"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
I'm slowly emerging from a two year fear-of-the-Fontan-induced fog.
(How's that for some mean alliteration?)
I've said to a few people that I feel like we left the hospital with a newborn. Not in the sense that we had this helpless creature to take care of, but instead we left with one with a future wide open in front of him. When we left after he was born, we had steps to get through - we'll let ourselves think about that after the Norwood or we can plan for that when we get through the Fontan. While I would sometimes think about Sammy's life as he grew older, I never let myself fully imagine all the possibilities that lay before him. I never let myself imagine him at 6 playing t-ball, or at 10 riding bikes with his friends. I couldn't embrace these dreams that parents have for their children's lives. Everything always stopped at the Fontan, and while it was my own doing, I resented it. I resented how easily others could envision their child's world as they grew, resented how I felt so trapped by the what-ifs of the three surgeries.
So when we left this time, I imagined it's how new parents feel, leaving the hospital with a whole new life in their hands. I know nothing is a given and simply making it through (simply - ha!) the three surgeries is no guarantee, but it's a damn good start.
I'm still plagued by the mini-anxiety attacks I would have pre-Fontan. I'm often still caught off-guard that we are now through the very thing that's been over our heads for two years - it feels as though my brain hasn't rewired itself to realize that we are past this surgery. I'm amazed that it is now June, and May - oh, how I dreaded May - is behind us. Is it really June 1st? How did it all go by so quickly? How is it that for two years this surgery loomed so large, and now it's done? It's not even two weeks past and Sammy's quickly getting back to the little boy we love so much. In fact, yesterday he played at the playground, climbing up the structure and slide and running around - you'd be surprised he had just had open-heart surgery less than two weeks ago!
Now we can get back to raising one amazing little boy.
So glad he's doing good. He's such a handsome lil man! Will keep praying that everything keeps going well for Sammy and family.
Laura
Posted by: Laura Boehm at June 5, 2008 2:11 AMSo glad that Sammy is still recovering so amazingly well! What a trooper you are Sammy! You are one amazing little boy! So glad that the Fontan is behind you. We hope you have one amazing summer!
Love, The Voss Family
Posted by: Daric's Family at June 5, 2008 9:21 AMI totally get what you are saying here! Welcome home baby boy, the world is yours!
Posted by: Jen Wright at June 6, 2008 4:40 PMWhat a beautiful sentiment and a beautiful boy and beautiful mommy and daddy - so glad that he is doing so well.
Posted by: Christine at June 7, 2008 11:11 PMI am so happy for you to be on the other side of the Fontan, and also so jealous! I hope you have a fun filled summer and that you let yourself start dreaming about the future for all of you.
I am so glad things are going well. I love the first paragraph because this is how I feel. I love that we are given hope through others. Through you guys. Thanks.
Posted by: Bethany at June 9, 2008 10:58 PM(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
Sammy, you and your parents are pure inspiration to any parent or any child with HLHS. So great to hear you�re doing well Sammy.
Love
Posted by: Geoff & Donna Stein at June 4, 2008 5:05 PMGeoff & Donna Stein
NSW Australia