Nova's Heart - 4 months of life, a lifetime of love

Tuesday, January 31, 2006

If I were shallow enough to be hung up on looks, or insane enough to be considering Nova's wedding before he reaches 2 months of age, I'd say I want him to marry this little girl. What an absolutely GORGEOUS baby!

congenital heart defect

posted by Erin @ 6:17 PM 0 comments

The littlest ones, in the yard last Friday. Crazy lack of winter we're having this year eh?
This is Terra, who looks deceptively as if she's doing yard work. Actually, she's pretending the wheel barrow is a boat, and the sticks are oars, and she's singing "Row Row Row your Boat"

Nova is just supervising, and wondering why it's so freakin bright and warm in January.

The blanket was only because it was breezy - not because it was even slightly cold.

congenital heart defect

posted by Erin @ 6:16 PM 0 comments

Monday, January 23, 2006

Dread

When fear is buried
it germinates and
what snakes out of fertile soil
to smother all you ever knew are
heavily entangled vines of dread.

Everything withers away under a kudzu cloak,
dies beneath the weight of its ever growing shade.

Even the things you love.

congenital heart defect, poetry

posted by Erin @ 5:05 PM 0 comments

Friday, January 20, 2006

Submission

You kneel, the fold of your knees pressing in,
the wail of a midnight train that parts my dreams.

There is no peace in the march of a tulip, fiery
orange into the blue sheen of snow. Steady

shorelines have no desire to defend themselves
from the crush of incoming tides. Yet you are

the face of the moon hung high on my thighs,
my secret shining. Your hands on my belly

tell me you no longer fear the invasion
promised by the smile of the Sunday sun.

Poetry

This poem was originally posted over the summer of 2005 - I'm reposting it because - though it was widely misinterpreted as being a sexual poem - it's about Scotty and I coming to terms with this pregnancy and everything that it meant at the time.

congenital heart defect

posted by Erin @ 5:03 PM 0 comments

Thursday, January 19, 2006

A bunch of pics from the last week or so...

The moon at noon, a few days before it was full. Lousy picture, but you guys are used to that from me, right?

This picture had BAD redeye, and I couldn't fix it unless I made the picture sepia tone. I kind of like it that way!

The correct way to eat a Twinkie... cream first ;)

Ain't he cuuute?!

*mwaaaah!!*

Not liking his bath much this night, which is unusual, he usually LOVES it.

Out like a light, all warm and toasty on the water bed

Doesn't this look like the Dr. Jeckyl and Mr. Hyde Series?

I have to figure out how to take pictures without so much redeye!

Kassi

Kassi and Tom

Kassi in the newspaper (not really, another redeye fix)

Tom out in the yard

congenital heart defect

posted by Erin @ 5:02 PM 0 comments

You know, when I could say, with a tiny newborn Nova in my arms, that the surgery was three months away, it was easy - those three months were a barrier, something that, quite honestly, I hid behind. Now, at any point in time, the surgery could be as close as a week away. There's no hiding from that. I get more an more terrified as time goes by, when I really thought that having the 3 months to 'prepare' (mentally and emotionally) would make it easier to accept. Truth is, it's made it harder.

I mean, with Alexis, we never had the chance to grasp the idea that she might die. With Nova, I've had time enough to turn it into an obsession.

congenital heart defect

posted by Erin @ 5:01 PM 0 comments

Tuesday, January 17, 2006

Back to the cardiologist today. There's been no further drop in Nova's blood oxygen level since last week, so I guess the cath, and iron supplements are doing what they're supposed to do. Dr. Watts wants to put it off as long as he can, but we have to go back to see Dr. Bensky on Monday, so that slot he left open next week will still be open in case he decides they need to go ahead with the surgery.

In other words, they say he's doing ok, but still might do the surgery next week, only they won't just say that they're going to do it - they want to see if they can drive me insane with uncertainties and unknowns.

I saw my ob/gyn on Monday morning, apparently, my cut, cauterized (and perforated) self, aside from my belly button being a bit sore (and crusty thanks to something called "nu skin" - or "skin glue" as Dr. Sobel calls it) is just fine - no infection or complications of any sort. Yay me. I'm looking forward to some nights of uninhibited wild sex sans the worry over pregnancy! I keep thinking to myself, I can't get pregnant. I can't gt pregnant. I can never get pregnant again! Then again, knowing me, I'll be the one oddball that manages to get pregnant despite the fact that I've been sterilized. Anyway, to be totally honest, it's a little weird, knowing that so long as the doc did his job right, I can't have any more children.

In other (un-medical) news, my landlord, due to his undiagnosed status as an blathering idiot (and in my unprofessional opinion an Alzheimer's patient) combined with a mistake that he made with the dates on our rent receipts in October, is claiming we owe him $600 that we simply don't owe him. There is, and never has been, any arguing with the man. I tried to explain what happened and when that has created this confusion, and neither he nor his wife wanted to hear a word of it. Tomorrow I'll try to show them, to prove, using our copies of our rent receipts, to them that I'm not a month behind on my rent. If that doesn't work (and I don't believe that it will) then I will most likely be evicted.

Exactly what I need right now eh?

congenital heart defect

posted by Erin @ 4:58 PM 0 comments

Time

I savored the storm-ridden sunset
like a spoon full of sherbet - orange,
curved and cool behind my eyelids.

But night air rides the train whistle
and rusts the horizon-spoon against my tongue
while leaves turn aside,
belly up in submission,
and wilt away.

There is darkness in January thunder -
in pockets held tight to my hip
and nothing sweet
in the winter rain of my chest.

congenital heart defect poetry

posted by Erin @ 4:55 PM 0 comments

Friday, January 13, 2006

So, Donovan had his cath today, and it seems like everything looks pretty good. They're still going to put the surgery off a little longer, maybe as soon as 2 weeks but probably longer than that. Apparently his iron was low which can affect the oxygen levels, so they're going to put him on an iron supplement and see him weekly for a while and see if that helps. But the doctor said that he's waited long enough to have made it through the high-risk period anyway, and that whether they do it in 2 weeks or 2 months isn't really all that different anyway. I still hope they wait a while longer, because I'm just not ready to face the surgery and its risks yet, but then, I probably never will really be ready.

Anyway, the cath went well, his oxygen levels were up quite a bit in recovery. There were no complications, and although he was slow to wake up, he did better this time than last. We were there for about 12 hours and then came home. He's still sort of 'out of it' but doing great. He really is a little trooper. I think he takes all of his procedures better than we do.

It's been a fuck of a week - 5 doctor's appointments, one tubal ligation, and one balloon cath later, I'm dead on my feet and headed for bed. Have a good one!

PS: Are you superstitious?
There's a full moon, it's Friday the 13th, and Nova was in slot 13 in recovery. . . I'm not superstitious about full moons or the number 13, but if anything, today blows the bad-luck theory all to hell, eh?

congenital heart defect

posted by Erin @ 4:54 PM 0 comments

Wednesday, January 11, 2006

Well, so far this has been a hell of a week, and promises to continue to be full and busy. There have been doctor appointments every day this week. Monday was a well-check/weight check. The thrush isn't cleared up yet, but his weight gain and growth is in the 50-75th percentile. He was up to 9 pounds 9 ounces.

Tuesday was our bi-weekly visit to the cardiologist. They weighed him too - up to 9 pounds 13 ounces overnight...
They checked his Oxygen Saturation levels, which is mostly why we go. His numbers have been on a steady decline since we left the hospital, which means the collateral are shrinking. It's the thing we were hoping wouldn't happen, or that at least it wouldn't happen so soon. Dr Bensky was pretty concerned by the trend, and they scheduled his heart cath (originally scheduled for late February) for Friday morning, and want to go ahead with the surgery. We'll know the definite date on Friday afternoon, but most likely will be within the next week or so. It's a sudden change, and not great news. We really wanted to put this off until he was a couple months older. We're sort of in shock over it.

While we were at the cardiologist's office, my ob/gyn called and left a message on the voice mail for me to call back. Looks like surgeons are in a hurry to do surgery this month - my tubal ligation was scheduled for January 26th, but Dr. Sobel moved it up to tomorrow, which meant that today, there were a total of 4 appointments between 1pm and 3pm.

Tomorrow, I'll spend the day in outpatient surgery having my tubes tied. I have to be there by 8, and they figure I'll be on my way home around 2. Friday morning we have to be at CMC by 6am for Nova's heart cath. That'll be an all day affair, and possibly an overnight stay, which will eat up most of Saturday too most likely. Once this catheterization is done they could do the surgery at any time.

I kept saying how easy it was to pretend that we weren't facing the surgery - easy to just not think about it. All of a sudden, it's undeniable, and right around the bend, and I'm just not ready yet.

congenital heart defect

posted by Erin @ 4:53 PM 0 comments

Sunday, January 08, 2006

So I've been distracting myself with the silliness I've been posting, but the truth is that I'm still falling apart inside and trying to survive on denial.

Nova is so perfect, so healthy and strong, and having him home makes it easy to pretend that there's nothing wrong with him. Then someone or something will remind me and it all comes crashing down again. It was hard, devestating, to lose Alexis, I loved her - but she never came home, I never "knew" her. With Donovan, he is a part of our family, bringing him home makes him "mine" in a way that Alexis never was, and I don't know how to take him back now, how to face the possibility of losing him now.

And so I vascillate back and forth from the super-highs of new-mom happiness where every grunt and grumble is newsworthy event (I didn't tell you guys, he SMILED at me yesterday, and he's starting to coo!) - and the terrified gut-wrenching lows where I picture this all going like it did with Alexis, only worse. It's like being manic depressive, only with a psychotic twist...

This is too hard, I'm not this strong, but life doesn't give us any options sometimes, and here I am doing it, whether it's too hard or not, because this isn't a multiple choice question.

He has the most beautiful smile, and the absolute most adorable perplexed look where he furrows his brow and looks like he's about to say "whatchoo talkin bout Willis?!" I hurt knowing what he's facing, what he's going to have to go through, and it kills me to know that there's nothing I can do to make things better for him.

congenital heart defect

posted by Erin @ 4:48 PM 0 comments

Friday, January 06, 2006

IntrospectionI am bits and pieces lately, and I wonder if my whole is greater than the sum of these parts. Every little thing spawns some internal dialogue, the tiniest thoughts inspire poetic fragments - but seriously, I'm not crazy enough to talk to myself, and I hate fragments.

congenital heart defect

posted by Erin @ 4:45 PM 0 comments

I got a comment the other day on my post where I found out for sure that Nova had Tetralogy and Pulmonary Atresia - it was a comment by a woman who has a son with similar defects. She left a link to the site she's built dedicated to her son Zachary, which details their journey through treatment and surgery with him. I thought some of you might find it interesteing - I did, even though the pictures of her son after his first surgery were so frightningly remniscent of Alexis right after her surgery that it mortified me to the point of trying to close the window, but being unable to find the "X" in the top corner to close it.

I've read nearly every page of it, especially the journal. It was really nice to read the story of a family that has had a positive outcome. Like I told her, it's hard for me to see past Alexis to believe that Nova can make it through this and be OK.

Anyway, it's a great site for anyone who wants a little more info on heart defects, and what it's like to make this journey that we're facing with Nova. Her son's defect isn't exactly like Nova's, but similar enough to get some basic insight.

congenital heart defect

posted by Erin @ 4:41 PM 0 comments