Tuesday, March 24, 2009

Rough day

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Jaime didn't have to go into work until 1pm today so for the first time since November she got to come with us to our regular Cardiac appointment. Aside from waiting for an hour for it to begin, Simon did fairly well during his ECHO (we kept him reclined only slightly in Jaime's lap). Howard let us know that not much looked different (same Ejection Fraction and Shortening Fraction 36% and 18%) but then he mentioned almost in passing that Simon's left ventricle seemed to be just a little bit more dilated. It was "marginal" but we would need to keep an eye on it.
Fuck me. Marginal my ass.

Of course, now Jaime and I are trying to not to worry and simply get back to that place of taking each moment for what it is, but what (new) parent can really do that when there's something that might be wrong with your child? What new parent of a child with a heart condition can do that? What new parent of a child with a heart condition that also seems to be changing every five minutes because he's just about to turn 1 and is hitting growth spurts and milestones that we've never seen before can do that?

I could probably go on but Mrs. Rosner my 5th grade teacher didn't like run on sentences.

I'm trying to sit with the 'Simon's hitting milestones and growing' thought rather than the 'Simon's heart might be getting worse' thought.

It doesn't help that our sweet amazing sleeper is changing into a tantrum before bed kinda guy.

Tonight he went psychotic on me for a little over an hour, completely inconsolable and tired as all get out.

I was just about ready to call the hospital when the Tylenol that I gave him 30 minutes before finally kicked in and he fell into a heavy sleep in my arms. Before that happened though I was about to lose my shit.

Any baby (or adult) having a tantrum for an hour is hard to deal with. Nothing to be done to soothe, the arching back, the wails that seem to cut right through you, it's not a good time for anyone. Simon having a tantrum like that feels just that much harder. In my mind all I can see is his enlarged angry red heart working itself much harder than is good for it, growing larger and weaker with every passing minute, wail, arched back spasm.

Really, I was about to lose it. It wasn't even one of those "I want to toss the baby out the window" moments. It was an, "I have to figure out how to stop this or else Simon's heart will damage itself even more than it already is."

No pressure there.

And, what I do know is that Simon's heart is a lot more resilient that I think it is, especially in those moments. Why? Because when I checked his heart rate 15 minutes later it was 120, and when I checked it 15 minutes after that it was 90.

Deep Breath

It's not great but he can have moments like that.

The following morning (it's now Wednesday evening) it became clear what's going on.

Simon is deep in the throes of his 1 year growth spurt. He pooped three times today before 3:30 (he's usually a once a day, if that kind of guy) and has completely changed his nap schedule.



Totally normal for a baby approaching one year.
Thing is, he's not a normal baby. Even if I were just a new mom of a typical healthy 1 year old, this would be off centering enough. I've heard other new moms talk about how hard the changes can be, in that once you finally feel like you have some kind of routine down....they go and change it on you and you don't know what hit you.
With Simon, it's that I catch myself noticing his changes and wondering what the hell is going on? Only my "what the hell is going on?" is also about wondering if he's decompensating in regards to his heart failure.
Heart failure. Simon is still in heart failure. His heart is sick, very sick.

I just wrote this whole paragraph apologizing for bringing that up over and over again but I just erased it. I'm not apologizing for it. You're here reading so....
Yes, I feel somewhat alone in managing that.

{No one is around him as much as I am and even Jaime doesn't get to see the medications going in, the vomit coming out, the doctors visits, and trying to manage his germ contact with other babies and friends, on the same scale that I do. And even when Simon and I do socialize it's not around feeding or medication time- how can it be? That would be so boring and/or messy. So it's lonely. I don't think there's anything to do about it. I don't feel it all the time. I just am now. I feel lonely. - wish I could have the power ballad "All By Myself" playing for you right now)
but I also know that there is so much love and so many people standing with and behind us.

It's hard right now. With the large looming left ventricle question, the growth spurt, and the upcoming 1 year marker, things feel just a little more intense than usual.

I'm hoping that the coming Passover holiday brings an additional kind of celebrating the "exodus". I'd like to think that we're heading out from the tough times.

However, a little less than 40 years in the desert would be nice.




karen said...

i remember some very long days with zu where i felt the weight of responsibility of dealing with the minutia while exhausted. well, clearly your reality is that times 100.

so the support and selflessness, the sense of family and community, the sense of yourself and your limits - all of that must be a terrific comfort on many levels - but compared to the constant repetition of really hard emotions, as well as the repetitive tasks of parenting, and the repetitive tasks of nursing your son... how very complicated to feel so many things at once, in a constant state of fear, hope, dread, isolation, uncertainty, and joy. in the geneva convention, does this in fact qualify as a torture method?? seriously!

i'm sure the amount of times you can articulate how hard and lonely and scary and tenuous it feels are in no way comparable to the percentage of your day that you actually feel those things, so i'm glad you didn't erase whatever apology you might have started about expressing your fears again. we can listen. we are listening, for what it's worth.

Fresh Ground Knits said...

sending you some love

Jen said...

No apologies my darling darling sister. Yup it's hard, and with a "normal" whatever that is child.
When you wrote
Deep Breath
I realized I was holding mine just reading this last blog.
Love and hugs

Justyn said...

ai ai ai. So sorry about the rough, rough stuff. We're thinking of you, and hoping to see you tomorrow at the fm.