's going to go to kindergarten and you're going to cry. He's going to grow up. Go to college. Meet a girl. Marry and have beautiful babies. And you'll be old and grey and snuggling your newborn grandchild and think "Life is amazing" because it is and it's going to happen.
I'm only a phone call away tomorrow. Email me / text me (screw the phone bill - it's only money). And if you want, I can swing by tomorrow night to give you a big HUG and kiss Sammy's toes and celebrate with you that's he is finally POST-FONTAN.
Tomorrow is the first day of the rest of your lives. And when it's all over and you're home ... it's amazing. I promise.
Posted by: Tricia at May 20, 2008 9:32 PMwhat to say????
.... everyone has said what I want to...
thinking of you all, best wishes... if you need anything.... you are always in my thoughts and prayers....
my advice... Sammy will be fine... and
Ativan is a good friend to have..
Hugs~
Drea
I find myself saying "Please God, please God, please take care of that little boy" over and over today. I am sure everything will be ok.
Posted by: Charlise at May 20, 2008 10:18 PMJust wanted you to know that we will be thinking of you tomorrow.
Love, Daric's Mommy
Posted by: Voss Family at May 20, 2008 10:43 PMThinking of Sammy all the time. Please send my love to Sammy. Hugs and kisses to the bravest and cutest kid in the world. Good luck tomorrow!
Posted by: Kamila at May 20, 2008 11:41 PMI'll be getting up at 5:30 MTN tomorrow and I will think of Sammy and you guys say a little prayer. I wish you nothing but smooth sailing tomorrow and through the rest of this!!!
Posted by: jesser at May 20, 2008 11:53 PMHoney, I just want you to know (and Jay) that you are both in my prayers. I'm up late working and I am praying while I work and thinking of you! You will be through the surgery tomorrow!! And soon Sammy will be home with you where he belongs.
Love you!!
Shari (Mommy to Marcus, HLHS)
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This Hope for HLHS site belongs to Erika, Jason & Samson
There are lots of us silently, anxiously, and steadfastly here with you all. We'll be praying for Sammy tomorrow.
-Alison (Abby's Mom)
Posted by: Alison (Abby's mom) at May 20, 2008 4:06 PM