Wednesday, May 31, 2006
There are days when I'm ok, whole days
- which is pretty much a miracle all on its own I figure. And there are days where I'm only ok because I have to be, because life demands it. And the majority of days are a mixture of both, some better and some worse. Today's been a decent day, yesterday was a great day, the night before was horrible - I'll learn not to watch John Edward Cross Country.
I hate to keep talking about Alexis here, on Nova's blog but going through this again, I can't help but compare the two experiences. I'm stunned at the differences. With Alexis, I shut down, completely. There were no good days, there weren't even good moments for the first 6 months. I contemplated suicide, I barely spoke, especially about her, I forgot I had a family, ignored my children. Scott shut down too, to this day we've barely discussed her, never dealt with the loss as a couple at all. The lack of communication caused real problems with our marriage, pushed us apart. The people we became after her death were completely incompatible. I never felt like he understood at all - never dealt with it. I felt, to a certain degree, that she was mine
in a way that she was never his
because all there really was with her was the pregnancy. We never got to spend time with her or know her, so I felt like that 9 months that I carried her made her mine. I felt badly that I had that bond that he never had the chance to have. I felt guilty that I had it, with respect to him, and felt cheated that it was all I had. He wanted to clamp down on it after she died, and he did. I wanted to wallow in it, and I did.
Nova was so different. We brought him home, we knew him, and having him home gave Scott the chance to bond with him, and man how they bonded
. It felt more, I don't know, equal? We had him - together. We knew him and loved him and worried about him and were afraid for him together
. The togetherness became a habit, one that carried over into the month and a half that Nova was in the hospital, and on into the grief. He has been so supportive of the tears on the bad days, of the smiles on the good, and all the things I've wanted to do (trips to the hospital, heart walks, t-shirts, baring my soul on the internet...) and has made some major moves of his own, like changing the name of his new lawn care company "Nova Lawn Care," and deciding not only to walk with me in the heart walk, but to raise funds through his customers. He does things, like show me that news story about Dr. Watts - he'd have never done that after Alexis. And if he had, I'd have run off crying, locked myself, literally, in the bathroom and lost my mind for a while. I'd have been angry that he showed me, and angry that my child didn't live to be on the news. Hell, I was angry about everything, all the time.
Now, though there are, admittedly, few discussion about Nova, few blatant talks about how much we're hurting, we've figured out that it isn't how much talking you do, but knowing that you can
if you need to. And maybe part of it is that the talking doesn't matter so much as the feeling, and the doing, as long as those things are done together. Alexis' death left us emotionally paralyzed, completely closed. Nova's death has opened us up, not only to each other, but to so many other things, and other people, and other experiences - and a whole host of emotions too.
So yeah, the other night, I was up all night hugging Nova's bear and bawling. Yesterday I was hugging Lisa and smiling, and because of having Nova for those 4 months, 4 days, 4 hours and 5 minutes - I know that both those reactions are perfectly OK. Would I give that up to have Nova back? Of course. But since that isn't an option, I'll just feel lucky that he taught us so much - while I'm missing the way he smelled when I buried my face in his fat little neck.
Tags: heart defects, congenital heart defects, CHD, birth defects
, Loss of a Child
posted by Erin @ 11:11 PM
I'm so excited it's silly! But Scott just found this story on a local news channel website, and I HAVE to share it. It's a movie, about another baby in CMC named Chloe... we saw Chloe when we were in the hospital. It's pretty short and doesn't tell a lot, but it does show Dr. Watts (he's the first doctor that talks - if you look closely, you can see that he's stuck a smiley face over his face on his badge.
The other doctor is Dr. Bensky, which was Nova's regular cardiologist.
When Nova first went in the hospital, several people contacted the local newspaper about us, urging them to do a story, but none of the reporters were interested in the story. I'm GLAD that TV crews didn't approach me, I'd have been hyperventilating! Good lord.
Anyway, there's Nova's 2 main doctors! You might have to register to watch it, but it's free.http://www.wcnc.com/sharedcontent/VideoPlayer/videoPlayer.php?vidId=68372&catId=69
posted by Erin @ 6:58 PM
I met Lisa through an online support group for parents with CHD babies. When I caught wind that she was in my area, and that her son would be going in for surgery soon, I felt drawn
to contact her, drawn to be with her on the day of the surgery. But, you see, when you've lost a child to a CHD, it can get, well, uncomfortable, both for myself and for other parents of CHD babies. I don't want to be a reminder of the very real possibility all CHD parents face, others don't want to throw it in my face that their child lived through the same (or worse) condition/procedure that Nova died from. Then there's the whole deal with the tension of other people wanting to say "the right thing" to me right now, and me wanting to relieve that awkwardness for them, because, come on, there IS NO RIGHT THING. Right?
So we ended up emailing back and forth a bit, and eventually (pretty quickly actually) I gave her my telephone number and offered to go to the hospital the day of the surgery. She left it up to me because she was afraid it would be too hard for me, being there again.
Yesterday was her son's surgery, and I went, as I pretty much knew I would, from the time I found out that she was open to it. I wouldn't have gone if she'd said it would have made her uncomfortable...
I was a little nervous about meeting her, I'm funny about meeting new people that way... I'm a wuss - not exactly shy, but sort of. Anyway, she was super easy to meet and we talked for a good while. She had a bit of phone business to do, so I took that opportunity to run upstairs and talk to Kandi (Thanks for the job referrals Kandi!) and when I came back down, she was done on the phone and we all (Her, her preacher, a friend, and some family) sat around talking for a bit and the doctor finished with her son and was ready to talk to them about it. I figured I'd stay in the waiting room while they went and talked to Dr. Watts, but she wanted me to go in, so I did. (You should have seen the look he gave me when he saw me LOL!)
So the surgery went really well by his account, the baby did well - and Dr. Watts was more excited and optimistic than I've ever seen him. It was awesome to see a success story, awesome to see Lisa take that first breath after he finished talking, and frankly, good to see Dr. Watts so obviously happy. It must be this
that makes him keep coming back.
So a little while later, after giving her a few hints and tips (like telling her she gets 4 free-meal tickets a day, and that she could stay the night at the hospital and they'd accommodate her) I went home. Later on she called to say that her son was doing really well, that he was already extubated, and that they were even discussing moving him to a room of his own as soon as this afternoon! She thanked me about 10 times for coming. I hope that me being there really did help; God knows it helped me. It was a huge healing experience for me, and I doubt she'll ever understand what an honor it was to be able to be there for his surgery.
I tried to call her earlier and get a report, but I couldn't get a hold of her. I'll try again in a while. I called twice, and even left a message! I never
leave messages. I border on being acousticophobic. OK not really, but I do really hate my own voice when it's recorded.
Anyway, I hadn't slept at all the night before, so I was exhausted when I got home. We ate dinner and somewhere around 6:30-ish or so, I passed out on the couch, and slept for 12 1/2 hours
! That's like a weeks worth of sleep for me, all in one night!
While I was there, I left a flier sort of thing there with the CVRU nurses, and one with the CHI Patient Reps, about the Heart Walk thing. I hope that some of them decide to walk with us, or at least donate. I really feel like the research that the donations pay for is something that's needed
in the area of congenital heart defects, and I want to meet (or better yet, exceed) our goal.
Speaking of which, I need to talk to a man about some t-shirts. Want to see my design for our shirts?
This is the front side design:
and this is the back side, where all the names of all the heart babies will go:
You can click them to see them full size, but remember that they're for T-shirts, so they're HUGE...UPDATE!The baby is doing REALLY well, he's in his own room, and they plan to have him home sometime this weekend!
posted by Erin @ 2:39 PM
For this week only, Pontiac Motor Division of General Motors is
running an Internet promotion that can benefit the American Heart
Association. This project is being done in conjunction with Pontiac's
sponsorship of The Apprentice television show and was announced just
last night during the first of their two final episodes.
From now until next Tuesday, June 6, anyone can log onto
www.pontiac.com/apprentice, and click on the button under "Raise the
Roof." Select "The American Heart Association" from the list of
charities and Pontiac will make a $1 donation to The American Heart
Association on your behalf until the full $500,000 has been donated to
the eligible charities. Then the voter will be asked to enter your
contact information which enters the person voting for the chance to
win a new Pontiac G6 convertible and one for The American Heart
(Hat tip to Jamie
posted by Erin @ 1:06 PM
Saturday, May 27, 2006
To a mother, her child's death is always senseless. It doesn't matter the cause of death, or how much was or was not accomplished in her child's life. It makes no difference how many candles, if any, adorned their last birthday cake. All that matters is that suddenly, where once there was the brilliance of a child's smile, there is only darkness. There is no justification profound enough to fill that void, no reason that can begin to excuse it.
If she is made of the stuff most mothers are made of, she will lay down there a while, pull the covers of it up around her neck and inhale. It will be where she sleeps at night, and where she will wake in the morning, its arm draped around her waist, the crust of its night-drool on her shoulder. She'll nap there in the afternoons, shower there in the evening. It will become her home.
In time, she will find things with which to fill the emptiness. The first attempts will sound as pebbles dropped into a well, just the echoing of a small splash in the distant darkness. At first, those flashes of redemption will be as effective as a single firefly on a new moon midnight, and yet, she will grasp them as though they were floods and lightning.
There will be poetry and flowers, balloons, butterfly memorials, and secret rendezvous with photo albums where, if she's lucky, she'll find the occasional smile to accompany the melody of her tears. On the exceptional day, she'll turn those pages and find inspiration, and in the white spaces between photographs she will discover the strength to carry her child's name into the future. She may found a charity, or simply donate to one, she may sponsor an event, or just attend one, but whatever her choice may be, she will find a way for her child to live into the future.
Do not misunderstand me; nothing, even decades later, will forgive the senselessness, but she will pull herself from her bed of loss. With a sad smile, she will pull the comforter up to the neck of some favorite teddy bear, and begin to fill her void with purpose. She will have nurtured her grief into the perfect storm, and will find her way through the mourning and into tomorrow with the lightning hope of a mother's love.
Tags: heart defects, congenital heart defects, CHD, birth defects
, Loss of a Child
posted by Erin @ 9:31 PM
Friday, May 26, 2006
When I had Alexis, I didn't realize that so many children were born with CHDs, and spent many years struggling by myself through the grief. When Nova was born, I was still pretty clueless about the sheer numbers of CHD families out there, but thought that there might be local support groups, so I went online to see if I could find any Yahoo Groups. I did, and joined one called Congenital Heart Defect Support
. It offered a place to talk about Nova's condition, and the stress, and the worries, and the surgery, and the thousands of questions I had about it all. They're amazingly supportive, and more than willing to share their insight and knowledge in any way they can. I wasn't as active as I should have been, didn't post a lot, but there was a certain homey feel to the place that made you know that it was OK to just hang out and listen. They didn't demand that you be the talkative one. I'm usually the talkative one though, so it felt a little strange at first. Eventually I posted some comments and answers rather than just questions, and that was nice, to be able to be helpful, you know?
When Nova died, I posted to the group, and of course, as they always are, they were supportive and sympathetic. They're good people. I'm still a member there, but I say even less now, because I feel like by posting, I'm just throwing it in their face that death is a real possibility for every one of their children. I can only imagine that my presence would make them uncomfortable, and that's the last thing I want to do.
So after I lost Nova, I went in search of groups designed for families that had lost children from CHDs and related complications. I found two, and signed up for both. Grieving Hearts
and Our Hearts
. Our Hearts turned out to be based in Indiana, which I didn't realize, so I withdrew my request, and have been very active in Grieving Hearts. I can't even begin to explain how comforting it's been to talk with people who have the same experience under their belts, who have been through a lot of the same things, and had the same feelings and thoughts I did. Sometimes you have feelings and thoughts that really make you wonder if you haven't lost your mind, and like you are possibly the most alone person in the universe. Rationally, you know that's not true, but a lot of the grieving experience precludes rationality.
Last night I received an email invitation to the group that I'd withdrawn my membership request from, or rather, an offshoot of it, called Our Hearts Heaven
. I was touched that I was invited in, I'm a long way from Indiana. I haven't had a chance to do much talking, I just posted my introduction, but the fact that I was invited despite the fact that I don't geographically 'belong' says a lot to me. It shouldn't come as such a surprise though, I have had the pleasure of getting to know so many heart families, and know that they're the most compassionate and deeply caring people. I read a quote once:
"The heart is the only broken instrument that works." ~T. E. Kalem
and the family that has formed in the name of CHD children proves it. Obviously, I'd have preferred to have seven healthy children, and I wish that Alexis and Nova were still with me, but I am so glad that I've been able to get to know so many wonderful people since Nova's birth, to have had them at my side through his life, and to still have them holding my hand since his death.
posted by Erin @ 12:19 PM
Wednesday, May 24, 2006
I am too bungle-brained lately to multi-task. I posted earlier, or at least, I thought I did, but it isn't here, and I have no idea where it went. Interesting. Guess I'll try it again.
I called Dr. Watts' office yesterday, in hopes of getting a full list of the hospitals that handle CHD cases. Dr. Watts was out of the office, which was no surprise at all, he's on the go, patient to patient, all the time. I'm not sure (aside from Diet Coke) how he keeps it up. I didn't get to talk to him, I didn't expect to, but I did get to speak to a very helpful receptionist who seemed to want to help. Since Dr Watts was out of the office, and his receptionist was unavailable, she said she'd send the message to him, and felt sure that Dr. Watts would have the list I was looking for. He's supposed to call tomorrow. I hope that he
calls, and not his receptionist. I'd have a couple of other questions I'd like to ask him too.
He's been doing these surgeries in Charlotte for 10 years, and in 2 cities for 5 years before that. I'd like to pick his brain a bit about how often he sees cases like our family. I'd like to get an idea just how rare it is. I know that as soon as I said Dr. Wagstaff said it was rare, I had heard of a total of 3 families other than mine who had multiple children with CHDs.
I don't know if that means it isn't as rare as Dr. Wagstaff thinks, or if it really is that rare, and I only heard of these other families because of this online heart family network, and the way we all sort of come together. The internet brings people together with their stories - birds of a feather flock together
they say, and that's certainly true with heart families.
Today I talked to Mika of The Maeghan and Heidi Heart Foundation
about the CHD Quilt. I'd love to see it hosted locally, and It'd be a dream to see all 34 quilts at a big function locally. Two problems with that: There has to be a CHD event to host it (of which I know only one, small, yearly function) and, it costs $50 per quilt to host - that's a total of $1700.00 (plus several hundred in shipping and shipping insurance.) Neither Mika or I have that sort of cash.
So she knew of another couple who lost a child about the same time her daughter Maeghan died. A family who started another charity organization in their son's name, and they happen to have a large pocketbook to back it up. We're hoping to be able to hook up with them, and whatever events they might have, which would be hospital-based functions, meaning, hopefully, if things were to go right, it could be something large enough to actually fund hosting the quilt, and still be a major fundraiser for CHD Awareness.
Unfortunately, none of it would be in my hands, I'd be strictly a spectator, not that it matters really, what would matter would be that funds, and awareness, would be raised. If anything comes of it, I'll be sure to let you guys know.
posted by Erin @ 11:53 PM
If I could have a lifetime wish,
A dream that would come true,
I'd pray to God with all my heart for yesterday and you.
A thousand words can't bring you back;
I know because I've tried.
And neither will a million tears,
I know because I've cried.
You've left behind my broken heart,
And happy memories too.
I never wanted memories,
I only wanted you.
I'm not one for rhyming sentimental poetry, but the ending of this one is just too true to not share. I found it on Zoe's Page
. A website built by Tammy in memory of her daughter Zoe, who had HRHS.
posted by Erin @ 2:04 PM
Tuesday, May 23, 2006
I don't know why, but I was more anxious about today's genetic counseling than I was about the appointment with Dr. Watts last week. I was nervous and frustrated before that one, today, I was just weepy and emotional. I don't understand it, but that's how it was.
When they (finally) called us back, they of course offered their sympathies. It's difficult to accept that they were heart felt when neither of them had ever laid eyes on us before today, and only knew of our cases through their medical charts, but we'll get back to that conversation later.
They asked a lot of silly questions that we'd already answered 100 times about family history and the incidence of past abnormalities (of which there is only one, the children's aunt, who has Downs, and has no bearing on our case.) He asked about gestational illnesses, and environmental factors and medications during the pregnancy. He asked if either Alexis or Nova had been autopsied, or if we'd had tissue samples frozen... Eventually, he got down to business, and surprised me by telling me that he had Alexis' genetic testing results too. We never knew she was tested for anything until after Nova was born, so we'd never gotten any results about her.
Apparently, both children tested negative for any known genetic anomalies, and no syndromes were detected in either child. Now for the complicated stuff.
In families that have one CHD baby, the chances of having another increase with each CHD baby born, however, this tends to be true with the less complex CHDs, such as ASD or VSD. These are the most common CHDs, and benign when compared to the defects my children had.
The incidence of families with multiple children with complex heart defects such as Tetralogy of Fallot and Pulmonary Atresia is considerably lower. According to Dr. Wagstaff, it's quite rare. His office has, in fact, never
seen a family who experienced multiple complex congenital heart defects. His office handles all of the genetic testing for CMC, and considering the volume of CHD patients that came through CVRU while we were there, and knowing that they're nearly all tested for genetic causes, that is mind boggling. We're talking about at least five years worth of CHD families. I have no way of putting a number on it, not with any real accuracy, but I'd venture a guess that it's somewhere in the range of a thousand, and that's being conservative.
His opinion is that there is something potentially toxic in the combination of Scott's genes with mine. Separately, we have no greater chance of having a CHD child than the general population, but together, our risks are greatly increased, and on the same sliding scale. Right now, if Scott and I were to have another child together, we'd be facing a 20% to 40% chance of that child being another heart baby with complex defects. (Recall that in other CHD families, there is a 5% to 10% of a third CHD child.)
He also believes that the children we have in common, Kassi, Bren and Terra, have a slightly increased risk as well, something like a 1.5% chance, as opposed to the general population's 1% chance, while the children we each have from previous marriages have the same chance as the general population.
Of course, these are his medical opinions, but the truth is, our situation is so rare that there's no concrete data, no research results to refer to. For all intents and purposes, it is his untested hypothesis. Whatever this genetic problem is that's caused by the mixing of our genes (assuming that's the case - there's always the chance that it was a total fluke, lousy luck, plain and simple) can not be tested for, named, or in any way isolated or explained, therefore, the risks cannot be accurately forecasted.
As unusual as our situation seems to be, apparently he feels that we're not the only family it's ever happened to, and thinks that there is probably research being done on it somewhere as we speak - and he asked if we'd be interested in participating in it if his office could find any being done. You guys know me, and you already know the answer, right? Of course I said yes. It stands not only to benefit science and cardiological medicine in general, but there's a real chance that the findings could directly benefit my grandchildren. So we're hoping to hear from them, or from some independent research organization, the sooner the better.
Now back to those sympathies Dr. Wagstaff offered. It isn't that I doubt the fact that he "feels for" us, as people, he is
human, and seemed very nice. But as he spoke about our case, recited numbers and ratios, and his eyes glazed over a little bit, I realized something. He was doing his best to treat us as bereaved parents and as patients, and doing a fair job of it, but in truth, we were an opportunity to learn.
His mind was reeling at the possibilities for new knowledge. I can appreciate that, to be honest. I'm naturally curious, and have a true appreciation for learning. In his case, I'd have probably felt the same. He absolutely vibrated with a thirst for knowledge.
I suppose other people might have been offended, or put off by it. Personally, it made me smile. That's the kind of folks that CHD families need, the thirsty ones, the ones who crave the answers to the hard questions, because we all deserve the answers.***Good Lord, as son as I say it's a rare situation, I find this site about another family with a second baby with a complex heart defect. I don't know a lot about their history, or about HLHS, or whether it's of the variety that the geneticist was referring to. All I know is that this family deserves a happy ending, so keep them in your thoughts, please.
Tags: heart defects, congenital heart defects, CHD, birth defects
posted by Erin @ 2:35 PM
Monday, May 22, 2006
The Congenital Heart Defect Awareness Quilt Project
was created to promote greater public awareness of Congenital Heart Defects (CHD), while honoring the strength, courage, and commitment of all those born with a CHD and their families.
The Congenital Heart Defect Awareness Quilts are a series of quilts honoring 42 individuals with CHD. The quilts are being constructed of heart blocks, with each block being dedicated to a child or adult effected by Congenital Heart Defects. To have a block dedicated and included in the CHD Awareness Quilts see our block registration page.
I had heard very little about this quilt, certainly not enough. They include any child born with a heart defect, all you have to do is request that your child's name be added. It's free, and you have the choice of making the block yourself (pattern instructions
) or, if you (like me) can't sew, they'll have someone make the block for you. You can even request a certain character or theme if you'd like. And, get this, you can even track your block's progress
after you request one!
There is strength in numbers, so they say. So if you have a child with, or lost a child to, a congenital heart defect, visit the page. Request that your child's name be added. The more blocks that are added, the more quilts there are, and the bigger the display, the harder it is to ignore.
Plus, let's face it, every parent wants the chance to brag about their children. Add their name, and thousands of people will see it.
For other ways to support the project, visit their Participation
page. There are several ways to become involved, and most of them require no money!
I don't know how long it takes to get a quilt block finished, but I'm looking forward to seeing pictures of the ones they make for Alexis and Nova. And my juices are flowing... I'm wondering if there are any CHD events soon, and if I could finagle the right person into hosting a quilt...
Another project perhaps... Another reason to be in touch with The Sanger Clinic, CVRU, Mika... Surely I can work this one out, right?
I think I have to finish my financial aid list before I start another project just yet, but I wanted to share the CHD Awareness Quilt page with all of you.
Tags: heart defects, congenital heart defects, CHD, birth defects
posted by Erin @ 9:01 PM
Well, tomorrow morning at 9am we meet with Dr. Wagstaff up near CMC. He's a clinical geneticist, and will be telling us if there were any genetic abnormalities, chromosomal additions or deletions, any as-of-yet undiagnosed syndromes that Nova suffered from. I feel fairly sure there weren't any, that all the tests will have come back negative. We already know that the DiGeorge testing was negative, and that was the most likely culprit. Had they found any sort of genetic cause for his heart defect, we'd have heard about it while he was in the hospital.
It's a moot point for me though really, with my tubes tied and all. Mostly we're following up on the off-chance that our kids would need to know about anything they found. With five kids, the chances are that I'll have a boatload of grandchildren, and before my kids go conceiving they should be aware of any possible risks. So off we go to another doctor about Nova, 46 days after his death.
He's now been gone for as long as he was hospitalized, a day longer actually.
So. Part of me needs to know what caused his heart defect. Chances are, we'll never know. That's one of the hardest things about CHDs, accepting that no one knows enough to tell me why they happen. I suppose if they were able to point out a genetic link, I'd only wonder what caused the genetic problem to happen. Human nature dictates a need to know, it's part of what separates us from animals: higher learning, a thirst for knowledge.
There will always be more WHYs
, and I don't think any of mine will be answered at tomorrow's appointment. And as much as I want to know, as much as I need a reason so I can make sense of it, I also hope, for my children and grandchildren's sake, that there are none to be found in Dr. Wagstaff's charts.
Tags: heart defects, congenital heart defects, CHD, birth defects
posted by Erin @ 12:42 PM
Sunday, May 21, 2006
Basic, but somehow little-known facts about congenital heart defects:
- Congenital Heart Defects (CHDs) are the most common form of birth defect worldwide. 87% of all birth defects are CHD, yet most parents have never even heard the words Congenital Heart Defect until their child is diagnosed with one.
- CHDs kill twice as many children as do all forms of childhood cancer combined.
- CHD research receives 1/5th the amount of funding that pediatric cancer research receives
- CHDs are the #1 cause of defect-related infant death in the US.
- 40,000 babies are born each year with a CHD, 10% of them are born with fatal defects, meaning 4000 babies a year will die from their CHD. That doesn't account for deaths due to surgical complications or infections occurring during/after open heart surgery.
- Approximately 1 in 100 babies (1%) each year are born with a CHD. The next leading defect, cerebral palsy, only affects 1 in 900 (0.1%)
- That risk increases when either parent has CHD or when another sibling was born with CHD.
- If you have had one child with congenital heart disease, the chance that another child will be born with CHD ranges from 1.5 to 5 percent, depending on the type of CHD in the first child.
- If you have had two children with CHD, then the risk increases to 5 to 10 percent, to have another child with CHD.
- If the mother has CHD, the risk for a child to be born with CHD ranges from 2.5 to 18 percent, with an average risk of 6.7 percent.
- If the father has CHD, the risk for a child to be born with CHD ranges from 1.5 to 3 percent.
- Some heart defects are considered to have autosomal-dominant inheritance; meaning that a parent with the defect has a 50 percent chance, with each pregnancy, to have a child with the same heart defect.
Congenital Heart Defects exist all around us. Chances are you've seen several (in the supermarket, at the mall) and didn't even know it. No one knows what causes CHDs, there is no known way to prevent them, and though they can in many cases be repaired, they cannot be cured. There are certain risk factors such as gestational diabetes, Rubella (during pregnancy) cocaine use, alcohol use, or the use of certain prescriptions such as acutane and anti-seizure medications, in 85 to 90 percent of the cases, however, there is no identifiable reason as to why the heart defect occurred.
Only through research can there be answers, only through funding can there be the necessary research, and only through awareness can the funding be found.
other sites I'd like to mention:
Tags: heart defects, congenital heart defects, CHD, birth defects
posted by Erin @ 2:15 PM
I've heard stories about people who suffer from manic depression. The crazy euphoric highs, the lows they can't fathom coming back from. It's caused by a chemical imbalance in the brain from what I understand, so I'm thinking you can't acquire it in response to outside stimuli, right? Well, ok, that I'm glad of, because it means I'm not clinically manic depressive, I'm just stressed out, overwhelmed, grieving, and being completely controlled by my emotions, rather than the other way around.
Normal response, yes?
Well whatever it is, I'm not liking this friggin emotional roller coaster. At All. It isn't the mood swings (ok it is) but the speed with which I swing. In 10 minutes I run the gamut from tears to giggly hysteria, and back again. I've lost my mind.
Yes. Yessss, I do know I'm being melodramatic and whiney. Humor me, I'm having a night.
The weird thing is this:
I'm ok with having a night. I used to (for many years now) fight it. Now, at least for now, I'm not liking it, but it's like, all of a sudden, I'm sort of, I don't know, giving over to it, surrendering to it? No that isn't it exactly. Maybe I'm allowing it, indulging myself.
Oh well, I'll probably feel differently about it in a few minutes anyway, and it won't matter that I did such a lousy job of expressing myself.
posted by Erin @ 2:31 AM
Friday, May 19, 2006
I have never been so happy to be wrong, (or to admit that I was wrong,) or so glad that I did something I didn't want to. I just can't believe how much better I feel now that I can be secure in the knowledge that, though they're gone, I did the right thing for my babies. Of course, now I'm crying from relief rather than regret, and I'm really not a fan of tears but these, at least, are 'good' tears. I have a new perspective on life, on the past, a much healthier one.
So, more about yesterday. Before we left Dr. Watts' office (actually we met with him in an exam room, and the whole time we waited, we listened to the baby in the next room over crying) we asked him which nurses were working in CVRU. I know that a disproportionate number of my favorites work nights, but I did ask if Candy was on. He wasn't sure, so he just called over to CVRU and checked. See, great guy that Dr. Watts. Anyway, she was on, as was Jessie and Shawn, so we ran across the breezeway and went up to say hello. It was a little strange. It wasn't a scheduled visit time, and we didn't (obviously) have a patient... We didn't know whether to ring the bell or what. Luckily, Candy came off the elevator behind us as we waited, and she just took us in. Dianne was there too. She had Nova a LOT, especially near the end.
Like I said last night, it was an emotional day, beginning to end. My nerves were raw, my temper was a little short last night. But I am so glad that I went, that I didn't decide to skip it. It was good for me. I learned something that actually, in a way, did change things for me. Part of grief is the guilt, and the doubt, and for me, regret. I really did learn not to feel guilty or responsible for the heart defects, I knew, rationally, that it was not my fault, but I did feel guilty for what they'd each gone through, regretted our decision, and the short lives they'd each had. Though I can't say that it's completely gone, yesterday was perhaps not a "healing" but it was certainly a huge step toward one.
It's funny when you really think about it, grief I mean. It's a selfish emotion. We hurt more for ourselves than anything else I think. I grieve, not so much that Nova is dead, but that he's not here. I mourn his absence from my life, and fill the void with tears. But in that pain, there is a desire to have them back. Of course I want Nova back. But now I realize that, for me to have him back, he would have had to suffer... Well, I wouldn't have wanted that anyway. Again, selfishly, I say this, I wouldn't have wanted him to experience undue pain, but more than that, I would not have had the strength to have watched him die slowly. It would have been an unbearable thing to take (emotional) responsibility for.
Why do you folks read this? I keep repeating myself, simply because I can't quite wrap words around the emotions I'm trying to express. I hope that, somehow, it comes across the way I intend, and not as though I've lost my mind! I go back and read before I post, and it all sounds like repetitious nonsense that is completely unsuccessful in its ability to convey what I'd originally wanted to say... Frustrates me to no end!
posted by Erin @ 3:16 PM
The meeting with Dr. Watts was easier, and harder, than I expected. I guess it was just different. I kind of expected him to do most of the talking, and I suppose he thought we'd be asking more questions, so getting started was a little weird. Once we started talking though, it went pretty well. I only asked 3 questions, easy ones really, but we talked with him for, I don't know exactly, about an hour I'd say. He's such a good guy. You know how you meet people, you just get a vibe? Well, he just radiates a humble sort of wholesome feel. I like him. A lot. Even more since we had some time to just talk. And just talk is what we did a lot of the time we were there.
So, what were my questions, right? Like I said, there were only 3. I asked what sort of infection was it that caused the sepsis, because at the time of his death we didn't really know if it was the fungal infection, or something else. It was the fungus. No surprise there really. I suspected as much. I didn't ask if the sudden drastic change in his condition was related to the Angiojet he'd had. I know that they said part of the reason to get rid of the blood clots was to get rid of any possible yeast colonies that might be hiding in them. My gut says there was a colony in that huge clot that was set loose into his bloodstream because of the angiojet drilling into it. Just a hunch, no medical backup there whatsoever, which is why I didn't ask. I, honestly, just don't want to know. If I'd asked and Dr. Watts had said yes, that would have started a pointless spiral of anger and self-doubt.
And while we're talking about self-doubt, my second question for him was, "How long would Nova had lived if we'd decided not to have the surgery?" This was where it got to the "harder" part of this meeting, because this was a question I'd been wanting to ask for years. I'd wondered it inside my head a thousand thousand times. But I'd never said it out loud. Saying it out loud was hard and is where the tears started.
Now let me explain that question, because it's as much about Alexis as it was about Nova. See, she only lived 12 days, and her death was directly related to the surgery, and her body's inability to readjust to the new pathway of her bloodflow. At the time of her surgery, I thought a lot about refusing the surgery, and even more when she died. I always regretted her surgery because I felt we'd have had her longer if we'd refused it.
When they handled Nova's care so much differently simply because they'd learned in the five year interim that the babies have a higher chance of survival if you wait until 3 months of age, I wondered even more about our decision with Alexis. So obviously, even though we never once considered any course of action other than the one we took with Nova, I had to ask.
His answer was not a number. He couldn't say, "Nova would have lived to be 2." What he said was, basically, that it would not have been much longer. That the way his numbers took that dip there a few weeks before the surgery indicated that he wouldn't have done well for very long. He also said, "I know what you're doing, and I don't want you to doubt yourself on that decision." He said he'd had patients who opted against the surgery. He explained that with these babies, the "blue blood" that causes the cyanosis builds up in the system, and causes the blood to thicken, which causes all sorts of other complications. That they live a life that is far from normal or comfortable, they suffer a lot in the end, and die miserable (miserable, miserable, miserable) deaths. He said that if he had to make the decision again, he'd do it again, the same as this time, and hope for fewer non-cardiac complications and infections.
That answered all my questions, removed all doubt, for both of my children's cases. Obviously, things didn't go the way we wanted with either child. That goes without saying. I wish I still had them both, I wish we'd had them longer at least, but not at their expense. I'm just not selfish enough to have ever chosen to make them suffer. I still feel like the last 6 weeks of Nova's life were wasted, lost in a drug induced stupor. I will never be "ok" with the idea that for 6 weeks and 3 days, he was not hugged or snuggled or held, but I wouldn't trade those 45 days, not if I were trading them for days full of pain, misery, or pain for him. I wouldn't wish one moment of pain on him. At least, with the way things happened, he was never hurting. Drugged, unconscious, unaware of our presence, yes, but never was he in pain.
So, thank you Dr. Watts, for putting to rest five years of doubt. It was a huge weight from my shoulders. I don't know how much 5 years of regret weighs, but I walked away from that meeting considerably lighter of spirit.
My 3rd question was completely unrelated to the care we received with either child. I wanted to know how long it had been since he'd done his first heart surgery, fifteen years.
He's gone through 20 years of schooling, and 15 years of experience. He takes each case personally, he truly cares about the kids. He goes every so often to underprivileged countries and performs surgeries (pro-bono no doubt) because, he said, "I get so much out of it." He says when he stops caring, it's time to quit. All of these things are a part of the vibe I mentioned earlier. Each component is intangible, I mean, it isn't hair color, or height, or any physical quality, but you can sense these things about him and they put you at ease, he is implicitly trustworthy, and comfortable, without any effort.
Anyway. It was hard. I cried more than I wanted to, less than I thought I might. The medical questions I had were answered amply, and laid to rest some real issues for me, and erased some major regrets. I try not to have regrets, they're typically useless and unproductive, but sometimes the big stuff manages to wrap a few fingers around my scrawny little throat and threaten to strangle me.
The aftermath has been an emotional sort of night, from one extreme to the other. I vacillated (oscillated even) between angry and weepy, and I don't envy my family's position of "my family" tonight. I didn't make it easy on them. This is another in a run of marathon length posts, for that I apologize. And I have more, but it will wait.
Sorry it took so long to let you guys know how it went. My computer wouldn't connect (highly unusual for cable internet, I'm always friggin connected damnit!) We spent several hours troubleshooting and eventually, after much too long, discovered that it was a bad wire from the router to my PC. Thankfully we had an extra, but you can blame the non-connectivity problems for the ridiculously long post. I couldn't actually post which gave me much too long to babble into MS Works.
Sorry. More later :)
posted by Erin @ 2:19 AM
Thursday, May 18, 2006
In less than 2 hours, I'll be at the Sanger Clinic, meeting with Dr. Watts, so that we can ask any questions and he can have the opportunity to explain things we most likely won't even think to ask.
I've been thinking a lot about this appointment the last couple of days. Aiden's mom suggested that I write down my questions. I haven't. Ang suggested that I take a tape recorder so I don't forget the answers. I'm not.
I feel like I need
to go to this appointment, but there is absolutely not one ounce of me that wants
to. It seems so pointless. Dr. Watts, amazing though he may be, can't answer the questions that really matter, and the questions that he can
answer make no difference in the long run, do they?
So why, with the expectations I have, do I feel such an overpowering need to go?
If this appointment had been 3 weeks ago, I'd have skipped it. I nearly called a couple of weeks ago and cancelled it... just a few days after I called to schedule it. Last night I was trying my damnedest to talk myself out of going, and couldn't do it. (Yes, that was
an interesting internal dialogue.)
Fuck, I don't know. All I know is that I'm going, that I don't believe I'll learn anything that will do me any good, and that I'll be a fucking wreck afterwards. My hands are already shaking so badly that I'm having a hard time typing.
You'd have to know Dr. Watts to understand how uncomfortable and awkward this is going to be. He's a lot like me, or at least, like the me that the public sees in real life. I don't acknowledge my feelings, I don't cry if I can help it (doubt I'll be able to help it today though) and I am no good at all at accepting condolaences or compliments. Dr. Watts is the same way. You'd think the combination would work well for us, but it doesn't really. It's just uncomfortable, with much speechless-making.
posted by Erin @ 10:06 AM
Tuesday, May 16, 2006
I haven't found much in the way of financial aid organizations in the US. Seems the best available advice I've found so far is to ask your doctor/hospital to speak with a social worker about financial aid through the hospital's own financial department. Most hospitals offer a service for under-insured patients with over due medical bills, but won't necessarily make that information readily available.
The thing I need to do to start, it seems, is compile a list of the leading hospitals in each state. Then I can call them each (haha the wonders of Time Warner's digital phone service and completely free long distance!) and get the contact information for their financial aid departments.
I don't suppose you'd each leave the name of the hospitals where your children were seen and treated? That would at least give me a place to start.Arizona
Mayo Clinic Scotsdale/Phoenix
Patient Financial Services (480) 301-7033
or toll-free (800) 603-0558Mayo Clinic Financial Statement (PDF)Florida
Mayo Clinic at Jacksonville
Patient Financial Services
4500 San Pablo Road
Jacksonville, FL 32224
St. Luke's Children's Hospital
190 E. Bannock St.
Boise, Idaho 83712Financial Services
Boise/Meridian: (208) 706-2333
Sun Valley Area: 800-244-7307Kentucky:
Kosair Childrens Hospital
231 E. Chestnut St.
Louisville KY 40202
Financial Counselors 502-629-8281 Billing & Financial InformationMichigan
C.S. Mott Children's Hospital
Guest Assistant Program (GAP Office)
Room 2B203 University Hospital
1500 East Medical Center Drive
Ann Arbor, MI 48109-0718
Mayo Clinic RochesterMayo Clinic Financial Statement form (PDF)
Patient Account Services at (507) 266-5670Missouri:
Children's Mercy Hospital
Kansas City, MO
Patient Billing Services: (816) 234-3571Financial Assistance Application
Here are a couple of additional links for residents of Kansas and Missouri.Missouri's MC+ Health Insurance ProgramKansas Health Wave Insurance ProgramNorth Carolina:
Carolina's Medical Center (Carolina's Health Care System)
1000 Blythe Boulevard
Charlotte, NC 28203Financial Counseling
Customer Service: 704-512-7000South Dakota
Sioux Valley Children's Hospital at Sioux Falls, SDChild Care Help LineWisconsin
Children's Hospital of WisconsinFinancial/Billing InformationMailing Address
Children's Hospital of Wisconsin
PO Box 1997
Milwaukee, WI 53201-1997 Street Address
Children's Hospital of Wisconsin
9000 W. Wisconsin Avenue
Wauwatosa, WI 53226
Billing Office (414) 456-4511 or 1-800-242-1649
In the meantime, I have found some general financial aid opportunities for folks in England. Nothing is CHD specific, but some would be of some help with medical expenses for families dealing with economic hardship and/or chronic medical problems for which CHDs would seem to qualify.Financial aid
These charities and organizations may be able to provide grants. You will need to contact them directly for further information.
Children's Heart Federation
Reg charity no: 800525
Helpline: 0808 808 5000
Eligibility: most services are open to all families of heart children Â they provide family support grants
The Attlee Foundation
28 Commercial Street
Eligibility: disabled and disadvantaged people of all ages and occupations on low incomes who need travel expenses for therapeutic reasons, i.e. hospital visits. Direct applications are not accepted - a sponsoring agent, for example the CAB, must be used.
The Alfred de Rothschild Charity
57 Elm Park Mansions
Eligibility: To make medical treatment more accessible, especially treatment of a special nature to persons of moderate or insufficient meansheart defects
, congenital heart defects
, birth defects
posted by Erin @ 1:27 AM
Congenital Heart Defects:
General Overview, in layman's terms.
, congenital heart defects
, birth defects
posted by Erin @ 1:24 AM
Monday, May 15, 2006
We've been lucky that, through the duration of the 4 months we had him, we never once worried about Nova's medical bills. He was on Medicaid from birth, and it covered every procedure, visit and prescription he ever needed. From Nystatin for thrush, right up to the open-heart surgery, and the gallons of high-dollar meds that kept him alive for 6 weeks. There were plenty of unmet financial obligations and hardships, but none of them were on the grand scale of his medical bills. Just gas (man, the gas!) and food and such were bad enough.
I remember when we lost Alexis, we received one bill alone that was nearly $100,000, one bill, from one doctor, for a child who only lived 12 days. Because of being on Medicaid, we don't get copies of the bills, no statements or anything regarding Nova's bills. I cannot fathom how much they must be.
Today we did receive a bill though. Or, rather, a digest of 21 bills. Seven pages which only reflected a small portion of his bills for the month of March, with a total of $30,000+ dollars. There seems to be a problem/mix-up/snafu/paperwork error that has Medicaid denying all the claims and I spent a large chunk of the day on the phone, getting the run around, and telling and retelling the story. All that's a side story, if you want to read the whole thing, I let off some steam in this rant
. But for several hours today, I thought that I would be responsible for this debt - and most likely much more that I wasn't even aware of yet. It isn't that Nova wasn't worth that a thousand times over, and God knows I'd have found a way to pay it off ('round about the time I turned 90 most likely) but the idea of it was so overwhelming that I was beside myself. To have found out that it is simply (that's a relative term) and quickly solved was such a huge relief.
My point with this post is that there are parents out there who don't
qualify for Medicaid, don't have health insurance, or have inadequate health insurance. CHDs, their repair, and the consequential related care brings on an astounding financial burden to many families. I can't imagine having to bear both the emotional and financial burdens at this point in life. It must be absolutely beyond description.
I wonder if there are organizations designed solely to offer financial aid in this case? I don't mean the type of thing that works only in one geographical area, or for only one sort of defect or disorder. I mean, is there a number, an address or website that parents of CHD kids can contact and get some sort of financial relief, regardless of their geographical location or their child's particular defect.
I mean, put it into perspective:
Approximately 1 in every 125 babies born in the United States. In 2004, there were 4.1 million
births in the US alone. That means that roughly 51,000 CHD babies were born. Even if only a small percentage of those families are un- or under- insured, that's a lot of families, and a lot of debt.
If you know of any organizations that offer financial aid, please leave a link or some contact info in my comments, I'd like to start a list of links to them for other parents. We are lucky (in this case anyway I guess) to be dirt poor and qualify for Medicaid, but I can't imagine how many people are strapped with huge hospital bills, ongoing health care bills, and ever-deepening debt because of their child's defect. I can't donate much, but I can sure try to raise awareness, and build a list of links.
posted by Erin @ 11:36 PM
Something else some of you might be interested in:congenital heart defect support
also:Our Heartsheart defects
, congenital heart defects
, birth defects
posted by Erin @ 12:54 PM
And here's another family of blogs I've found:
, and son Riley
, who has just (March 9) undergone his 3rd surgery.heart defects
, congenital heart defects
, birth defects
posted by Erin @ 3:31 AM
Tonight I found a blog about Logan, Logan was born with TGA on April 26, 2006. I hope you'll all go visit them at their blog, and offer them the support that you all so generously have offered me through this journey. Little Logan, as of last post, seemed to be doing well, getting stronger... but we all know how frightened those parents are.
If you haven't yet, please visit Ad Hoc Existence
, congenitalheart defects
, birth defects
posted by Erin @ 3:30 AM
So, like it or not, I've been labeled, via the loss of another child. After Alexis, I refused the "Angel Baby" addendum in my signatures. Now it's been pluralized, and regardless of my refusal to join the ranks of the "Mommy of Angel Babies" club, it's still how people think of me, how they refer to me in emails sometimes. Like it's a compliment. Well, here's how I see it.
I've spent 5 years, since my daughter's death, being told that I am not to blame
. But you see, that's a double edged sword. Blame and credit are synonymous, the only difference being in connotation.
I cannot deny culpability, and
take credit. To do so would make me a hypocrite.
So if I say that, for the most part at least, I have accepted that their heart defects, and their resulting deaths, are not my fault - I must also say that there's nothing for which I should take credit.
For that reason, I still refrain from being the proud bearer of the "Mother of an Angel Baby" badge in my signature.
Aside from that - I have to admit that, as comforting as it may be to some, I do not believe that my children are angels (and again, even if they are, it was not my doing...)
to be able to find some sort of solace in the image of my children playing together, keeping one another company, greeting other family members at the gates when they pass away or being cared for by family members who died in the past... But I can't. Only in my poetry do they do those things.
I am not a very religious person anyway, but that isn't how my beliefs on death or religion work. My background in religion (2 parents that were preachers) states that there were a set number of angels created, and that number never changes. I (as well as all of you I assume) was taught that in Heaven (assuming it actually exists) there is no pain or sadness.
To remember us, those who haven't died - to watch us go through the pain of grief, the difficulties of life, to witness us making poor choices and causing ourselves, and each other, pain... Those things would cause our loved ones pain and sadness wouldn't they? So, no, I don't believe that they're watching over me, guarding or protecting me.
And I sincerely hope that I'm right, because I cannot fathom making my children watch me go through this, knowing it is their deaths that cause me this pain.
I am not the mother of two angel babies.
I am a mother who, twice, has watched her child die, who has had the magic of life ripped from my arms again, who has watched two tiny entombed bodies being lowered into the ground. I am a mother who has had to learn and relearn
the devastating permanency of death. So there will never be one of those counters beneath my name that proclaims my status as mother of two children who have died. I can't find anything joyful enough or boast-worthy enough in those experiences to merit a badge of honor.
posted by Erin @ 12:52 AM
Saturday, May 13, 2006
This is the last picture taken of Nova, just hours before he died. The rest I'm posting below. Fair warning, they are after he passed away.
This last one was the picture and bear that sat in front of his casket at the funeral. The funeral pictures aren't on the digital, since the camera stopped working after he died. Those pics are on film and aren't developed yet.
posted by Erin @ 11:25 PM
Friday, May 12, 2006
You were promise, curving
like the round of my belly
as light through crystal,
yellow to green to blue.
You were my secret, spilling
like sand from the bend of my elbow
into the way my hair tickled your face
as I lifted you.
Or was it you that lifted me?
You were hope,
now more than ever beyond grasp,
with a smile too wise to acknowledge death
and recognition in your eyes.
Yes, you were promise
like dew in the boughs of the willow
curving always away.
posted by Erin @ 10:48 PM
Wednesday, May 10, 2006
Amazing, special, resilient, inspirational, impressive, strong, brave, courageous. . .
Though you've all used these words to describe me, I am none of them, because you don't see me after the house is quiet, and everyone is asleep. You don't see me when I'm home alone, or when I'm in the shower, or when I come apart at the seams over a scene in LOST, or the lyrics of a song, or a diaper commercial, or the tiny size 1 diaper I find on my desk, or the swing/bouncy seat/car seat when I see them, or those blog posts that rip my guts out. You don't see the times I grit my teeth against the jealousy and anger, or the times I simultaneously wish I had a gun, and thank my lucky stars that I don't.
My posts/poems have been called "beautifully painful" and "brutally honest" "helpful." They are what they are, and only by the nature of my experience, and because I post only when I'm having a 'good' moment (or at the very least, a 'not so bad' moment) and not when I'm locked in the bathroom dying - because at those times I'm unable to post. Simple as that.
I wish you all saw the laundry piled in the washroom floor, the loads of paperwork and old mail on my desk, the dust so thick you can draw pictures in it on the furniture. You don't know that I've only cooked dinner for my family once or twice in the last month, or that most days I can't remember which kid has what after-school activity or field trip. I haven't told you that I've slept on the couch most nights since he went into the hospital, and every night since he died. I haven't told you that I've become clingy and dependent, and find myself afraid, every day, that I'm incapable of doing any given task. I question my self at all times, I hate for my husband to be anywhere other than at my side. You probably don't understand that the reason I continue to post here is that I can't bear to let go.
I thank you all, for your support, for your sympathy and caring, and for a sincerely dedicated readership, and friendship. I hope that my words are of some use to you, but don't admire me too much, the truth is, I don't show you the moments that may very well leave you with a very different impression of me.
posted by Erin @ 10:51 PM
Monday, May 08, 2006
I don't really know what to say here anymore. It's a frustrating feeling. I'm pre-occupied with thoughts of Nova, and can't find words to express the meaning of the thoughts. I claim to be a writer, words are my tools, but they fail me, or I fail them, one or the other.
It's been over a month now, and I think it's gotten harder rather than easier. I don't have so many things to distract myself with. When Alexis died, it was such a sudden thing, from birth to death. Coming to terms with her death was faster, more of a punch in the gut than it's been with Nova. This, this is like drowning. More painful, slower. . . And it's barely begun.
The other day someone said that they thought that Nova being my second child to die must make the process easier. This isn't like riding a bicycle, this isn't something that you get better at with practice. I think I, too, thought it would be, but I was wrong.
posted by Erin @ 10:30 PM
Saturday, May 06, 2006
When Nova was in the hospital, many other children came through CVRU - most of them moved on to NICU or PICU and went home. We also saw more than one that didn't make it home. Then there was the baby that was in the bed next to Nova. I emailed his mother a few weeks ago, but she never replied, and I was concerned about what might have happened.
Yesterday I got an email from her - he's still
in CVRU, been there for 8 weeks now - that's about 2 weeks longer than Nova, and he'll be there weeks more. He's had a lot of problems, unusual complications, and now he has MERSA
I'm really worried about this little guy. I don't know that his parents would be OK with me giving out a lot of details, but I'd love it if you'd all keep this family in your thoughts and prayers.
I hear that CVRU had a rough week in general last week, so a few prayers for them would be appreciated too.
posted by Erin @ 9:22 PM
Friday, May 05, 2006
I still get email from some of the nurses in CVRU sometimes. That in itself is awesome, isn't it? I mean, they have new patients, new family members coming in with questions and needs, not to mention their real lives, and still they take time to email me.
They still come here too, to the blog. It seems my daily ramblings through our experience are of some practical use other than having saved my sanity (OK OK so my sanity is actually still in question...) I guess they don't get to see things from the patient's standpoint very often.
Anyway, this post is actually just for me to send a hello, a hug, and a huge
thank you to all the nurses and doctors who come here, for all they did, and continue to do.
I hope this blog helps you understand what a profound impact you have on so many people's lives. Your kindness, consideration, and compassion will never be forgotten.
posted by Erin @ 1:30 AM
Thursday, May 04, 2006
McEwen's Funeral Home really provides very personal service, and the people there are so personable. Today's mail included a letter from them - a small card actually, and inside, as part of the card itself, is a copy of Nova's obituary. I had forgotten that they do that. I have one of Alexis' obituary from them too. A matching pair. I need to go and actually buy the book to put together his memory book. Somewhere to assemble the little bits, his pictures, the poems, his foot and hand prints, a lock of hair (which isn't a lock at all, his hair was so short, it's just a little pile stuck to a piece of tape.)
There are things that need to be done, and I'm just so far from ready to do them all. I can't even look at his pictures, any of them, but especially the pre-surgery ones. I just can't.
posted by Erin @ 2:17 PM
Wednesday, May 03, 2006
Standing at the Seashorefeeling the empty
My head is concrete with the knowledge:
my son is gone -
a long six feet out of reach.
But inside my chest,
it's like standing in the ocean.
When I'm still,
the waves steal the sand
and force me to shuffle,
regain my balance,
lose him all over again.
when I have sunk into disremembrance,
he's still here, and my breath catches
somewhere around my belly button
and waits to meet my heart
as it falls backwards into realization.
He is in everything,
everything but his crib and my arms,
and they ache
with the acceptance of
beauty and emptiness.
I close my eyes, and count
the rises of his chest, forgetting
he's gone, remembering
the warmth that reality stole.
All that's left isthe empty
, Congenital Heart Defects
posted by Erin @ 12:52 PM
Tuesday, May 02, 2006
I guess it's time to start thinking about packing up Nova's things, not sure I'm "there" yet though. I haven't touched them since he went into the hospital. His crib still stands next to my bed, all of his clothes are still folded, right where they were 2 1/2 months ago. The diaper bag is still in the livingroom, his toys in his crib. The swing and bouncy seat (and car seat too) are still right where they go. My niece found out she was pregnant a month or 2 ago, before Nova died. I told her that she could have his things when he outgrew them. Now the idea of giving them away feels like betraying his memory. I know, rationally, that it's silly to feel that way, but it doesn't change the fact that it's how I feel. Part of it is Alexis residue... We sold her crib less than a month after she died, and I wasn't ready to get rid of it. But the truth is, as long as that crib is set up beside our bed, I can't sleep in there. I haven't spent one night in my bed in, well, since even before he died. I can't make myself lay there staring through the empty slats. The problem is that he spent a lot of time in our bed with us - it's a water bed, and he loved that it was all warm and snuggly, and I loved having him there beside me, listening to him breathe, feeling his chest rise and fall. It's hard to lay in it without him.
When I finally called to make that appointment with Dr. Watts yesterday, I didn't know exactly how to explain to her what kind of appointment I needed. She had an idea, since Dr. Watts, as a surgeon, doesn't see a lot of his patients in the office. It was all so uncomfortable for both of us. It's called a deceased something-or-other. My brain got stuck on the word deceased and I missed the rest... You know, he'd be 5 months old today.
When we were in New York, we went to Scott's Aunt Rose's birthday party. It was her 50th and it was a pretty big affair. Of course, somewhere along the way, she opened gifts, and then we sang Happy Birthday and she blew out the candles. At first Terra decided that it was her
birthday, but when we started singing, she apparently decided it was Nova's birthday, and when we all sang "Happy birthday to youuuuu!" she
said "Happy birthday to NOVA!!!!!" But whenever she gets on the swing, she asks me to push her, "Higher higher!! Up up da sky where Nova lives!!!" She loved him so much... She doesn't really understand, not that I expect her to really. How can I expect her to, when I still don't?
posted by Erin @ 8:52 AM
Monday, May 01, 2006
My head is heavy with the concrete knowledge that my son is gone, a long six feet out of reach, but in my chest, it's like standing at the seashore. If I'm very still, the waves sneak in and steal the sand from beneath my feet till I have to shuffle and catch my balance, remind myself, lose him all over again.
His picture sits on the end table behind me. 8x10, smiling, large as life and smelling like only a fresh-out-of-the-bath baby can, and sometimes, when I'm not thinking and turn too fast, while my feet are sinking into the void of diremembrance, it looks 3-D, like he's really there, and my breath catches somewhere around my belly button and waits to meet my heart as it falls backwards into realization.
He is in everything, everything but his crib and my arms, and they both ache like a warm spring breeze in the mimosa, all acceptance of beauty and emptiness, where the cicadas have forgotten the words. Only the damselflies know, and it's too dry here for them, so far from the pond.
I close my eyes, unsure whether I'm trying to remember or trying to forget, so I do both. Forgetting that he's gone and remembering the presence of his warmth beside me, counting the rises of his chest by the light of a distant moon that raises the tide that washes away the solidity from beneath my feet.
posted by Erin @ 10:44 PM
Our appointment with Dr. Watts is set for May 18th at 11:30. I don't know if I'm strong enough to go.
posted by Erin @ 2:54 PM