Oh, Erika! I am so sorry. My thoughts and prayers go out to that family.

Do what you've got to do to take care of yourself; sometimes we all need a day off from our other responsibilities to snuggle with our own little worlds.

I'm thinking of you.

Sending some hugs your way. Sometimes its ok to take a day off from life and responsibilities. Go snuggle with Sammy and I hope to hear about you smiling soon!!

oh sweetie. i don't know what to say. le sigh.

{{{{{hugs}}}}} for you, and for the family of the other boy.

That made me so sad to read that. This Fontan madness is just horrible. That's what I call it. It's just devastating to read another precious child has lost their life. Try to remember, though, that there are those who have done well with the Fontan. Unfortunately, those are not the ones we remember because lately, there has been so much bad happen! OK...now you have to send me the link so I can go visit...would you, please?

Ugh!

Sometimes I don't know what else to say.

Marcus got his flu shot today and held his breath, he was crying so hard. He always does that, though, and the nurse and I always say, "Breath" at the same time. Big brother, Matthew, told him, "Just stop." Not in a mean way, but he didn't want to see him in pain. When he hugged him, Marcus started smiling and laughing through his tears. The sweetest sight, ever! Ah, yes...love those boys.

Speaking of, I have to go watch "Power Rangers" with them now. LOL. One thing we know as parents of a child with HLHS is that time and life are precious!

Love you! Take care of you! I'm going to go try to get some rest today, myself.

Shari

My heart goes out to the family that lost that little boy.
And my heart goes out to you & Jay for being such wonderful, brave, caring parent's to Sammy knowing he has one more surgery ahead.
He's the both of you. Can't get anymore stubborn then that. *Kiss*

There are good Fontan stories too. I promise. Even after the Fontan surgery is just a memory the fear is still there - always. You just learn to live with the fear, trust that, no matter what, things will be ok. And try, although I know it is so very hard, try to remember that every child who goes through the Fontan surgery is different. Every outcome is different. Every recovery is different. No two heart kids are alike. That helps me when the fear siezes me. And even though Jilly has done great post Fontan the fear creeps in and siezes me - would probably strangle me too if I let it. These babies are gifts and the surgeries that give us more time with them are gifts. So enjoy your gift today even if it means skipping out on work - enjoy. enjoy. enjoy.
If you ever need to "talk" more about the Fontan you can email me.
Dina
sommersx4@yahoo.com
www.jilliansommers.blogspot.com

I'm so sorry for that family. It's just horrible. It seems that you have a way of finding the Fontan's that end poorly. Are the successful surgeries not written about because the support is not needed and life just goes on? Hold on to what Sammy's cardiologist told you last month. He expects things to go well with no complications, right? I know nothing is a given but hold on to that optimism.

My thoughts and good vibes are with you, Sammy and Jay, as well as the family of the precious boy who passed away. I cannot begin to grasp your daily struggle, but I do know this -- you are not wasting a single moment, and Sammy is all the better for it. And when Sammy's surgery comes, there's a veritable army of strength waiting to lift you guys up, as best as we can without sharing your burden directly.

I can't begin to fathom your fears either, Erika, but I know you and Jay are wonderful parents to a special little boy. I agree with the posters who said sometimes you have to take a day away from the responsibility and just give in to spending time with Sammy. You're a mommy first. He's a very lucky, special little boy. I've loved reading about him and getting to know him through your blog. Much love (seriously, even if we've never met) and strength to all 3 of you.

My heart, thoughts and prayers go to their family as well as yours. I know I can't feel what you and your husband go through every day, but I am so glad that Sammy has two parents that love him so much.

Oh this is just ... wretched. My heart so goes out to that family and all of you that have to deal with these unthinkable realities. I hate this for all of you.

It absolutely makes me want to go home and never do anything but spend time appreciating my little girl. Housework be damned. You enjoy your Sammy. Forget everything else.

Erika,

I am so sorry about this little boy our heart goes out to the family. We know what they are going through.

I want to encourage you as well. Their are MANY MANY fontan cases that do amazing. The cases you hear a lot about are those that need support and prayers. The ones you hear little to nothing about are the MANY that fly through the surgery and are home to fast to request or post. This surgery is scarey and makes you want to throw up. Remember too all the great and many children that have done well not just the scarey ones.

All our love
Terri and Crew

I am so sorry.

((HUG))

My prayers to that family, but to you Erika. Your a Strong Mom and you have a good heart, keep loving little man and your right. No regrets. Little Sammy will be alright, he's a tough little guy and just the cutest too. Can't get enough of his gorgeous smile. ((((HUGS))))

Hi Erika -- I saw your comment on "joyunexpected" and something made me click on your link. Glad I did. Sammy is so gorgeous, and my heart just goes out to you in these early days of worries. We started our HLHS journey 10 years ago, and I do want to let you know that there *are* some blissfully happy-ever-after stories out there. Sure, we are sometimes plagued with the "what nexts," but our little girl is a healthy, active, brilliant and compassionate little person. She takes rock-climbing classes and wants to be an "animal rescuer with my own TV show." I almost never mention her heart to people we meet now. I know how those deaths hit you -- I have had to step back from many lists I was once on. But focus on your sweet boy. He will write his own story.

(((HUGS))) I know just what you're feeling...every time we lose one, my heart just breaks.

Prayers for the family.

Christyne