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 just realized that it's already July 22nd. Yesterday marked two months since Sammy's Fontan.
Does this look like a boy who just had open-heart surgery two months ago?
(Nevermind that he fell - from the top, about 5 1/2 feet from the ground - on his second climb or that mama felt like throwing up for three hours after. After he fell, he cried hysterically for about a minute, then started crying because he wanted to go climb again and couldn't because I was holding him. He climbed that sucker three more times, each time coming down through the "big kid slide" that had scared him just half an hour earlier. It's amazing watching him grow like this, each day, going beyond in leaps and bounds.)
This morning, he spent an hour chasing the big kids up and through tunnels and reappearing down twisty slides that started at least fifteen feet off the ground. I sat at a nearby table and wanted to cry. I wanted to cry for the last three years of not knowing, of worrying, of not being able to dream, of trying to dream of days like this one and not letting myself.
The grandmother of one of the bigger kids sat next to me and talked about her kids. She had four, and the youngest was born with a heart condition - an enlarged heart that he eventually grew into. When I told her about Sammy, she said to me, "You've gotta just let him be. You can't hold him back any because of it." I looked at the tunnels and knew my little boy was in there somewhere, somewhere I couldn't see, having a blast, climbing walls and slides and playing with the other kids. I don't ever want to hold him back because of his heart. I don't want it to define him. Today, it didn't. I don't know what the future holds. I know how cruel other kids can be. I cringe to think of the day where he is teased, made to feel bad about the big scar that has saved his life three times. But that's neither here nor there right now.
In a few weeks, just about three months post-Fontan, Sammy will start school. He will go off and have experiences that neither of us know about. And this is just the beginning of a whole world out there waiting for him to figure out, live, enjoy. I'm so grateful we have the opportunity to just "let him be" - and I can't wait to see who he becomes.
Previous entry :Sammy's Recovery from the Fontan
Next entry: Post-Fontan Cardiology Visit
I've been reading you for years, pre-Sammy and Pre-marriage. I can understand this somewhat because my kids were 10wks early and stayed in the NICU for 6 weeks, however that is not what has made me comment. On a routine ear ache check visit yesterday I was told that one of my sons has developed a heart problem. His right side is slightly enlarged. We are waiting to see a cardiologist and we are scared to death. I was just now starting to get over the whole NICU thing. They just turned two on the 17th. I thought we had already had our major bump in the road. I just so don't want to deal with this. I'm scared for my son, who acts just fine I might add, and I'm scared for my self. I just don't know what to exspect and I hate the unknown.
Posted by: Brandy at July 22, 2008 7:14 PMThis was such a beautiful post. You are such a strong and supportive mom to be able to "let go," allowing him to explore the outside gym, and sending him off to preschool. I'm having second thoughts about sending my Nathan to preschool...and he hasn't been through what Sammy's been through! I'm so glad that you're at a point in your journey where you can breathe a little better. And, I think I would be freaking out if my son fell down! So scary. But, you were so brave to let him back out. You truly are awesome.
My mother always told me that she loved my brothers and I with an open palm. If she squeezed too tight we wouldn't be able to grow into who we were destined to become. Now, with my HLHS child and my healthy heart son as well, I try to remember to love them with an open palm. Always giving my boys roots to keep them grounded and wings to soar.. It is sooo good to see Sammy's success story as well as the others you share. Thank you for giving us hope that our Brady will be climbing (and falling) from the tallest swing sets possible!
Posted by: Lisa at September 21, 2008 4:11 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
Great Post...always thought provoking.
Posted by: Michael at July 22, 2008 5:43 PMSometimes I believe I have an advantage over parents of "heart-healthy" kids. The time they have spent lamenting how quickly their kids are growing up. I have spent hoping and dreaming that Sophia would get to grow up. As a result, I am more than willing to let her grow and explore in a fairly unfettered way. Perhaps I would have been that type of parent anyway. But I certainly cherish every milestone without any feeling of loss.