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
I know I haven't updated in a while. It's been an eventful few weeks, unfortunately.
First was the trip to the ER for the bloody stools. Turns out, Sammy is both milk AND soy protein intolerant. I had spent three weeks dairy-free, but he wasn't getting better. The GI determined he must also be soy intolerant, and since EVERYTHING has milk or soy in it, I had to give up giving him breastmilk. We switched him to Alimentum. I'm disappointed, but he's MUCH better now, and that's what's important, right?
Three days after that ER visit, we ended up back at Children's. It was perhaps the worst afternoon of my life. Without reliving too many details, Sammy's sats (oxygen saturations) dropped and I couldn't wake him up. He opened his eyes just as the 911 operator was going to walk me through CPR. They took us to the local hospital by ambulance, but they were having a hard time keeping his sats above 60 without oxygen, so we took another ambulance ride - through awful rush hour traffic in Boston - down to Children's. We had a three-day stay, where they blamed it all on an upper respiratory bug and dehydration.
And this Wednesday, July 19th, he goes in for his second operation, the Glenn. This is by far harder than the first time around. He's a major part of our lives now. He laughs and rolls over and giggles and has his own little personality. I should be writing about all the amazing things he does, how you wouldn't know he had a heart condition by the way he looks (he's almost 14 pounds!) or the way he acts (right on target for his age, not delayed at all!), but right now, we're consumed by the idea of having to hand him over to the surgeons again and all the fears and worries that go along with that.
So please - keep him in your thoughts and prayers over the next week. We thank you for your love and support in advance.
Previous entry :Milk Allergy Fun
Next entry: Preparing for the Glenn
Hi Erika,
We will be thinking of you as surgery approaches. If you need anything at all...advice, a place to vent, or just anything. Please let us know. We obviously know how difficult all this is. Don't hesitate to reach out if you need too.
-Michael
I'll be holding my breathe all day and keeping you guys in my thoughts. I just hope you'll be able to write in some updates because I don't know if I can hold my breathe in that long! ;P (Just kidding - obviously, you have more important things to worry about than update a blog) But we'll be here rooting for you and Sammy.
Posted by: Jennifer at July 15, 2006 5:45 PMI too have an HLHS son (he will be 16 months old on July 22) and know all too well the trepidation of having to put your child forward for surgery - especially when they seem fine! We are from (near)Kingston, Ontario, Canada and our son had his surgeries at the Hospital for Sick Children in Toronto, Ontario. We have been fortunate that for each surgery we have not been in the hospital more than 14 days. All the best to you and Sammy. He sounds like quite a fighter. We'll be thinking of you. Janet
Posted by: Janet Jaynes at July 17, 2006 8:17 AMJuly 19 is a great day - It's Olivia's 2 year birthday so I know that Sammy's going to be a-ok.
I'm sorry to hear that Sammy's allergic to both soy and milk products. There is nothing more frustrating. And that alimentum STINKS.
Our prayers are with you ... please keep us posted on how he's doing.
Posted by: Tricia at July 17, 2006 9:06 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
We love you guys and you are always in our thoughts. Go SAMMY...We know you can do this...You are a strong little guy...We can't wait to meet you and tell you some stories about your Mommy growing up....Love Joe and Joyce
Posted by: Joe & Joyce Carucci at July 14, 2006 9:31 PM