Wednesday, November 30, 2005
Onward
Finally a day without doctors -
this time next week I'll be a mother
again
but for how long, they can't say.
No magical medical prescription
can answer that question.
You know, there is no passion
in the coming of the Carolina winter
just sudden cold whispers and
a subtle change in the flavor of sunlight
from peaches to pine,
and my chest seizes at the passing
of another week - onward into December.
congenital heart defect,
poetry
posted by Erin @
6:45 PM
So it's December, officially, as of 1 minute ago. Another month gone, another year winding up to its end. 2006 seems still to be a long way away though - weirdly distant. I guess I just have to get through this month one day at a time. The closer it gets to the 7th, the harder that seems to be. I know I'll make it through whatever happens, because life doesn't really offer any other option, yet on some level, I don't think I can.
I don't want to do this again. Isn't once enough?
I keep trying to be positive you know - trying to convince myself that lightning can't strike twice. But lightning has struck again. And I want to believe that life (or fate or god or whatever) can't be cruel enough to take another one of my children from me, but the truth is, it may very well be just that cruel. And I'm torn between facing reality and keeping hope.
And you know what? It's just fucking wrong to have to contemplate the possibility of having to plan a funeral for one of your children, let alone your second child - and within weeks of Christmas no less. And it sucks to have to accept that as part of your reality, and then feel guilty for thinking that way, and beat yourself up for not thinking more positive thoughts because you know that you'll feel responsible if things go wrong. And there are no answers, let alone good answers or right answers, and there are no choices because you're not in control. And it's fucking wrong that as a mother, you have to accept that you can't fix this for your child because this isn't some little booboo to kiss, no scraped knee that you can love away.
And I want to let go, to break down, to feel whatever I feel and react to it however I need to but I can't because I'm afraid I'd never get back up. Afraid that people around me would think I'd gone insane. And I want to give myself permission to be depressed - and I just want to stop having to go on like everything is just fucking dandy. And I can't, because I have to be strong enough to survive, strong enough to be here for the other kids through this, strong enough that Scott doesn't have to hold me up, because he's going through the same things I am and it isn't fair to expect him to be some superhuman hero who puts aside his own fear and pain to drag me through mine.
You hear people say how they found themselves in some bad situation, hoping it was just a dream, wishing they could just wake up and realize that it was all just a trick or a joke or a nightmare, and it's become almost a cliche - but it's surprisingly possible to find yourself in that position. I spent months after Alexis died wishing I could just wake up. Months of mornings spent re-digesting reality, re-accepting her death. And here I am again. With every kick and hiccup, every mad dash to the bathroom, all those things that make a pregnant woman sort of grin and rub her belly and think of tiny little fingers and sweet newborn smiles - all those things that should make me look forward to next week just remind me again that this baby isn't OK, that this baby may never come home. . . And I just want to wake up and realize that it's all a bad dream.
congenital heart defect
posted by Erin @
6:44 PM
Tuesday, November 29, 2005
I need to write poetry, but I refuse to post shit-poetry in order to fulfill a cathartic need. I have loads of it in draft form though :)
Have you guys discovered Blog Lines? I freakin' love it, I go there to "my feeds" and read all of your blogs from one spot. However, I have to admit that I feel a little guilty about reading your blogs without actually visiting them. You should all change your blogger settings to show only the first bit of each post rather than the whole thing.
I finally got some antibiotics for this thing I have. I'm pretty sure it's a sinus infection, and the coughing is caused by the drainage. The doctor gave me an Rx for Z-pack without even testing me for anything, mostly because I all but begged I think, but also because I emphasized that if I'm sick when Donovan's born, I won't be able to visit him in the NICU. I think she didn't want to be the one responsible for me not being able to visit him, you know, just in case. This Z-pack must kick ass though. (Yogurt. Must remember to eat yogurt...) You know how antibiotics usually work, 2 or 3 a day for like 10 days? This stuff - I took 2 pills today, then 1 pill a day for the next four days. That's it. Guess that way she figures I'm done with the full course before he's born. That works for me. Maybe I'll sleep tonight, god I hope I sleep tonight! I had a very nice nap when I got home today. It was good to sleep... sleep is good. I miss it.
My stomach does tricks y'all. It dances and stuff all by itself.
Let's have some fun with math eh?
I'm 37 weeks and 5 days pregnant, I've gained 22lbs. At the ultrasound they did all their magic measurements and said he weighs 5lbs 13oz right now. But my god! I caught site of my profile in the mirror today. I have never been this big. I'm freakin HUGE! So I decided to measure my "waist" this afternoon. Normally it's 26" - it now measures 39 1/4"!
All these figures add up to my seriously round figure, which resembles something from a funhouse mirror. I'd post a picture, but, well... no. :)
congenital heart defect
posted by Erin @
6:47 PM
Monday, November 28, 2005
Another ultrasound. The cardiologist wanted another ultrasound, and that's what he got today. Of course afterwards, he didn't really tell us anything we didn't already know, except to have put a more definite calendar into effect by saying that the surgery will definitely be sometime within the first 10 days. No later than December 17th. One way or another, whatever happens with the surgery, we'll know before Christmas. God help me, I hope that he does fine with the surgery and is a week into his recovery by then - which would mean that he'd be looking at a positive prognosis. Something to celebrate for Christmas.
And they looked back into Alexis' chart and saw that she WAS tested for Di George Syndrome after all, and it came back negative. That means that most likely, Donovan is negative too, and we won't have all the other complications associated with that to deal with. That's a huge relief to me, not only for Donovan, but for my other kids and their kids.
We haven't heard anything from Randy yet about his tests today, but I figure they have to wait for results. I'll let you's know.
So it's back to the Ob/Gyn tomorrow. She was at the consultation with the cardiologist today at the Women's Institute - I wish she could have just done it all while I was there. I despise driving into Charlotte. It should take about 35 minutes to get there, but normally takes more like an hour and a half - and that was BEFORE the holiday shoppers were added to the traffic mix. In other words, in order to get there by 9am for my appointment tomorrow, I have to leave home no later than 7:45am.
That's before 2 of my kids are even on the school bus.
And you know, Charlotte presents itself as a wealthy, well-to-do, beautiful city... The nations second largest banking and financial center... A "World class city with small town charm." The taxes are through the roof, and there is constantly road construction - why do the surface roads suck so bad?! Holy Hay-soos, by the time we get where we're going, I'm pretty well convinced that Donovan has been shaken out of me and I'll have to catch him when I get out of the truck!
congenital heart defect
posted by Erin @
6:48 PM
Sunday, November 27, 2005
I'm not really one to buy into horoscopes or zodiac signs or whatever, but my daughter asked me today what sign Brendon was, which led to me looking up all the signs and their symbols. That in turn led me to a page called "The Destiny of Babies Born in the Year 2005" so of course, knowing when Donovan will be born, I couldn't resist looking up December 7th. It was interesting to say the least.
Born between December 1 and 10, 2005, your baby will possess a sense for the supernatural. Will be romantic, dreamy, and endowed for the arts. Tendency to pessimism and discouragement. Weak sense of reality. With his soft heart will always feel the need to help and to serve. Numerous difficulties in love life. Vulnerable to cardiac palpitations and cramps.
Now like I said, I don't believe in the shit, but it's an interesting coincidence.
congenital heart defect
posted by Erin @
6:50 PM
I go tomorrow to talk to the pediatric cardiologist about the "probable course of action" with Donovan. I realize they aren't going to be able to give me anything concrete until he's born and he's had his ECG and possibly a cardiac catheterization - but I'm hoping I'll feel a little better being able to put faces with names and shake the hands that I'm trusting to save my son's life. There are only 10 days now. A month ago it seemed like I had forever to go, now suddenly it's going so fast.
Tuesday it's back to my regular doctor for my weekly poke-n-prod. I'm glad I have a little bit of knowledge and the nosiness to ask about things when I'm in doubt. The new doctor wants to make me redo all these tests and stuff that I've already done with my other doctor. I've saved myself all sorts of torture by being able to say, "I've already had that test!"
We haven't told the kids yet - we just didn't see any reason to make them worry and be afraid and helpless for weeks like we we do. I just don't know when we will tell them. Before he's born or after? I don't know. Probably after when there's something more solid to tell them. It all gets so complicated and touchy, and there just aren't any good answers.
And I've got to get over this cold or whatever it is I have, or I won't even be able to hold him when he's born.
congenital heart defect
posted by Erin @
6:49 PM
Saturday, November 26, 2005
Kalime'ra Zoe
Winter has settled in, claustrophobic grey
over a carpet of leaves I never bothered to pile.
I've left them to do their whispering in peace.
It looks like rain, and it's cold.
The mailman hasn't come yet;
the difference that makes is none.
Last night I dreamt my father called
to say that Noah's Ark had run ashore,
empty save one gender-balanced pair.
He said the olive crop was poor this year
and the dove can find no branch
that can bear the long trip home.
congenital heart defect,
poetry
posted by Erin @
6:51 PM
Wednesday, November 23, 2005
Fourteen days till December 7th.
That's the official date, the day Donovan will be born. I go in at 8am for an amniocentesis to ensure that his lungs are fully matured, then off we go to delivery, with the blessed addition of an epidural. My seventh labor and delivery, my first epidural. For the record, that huge amnio needle scares the hell out of me, but I figure there's enough to be frightened about right now, so fuck it, skewer me, I don't care, just give Nova the best chance he can get.
I really like my new doctor. She's very sweet, very professional, and has some sort of magic when it comes to bedside manner. She had no miracles to offer me, told me I'd be delivering 2 days earlier than I thought, because they want several days of the cardiac specialists being in the hospital in case Donovan is in really bad shape and needs the surgery immediately, or needs some special hands-on care from them (apparently, they take weekends off) then she added the joyous news of the amniocentesis, and yet, somehow, she made me feel at ease, comfortable even. I figure that was pretty damn good considering that I was fighting tears the whole way there. It's weird, I can keep it all in check at home, but something about going to/being in a doctor's office sets me off. I cried for 3 hours straight at my last appointment.
I pity the doctors, and Scott too, especially Scott, for all that I'll put them through on December 7th. I already warned Scott that I'm going to be a mess, I just hope that I'll be able to support him half as much as I know he'll support me that day. He isn't exactly the emotionally demonstrative type normally, but he's good under pressure, bless his heart. Out of compassion, I won't ask him to be there for the amnio though, he's not real good with needles.
congenital heart defect
posted by Erin @
6:52 PM
Tuesday, November 22, 2005
Death, or the possibility thereof, makes people uncomfortable. It makes them stutter and stumble and study the scuff marks on the toes of their shoes. What does one say when speaking to someone facing death when you aren't - hell, maybe you never have, so you feel awkward, maybe even guilty, right? But definitely speachless. Do yourself (and the other person) a favor at that point, don't try to force out something, and god damn it don't start flipping through the rolodex-o-platitudes for just that right little saying.
Now don't get me wrong, if there's something you want or need to say, something heart-felt and sincere, wonderful, say it. But not stuff like "everything happens for a reason" or some religious thing about how they're in a better place or whatever, ok? Someone said to me the other day, "God gives special children to special mothers" followed shortly by, "Well, He must know you're very strong, to have given you not one but TWO children with these defects!" As if this was a badge of honor I should wear. Know what's sad? I was talking to a therapist, a THERAPIST for fuck's sake. Where'd she get her little therapist license? K-mart?! Christ.
Yes, I'm angry tonight. I don't know why tonight more than last night or this afternoon, but I'm seriously just pissed off. Probably because I go to see the new doctor tomorrow and find out a definite date on the induction, which terrifies me. My reaction to fear is anger, always ha been. Never never jump out of a dark corner and scream "boo!" at me, because I will punch you in the mouth, cuss you out, and not speak to you for a month, because that shit just ain't funny!
Damned adrenaline or some such thing I guess.
Anyway, my point is that you folks, most of whom have never even met me, have been more intelligent and caring than that stupid woman. A therapist said 2 of the worst things I can think of in regards to my son's heart defects.
Let's be honest people, ok?
My son might die.
That has no bearing on whether I'm special or not, it doesn't make me strong, it makes me what? ...unlucky? cursed maybe? but not strong. And I refuse to believe that, if there even IS a god, that he goes flipping through the big book of people looking at the "S" section (s, for strong and special) deciding who he's going to drop the bomb on.
The truth is, I'm doing whatever I'm doing because there isn't much other choice, because I don't know any other way to do it. If I could stop it all right here and right now, I would. I'd hold my breath and stomp my feet and refuse. I'd stop the sun from rising if it meant my son would be ok, and the hell with how it affected anyone else. But there's nothing to be done. This isn't a sign of strength or specialness, it's resignation, or, well, as I like to call it:
Acceptance.
congenital heart defect
posted by Erin @
6:54 PM
Sunday, November 13, 2005
It's gotten so I see more doctors than I know how to count anymore, and yet, I have less and less idea of what's going on. I go back to my regular doctor in the morning, but that doctor isn't going to be the one that delivers, he doesn't even practice in the hospital I'll be delivering in. I have no idea at this point who WILL be delivering Donovan. I know they want to induce labor, but it isn't actually scheduled yet, nor have I seen the doctor who will schedule it yet. For that matter, I don't even know the damn name of said doctor.
They want to induce, which means no C-section, which is a good thing, I think, sort of. I mean, I really am afraid of what an emotional wreck I'm going to be through labor and delivery, but I'm also a huge wuss about surgery. I don't like the idea of being cut on. But then, a C-section is quick and allows for much less freak-out time. But then, at least I know that with an induction, I'll be there in plenty of time for pain meds, unlike the majority of my children who've been born sans meds because I get there and deliver so quickly that there's just no time for meds. But then again, who knows if they'll even be willing to give me any meds under the circumstances. I guess that would be a question for the unnamed faceless mystery doctor eh? I'm praying for an epidural! I've never had the luxury of one of those, just demerol once. Yup, once, out of 6 deliveries, and that was 16 years ago. OK, I had demerol with Kory too, AFTER he was born...
And of course, this is all on top of the list of unknowns as far as the severity of Donovan's cardiac defects, the timing of his surgeries, the possible other complications he may be facing, how long he'll be in the NICU, and ultimately, the outcome of it all.
There's my tubal ligation, which the schedule for is already screwed up because of the induction and hospital switch, then there's Christmas, and not knowing what's going to be going on at that point.
Speaking of Christmas: You know it's 2005 when your kids email you their Christmas list, and they live in the same house with you!
We've been trying to get some serious Christmas shopping and planning done between now and the delivery date. We just don't know what's going to be going on. We're usually horrible procrastinators. I mean, it's November 13th, and we consider this early for Christmas shopping. We just want it to be done by the 8th (or whenever they induce me) so we don't have to worry about any of it after Donovan is born, since to be honest, if it isn't done before then, they'd all likely do without.
There's honestly only one thing I can guarantee. When Alexis was in the hospital, my mother made me feel guilty about spending a lot of time at the hospital with her. According to her, I had "other kids at home that needed me too." She only lived 12 days. We were together the entire first 24 hours but then they took her to the nursery and kept her for the next 12 . After that she was transferred to CMC, where I spent maybe 10 hours total over the next 9 days thanks to my mother's guilt trips. I'll never stop regretting that I didn't spend more time with her, and I guarantee, I'll be spending every possible moment with Donovan.
I have to be realistic and face the fact that he may not make it through all of this, and I'll be damned if I'll take the chance of having to bury him with the same regrets I buried Alexis with.
congenital heart defect
posted by Erin @
6:59 PM
Saturday, November 12, 2005
This is his little face directly in the center of the picture. I don't know if you guys can see it very well, but he looks like he's lying on his side looking directly at you, his chin is to your left and the top of his (apparently hairy) little head is to your right. Still don't see it do ya? OK, see the large black blob toward the bottom? OK at the highest point of that is his left eye, then above that is the bridge of his nose, then above that is his right eye... maybe I should go make another copy of this with some labels!
And this picture is called "Boy" for a reason, because I know how many blog surfers are looking to see some private stuff, if you know what I mean. How do I explain this one? If you look you can see, in the bottom of the picture, centered left to right, something that looks sort of like a turtle, yup that's it. If you can't quite get it into focus, let's just say he's aiming to the right.
congenital heart defect
posted by Erin @
7:01 PM
I want to thank you all for your thoughts and prayers. I've been doing a lot of that lately, I guess I have a great group of friends on here don't I? I know that a lot of you are at a loss for words, some of you have been visiting and reading and not saying anything at all. I don't blame you, I don't know what to say either. Words fall short sometimes, and that's not always easy to admit as a writer. I just want you all to realize how much it means to know that you care, whether you say anything or not. You're frequent visits (yes, I still check my stats, if for no other reason than to distract myself) are evidence enough, there's no need to struggle with words, we all know there aren't any.
We all want to fix this, and there isn't a thing we can say or do that will accomplish that. So please, don't mistake my silence for a lack of gratitude or caring - I just don't have the energy to put them together in pretty little lines right now.
Most likely, when I do say anything at all it will come out wrong and I don't want to hurt anyone's feelings either. I'm just as likely to say the wrong things here as any of you. So I'll probably keep myself busy with silly shit that means nothing, link fests or mindless posts, interspersed with bits of anything we find out. Just stuff to let you guys (and myself maybe) know I'm still alive.
Love you guys... and I don't care if that sounds silly.
congenital heart defect
posted by Erin @
7:00 PM
Friday, November 11, 2005
You know, they say that God doesn't give you any more than you can handle. I've never had a lot of faith in that idea. I had an in-depth-up close ultrasound today because they like to really study my babies' hearts since Alexis. They told Scott and I today that this baby appears to have the same defects as she did. Definitely tetralogy of Falot, quite likely Pulmonary Atresia, and VSD (ventricular septal defects)
We're waiting to hear when the appointment is for an even more in-depth ultrasound, 3d I guess, so they can see how bad it is, to see if this baby has any more chance of survival than she did. I'll be delivering in CMC rather than URMC now, because of the NICU and the pediatric cardiac specialists there.
I hadn't had any intention of having them tell me the gender, but with all of this, I figured knowing would be a good thing. It's a boy. Donovan Zane LeClair, presently 5lbs 5oz. They also say the due date seems it might be a little later than they thought before, more like 12/23 than the 15th. He'll definitely have to have open heart surgery, and if he makes it, will be facing a life full of further surgeries as he grows.
I don't know how much I'll be around for a while, maybe more, maybe less, maybe not at all, I don't know. I just don't know if I can do this again.
posted by Erin @
7:04 PM
The ultrasound confirmed our fears about the baby's heart. He definitely has tetralogy of Fallot and vsd, and the one thing I was hoping most of all that they wouldn't find, which is pulmonary atresia. Pulmonary Atresia is the most difficult (from what I can understand) of them all to correct, and the most life threatening of the cardiac abnormalities he has.
We also spoke to a geneticist. They want to test us all after the birth for a chromosomal deletion called Digeorge syndrome (or 22q11) because the recurrence of these particular congenital defects is a red flag for it. Apparently, this can also come with a lot of other deformities in the immune system, the palate, the facial characteristics and other physical characteristics, as well as causing mental retardation or learning disabilities and deficiencies in the immune system. None of those things will be known until after birth. I have to do more research on it, but just what I've read so far... for Donovan's sake, and for my children's children's sake, I pray we aren't facing that.
What sucks is that if it IS digeorge syndrome, the first indication should have been 8 yrs ago, when my son had stomach surgery, because apparently pyloric stenosis is also an indicator. At the very least, when you combine the pyloric stenosis with the heart defects that Alexis had, someone should have realized that digeorge syndrome was a possibility. No doctor has ever put the pieces together and realized the possibility until now. Why?!
They did give me a super clear shot of Donovan's little face on today's ultrasound though, I'll post that later, and maybe some others from other ultrasounds. I have 2 of his 'maleness' that he seems more than proud to display for the camera.
Anyway, they're going to induce labor early so they can control when he's born - they want him born during the day, a weekday, so all of the pediatric cardiologists are on site when he's born. The doctors at The Sanger Clinic (the cardiac specialists) couldn't save Alexis, but I know that they're the best around for what we're up against. And the children's hospital and NICU department at CMC is amazing, so at least I can say that he'll receive the best care possible from the second he's born.
I'm trying to be positive, but it's hard after Alexis, hard to believe that this can have a happy ending, and hard to allow myself the luxury of thinking everything will be ok... or at least as 'ok' as is possible with the situation. I'm terrified and confused and I dread the emotional state I'm going to be in during labor and delivery, knowing that as long as he's in me, he's ok, but once he's born the defects make the decisions and the danger really sets in. Plus, we may be facing a whole other set of challenges that we know nothing about yet if this is Digeorge syndrome.
Someone (someone really wonderful) emailed me and let me know that I could vent to them about the unfairness of it, or rant and rave and vent the anger. I can't get there yet. After Alexis, the anger literally saved my life. I hope I find the anger soon, before I lose my mind.
congenital heart defect
posted by Erin @
7:02 PM
The ultrasound confirmed our fears about the baby's heart. He definitely has tetralogy of Fallot and vsd, and the one thing I was hoping most of all that they wouldn't find, which is pulmonary atresia. Pulmonary Atresia is the most difficult (from what I can understand) of them all to correct, and the most life threatening of the cardiac abnormalities he has.We also spoke to a geneticist. They want to test us all after the birth for a chromosomal deletion called Digeorge syndrome (or 22q11) because the recurrence of these particular congenital defects is a red flag for it. Apparently, this can also come with a lot of other deformities in the immune system, the palate, the facial characteristics and other physical characteristics, as well as causing mental retardation or learning disabilities and deficiencies in the immune system. None of those things will be known until after birth. I have to do more research on it, but just what I've read so far... for Donovan's sake, and for my children's children's sake, I pray we aren't facing that.What sucks is that if it IS digeorge syndrome, the first indication should have been 8 yrs ago, when my son had stomach surgery, because apparently pyloric stenosis is also an indicator. At the very least, when you combine the pyloric stenosis with the heart defects that Alexis had, someone should have realized that digeorge syndrome was a possibility. No doctor has ever put the pieces together and realized the possibility until now. Why?! They did give me a super clear shot of Donovan's little face on today's ultrasound though, I'll post that later, and maybe some others from other ultrasounds. I have 2 of his 'maleness' that he seems more than proud to display for the camera.Anyway, they're going to induce labor early so they can control when he's born - they want him born during the day, a weekday, so all of the pediatric cardiologists are on site when he's born. The doctors at The Sanger Clinic (the cardiac specialists) couldn't save Alexis, but I know that they're the best around for what we're up against. And the children's hospital and NICU department at CMC is amazing, so at least I can say that he'll receive the best care possible from the second he's born. I'm trying to be positive, but it's hard after Alexis, hard to believe that this can have a happy ending, and hard to allow myself the luxury of thinking everything will be ok... or at least as 'ok' as is possible with the situation. I'm terrified and confused and I dread the emotional state I'm going to be in during labor and delivery, knowing that as long as he's in me, he's ok, but once he's born the defects make the decisions and the danger really sets in. Plus, we may be facing a whole other set of challenges that we know nothing about yet if this is Digeorge syndrome.Someone (someone really wonderful) emailed me and let me know that I could vent to them about the unfairness of it, or rant and rave and vent the anger. I can't get there yet. After Alexis, the anger literally saved my life. I hope I find the anger soon, before I lose my mind.
congenital heart defect
posted by Erin @
4:44 PM
Thursday, November 10, 2005
With Alexis we didn't know anything until she was 36 hours old. There was no pre-cognition, no agonizing wait. We were blissfully ignorant for the entire 9 months. It was better, easier at least. Knowing doesn't help anything, there's nothing to be done until after he's born anyway.
Now I'm just stuck here in this partial knowing, waiting. I'm just trying to grasp it, accept it, but that's hard to do without knowing exactly what I'm supposed to accept. I'm trying not to obsess, trying to stay positive, but I don't think I'm doing a very good job.
congenital heart defect
posted by Erin @
7:03 PM
Name: