There are roses in the lobby...

of the Ronald McDonald house tonight.


A little boy named Carlo lost his battle today 1/31/11.



We know nothing about him other than he lived, he was beautiful, and now he's gone.

His parents are staying in room 75. We are in room 79. I can't imagine the pain they must be going through.

It puts today in perspective doesn't it.

No matter what happens or how hard it is we WILL be taking you home someday and for that fact alone we are so blessed.

Goodbye Carlo. Fly free beautiful baby boy.

You are our happy story......

I was thinking back about some of my post and and realized there is something missing.

Things I need to say.

Then I read a comment this morning (btw I do read all the comments and appreciate them very much. There are several that I am planning on addressing as soon as I get a chance too) that clarified what I hadn't said.

I've told you about your illness, about our fears. I've described in detail your surgery, and our daily battles to get you well and home.

What I haven't told you is how much I love you.

How just the sight of you heals all my wounds, sooths all my aches.

How your little sounds, and your smell, are addicting to me and put me in a such place of peace and comfort.

Just being near you and my fatigue fades away and worries ease.

I wish I was better with words so I could truly express to you how deep and unconditional my love is.

Your father and I hoped, dreamed, wished, and yes even in our own way prayed for you over 18 long months of infertility.

We would talk of our Jelly and how much we needed you to complete us and how you were the missing piece of our family long before we knew you were you.

You baby boy. You are our dream come true. You are our wish fulfilled.

You, exactly the way you are, you are our miracle.

Your brother is our gift and you are our miracle.

You are a happy story.

You are our happy story.

and I wanted to make sure I told you that.

A little video of you really awake last night. I always forget that it will record what I say so sorry about that. What sounds like you breathing hard is actually the "push" of air that is helping to keep your lungs expanded. The sound of the baby in the background is one of our roommates.

Thank you for your comment Vback. Your so right.

Mason is a happy story. :)

Some time with the devil...and it's extubation day again!

Your Dad figured out how to get us WiFi in our room so I spent some time with the devil last night (aka Google) doing a little re-search and reading about things that may, or may not, affect you in the future.


None if it was particularly helpful, but it's a bit like crack, one hit and your hooked and no matter how you tell yourself to stop you keep clicking the next link.

At one point your Dad asked me if there are any happy stories out there? There are but I just wasn't finding them last night.

I seem to have falling into a dark place and I can't find a way to get out of it right now.

So now after hours of crying last night I have a killer headache. I'm mad at myself for staying up so late, or if I was going to stay up so late why didn't I go sit with you?

I finally got myself to get up and get in the shower (Dad was at your bedside taking his shift) and after more tears I figured out why I was feeling the way I was. I remember it from December. It's because we're back in the unknown.

Dealing with the known something like your surgery, while hard, is much easier than dealing with the unknown. With your surgery there were Dr's explaining what was wrong, what they would do to fix it, what the odds of death were, etc. There was someone there explaining, and outlining the details. Eliminating the unknown as much as possible.
There's no one there to outline what the future holds. Eliminating any of the 1000's of possibilities. For now they can't even give us a why.

I hate being this way. Making Dad worry about me. He has enough to worry about with you. I get back to "normal" soon. I think I just need to be sad for a while.


**************************************************************************************

Today was uneventful till around 3 where they were ready to try extubate you again. We were lucky to have Jose the respiratory therapist here and he suggested using a different kind of non-invasive oxygen treatment that gives you an extra push of air that helps keep your lungs open they usually only use in NICU and it's working!

Your breathing is so much better. You still need a lot of suctioning but your not struggling at all and I do believe ((FINGERS CROSSED)) that your going to stay off the breathing machine this time.

If you keep doing well we might even try feeding you tomorrow.

The Dr's did discover that you have a very small cleft in your palette. I didn't believe him as I had checked your palette a few times myself but you do. It's about the size of a pea and very far back so that (and the fact that you've been intubated) explains why it was missed.

While it's not something we wanted to hear it could be a lot worse than it is. Now we just have to find out how this will affect you and how it will be fixed.

You and Dad bonded watching football

I got to hold you twice today!

Look Ma no tubes part 3!


Juliet your nurse who has the most amazing reassuring and calm demeanor. Somehow she managed to take care of you and Dad and I all at the same time. She was your nurse on surgery day and the day after. I don't thing we could have survived the day without her. Today was the last day before she leaves for maternity leave. I'm thrilled for her but we are going to miss her very much.

More ups, more downs...and thoughts

When we got here this morning the Dr and nurses were all full of good news. They had started diuretics (to help you make more urine) yesterday and you have responded really well. You can see just by looking at you how much of the extra fluids you have shed. You face is half the size it was, and your sternum has shrunk noticeably.

Even more Iv's full of medications for you. Kinda looks like a Christmas tree

Amazing that you can be doing so extremely well and yet look so terrible

This is all great news because it means you might get your chest closed today. Yay! What a next big step that will be.

We keep pictures of your family and brother Pierce at the foot of your bed so you can see us.

But now it seems that the Lasix is working too well even though they turned it off a while ago. It seems you've lost too much fluids and now your blood pressure is dropping too low so they are replacing some of the fluids with normal saline and albumin, and restarting some of your blood pressure medicines.



None of this is unexpected. The Dr's warned us to expect this. We just don't know if this will keep you from getting your chest closed or not. I hope not.


If everything continues to go well then they will close your chest sometime today and then the plan is to extubate you (remove the breathing tube) tomorrow morning.



Both closing your chest and removing you from the breathing tube are big steps towards getting you home. Defiantly something to look forward to.

46 hours down Jelly...so much closer to getting you home


********Random thoughts*******

I hesitated at posting the picture of you after your surgery with your chest open. I was afraid it would be to graphic for most. I thought about putting it in a separate link that you had to chose to open to see it, that way the people who didn't want to see something like this could avoid it. I also thought about just posting a picture at an angle where you couldn't really see the chest thereby avoiding the problem all together but after thinking about it I deiced I didn't want to hide the reality of what you look like and what you are suffering through.

I did this because

1. I want YOU to see what you had to go through to live. What an incredibly strong heart warrior you are my beautiful brave baby boy.

2. Even though twice as many children die from CHD as from all forms of childhood cancers combined funding for pediatric cancer research is five times higher than funding for CHD and only 1% of every dollar raised for research goes toward pediatric cardiology.

Maybe we need to stop hiding the reality of what this disease is and what those afflicted with it and their families go through. Maybe pictures like yours will wake people up to the fact that this disease, along with many others, is extracting a terrible toll on our children and more needs to be done to prevent any more children from going through it.

So here you are my beautiful baby boy. With all the gory and graphic details here for all to see.

Wake up world (including me) wake up and see what this disease does. Wake up and see what they have to go through just for the chance at life. Wake up to the fact that Mason is one of the LUCKY ones because he gets a chance at life with surgery.

So many of our heart babies never even get that.

Goodbye 2010

So officially there may be a few days left in the year but 2010 is DONE for me.

I didn't want to rush through the holidays, and I actually quite enjoyed most of it, now I'm ready to move on.

Even though your dad and I butted heads over it we took down all the Christmas decorations today, packed them up and put them away in the garage. There's just the few sets of lights we have outside and I plan on getting them down and put away soon. Christmas 2010 is done.

2010 has been a long and eventful year for us with more good than bad and I'm ready for 2011. I feel like since your diagnosis I have been moving slowly forward with stuttered steps towards a point in the horizon that is just out of my view. Part of me ready to get there, get going, and get on with whatever will be. Part of me wanting to stay just where we are with you tucked safe inside me.

Frankly I'm exhausted. Exhausted from trying to see what the future hold for us. Exhausted from trying out all the possible futures and how we will deal with them.

So goodbye 2010. It's been a great and eventful year. Here's to 2011. It boggles the mind to think all that 2011 might have in store for us.

Whatever it is in store, I'm ready to get going.