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 thought it would be important to update with how Sammy has recovered (physically AND emotionally) from the surgery and hospital stay. This was a huge concern and fear for me pre-op - now that he's 2, very aware and very verbal - how would he be affected by what had just happened? I thought it might be helpful to pre-Fontan folks to read about our experience.
Tomorrow is three weeks post-op and 99.999% of the time, you'd never know what he'd been through! Saturday we attended Jack's first birthday party, and there was Sammy, running around with the 4 year olds, soaking them with water guns and laughing his head off. It just floored all of us - how is it possible that he JUST had major open-heart surgery, and here he was, acting like any other energetic, happy, wild little man?
That's not to say there haven't been small signs of the emotional rollercoaster of the hospital stay. The first week or so, he'd wake in the middle of the night saying things like, "NO! I don't want to!" We assumed it was leftover from the night nurses taking vitals, giving meds, etc. He hasn't done it since, and has fallen back into sleeping through the night. He will sometimes ask us to lay down next to him, but otherwise he's falling asleep on his own. This was a huge concern for me - I was afraid he'd be afraid to be alone. Nope. Yay!
He's not a fan of being shirtless. If you pull up his shirt, he yanks it back down and tells us not to do that. Again, I'm pretty sure it has to do with constant attention to his chest by a rotating slew of strange doctors and nurses. He has gotten back to enjoying his baths, though. Woo hoo!
He has started something we're not sure is simply a two-year-old thing that coincides with coming home from the hospital, but he'll say things like, "No, mama, I don't like that game" or "No, daddy, don't say that." I pouted once and he had a meltdown - "No mama, don't do that! Don't make that face!" I'm sure it also has to do with control and feeling the need to control something, anything since he had so little control in the hospital.
Physically, we still can't lift him under the arms. The scab is just about all gone from his incision, and has left behind a thin, white scar. He did develop a surface infection at the incision site, but it's cleared up with antibiotics. They cut the sutures from his chest tube sites last week. We have a check up with his cardiologist in three months; otherwise, they anticipate closing the fenestration by cath in a year or two, unless his sats don't improve on their own (he's hanging around 80). In that case, they'll close it sooner.
His appetite came back with a vengence about 2 1/2 weeks post-op. He's back to eating just as he was before the Fontan - here's hoping he gains some weight! He didn't lose much in the hospital - about .1kg - but he's always been on the very skinny side, and the weight he did lose seems to have come right from his arms and legs. They're soooo skinny!
All in all, aside from the occasional random things he remembers about the hospital (for example, "They have lollipops, just like in the hospital!"), he's back to the little boy pre-surgery. He doesn't seem any worse for the wear, except for the little blips of need for control.
Now if only this oppressive heat wave would lift so I can get him outside and back to enjoying summer!
Previous entry :Life Post-Fontan
Next entry: "You've gotta just let him be."
Oh yay for Sammy! You may notice in a few years that he will have lots of empathy for others and a wisdom that most kids his age doesn't.
Posted by: Sarah at June 10, 2008 10:00 PMThat is so great that he has very little emotional scarring from the hospital experience. I think that his telling you that he doesn't like that game or doesn't want you to pout is a normal 2 year old thing. My kids did this around that age. If we pout or pretend to cry, my 3yo still says, "Mama don't cry" and will often kiss us to make us better. Toddlers are funny.
Enjoy your summer!
Posted by: divrchk at June 11, 2008 7:48 AMCongrats on your oh-so-normal (yet completely amazing) two-year old Sammy!! I'm so happy to hear that his recovery is going well. As for the control issues, this is why I say he is oh-so-normal! My little 2 year old boy is constantly telling us not to do something, or to go away, or leave him alone. Very controlling :) I hope that Sammy continues to do wonderfully, and that you have many more "normal" 2-year old activities headed your way!
Love and Hugs,
Kristy from Georgia
This is just such wonderful news to read! I am so glad that Sammy is doing as well as he is and that life is getting back to normal.
Posted by: Jen Wright at June 13, 2008 3:51 PMThank you so much for this update. As we get closer to Abby's Fontan I find myself thinking a lot about how it will affect her emotionally. I am so glad to hear that Sammy seems to be just about back to his normal crazy self! And the control stuff sounds just like my heart healthy almost 3 year old! Looking forward to hearing about more "normal" 2 year old shenanigans this summer!
Posted by: Alison (Abby's mom) at June 16, 2008 9:09 PMI am so happy to hear Sammy's surgery went well and he is back to being two. I check in on him every so often and love your blog. You are amazing parents and he is an adorable little man.
Posted by: Colleen Shea at June 17, 2008 7:28 PMWe just had Jack's pre-fontan cath yesterday, and it was a huge reality check being back in the hospital, and like you said, with a 2 year old that is more aware it's like a whole new ballgame. Jack was fine, and did well, but was more upset about the iv in his hand and the pusle-ox on his toe (that is less invasive than a bandaid) and those frustrastions are what kept him unhappy. But then we took everything out, put him back in his clothes to go home, and he climbed out of the hospital bed and ran down the hall to the elevator. He too is back to his old self.
I have a ton of questions about the fontan, if you are willing to share.. Jack's fontan is on June 30.
I am so pleased to see that Sammy is doing well after his surgery. Well done and much love to all from Australia xxoo
Posted by: Heather at June 22, 2008 7:47 PMJack's surgery was postponed at the last minute because the surgeons decided he was too small. How much did Sammy weigh at the Fontan? Jack is 22 lbs and they want him at 26-28. HOW am I gonna put 4-6 lbs on my baby in TWO months?
It was disappointing but at the same time nice, because now we can have a fun summer! I hope you guys are carefree and having a blast with your "complete" little heart baby!
Posted by: Lisa at June 28, 2008 12:39 AMYippee! So nice to know your little one is doing so well! We are 3 months post our second open heart surgery on my baby grandson. It is nice to see kids doing well for a change! I have come across to many blogs where the outcome has not been positive. So sad. I will keep checking back for updates!
Posted by: Denise Wheeler at July 17, 2008 7:08 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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These kids are resilient!!! I remember Carlie climbing all over everything when we got home, even though she was only about two weeks post surgery and still had a chest tube in place. They are truly amazing! So glad the hear that Sammy is 99.999% back to being himself. Best wishes...
Shannon Mason
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