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, Babyç—´ 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
The boys are still sleeping - we all slept, which is good. Not as well as we would have at home, and I kept waking to see if Sammy wanted any milk (until 2) or juice (until 6), but I think we did surprisingly well. I'm going to crawl back into bed, hope to keep my thoughts as settled as they've been, and rest a bit more until we have to get up in thirty minutes or so. I'm surprised at how okay I am. I'm ready to be done with this. I'm ready to get him through recovery. I'm ready to be done with the Fontan hanging over our lives. Will I have a complete meltdown when they take him? Probably - but that's to be expected, right?
We check in at 7:30, and they'll sedate him enough before they take him to surgery, which we expect to be between 8 and 8:30. Surgery, once started (after all the lines are in, etc), should take 4-5 hours. My hope is that we get to see him sometime between 3 and 4, but we'll see how it all goes.
Jay or I will be updating this post as things progress. (I'm contemplating coming back to the hotel room right across the street and trying to sleep through the waiting.) Thanks so much for keeping us all in your thoughts and prayers today. We are so blessed to have such wonderful support and love in all of you.
Updates
8:45 - They gave Sammy a good dose of Versed and Ketamine and doped him up quite nicely. Everything was hysterical to him, and he was all sorts of floppy. They took him back and we broke down. Pulled ourselves together and headed out to find food and family. We'll update with the next call from the nurse.
9:30 - They called to let us know that everything was going great. The lines are in and Dr. Fynn-Thompson will begin the incision soon.
11:30 - Still working through the scar tissue.
12:30 - He's on bypass. Next update will be when they're taking him off bypass. She couldn't give us a timeframe, as surgery is different for each kid. Either way, she'll check in with us in about an hour and a half.
1:45 - Surgery is over! They're warming him up and hope to start getting him off bypass in the next half-hour or so. Then they'll close him up and bring him up to the CICU. We'll get the bypass update soon. We're not out of the woods yet, but few more steps and then we can see him. Please pray that coming off bypass is easy for him, as that can be tough for some kids.
2:00 - Sammy is off bypass!! They are closing him up and we should be meeting with his surgeon in the next half-hour.
2:30 - Dr. Fynn-Thompson, Sammy's surgeon, just came down to see us. Sammy is doing GREAT! Said the Fontan was about as routine as they come. His heart function is good, his valve regurgitation is better than it was before the Fontan (it was mild then, but they wanted to see if they needed to tighten up his mitral valve at all while they were in there). He didn't require any extra blood (aside from what was needed for bypass). WOO HOO! They're bringing him up to the CICU and getting him settled in. We'll be able to see him in about an hour or so - he'll be intubated, IVed up and sedated for a while, and the next 24 are still considered critical, but surgery is DONE!!!
Previous entry :Fontan Pre-op Done
Next entry: Fontan Post-Op Update
Sometimes when we get to a place where waiting and wishing it to be over is worse then acutally going through with whatever "it" is. You have been on my mind and will continue to be. Everything will be over soon. Hugs!
~Jen
Sammy has been so present in my thoughts the last few weeks...I just want you to know that I will be praying for him all day today. Hang in there, Erika...you're almost on the other side of this. (((hugs)))
Posted by: Cindy at May 21, 2008 7:16 AMWoke up this morning and my immediate thought was "Sammy".
It's 7:54AM -- your baby should be on his way shortly. I'm sending you hugs because I remember letting her go was the hardest thing I ever did. And I didn't share before because no Mama needs to hear that before they have to do the same.
I'm hopping in the shower and getting ready for the day. PLEASE call if you need to pass the time. While we've never "spoken" before: I've been there and know where your head is today.
Sammy - again, it's your turn to FIGHT. Fight the booboos. Mama's done a great job getting you to this point ... now it's your turn to fight to get your sweet cheeks back home so you can play with all your toys and watch Little Eisteins.
Posted by: Tricia at May 21, 2008 7:55 AMthinking of you...best wishes.
Posted by: Michael, Patty and Sophia at May 21, 2008 8:00 AMThinking of all of you and saying lots of extra prayers for Sammy today.
Posted by: Suz at May 21, 2008 9:24 AMThought of Sammy first thing this morning...keeping All three of you in our thoughts today.
Daric's Family
Posted by: Voss Family at May 21, 2008 9:24 AMBest wishes for all to go smoothly.
thinking of you, your family and your beautiful, beautiful boy.
Peace,
kath
I'll keep you all in my thoughts today. I have no doubts the little guy will pull through just fine! Keep thinking positive...we all will do the same!
Much Love!
Thinking of Sammy today and will continue to lift him up in my thoughts and prayers.
Posted by: Sarah at May 21, 2008 9:46 AMYou are my first stop online this morning...computer is on all day so I can check for updates frequently.
You and Jay and Sammy are in our prayers today...you were the first person on my mind when I woke up this morning.
Go Sammy!! Go Sammy!!
Posted by: jessie at May 21, 2008 9:55 AMThanks for your sweet comment yesterday! I will be checking on yall throughout the day! Sammy's in my prayers!
Posted by: Bethany at May 21, 2008 10:20 AMThank you God. One step closer to being done ... FOREVER. And he'll finally be all yours.
I'm hitting the refresh button so many times that it's going to be worn out by the end of class. :)
Posted by: Tricia at May 21, 2008 10:23 AMSending all our love and energy.
Posted by: Susan at May 21, 2008 10:26 AMMy heart goes out to you. We have two more days before we are doing and feeling what you guys are. Stay strong, remember to take care of yourselves and know that there are many of us thinking of you and praying for your sweet boy.
Heart Hugs,
Andrea
Good luck today....thinking of you.
Jeff
Posted by: Jeff at May 21, 2008 10:54 AMCheers to sleeping through the waiting, or not, if you're reading this :) I'm thinking of all of you and wishing you well. Thank you for keeping everyone who cares about your family updated on your progress. Much love is coming your way...Peace.
Posted by: Debbie at May 21, 2008 10:55 AMALL of our positive energy and thoughts are with you and your family, the doctors and nurses today!
You're almost through this morning....waiting is one of the hardest parts! BE STRONG! THINK POSITIVE!
I'm praying for you guys!
Posted by: Sara at May 21, 2008 11:13 AMYou know we're thinking of you three and thanks for the updates here & on Flickr.... not required or expected, but much appreciated!
I'm right here with you, Erika. Hang in there. It sounds like you're doing as well as can be expected at this point.
Shari
Posted by: Shari at May 21, 2008 11:29 AMAt 9:04am this morning, I was driving to target and I heard "Danny's Song" and I remembered that you gave Sammy his middle name from that,and that today was his surgery. I had such a feeling of peace and hope, and I knew that "everything was gonna be allright." Bob, Molly Teddy and I are all praying for a good result and a speedy recovery for Sammy, and some peace and strength for you and Jay. Laurel
Posted by: Laurel at May 21, 2008 11:38 AMI'm thinking of you guys today. I was a mess yesterday too, it does get better as the days go on. Today is a much better day for us. :) Praying Sammy has a very smooth road and NO complications.
Millie
You all are in our thoughts and prayers today from South Carolina. Thank you for the updates!
Posted by: Seuss at May 21, 2008 11:45 AMAll we have been able to think about today is Sammy. Stay strong... and thanks for the updates.
Posted by: Brooks at May 21, 2008 11:58 AMI've been thinking of you guys all morning. I'm quite sure that he'll do beautifully. Hope you are holding up well.
Posted by: Angie at May 21, 2008 12:18 PMSending positive thoughts and energy out into the universe for Sammy and the two of you. (((hugs)))
Posted by: Olivia at May 21, 2008 12:19 PMThanks for the updates. A prayer for all of you. Hang in there ... I'll be thinking of you all day.
Posted by: jesser at May 21, 2008 12:21 PMKeeping Sammy in my thoughts today! I'll be praying that surgery is uneventful and that he recovers quickly! Best wishes...
Shannon Mason
CP:CarlieMichelle
Almost there, almost there. Prayers and love being sent. He's almost done.
Posted by: Tricia at May 21, 2008 12:43 PMYou're all in my thoughts and prayers today.
Posted by: Christine at May 21, 2008 1:06 PMThank you for the updates. My prayers are non-stop. Sammy is fully present in my mind.
Posted by: Cindy at May 21, 2008 1:45 PMYou guys are in my thoughts today. Well, the next few days, but especially today. Thanks for keeping us updated.
Posted by: Krista at May 21, 2008 1:47 PMYou are most definitely in my thoughts today. All the positive vibes are yours. Hoping all continues to go well!!
Posted by: Jennifer at May 21, 2008 1:55 PMFocusing all my energy on coming off bypass...
Posted by: Susan at May 21, 2008 1:56 PMYAYAYAYAY SAMMY!!!!
Posted by: Tricia at May 21, 2008 2:05 PMALMOST THERE!!!
We are continuing to pray for Sammy. So glad to hear that he is off bypass.
Amy and crew
Re: http://twitter.com/erikarenee — CONGRATS, Momma! Your li’l man is off bypass and out of surgery. I loved the “He’s a Fontan, baby!” Know there’s much healing and steps to take for awhile, but also wish you all slightly more restful sleep now that you’re on the other side of that brick wall, or at least kneeling together at the top of it ready to jump into the green grass on the other side! :D
Posted by: Shannon, Justin & Sara at May 21, 2008 2:33 PMThat is just fabulous news. I know that the next 24 hours are critical but it must feel like such a huge weight has been lifted from your shoulders. My prayers and thoughts are still with you and I'll be checking often for more updates. (I love the Backyardigan typing test below, btw...)
Posted by: divrchk at May 21, 2008 2:41 PMWelcome to the other side!!!! It's going to be beautiful.
Hey, it's ALL OVER!!! YAYAYAYAYAY!!!
Posted by: Tricia at May 21, 2008 2:44 PMSo happy to hear all the positive updates!
Posted by: Deb at May 21, 2008 2:54 PMSo happy to hear all the positive updates!
Posted by: Deb at May 21, 2008 2:55 PMI am so glad to hear everything is going smoothly so far! We are continuing to pray for Sammy and send all the good energy we can muster up your way.
Posted by: Alison (Abby's mom) at May 21, 2008 3:05 PMWhoo-hoo!!! Praise the Lord! I'm so glad he's finished and doing SO WELL!!
Hugs,
Shari
So happy to hear all the positive updates!
Posted by: Deb at May 21, 2008 3:18 PMALRIGHT!!! Big YAYAYAYAY!!! That's the best news ever, so glad to hear it! What a trooper
Posted by: jessie at May 21, 2008 3:19 PMYay! Yay! Yaaaaaaaaayyyyyyyyy!!!
Posted by: Susan at May 21, 2008 3:25 PMI'm so relieved for you all that the surgery is over. I will continue praying for Samson's recovery, and for the minute you can hold your little boy in your arms.
Love and hugs to you all.
-Kristy in Georgia
Precious, Sammy. I'll be praying for his well being and quick recovery. Yay, go Sammy for doing so well with surgery!
Posted by: jennifer at May 21, 2008 3:45 PMSo excited everything has been great so far! Sammy along w/ his family are in our prayers!
Posted by: faith kuykendall at May 21, 2008 4:23 PMSo excited everything has been great so far! Sammy along w/ his family are in our prayers!
Posted by: faith kuykendall at May 21, 2008 4:23 PMI've had the site up on my computer all day and I am so glad to see the good updates...keep us posted-I have my mommy message board all sending positive vibes your way...everyone I know in 'real life' and online is thinking of you guys today!
Posted by: Allie at May 21, 2008 4:40 PMGreat great news! So glad to hear surgery went well. Continuing to send prayers for recovery.
Posted by: Suz at May 21, 2008 4:43 PMI've been checking your twitter acct all day and am SO HAPPY things are going so well. Continuing to send many prayers your way.
GOOD JOB, Sammy!
Posted by: Megan at May 21, 2008 4:53 PMI've been checking in, holding my breath and wishing good wishes for all of you this afternoon. So, so glad it went great! Surgery is over, hooray!!!
Posted by: amishpromqueen at May 21, 2008 5:17 PMSammy is awesome. Like his parent's. I've been thinking about this all day at work. I'm so glad the surgery went well and he's done. I will be keeping all of you in my prayers for the next 24 hours. Love to you all.
Posted by: Stacy at May 21, 2008 6:06 PMI am sooo happy and relieved for you and Sammy. Wishing him a smooth and speedy recovery!!!
Posted by: claire at May 21, 2008 6:39 PMJ and Erika,
Glad you and Sammy have reached the next milestone! I'll be checking back to see how things are going. Congratulations!
-Cyn
Posted by: cyn at May 21, 2008 7:08 PMSo very glad to hear that his surgery went well. I will keep all of you in my prayers (especially Sammy). FYI...my nephew is now almost 6 months old and will be getting his first of 2 surgerys on June 20th. Thank you sooo much for bloging Sammy's progress, as we feel so much better knowing how great thing may be! Stay strong and give Sammy plenty of hugs!
Posted by: Gail Hull at May 21, 2008 7:12 PMGo Sammy! We are so happy that the surgery went so well! Thank you for keeping us updated Erika! We are thinking of you!
Posted by: Caroline at May 21, 2008 7:15 PMExcellent news! Well done Sammy! We all love you very much and wishing you fast recovery!
Posted by: Kamila at May 21, 2008 8:05 PMWonderful, wonderful, wonderful!!!
Posted by: Cindy at May 21, 2008 8:40 PMI've been thinking of you today, praying for a successful, complication-free recovery. Take care...
Posted by: CapableGirl at May 21, 2008 9:14 PMWe're so glad that everything has gone well today. We'll be waiting for more great news! Hope you and Jason get through this as well. Love, Uncle Dave and Ruth
Posted by: Dave at May 21, 2008 9:28 PMThat's wonderful news that Sammy's out of surgery and everything went well! That's one strong little boy you have! We'll continue to hold you all in our thoughts, wishing Sammy a speedy recovery!
Posted by: marnie at May 21, 2008 10:31 PMSo glad to hear Sammy's surgery went well. I included him in my prayers this morning, and will keep all of you in my prayers tonight as he continues his recovery from surgery! =)
Posted by: lee at May 21, 2008 11:10 PMBeen thinking about your family a lot today. So happy to hear so far so good. Continued thoughts and prayers as Sammy goes through recovery.
Posted by: Courtney at May 21, 2008 11:33 PMFolks, keep the good thoughts and prayers going. Eka posted this on Twitter but had no time and energy to post it here -- [From http://www.twitter.com/erikarenee] "Exhausted. VERY hard seeing Sammy post-op. Harder than making it through surgery. Jay staying at hospital w/Sammy, I'm @ hotel for night."
So we need to keep the vibe going for Sammy to be strong and heal, and for Eka (Erika) and Jay (Jason) to manage the rollercoaster as well.
Also, a Sammy post-op pic landed on Eka's sis's Flickr page but not on Eka's yet, so here that is -> http://flickr.com/photos/kidkamp/2512851842/
Yeah Sammy!! I'm so glad everything went good!! I know it's so hard to see them after surgery, just try to look at his beautiful face through all those tubes and remember this part is only temporary. Praying that Sammy will do GREAT and you will be able to get some rest too.
Millie
So glad things went well! I can't even imagine how relieved you must feel. I'll still be hoping for a speedy recovery for Sammy :)
Posted by: geeky at May 22, 2008 8:50 AMYAY SAMMY!!!! Hugz all around!!
Posted by: Darren at May 22, 2008 9:01 AMdreampt about you all last night. prayers hugs and love to you all.
Posted by: jouette at May 22, 2008 2:00 PMI remember coming to your site years ago, from Gigglechick saying SnazzyKat was having a kitten! How far you've all come.
You, Jay, and Sammy are amazing! I wish you the best!
Hey you..
Been on my mind over the last few days with the surgery.. it sounds like all is well.. but wanted to let you know we've been thinking about you..
RC
Posted by: RC at May 26, 2008 12:11 PMNew to the blog..I love how they update the family. (My daughter, January will have the Fontan this summer.)the hospital we take her to Never update the family when they are in surgery and the day of her glenn about five hours into surgery I saw her dr. walk by the waiting room two times and Never talk to me. Going back to read more blog..I'm really enjoy reading it.
Posted by: April Hudson at February 22, 2009 9:14 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
Stay strong today. We will be checking in on your little man all day. (an you guys too) You are almost to the other side of the Fontan.
Posted by: Amy Fiorillo at May 21, 2008 6:23 AMLots of prayers coming your way!
The Fiorillo Family