There are just over 9 hours before Sammy officially turns 2.
TWO!
I got our weekly babycenter.com email, and every week, the subject has read: “Your Toddler this week.” Now? Your PRESCHOOLER.
PRESCHOOLER.
We had his little birthday party today at a local playground, complete with party hats and cupcakes and all the things one would expect at a typical toddler (oops, sorry, PRESCHOOLER ) party. Sammy has been talking about it for weeks, listing all the friends who would be there, how we were going to sing, and the candles – oh, the candles! Even though he was so uncomfortable with a miserable cold, he still went to bed with a huge grin on his face.
(I have a PRESCHOOLER? How did THAT happen?)
In about nine hours, my little boy will turn 2. What a two years they’ve been – and we couldn’t have a more amazing little boy to show for it all.

I’ve been trying to teach Sammy about how this whole food thing works – in the mouth, into the belly, out as pee pee or poo poo – I think he’s mixing up the order a bit. And pay no mind to the spots on his shirt – this was post-dinner, and you ‘rents of toddlers know how dinnertime goes.
Slowly putting more videos up here.

I appreciate all the “Happy heart day!” emails I’ve gotten this morning. I’m always so touched when I am reminded that people are thinking of us. So please – do not feel offended by the rest of this post!
That said, if I have to hear one more “CHD Awareness Month!” or “Happy CHD Awareness Day!” or see one more article or news segment on heart issues, I might lose my sh*t. I understand the need for it, I understand the need for the awareness, I understand how underfunded CHD research is, but really – I do not need to be reminded about CHDs every freaking time I turn around. I live it each and every day. I understand that funding research would mean that fewer kids might not have to be in Sammy’s place and I understand that awareness is needed to raise those funds.
But at a time when I’m trying to live our lives and raise a toddler as a toddler and not a walking CHD, the constant reminders aren’t really helping much. And Valentine’s Day is becoming increasingly more difficult to simply enjoy as a day to celebrate the love in my life. And for that, I’m actually pretty damned bitter.
It is important to me that Sammy’s heart condition is secondary to who he is, not the totality of who he is. When he gets older, if he wants to participate in heart awareness days, I will support him totally. And I want to do the CHB walk as a huge thank you for everything they’ve done for Sammy. But in the meantime, I don’t want it to define him, and I feel like a lot of February is all about his heart defining him and us. I know right now it defines a huge part of me, but I try so hard to not let it define or limit him. He is simply a little boy who needs a little extra work to help him be the healthiest little boy he can be.
Selfish? Maybe. Are we so lucky that we have a toddler whose heart condition hasn’t stopped him? Beyond lucky. Maybe if we were in a different place I would feel differently. I’m grateful that Sammy can provide hope for other heart families. I’m grateful that his website has given comfort to so many others. But in the end, he is a little boy, not a heart defect.
I’m tired of being slammed with CHD Awareness every time I turn around. I feel like the “odd (heart)mom out” because I don’t pounce on every opportunity to share statistics and facts and get all amped up about declaring February 14th as CHD Awareness Day. Yes, there’s a need for it, but I just can’t embrace that role. Part of me feels as though it’s being forced on us and expected of us simply because Sammy has HLHS, and really? I just want to go back to flowers and chocolates.
Even though it brings us closer to Sammy’s next surgery, I will be so glad when this month is over.

Last night, Sammy snuggled into his pillow in his bed, said with a sigh, “We’re home” and promptly fell asleep. It was so perfect.
Everything we brought with us smells like Betadine, the very hospital smell that makes me want to vomit. I can’t get the smell out of my nose. Jay spent a good portion of yesterday doing laundry, and last night I plopped Sammy down in the shower (he can’t have a bath yet) and scrubbed him as clean as we possibly could. We even sang a little song about washing away the doctors and the hospital. He was just happy to be drawing all over the walls with his bath crayons, but gah, I couldn’t do enough to wash it all away.
It was only three days, but it felt so long. So very happy to be home.

It took some serious begging and the absolute promise that we would go no further than the hotel across the street for the night, but they discharged us. We’ll keep an eye on him for the evening, and as long as he looks and is acting fine in the morning, we’ll be home before lunch.
WOOO HOOO.
Can I tell you how ridiculously impossible it is to get a 2 year old to lie absolutely still for SIX HOURS post-cath? Or how thrilled I am that we had a nurse who caved into our requests for a wagon to wheel him around in? Or how wonderful the staff was when we snuck into the patient bathroom with a flashlight to entertain Sammy for just a few more minutes?
Do I need to even begin to tell you how happy I am to be in the hotel and to have the cath behind us?

The doctor just came in to let us know he was all done. He’s fine and we should be able to see him in about 45 minutes.
Of course, as soon as the door opened and I saw a white coat, I went into cautious panic mode. Here’s how the beginning of the conversation went:
Hi, I’m Dr. So and so, I did the procedure on your son, I’m sorry –
And I panicked for a few seconds until she finished up with – I wasn’t there to meet you beforehand.
HELLO! You NEVER start a conversation like this with “I’m sorry…”!!!!!!!!!!!!
Sammy’s cardiologist came in to talk to us, told us Sammy’s a great candidate for the Fontan – his pressures are great, his ballooned aorta is one of the best developed ballooned aortas they’ve seen, everything looks fantastic. They did have to coil off one collateral artery off the aorta, so it’s iffy as to whether or not we get to go home today. They’re currently applying pressure to the entrypoints, and once he’s all settled, we get to go be there when he wakes.
Phew. Step 4 out of 5 in this journey done – Norwood, pre-Glenn cath, Glenn, pre-Fontan cath. Now, one more step ahead of us and hopefully the last one for a very, very long time.

Sammy’s back for the cath right now. It took a LOT of sedation to make him mellow out, and even then, they told us it took a long time after he was back there to knock him out. It breaks my heart to think that he was awake – even if he won’t remember it – but that he was awake and we weren’t there with him. I promised him we would be there. I’m having a hard time with that.
Update from the nurse – which was so much later than we expected (and only because I was starting to panic and made Jay go ask) because they were having such a hard time getting him to fall asleep: they have a cath in each leg and in one shoulder. They’re currently taking pressures and pictures right now, and then they’ll look for collateral veins they might need to coil off.
We expect another hour or two before they’re done. We’ll update when we can.

Pre-cath fun done! There was the expected amount of hysterics (Sammy’s and mine), but he really was such a brave little man. We were sent first for x-rays, then blood work, then an EKG and an exam. He even did well while we talked over what to expect tomorrow with the Fellow, learning to blow bubbles and playing with his Blues Clues toys.
We were done by 11, which was nice. We had lunch, Sammy got his fill of Disney TV in the cafeteria (what hotel doesn’t have Disney and then charges $10 for a 24-minute On-Demand episode of Mickey Mouse Clubhouse?!?!?) and has been napping since 1:30.
We report back tomorrow morning at 7am for his cath. They expect it to take 1-3 hours. Jay and I will be able to be with him until he’s sedated and ready to go, and then we will be there when he’s waking. Since we’re first case, there’s a better chance we could go home tomorrow, but I’m not getting my hopes up. It all depends on whether or not they’ll need to do work while they’re in there.
And thanks, Shannon, for commenting with all sorts of explanatory information. Here’s her comment:

For those who might want to know more, I did some digging on Wikipedia in the course of blogging my “Send good thoughts” blog entry, and have provided a bunch o’ links to things like the Fontan procedure, HLHS, etc: http://geekhabitat.com/1208/send-hugs-positive-energy-prayers/
The short answer is the heart cath is being done to determine if Sammy will be a good candidate for the third of the three staged surgeries used to treat (not cure) HLHS. The first (“Norwood”) is done shortly after birth and is mandatory; the Glenn (aka bi-directional Glenn, or Hemi-Fontan) is the next phase , and Sammy’s had that already as well. The Fontan is the completion phase of the Glenn. If you’re short on time, just read http://en.wikipedia.org/wiki/Fontan_procedure, specifically the “Indications” section. It explains why a cath is done prior to it, as well as why the procedure’s used at all.

Your thoughts and prayers and positive energy really do carry us through. Thanks so much!

We’ll be headed into Boston shortly for Sammy’s heart cath. Plan looks like this:

1. Hotel tonight, pre-cath workup (xray, bloodwork, EKG, who knows what else) tomorrow at 8:30am.

2. Hopefully done with that in 4-5 hours. If Sammy’s up to it (and we are too), we might make a trip to the Aquarium. My folks will make it into town around dinnertime.
3. Thursday – cath day. We don’t know a time yet. Apparently they will tell us that tomorrow. Cath, I believe, should take 3-5 hours.
4. Thursday afternoon/evening will look one of two ways: if the cath was simply exploratory and they didn’t have to do any work AND it was early enough that they can observe him for a few hours after he wakes up and everything’s fine, they’ll send us home. If the cath was later in the day, they had to do work, or they want to observe him longer, they’ll keep us overnight.
5. Either way, we should be back home Friday afternoon, universe willing.

I’m a wreck. Jay stayed home today to help get ready because I’m just so overwhelmed, I don’t know where to begin.
I imagine I’ll become extra good friends with Ativan over the next few days. Please keep Sammy (and us) in your thoughts – we could use the positive energy. Thanks.