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This morning, Sammy woke up in a great mood. I snuggled him onto my lap and asked him if he knew what today was. We talked about it being Christmas Eve and how Santa would be flying his reindeer to all the houses of the little boys and girls and leaving them presents under the tree. We talked about the presents he bought for the little boys and girls who might not have presents, and that Santa picked them up at a very special place, wrapped them and will bring them to those little boys and girls. He was very excited about the little boy opening a Little Einsteins laptop that he bought for him.

Then I asked him what present he wanted from Santa, and of course, his answer was, "Drums!"

Jay and I bought him a replacement drum set for the one he demolished, but as we're traveling for Christmas, we weren't going to bring it with us - instead, we were going to give it to him when we got home. I explained that drums were very big and that Santa might not be able to fit them in his sleigh. I asked him what other instruments he may want from Santa (we bought him a little play electric guitar and a "Sammy-sized accordion", as well as a few small instrument ornaments he's become enamored with).

As we sat on the floor, Sammy buried his face in my belly and said in a tiny, sad voice, "But I really want Santa to bring me some drums."

So we went to the window, opened it up and peered into the sky to see if we could see Santa. Sammy wanted to ask him directly for some drums. We looked into the grey morning skies and I explained that Santa was still at the North Pole getting ready for tonight. Sammy decided that we both needed to call Santa's name "fortissimo!" so that he could hear us from so far away. He counted off - "1, 2, 3!" and we both called to Santa. And then, in that same small voice, he said, "Can you please bring me some drums?"

I'm guessing that tonight, Jay will be setting up a small drum set at my folks because as much as this is about Sammy, it's even more about me wanting to see the look on his little face when he wakes up tomorrow and sees the drums waiting for him under the tree.

She looked at me and chuckled. "I know," she said in camaraderie. "It's like once you turn 35, they don't even bother."

The really sad thing? I'm only 33.

SIGH.

Sammy's appointment went well yesterday. In the end, they can't explain the drop in his oxygen levels. Everything they can see looks good. His cardiologist said that there could be things going on that they would only be able see by cath, but he wasn't worried enough to take that on right now. He did say that we will probably have the cath to close the fenestration sooner than later, as that should help with increase his sats considerably and help to alleviate some of the "blueness". All in all, a good visit. Frustrating, because we have no answers, but they feel he's doing fine and they're not worried by it, so I guess we shouldn't be either, right? :-)

During the Fontan, they created a fenestration (a hole) to help his body handle the change in pressures with his new circulation. His fenestration was "generous" and we knew that his sats would remain on the low side until they closed the fenestration by cath in a year or two. His cardiologist was fine with this, and we all expected his sats to increase over the months following the Fontan. And they did - Sammy was up in the 80s for a while this summer. We knew, too, that the more active he was, the more mixing of blood across the fenestration there would be, and the bluer he would turn until he calmed down and rested. Again, no one seemed concerned about that, so even though I think it unsettled us both a bit, we trust his cardiologist very much.

Over the past few weeks, Sammy has had a couple of episodes where he turned very blue. (Think blue-raspberry lollipop mouth and purple fingers.) We put him on the sat monitor, only to find out that he had dropped into the 50s. Since he remained (incredibly) active through it, his cardiologist didn't think it was an immediate need to have him seen. What is more concerning to them, however, is not those blue "episodes" so much as it is that his overall sat levels have decreased over the past few months. Where he was in the 80s over the summer, he is now back into the low to mid 70s - not ideal. And that they decreased instead of increased (and settled out) means a fun ol' trip into Boston for us. Since there shouldn't be much fluctuation post-Fontan, and since he's remained very active, they don't believe it's anything cardiac. The job now is to figure out what, if anything, it is.

Today, Sammy is scheduled for an EKG, xray and echo. Please keep him in your thoughts. We're hoping that it's just Sammy and these shifts in saturations will be fixed once he has a cath to close the fenestration. But please pray that if there is a problem, it is easily detected and easily remedied. Thanks so much.

(Cross-posted at Baby Samson.)

We are working our way back to normalcy. It is busy and good and I am so grateful for both the craziness and the calm of it all.

I much prefer twitter, flickr and facebook for sharing and keeping up with people. If you're looking for me, you might want to check those places. :-)

We're enjoying a wonderfully mellow weekend at our friends' camp up in NH. The weather has been stunningly perfect - 85, cool breeze, just warm enough to get in the water, gorgeous, clear sun. This morning, I spent some quality time in a hammock along the river while the kids played in the water. When I got up, I was the most relaxed I've been in well over two years - it felt like I had just had a massage. This afternoon, Kim volunteered to watch Sammy so Jay and I could get out and canoe the calm waters. Right now, I'm at a window overlooking the sun setting, margarita in hand, kids mellowing out, Larry cooking risotto and scallops for dinner.

Sammy has spent two days swimming, playing with Merri and Elliot, laughing and squealing a lot, catching frogs, climbing, fishing, running, splashing, digging in the sand and just having an absolute blast.

Yeah, this definitely does not suck. Thank you, Kim and Larry, for inviting us! This is just what we needed.

I've read quite a few moms who mourn the loss of the "baby" in their baby, who have a hard time coming to terms with their child growing up and the milestones attached to that. Me? Not so much. My anxiety is centered around how he's going to do, not that he's growing up and into his own little world separate from us. If anything, I'm excited about that. A heart dad commented on a post over at Sammy's site: "Sometimes I believe I have an advantage over parents of "heart-healthy" kids. The time they have spent lamenting how quickly their kids are growing up, I have spent hoping and dreaming that Sophia would get to grow up."

I get this. Each milestone we hit is one we were so uncertain we would ever get to see. Each one is a huge celebration of the thing we weren't sure he would get to experience. Is there a tinge of sadness in it somewhere? I'm sure, somewhere there is. Will I cry tomorrow? Maybe. But my heart is full of excitement and joy with each step forward he takes, full with realization that yet another hope, another dream, is being fulfilled. If I cry, I can guarantee that will be why. I want to go back to the me, pregnant and terrified, the me pre-Fontan, and tell them, One day, you WILL get to see your little boy head off to school. I promise you this.

That day is tomorrow. And for that I'm so, so grateful.

Ok, a tad bit melodramatic now that I'm home, but at the time, it was truly terrifying. For what it's worth, I did a search and there was, in fact, a tornado in Hillsdale NY in 1995 - so it IS possible!

Other than that, we had a great time. Sammy was completely smitten with the abundance of roving musicians and their instruments. The camp down the road from ours (Bread and Bones) had a bass, and he let Sammy hold it and pluck the strings. The kid was beside himself - he was about to burst with excitement. We attempted the Family Dance (contra dancing), but he was more content with chasing the girls around instead. (And so it begins.) But the best moment had to come during one of our favorite FRFF moments: Dar Williams, "Iowa", when the sun has set and everyone on the hill breaks out their lights to sway along with the music. Sammy held up his green glowstick, looking back over our shoulders at the rest of the hill, lit up under the starry sky, and when it was done, just looked at us both and asked, "Again?"

And then my car got stuck in the mud Sunday morning, and then the rains came and it took Jay twice as long to get home, and when we were all home, we were just so very glad to be home. For as wonderful as the music and community is, the weather definitely took its toll on all of us. And yet, we've already begun counting down the days until next year. :-)

Today, he woke up from a short nap in hysterics. Now, he rarely cries, and here he was, sobbing for mama. I mean, wouldn't let go of me, screaming, "I want my mommy!" I was certain this was it - I didn't want to bring up the words hospital or doctor - I didn't want to put them in his head if they weren't there, but on some level, I was sure that's what was going on.

We got in the car to pick up our CSA share and he was still freaking out. I drove with one arm reaching back, and he held on to my finger with everything he had.

"Sammy?" I tried again. "Why are you sad? Why are you crying?"
I braced myself for the answer. Through sobs, I finally got a reply: "Because the park has too many kids in it and I can't play!"

I wanted to cry at the sheer simplicity and innocence of it, at the fact that it wasn't this huge lingering monster of his heart surgeries, but something truly traumatic to a 2 year old's psyche: dreams about not being able to go down the slide because there are too many kids playing in his way.

Once upon a time, I blogged five or six times a day. Now? Not so much. Obviously.

It's 2 am and I should be sleeping. (Who really ever says, "Hey! It's 2 am - I should be raking the yard!"?) But I'm not. At least I got a few hours in before I got up again, right? Freakin' insomnia. It's what I get for weaning myself off the beautiful, wonderful Ativan. But I told myself the Ativan would be only to get me through the sleepless nights pre-Fontan, and here we are on the other side of it, so no more happy pills for me.

Have I mentioned how much I loved that Ativan?

Anyway.

Sammy: Amazing. Incredible. Starting school (for real this time!) next month. The language that comes out of him is on par with a 3 or 4 year old. Long, complete sentences, proper grammar, descriptions, proper questions, incredible reasoning. Still obsessed with music. Today, he told me, "I will play the rhythm on my drums and mama, you can play a song on my trumpet, ok? We need to play fortissimo. Does that sound like a good plan? (Bang, bang, bang). CRESCENDO!!!!" I kid you not, just like that. Started potty training in preparation for preschool. Wore underwear for the first time today and only had one accident. Still with the low oxygen sats, trying to not let it get to me, trusting that his cardiologist and the amazing team at Children's know what they're doing. Not looking forward to the cath they'll need to do to fix the issue (close the fenestration - hole - they created as part of the Fontan), but looking forward to pink lips, fingers and toes.

Me: Registered for the 5k that's on my list of things to get off my ass and do. Training, not as much as a I should be, but still running when I can. Started Weight Watchers, too. Determined to get back into shape. Working a bit, watching my roles shift and change (in a good way) and enjoying the ride. Still anxious (hence up at 2 am), still struggling a bit, but in a different way. I wrote a post on Sammy's site shortly after he was diagnosed titled, "Redefining Normal". I spent three years in that normal, and now it's time to redefine it again. I guess I'm trying to figure out what our world looks like now that, aside from the cath, we're simply raising a kid like anyone else. I'm trying to figure out who I am now, especially since I've spent the last three years saying that I'll get back to being me after the surgeries were all done. Who am I now, after all we've been through? How do I even begin to figure that out? And all those things we talked about, all those things we said, "After the Fontan" - well, now those things can shift around to the front burner. I'm trying to make an effort to do more things for me, little things, like read a book or really sit and relax. I'm trying!

Every so often, I find myself falling into this idea that now we have years, hopefully decades, in front of us, instead of the panicked fear of numbered days until the Fontan, and instead of the overwhelming insistence that I celebrate each and every moment and live each and every day with Sammy to the absolute fullest god forbid, now I feel a little less of that push. I wonder if I'll ever take my time with him for granted. I feel some days like I do, and I don't like it. I didn't like the paralyzing fear of pre-Fontan, but I don't know that I ever want to get so comfortable that I forget to be so grateful for my time with him. For him. I feel like that's one of the gifts he's given me - to slow down and be here, in the moment. I don't want to lose that now that we're past the Fontan.

Otherwise, we've been spending time with family and friends, getting outside as much as possible, and counting down the days to Falcon Ridge.

I'm thinking it's time to head back to bed.

(How's that for some mean alliteration?)

I've said to a few people that I feel like we left the hospital with a newborn. Not in the sense that we had this helpless creature to take care of, but instead we left with one with a future wide open in front of him. When we left after he was born, we had steps to get through - we'll let ourselves think about that after the Norwood or we can plan for that when we get through the Fontan. While I would sometimes think about Sammy's life as he grew older, I never let myself fully imagine all the possibilities that lay before him. I never let myself imagine him at 6 playing t-ball, or at 10 riding bikes with his friends. I couldn't embrace these dreams that parents have for their children's lives. Everything always stopped at the Fontan, and while it was my own doing, I resented it. I resented how easily others could envision their child's world as they grew, resented how I felt so trapped by the what-ifs of the three surgeries.

So when we left this time, I imagined it's how new parents feel, leaving the hospital with a whole new life in their hands. I know nothing is a given and simply making it through (simply - ha!) the three surgeries is no guarantee, but it's a damn good start.

I'm still plagued by the mini-anxiety attacks I would have pre-Fontan, and I have to talk myself down from them. I'm often still caught off-guard that we are now through the very thing that's been over our heads for two years. I'm amazed that it is now June, and May - oh, how I dreaded May - is behind us. Is it really June 1st? How did it all go by so quickly? How is it that for two years this surgery loomed so large, and now it's done? It's not even two weeks past and Sammy's quickly getting back to the little boy we love so much. I'm grateful that my brain does a good job of protecting me, as I'm already blocking out a good portion of the whole experience. That's not my job now - now I can focus on raising one amazing little boy.

Thank you for showing your concern and friendship. Know that even if I haven't written you back, I truly appreciate that you're thinking of us. It's just easier right now to not talk or write about it - everything sends me over the edge, so the further I keep myself from it, the better I can get through the day.

The schedule is this: Monday we head to the hotel. Tuesday is pre-op, which includes an EKG, an echo, bloodwork and an xray, at the minimum. Family will be coming into town and staying at the hotel with us. Wednesday, he goes in for the Fontan. We don't know the time and won't until Tuesday, but we're hoping for first case. They expect to keep him fairly sedated for the hours after, only waking him up enough to make sure he can breathe over the ventilator before they'll extubate him. If all goes well, he'll move to stepdown a day or two after surgery. Average recovery is 7-10 days, during which we'll take turns staying with Sammy and napping/sleeping at the hotel - one of us is with him at all times, and family will be there too. As long as he is doing well physically, I imagine we can get through the rest.

We will update my Twitter (if you're unfamiliar with Twitter, you can create an account and have updates sent right to your cellphone) and Sammy's site pretty regularly to keep everyone in the loop. Otherwise, please understand if we're not in touch personally. We know you're thinking of us, and please know - we appreciate it so very much.

If you're local and well (not a single sniffle!), we'd love for you to visit post-surgery. You can email us or call the cellphones, and if Sammy's up for visitors, we'll figure out the details. In the meantime, we could use some good thoughts, positive energy and prayer to help carry us through. Cause really? This is the hardest thing we've ever had to do.

Last week, we got a new car. We had been talking for a while of getting something bigger, since there was no way to fit anyone in the back seat of the Focus with Sammy's carseat in. Long story short, Focus was in rough shape and I ended up trading it in for a Fusion. Love it.

Flash forward to today: took a corner too sharp to avoid a car who was coming around a corner too fast and came into my lane to avoid the buses taking up half of his lane. Made it about a mile before I realized: flat tire. On the new car I was already paying enough for. Hello, meltdown.

Thank god I was meeting my friend and her daughter for lunch. She took over Sammy duty while I made calls. She came over to check on us while we were still waiting for Roadside Assistance and then graciously covered my butt so I would have cash to tip the guy (who refused the tip anyway).

Turns out, there was a major accident right at the intersection I had driven through, not moments after I had driven through it. So very thankful we have just a flat, as it could have been much, much worse. And the tire won't cost as much as I thought it would to repair (though more than I had planned on spending when I woke up this morning!) and he had to get it from another dealer - which bought me an hour at home so a very overtired Sammy could nap.

One of these days - I'm thinking post-surgery? - I will get back to being able to cope with the little things in life. I should probably go a little easier on myself. I'm just grateful for the support system - and the little gifts from the universe - keeping me from going over the edge until then, even if I don't say it or show it.

3 boxes of Honey Bunches of Oats
1 box of Kashi Go Lean
1 box of Kashi TLC Oatmeal cookies
2 bottles of Palmolive Antibacterial dish soap
2 bottles of Vive Pro Smooth Intense Shampoo
2 packages of Stayfree Ultrathins
2 pacakges Carefree
2 packages of 3-bar Irish Spring soap
1 14lb container of Tidy Cats Scoop litter
2 boxes L'Oreal Preference hair color (Intense Red Copper, in case you were wondering)
2 6oz containers of Blue Diamond almonds
1 Colgate whitening
1 Maybelline Mineral Power foundation
1 Maybelline Mineral Power blush

Considering I got everything for less than the cost of the makeup and the haircolor, I'd say that I made out pretty well. Will update later with links to sales & coupons, but now? I need to get my brain out of CVS mode and into Sammy mode!