Thursday, June 29, 2006

I've been watching Jake Rodgers, another heart baby with a carepage(jakerodgersjourney.) The family just updated to announce that Jake passed away at 6:30.
I'll be keeping both his parents, and Corbin's, in my thoughts tonight. The two families were at the same hospital and knew one another. I hope that they find some comfort in an ongoing friendship, and the obvious depth of their faith.

posted by Erin @ 10:38 PM   3 comments

I've been fearfully, yet hopefully, following the story of Corbin, and I know many of you have as well, and will be just as sad as I am to know that Corbin passed away over night.

I'm at a loss for words.

posted by Erin @ 9:53 AM   0 comments

Wednesday, June 28, 2006

I got an email today through one of the grief support groups I belong to. It was from a woman who lost her son on May 20th. The message was painful and angry, and reminded me very much of me after Alexis died. The sarcasm, the vehemence, the sense of shock and outrage. I remember all of it so clearly. I remember cussing the neighbor's preacher and chasing him out of my yard when he came with his wife to offer their sympathies. While Alexis was in the hospital, there were hundreds of people praying for her, several churches, prayer groups and online prayer chains. And still, she was dead, so when that preacher said he'd pray for me, I was so pissed off. I remember just screaming at him and telling him not to do me any effing favors.

She died 3 weeks before the 9/11 attacks. Remember the way they showed the people flinging themselves out of the windows? I envied them. Remember how they would show the family members in tears, talking about the family members that were dead or missing? I was so angry at them - I remember yelling at the television, asking them what the hell they were talking about, that at least their family members had come home, grown up: lived. All I kept thinking was 'how dare they think their pain even came close to what I felt!' As if the whole thing was intended as a personal affront, like it was some sort of competition, in which I had proclaimed myself the winner, no matter what.

It was after Terra was born before 9/11 sunk in for me, and I sat here a few months before Terra was born, reading one of the memorial books that came out about it, and read, and cried and realized what a huge loss, what an astounding mind-blowing loss of life occurred that day, and what the victims and their families must have been going through back then. I felt so badly for saying and thinking and feeling the things I did when it happened!

I had parents try to tell me about their children who'd died, talked to one girl whose brother had died of a CHD years back. My eyes would glaze over and I'd sit there nodding at the appropriate times, thinking, "So what?! So friggin' what? This is about me not about something you dealt with at some time in the past!" I didn't care, I was just too wrapped up in my grief to even consider that anyone else could possibly understand. That's pretty much where I stayed for years. So vehemently, hatefully, sarcastically, angry.

So I tried to reply to her as if I'd been replying to myself 5 years ago. I wanted to say it in a way that maybe she could hear it. I don't think I did a very good job. I wanted to say something that made her understand that she's not the only one who felt it, that "she's not alone" but the only thing that ever did that for me was for someone to listen and let me rant... In real life, you can sit on the couch with someone and nod and hug and hold their hand, and never say a word, but still be supportive. That's impossible in an online situation. You have to say something in order to validate the fact that they posted.

So, I probably said all the wrong things, but I had to say something. I had to reach out to her somehow. I sincerely hope that she feels the intent of my message, but if she's anything like I was 5 years ago, she's cussing the screen right about now. And that's ok too I guess, I mean, I "get" that.

So what am I trying to say anyway? I just wish I were closer geographically to her. I'd make some coffee, sit on her couch, and just listen, without having to insert any of my own experiences into the conversation.

I'd just listen, because it's probably what she needs most right now. My heart aches for her, and I wish so badly that there was something I could do for her to help.

posted by Erin @ 1:05 PM   1 comments

Tuesday, June 27, 2006

Not much to add lately. No new donations to the Walk, so there's nothing to update there. Guess this is what you call "hitting a plateau" eh? I went yesterday morning (at 8am, still crosseyed and 1/2 asleep) to meet with the AHA representative. She gave us some pointers and some posters to hang around to help us raise more funds. She gave us a prize for raising at least $300 on the website. It was a CD case, pretty cool, even though we'll never use it. Our CDs never end up getting put away. I find them all over. Anyway, I'm hoping that we can get the posters up and get things going again.

While we were with her, she told us that she uses my donations page as an example when she meets with Team Captains to teach them how to personalize and use the website. So lots of people are getting to see his beautiful little face, and hear some about his story. Very cool, makes me smile.

I don't remember if I posted about it yet, but I heard from one of Nova's nurses the other day. Seems I was misinformed about the CVRU staff having a team in the walk. She says they want to participate with our team, but haven't decided exactly how they're going to do it yet. They discuss it at their weekly staff meetings, and they all call it "The Nova Walk."

Nine days short of three months since he died, and his name is still floating around CVRU, his page is being used as an example for hundreds of people through the AHA, people are still being touched by him. He continues to change the world, on person at a time. He keeps finding people to work through in order to fulfill his purpose in life. I can't wait to see the final donations total, and imagine all the babies and children who will recieve the benefits of the funding and awareness that his story has inspired and made possible.

These are the things I think of on the bad days that are so hard to get through. My son may be gone, but his name, and his legacy, live on and that means a lot to me. That's exactly what motivated me to get involved in this heart walk in the first place, and why I'm so committed to meeting my ever rising goal. It's why it touches me so deeply when a donation comes in, and why I take it so personally when they don't.

So, on non-fundraising matters...
I've been checking on Logan. Seems like he's doing pretty well, which I'm really glad to hear. They've been in my thoughts all day. Each of you with Heart Babies are whenever your child is going through anything. Sometimes I just suck at saying anything. Sometimes I'm afraid to say any thing for fear of saying the wrong thing. I worry that my comments are colored by my own experience, and that I'll inadvertantly say something horrible. I hope if I ever do, that you'll forgive me!

I've added another list of links in the sidebar called "Forever Young. It's links to memorial sites for CHD babies that have passed away. I felt like it was important to add them, so that grieving parents that found their way here could read those stories and understand that there are others who are dealing with the same experiences and emotions as they are.

posted by Erin @ 10:45 PM   0 comments

Saturday, June 24, 2006

You guys remember me talking about Luke? The little boy who was born with HLHS who was in CVRU with Nova? He was such a cutie, and his parents were great.

Well, I had emailed Luke's mom several times, asking how he was and such, but usually didn't get a reply. I had hoped that it was because they were too busy to bother with email much, and not because anything had gone wrong. Well, I just got an email from Luke's mom, and he's doing great. He's gained 3 pounds since CVRU, he's home and has been coming off of the special formula and going back on breastmilk. I was so thrilled to hear how well he's doing!

Unfortunately, Luke's dad had injured his back and had to have back surgery and now has what they call "foot drop" which means his one leg is numb from the knee down. Luke's mom was nursing her husband back to health, caring for their other child, and dealing with Luke's OHS and recovery, so when they put him on the formula, she decided to stop pumping, only so many hours and so much energy in a person per day, know what I mean? 6 weeks later, she's trying to get her milk supply back.

I told her I'd be keeping her in my thoughts with that - and with Luke's continued improvement, and her husband's foot/leg numbness... she's dealing with a heck of a lot right now, y'all mind helping her out by adding your thoughts and prayers?

posted by Erin @ 10:48 PM   3 comments

Friday, June 23, 2006

Thank you Sarah, Eric and Evan for the donation!

posted by Erin @ 11:30 AM   1 comments

Thursday, June 22, 2006

I spent some time going through Nova's things tonight. His clothes and blankets and stuff. I'm keeping everything that was with him at the hospital, and a few outfits, and the rest is packed up. I guess I'll sell of it that and donate it. I got the crib partially disassembled when I hit overload and just quit.

You realize he spent nearly half of his life in the hospital? The first 2 weeks and the last 6. 58 days of the 125 he lived. He never even outgrew the size 0-3 sleepers. He never had a pair of shoes on his feet, they were too big. I have 2 bottles of baby powder that I never opened.

I'm already forgetting what he looked like and I can't remember the sound of his cry. I'm losing him all over again.

posted by Erin @ 12:48 AM   4 comments

Wednesday, June 21, 2006

Logan is on his way to St Louis, most likely headed into surgery tomorrow. Keep him and his parents in your thoughts. They've been facing serious decisions, and the stress and fear we all know too well.

posted by Erin @ 11:22 PM   0 comments

Monday, June 19, 2006

I've been following the story of a boy named Corbin who has been in the hospital following his Fontan on April 13th. I don't know the family at all, I've never spoken to any of them butI have been very concerned about him, because so many of his after surgery complications have sounded familiar, and realistically speaking, the longer the hospital stay, the more difficult things tend to become. He's had his ups and downs, but last week he seemed to be doing very well. Yesterday the news was not so good, they're even discussing undoing what was done to repair his heart because his pressures are too high and to be honest, today I'm afraid for him. He has a carepage, but you have to sign up to be able to read it, it's free if you'd like to read his whole story. Anyway, all of your thoughts and prayers and well-wishes sure couldn't do any damage eh?

posted by Erin @ 9:45 PM   4 comments

Father's Day is done and I'm glad. Men handle things better than women I think. Well, they handle things in a less dramatic way anyway. I handled Mother's Day poorly, me being female and Mother's Day so soon after his death, well... I didn't do nearly as well as Scotty did today. Of course, he didn't make barbequed ribs or marble cake for me...

The donations total, as you can see up there, is at $1545... $1575 for the team. That stupid refrigerator finally sold today. Yes, I've had it sitting in my yard plugged in and running for a week. I got $50 for it, and I donated it to the Heart Walk. I also got another $25 donation this morning, only $455.00 to go to meet the revised goal. Looks like I'll have to raise it again before long.

I still have a microwave to sell, I think I'll put it on the Swap Shop and the end tables too, though I all but give up on getting rid of those end tables. I doubt I could bribe anyone into taking them, they're right ugly. They're the epitomy of 'Country' ... heavy as hell, sturdy enough to hold the truck up while you change the tire, - light pine, 2x4 construction, not hand built, but they could almost pass for it. If I say "chunky" does that give you an idea? Who knows maybe someone will want them.

I thought for a minute that I might put a link up for the tshirts I've designed too, let folks order them and put the profit to the Walk, but I can't decide wheter to or not. I'd have to redesign the shirt (as it is right now, it's sort of half-finished because none of the other CHD parents have joined yet, so I haven't been able to add the babies/children's names like I'd originally planned.) Plus, I can't decide whether it would be a waste of a large amount of money... I mean, if someone is willing to part with $25, would it be better to have a $25 donation, or to have a $5 donation, and someone wearing the tshirt out there, raising awareness? Would the shirt actually get worn often enough to do any good? Know what I mean?

I finally have that meeting set up with the AHA Rep. We meet at 8am Monday morning. Her emails have been pretty funny, I think we'll hit it off just great. I still have no idea what she has to offer in the way of information, but hey, I get to go out for coffee without the kids Monday morning! Wooo Hooo!

posted by Erin @ 4:03 PM   1 comments

Sunday, June 18, 2006

You are not alone.

People have said it to me, I've heard/read when other people have said it to other people, I've said it to other people. And damn it, it's true... in an abstract sort of way anyway. After Alexis died, I was absolutely convinced that I was totally and completely alone. Since Nova I've realized, that in practical terms anyway, I'm not, there are plenty of people feeling the same things I do, posing the same questions during their own little internal dialogue with the powers that be.

But when it comes down to it, each of us is, more often than not, personally alone with our pain. We aren't lucky enough to have a constant companion at our side, dealing with the exact same pain at the exact same time we are. And let's be honest here, wouldn't it be horrible if we did have such a person!?

See, the hardest part of grieving sometimes is the sense of isolation, and yet, for me personally, sometimes I'm a selfish ass, and I curl up on the couch with my grief, hold on to it like a kid with their favorite blanket, and hoard it all to myself. It's all there is left some days: the pain and the loss and the utter senselessness of it all. It is mine in a way that Nova no longer is, and I know that it will always be there, and I don't have to share it if I damn well don't want to.

The flip side of that, however, is that sometimes, I want to pass it out like candy I've eaten too much of. It begins to sour on my stomach a little and I want to get rid of it. Sometimes, I just want it to be done and over with. So I'm selfish and I'm fickle, and what I want and need changes with the minute. One instant I want everyone to leave me alone and the next, I'm in tears wondering why no one has asked me if I'm ok.

It's "normal" (whatever that means) and I know it, but it's still frustrating. I'm too analytical for my own good sometimes is all. The rational logical realist in me hates it when it sees the over-riding rest of me being an emotional mess, expecting people to read my mind, to swarm and/or disperse depending on my latest whim.

You all want to know the impetus for this post? It's because I feel I owe you an apology. See, from 5pm yesterday afternoon until 5:30 this afternoon, my stat counter registered no visitors. There was a big fat zero in the total visitors column, for over 24 hours. I spent a good part of that time feeling dejected, and it hurt my feelings to no end to think that Nova's blog had gone completely unread for more than a day. I went to make dinner around 3:30... Barbequed pork ribs, followed by a home made marble cake... It is Father's Day after all, and I had a husband to pamper. But in the back of my mind, I was feeling abandoned, and frankly, a little jealous.

So eventually dinner was finished and cleared away, and I came back to check my email and piddle a bit, but by that point I was obsessing about my stats, so I head over to check them. Lo and behold, all of a sudden there are visits going all the way back to yesterday afternoon, with no unusually long periods without visits - meaning that my stat counter had gone nutty, and I'd gone right along with it. I had assumed that the counter was working properly because it was logging visits to my other blog at a normal rate. Little did I know, it too was missing about half the hits that were actually being made.

So, I'm sorry. I'm a cad. You've all shown me, time and time again, that you are out there, reading and caring. I should have known to distrust technology before doubting any of you. Feel free to throw rotten tomatoes, or leave nasty comments in the reply box, I deserve it for being such a selfish twit. I am hanging my head in shame, quite literally.

posted by Erin @ 4:32 PM   5 comments

Friday, June 16, 2006

I haven't been able to get a hold of the woman at the local chapter of the AHA that called last Friday, despite calling her on a daily basis. Seems her job is to go out and meet with participants, or, meet with someone anyway, and she's never actually in the office.

This morning I received an email from her. Professional, but sweet. She's obviously read Nova's story to some degree. Anyway, I've emailed her back, so there's finally been "contact!"

I still don't know if/when we'll be meeting, but if she can offer extra help or advice on how to raise more funds (considering that all the other "successful" teams have company sponsors, and I'm up there with them) than I'll welcome the help.

Did I ever say that I did eventually actually send that mail out to Dr. Watts? It went out yesterday. I'm still nervous and feeling funny about doing it, but I keep reminding myself that the worst that can happen is nothing. Except that he might think I'm a total cad for asking of course... I'll let you guys know if/what/when he donates. If he does, I will be extremely happy. Having his support, even if he only donates $5, will be a huge morale booster, and a definite kick in the butt to do more and better things. I love him... Have I said how much I love him? haha. Yeah, I thought so. The Dr. Watts Shrine of Sainthood is nearly complete, services will be held weekly... No not really, I'm kidding, but just barely!

We recieved another donation from one of Scott's customers yesterday. I love that they're being supportive of him. I knew they would. They're good people, and Scott's lucky to have customers like them.

Can I admit something here? I NEVER took part in fundraisers, even in school (remember the candy sales? UGH!) I never participated because I thought I sucked at it. Back then I did, I was painfully shy and insecure. Now, well, I'm grown up, twice transformed, and a mother on a mission. I've surprised myself, people have surprised me... as a friend of mine said, you've all reaffirmed my faith in humanity, so thanks for that. I just hope I can do your generosity justice and continue to keep the momentum in Nova's name.

I never dreamed his tiny little arms would ever be able to stretch across the country and touch so many people. I'm so proud. Not of myself, I'm just a... well, as much as I hate to put it this way, I'm just a tool. I'm proud of him, and of people who are moved by him and his story.

posted by Erin @ 1:15 PM   0 comments

Wednesday, June 14, 2006

Below Morning's Edge

The cannas have begun to show,
a paradox of petaled sunrise
risen atop stoic stalks

leaves held together, as always,
slipped inside one another like
pages of poetry - twisted,
hidden in the dark crescent
below morning's edge.

For long months of Carolina summer
they stand proud, May through September.
I wonder, come the third Thursday
if the thanks they give is for the fall,
for the chance, at last, to let the sun set.

Are they glad to loose their curled secrets,
to lay them down and sleep?

posted by Erin @ 8:27 PM   1 comments

2 1/2 months, and I think it's harder now than it was in the beginning. At first, you're busy with funeral preparations and the inevitable financial issues, for a while you're numb, for a while you're in a state of denial, or at least, disbelief. Eventually, you run out of distractions and run face-first into reality. I cry more as time goes on, rather than less. It doesn't make sense, and yet it does.

His things are gone, and like I said, the empty places where they used to sit just serve as constant reminders. I have several pregnant friends and family members that remind me, a couple of friends with babies very very close to the age Nova would be if he'd survived. All just painful markers that make me face the finality of death.

I'm finding the anger, the frustration, railing at the unfairness. Damn it, wasn't losing one child punishment enough? Wasn't one tiny ivory casket sufficient to repay whatever past wrong I've done or prove that I'm a survivor, or to turn me into some tool for the greater good? (I don't want to be a tool for anyone, I want to be Nova's mother...) What more am I supposed to do, how much more will I lose? And that's the thing you see. With Nova, I was, at times, so sure he would make it because, surely, it just couldn't happen twice. Only it did happen again, he's dead, he's gone. And some part of me has reached a point that I cannot be comfortable in the idea that now everything will be ok, that now I've suffered enough. So sometimes I wonder what's next. I don't trust the universe anymore. And that pisses me off.

So many people live their lives blissfully ignorant of reality. They suffer from it-can't-happen-to-me syndrome. Hell, I did too. Twice.

Obviously, I'm having a pissy day, a feel sorry for myself day, a life sucks day. It doesn't matter, won't change a thing. Nothing will. And that, too, pisses me off.

posted by Erin @ 4:01 PM   2 comments

I received an email through one of my CHD grief support groups this morning. One of the members lost their son in March, and has started Bubba's Bears. Bubba's Bears has attained some news attention here. It seems most people who lose children to CHD tend to feel led to found a charity, raise funds and awareness, create a community of support for other CHD families. Like the story says, "Tiny heart, huge spirit..." or maybe even Broken heart, huge spirit.

Anyway, I'm glad to see their efforts getting some attention. Some of the information in the story regarding CHD are a little misleading (like the statistics for ToF... it makes it seem that CHDs are much rarer than they really are) or downright wrong (We all know that CHDs are more and more likely to be detected in utero) which upsets me, but maybe it's worth it to get attention directed at CHD?

Anyway, have a look, Bubba's Bears might just be something you could make use of. They're cute, and the mission behind it is as pure as it gets. And remember, their son Alexander only just passed away in March, so they're really accomplishing a lot to be so soon.

posted by Erin @ 1:56 PM   0 comments

Sunday, June 11, 2006

Picnic With My Youth

The forest has become a graveyard
and I've lost myself
in the umber eyes of a hungry doe.
Her timid nibble at my hostas
makes me envy their bells against her lips.

I spread my skirt,
white on the ground around my knees -
a new-moon picnic in ivory
at your grave side.

Dew-silvered spider strands dance
across your name
where wasted dandelion seeds sway,
stuck like an unwanted melody
in the mind of the maker.

And there,
in the darkness I reach for you
and sing you to sleep.

, , , , , ,

posted by Erin @ 11:21 AM   0 comments

Saturday, June 10, 2006

I thought I was going to be ok with it. Mostly, I am. But my niece stopped by to show me all the things (little clothes and stuff) she'd bought for her son. It's hard to look at those things. Especially when giving away all the things your son ever had. You know how it is, you see those tiny little clothes and get that "awww" feeling and picture the baby in it... Not only did it bring back memories of Nova, and the realization (all over again) that I'll never see him in any new little outfits, but it also reminded me that I'll never have any more children to feel that way over. I'm not insane enough to actually want more children, realistically. There is too much chance of another CHD, but there is a certain sad finality involved with the knowledge that my tubes are tied and I can not have another baby...

I've had seven children. Sometimes, looking back, it seems like I've been pregnant my whole life. Having babies is what I've always done. Mothering an infant was a constant for me. And they were things I loved doing (Not that I was ever big on the actual fat-waddley-pregnant bit) but will never do again. Those things are of the past. And that makes me sad, it makes me empty. It is something else that Congenital Heart Defects have stolen from me.

posted by Erin @ 4:04 PM   0 comments

It's done. Well, at least it's partially done. The Johnny-Jumper, the carseat and both bases, the bouncy seat, the portable swing, the baby tub, they're gone. I've still got the clothes to sort through, the crib to dismantle, but the majority of Nova's things have been given to my niece. I had told myself I was going to do it this weekend, but in the back of my mind I'd pretty well decided that I wouldn't actually do it. But she (and her boyfriend's grandmother) showed up today (unannounced, grrrr!) and I just gathered it all while she was here, and told her just to take it, while I wasn't falling apart about it (and while I had an audience, in front of which I won't cry...)

Now to get myself in there to do the rest.

There is presently a fridge, a microwave and a pair of long-forgotten end tables in my yard for sale. All the money raised will go to the Heart Walk. I'm straining my brain to think of other things I could sell. Had I not already promised the baby things to my niece, I'd have sold them for the Heart Walk too. I think it would have made a real statement.

Did anyone else watch Chicago Hope at 3am this morning? Yes, well, now you know the stimulus for last night's crying jag. I'm going to have to stop watching TV altogether.

I got a call yesterday (one I didn't know I'd received, and only got the message for this morning) from a woman at the Charlotte office of The American Heart Association. She wants to meet with me. I don't know if all participants get this call, or if it's thanks to the generosity of all of you bringing my name to the Top Fundraisers list. Somehow I think it's unusual for one person to generate $1000 in donations in a 2 week time frame, and that most likely caught someone's attention. I'll call her Monday when the office re-opens and set up a meeting. I'll let you guys know if it's routine, or if you should all take credit for the meeting. I really believe it's because of all of you, so thanks for that. She said she had some "materials" to enhance my fundraising endeavor, so I'm looking forward to seeing what that might include!

Last night, I emailed that local radio station and made an inquiry about advertising. No word yet. I also emailed a local christian radio station, no reply on that either. A couple of nights ago though, I got an email from a girl named Kirsty, administrator of a web forum called Mummybrain. She said that there were a lot of fun forums there, and that there was also one dedicated to parents who'd lost babies, that perhaps I'd find it helpful. I thought maybe I would too, so I joined. This morning I got another email, from a member (or former member? I don't know.) saying that this Kirsty was a backstabber and blah blah blah. I don't have time for the petty shit in my life right now, I'm certainly in no mood for the politics of a board I've barely even looked at. Obviously there's some kind of shit going on there, so I posted and emailed requesting that my membership be cancelled and my profile removed. Screw that immature highschool crap. No thank you very much.

Now, someone needs to buy my stuff! But we put it out late, and it's really hot out (nearly 95) so maybe we'll do better in the morning. We shall see... but I'm not very good at patience.

posted by Erin @ 3:52 PM   1 comments

Friday, June 09, 2006

This is Daniel. He's the little guy that was in surgery the day I went to the hospital and sat with those parents, Daniel's parents. I'd never even seen him until she sent me a link to his new page this morning. I wanted to share it with all of you. He's acutie, and did remarkable well with his one and a half repair. He was in the hospital 6 (or was it 7?) days, and according to his mom, she can't keep him still now that he's at home. I'm in awe over his strength and resilience!

posted by Erin @ 11:20 PM   1 comments

Thanks to Eve's fella Roy donating last night/this morning, I've met the $1000 goal, so I've set my sights on another $1000, and raised my personal goal to $2000, and the team goal to $3000. My hubby and kids better get to work on that other grand!

Anyway, thank you Roy! He doesn't (that I know of) have a blog, so I'm adding a link to this, which has a picture of him.

So here we start round two of the fundraising! Let's see how long it takes to do it again. If I get another $1000 in the next two weeks, the way the first $1000 came in, it'll blow my mind all over again! As it is, LOOK! I'm on the top fundraisers list, at position #4 Thomas O'Connor is in 3rd spot with $1,025. John Rohr has $1,105 in 2nd place, and Pam Cook is in first with $1,600. I'm just $25 behind #3! Who's willing to donate $26 and put me ahead of Thomas O'connor(us, actually... US, me, Scotty, the kids, and all of you who are donating) in the #3 spot?

posted by Erin @ 11:33 AM   0 comments

Thursday, June 08, 2006

When I started this blog, it was to keep track of all the things we experienced during the pregnancy and early period of Nova's life. They were things that I have forgotten with Alexis, and I didn't want to forget with Nova. I started this with the intention of looking back on it, Nova on my knee, in order to tell him about it when he got older, and for us to have a detailed list of diagnoses, medications, and procedures - we assumed there would be things that we recorded here that we'd need to know for his future treatments, and I've learned not to depend on my memory.

When Nova died, I continued blogging partially because this was his blog, and as such, it was a way to hold on to him, because I didn't want to let go... I couldn't bear it.

As I began to deal with his death, to accept it, and begin to mourn, my motivation, again, shifted. I continued to blog because I remember how isolated I was with my grief for Alexis. The grief and mourning I experienced with her death was the messiest most disfunctional period of my life. Every thing and everyone I talked to and dealt with made me feel wrong. I also assumed that everyone grieved that way, and that I would do it that way again as well. I didn't want to be alone with it again, and I thought if I put it here, all of the emotional chaos and confusion and anger and despair - and just one other mother in the middle of that came here and read it and felt less alone, then it was worth it to have helped that one person. And so I kept pouring myself out here, as much for that one imaginary parent as for my own release. I hoped that it would help me feel more connected somehow, and I hoped that it would do the same for someone else.

I'd be lying if I said there wasn't still an element of each still in my motivation for blogging here. I do want to record all of it, his life, his death, my grief, so I can look back on it when I'm less immersed in it. I do still want to hold on to him, because part of me still cannot accept that he's really just gone. I do keep writing because I need to release it, and need desperately to know that others are reading and care. And I do still hope that it benefits even one other mother.

I've gotten a lot of compliments about how "strong" or "inspirational" I am. I have resisted those sentiments. I've said that I don't see them in myself. I have never been very good at accepting compliments anyway, but I just don't see those things in myself. I still don't, but it's caused me to think a lot about it, to re-evaluate myself and my experiences, and my reactions. I have had to admit to myself that from out there, just reading these entries - without the benefit of being inside my head when I start typing, I can understand why those comments would be so abundant. Truth is, I may very well feel the same way, if I were one of you reading all of this.

The thing is, when I was grieving Alexis, I needed to read about the parents who, like me, couldn't go on. I didn't go one for a good year or more. I couldn't have accepted that someone who'd lost a child could somehow be "strong and inspirational" right after their child's death. I don't want to be the story that makes some other mother feel wrong or dysfunctional or isolated.

The truth is, I am still completely lost, I still wake up feeling like I can't breathe. I still have a hard time seeing other babies, the word Nova makes my throat close up (I thought I'd suffocate when that show Nova came on the discovery channel the other night.) I'm not always convinced that I'm going to survive, and not always convinced that I really want to. I've gone through twice as many pairs of disposable contacts as usual, because of protein deposits from crying. I fell apart yesterday because I saw one of his bottles that is still, somehow, in the kitchen cabinet (but I couldn't throw it away either, because that felt like throwing him away, getting rid of him...)

I do my research about financial aid, I raise funds for the heart walk, and I blog, because these things are my only hold on sanity sometimes, and they are the legacy of a child that I cannot let go of yet.

I don't sleep for crying, or trying not to. I wake up from dreams of the way his body continued to twitch after his heart stopped, and how bloated he was, and how quickly his body stated to get stiff, and how he weighed at least twice what he should have because of the fluid he'd retained, or the way I could feel his skin get cooler and cooler.

I sneak into the bedroom and pull out this one little sleeper, one that hasn't been washed since he wore it last, and I bury my face in it because it smells like him. I go to the hospital so I can be where he was. I hope to see Dr. Watts when I'm there, and shake his hand, because that hand actually touched Nova's heart.

So if I seem strong and inspirational, well sometimes maybe I am. And in those times, I carry on his name and I accomplish something because of him and I ensure that he is not defined by his death, but by his life, and I touch people for him because he no longer can. But in between all of that, I lose my mind a little, and I fall apart, and I wish him home, and I cry, and I get angry, and I forget he's gone, and I sleep with his bear, and I use up package after package of Kleenex, and roll after roll of toilet paper blowing my nose and drying my eyes.

And I never know how I'm going to feel from one minute to the next, and sometimes, like tonight, I have to stop what I'm doing and fall apart and go hysterical so it takes me an hour to type 15 minutes of text. It's just that you can't see the other 45 minutes of that hour.

posted by Erin @ 2:43 AM   4 comments

Tuesday, June 06, 2006

My husband owns a new lawn care company. He does pretty well for being in business for 6 months, but the job has some added perks that I love. His customers often want plants removed from their gardens for one reason or another. Rather than pay to dump them, he brings them home, sometimes they're healthy, but usually they're ailing and pitiful - and sometimes we don't even know what they are!

We've got a pretty nice garden out there, for a bunch of misfit unwanted plants. I love my garden, and I take a lot of pride in the fact that many of the plants were all but dead when he brought them home. I've got a rose bush that has taken 2 years of constant care, and finally this year, it's full of blooms.

Anyway, yesterday, Scott brought home 8 Nandinas that a customer wanted removed. 8 healthy Nandinas. We planted 5 of them on the spot. I'd never seen or heard of a Nandina until Nova was hospitalized. They were all over the hospital grounds, and they were so pretty in their fall/winter colors (rusty/red) and I fell in love with them. They're sort of dainty - and I found out yesterday that they have very pretty flowers, and green leaves, in the spring.

This morning, Scotty and I got up and decided where to plant these three other bushes. We'd been planning a Memorial Garden in our heads for about a month. Today, we got a good start. We built a water feature from a recycled wheel barrow, and surrounded it with flat stepping stones (also removed from a customer's yard) to camouflage the edge. I planted Nandinas around it, and a couple other rescue plants (type unknown) and plotted out where I'll be planting the Cupcake miniature roses (at Alexis' funeral, we laid 12 of them on her casket before they buried her, one for each day she lived) and where the Supernova Hostas (no explanation necessary, right?) will go. We can't afford to buy them yet, but we will. Soon.

Scotty dug the hole for the pond, because he knew I'd never get it deep enough, and then pretty well left me to do the rest myself. I think he knew I needed to do this, and I don't think he minded not having to do "work" stuff at home. So I spent the day lugging stones (some seemed like they weighed as much as I do) and arranging them, and rearranging them, and rearranging them, until I was satisfied with the effect. I dug several holes for all the plants, which wouldn't have been too hard, except that we discovered that the spot we chose for this bit of gardening used to be the leach field for the septic system (we're on city water/sewer now, so it doesn't matter) which means that it's 90% gravel. That makes for some hard digging. My hands and back are killing me and I'm walking like an 80 year old.

I enjoyed getting in there and doing it, getting dirty and planting and accomplishing something. It looks pretty good even missing the roses and hostas. It felt good to make a place to symbolize and memorialize the babies, even if it isn't finished. Nothing soothes me like gardening, it's just satisfying, no matter what I'm planting, or why. It was a fitting way to spend the 2-month anniversary of Nova's death.

posted by Erin @ 11:18 PM   0 comments

Monday, June 05, 2006

My AHA donations just reached $225! Thank you Krystal!

Make that $325! Thanks Eve!!

posted by Erin @ 3:23 PM   2 comments

Terra has become very affectionate and loving lately. Where she used to be extremely independent, and either be tackled or begged for a kiss, she now tells me over and over every day that she loves me, asks me for hugs and kisses, and even wants me to kiss her stuffed animals at night when I tuck her in.

Yesterday she came over with this scraggly-headed naked doll, with a big sweet smile on her face, and asked for a kiss and a hug, one of each for her, and one of each for her baby. (in the proper order, hug baby first, then a kiss for the baby, then a hug for her, then her kiss...) She was holding it just so, and my breath caught in my throat for a minute. I had this mental image of how she'd be with Nova now, so gentle and sweet, and how he'd love her.

Tomorrow marks two months since Nova died, and it's about time to get his things packed up. As it stands, I can't even sleep with my husband for staring through the empty slats of the crib next to the bed and bawling. We're also getting rid of the waterbed, because I can't sleep in it anymore because he spent so many nights in it beside me. I just can't.

I started sleeping on the couch while Nova was in the hospital because I kept having this dream that he was crying, and I'd wake up standing next to his crib, frantically trying to find him. It was a bit too much like the crying jags over Alexis' crib before she was born, and I retreated to the cribless quietude of the livingroom. I've not spent a night in bed since then. I tried it the other night, I swear I did, and dissolved in to tears in about a minute, and spent the rest of the night that way. Scotty's been very understanding and not-pissy about it, but I think it's time.

So my niece is pregnant, and due in September. I told her when we first found out that she was pregnant that I'd pass along his things when he no longer needed them. He no longer needs them, and I'm hoping that neither do I. Going through his things and packing them up is going to be so hard. Giving them away even harder. I'm dreading it, but also feeling not only that it needs to be done but that I need to do it.

Tags: , , , , ,

posted by Erin @ 11:12 AM   0 comments

Saturday, June 03, 2006

As you can see below, the financial assistance list is coming along. It's taking longer than I'd hoped, but I'm steadily getting there. So far I've covered 29 39 states and at last count, that included 60 83 different hospitals. I'm having trouble finding anything in Hawaii - I'm not entirely sure that there are any hospitals in Hawaii that perform neonatal/pediatric cardiothoracic surgeries, but I'll keep researching, I'm far from done.

I've discovered that some of these hospitals have websites that are completely user UNfriendly, or offer little or no information. And that many hospitals work through a network, like Carolina's Medical Center does, that includes multiple hospitals. This should simplify things, seeing that many times, the billing/financial assistance offices are the same for several hospitals, but in reality, it complicates things, because it means that I have to do more research to insure that I'm posting the right links, and haven't somehow gotten lost in their system and taken a wrong turn and ended up in the wrong spot with the wrong information.

I've gotten discouraged a time or two, by the amount of work just one link sometimes requires. But then, I check the stats for the blog and see several visitors who've arrived here by doing web/blog/technorati searches with terms like "Stanford hospital billing" or "Financial Assistance Children's blog" or "Child's Charity" and it makes it worth every phone call and every minute of sorting through web pages.

posted by Erin @ 1:47 PM   0 comments

Financial Assistance Contact Information Within Individual Hospitals,
indexed by State (list in progress - growing daily)

Just click the state in which your child's Congenital Heart Defect was corrected or treated
AlabamaAlaska Arizona Arkansas California
Colorado Connecticut Delaware Florida Georgia
Hawaii Idaho Illinois Indiana Iowa
Kansas Kentucky Louisiana Maine Maryland
Massachusetts Michigan Minnesota Mississippi Missouri
Montana Nebraska Nevada New Hampshire New Jersey
New Mexico New York North Carolina North Dakota Ohio
OklahomaOregon Pennsylvania Rhode Island South Carolina
South Dakota Tennessee Texas Utah Vermont
Virginia WashingtonWest Virginia Wisconsin Wyoming

University of Alabama Hospital
619 South 19th Street
Birmingham, AL 35233-6505
(205) 934-4011
Hospital Patient Representative:
Phone (205) 934-2273
Fax (205) 975-8677

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Fairbanks Memorial Hospital / Denali Center
1650 Cowles St.
Fairbanks, AK
Social Services: (907) 458-5400

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Mayo Clinic Scottsdale/Phoenix
Patient Financial Services (480) 301-7033
or toll-free (800) 603-0558
Mayo Clinic Financial Statement (PDF)

Phoenix Children's Hospital
1919 E. Thomas Road
Phoenix, AZ 85016
(602) 546-1000
Financial Assistance Program:
Customer Service (602) 512-8882.

University Medical Center
1501 N. Campbell
Tucson, AZ 85724
UMC Customer Service – Business Office (charity care)- PDF

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Arkansas Children's Hospital,
800 Marshall St.,
Little Rock, AR 72202-3591,
(501) 364-1100 or
TDD (501) 364-1184
Social Work Referrals: 501-364-1406
financial assistance (info)
Financial Assistance Application (PDF)

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1. Lucille Packard Children's Hospital

725 Welch Road
Palo Alto, California 94304
(650) 497-8000
Stanford Hospital Billing:
(800) 794-8978 or (650) 498-7200
Stanford Clinics Physician Billing:
(800) 549-3720 or (650) 498-5850

UCSF Children's Hospital
505 Parnassus Ave.
San Francisco, CA 94143
(415) 476-1000
Social Work department (415) 353-2655.
Financial Counseling (415) 353-1966

3. Loma Linda University Children's Hospital
11234 Anderson Street
Loma Linda, California 92354
(909) 558-8000
Family Needs and Support: (909) 558-4000,

4. Childrens Hospital Los Angeles
4650 Sunset Boulevard
Los Angeles CA 90027
Social Work:
(323) 669-2485 Ext. 2485

5. Cedars-Sinai Medical Center
8700 Beverly Boulevard
Los Angeles, CA 90048
Financial Assistance and Billing:
323 866-8600

6. Children's Hospital and Research Center at Oakland
747 Fifty Second St.
Oakland, CA 94609-1809
(510) 428-3000
Patient Accounting (Billing) (510) 428-3485
Social Services (510) 428-3325
Family Resources (510) 428-3549

7. Childrens Hospital of Orange County
455 S. Main St.
Orange, CA 92868-3874
Social Services: (714) 532-8521

8. Childrens Hospital San Diego
3020 Children's Way
San Diego, CA 92123
Financial Assistance: (858) 966-4912
Financial Assistance Application (PDF)

Other helpful links for California families:
Community Health Care Resources

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The Children's Hospital
1056 E. 19th Ave.
Denver, CO 80218
Patient Financial Counselor: (303) 861-6422
Support for Patients and Families

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1. Connecticut Children's Medical Center
282 Washington Street
Hartford,CT 06106
(860) 545-9000
Patient Financial Services:
Contact form

2. Yale-New Haven Children's Hospital
20 York Street
New Haven, CT 06504
Financial Assistance:(203) 688-2030

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Delaware - Alfred I. duPont Hospital for Children
Alfred I. duPont Hospital for Children
1600 Rockland Road
P.O. Box 269
Wilmington, DE 19899
Financial Assistance:(302) 651-4228

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Mayo Clinic at Jacksonville
Patient Financial Services
4500 San Pablo Road
Jacksonville, FL 32224
Telephone Number:
(904) 953-7058

Arnold Palmer Hospital for Children & Women
92 West Miller Street
Orlando, FL 32806
407 649-9111
Case Mgmt/Social Worker: 321-841-5302

3. All Children's Hospital
801 6th Street South
St. Petersburg, FL 33701
(727) 898-7451
Patient & Family Services
(727) 767-4147

4. Miami Children's Hospital
3100 SW 62nd Avenue
Miami, Florida 33155
By phone: 305-666-6511 or
Toll-free: 1-800-432-6837
Department of Patient Financial Services
Phone: (305) 663-8452

St. Joseph's Hospital
3001 W. M.L. King Blvd
Tampa, FL 33677-4227
(813) 554-8500
Financial Counseling:(813)870-4477
Clinical Resource Management:(813) 870-4974

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The Children’s Healthcare of Atlanta Sibley Heart Center
Patient Resources:
Financial Counseling
at Children's at Egleston
Financial Counseling at Scottish Rite

Other Helpful Sites for Georgia Patients
Peachcare for Kids

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St. Luke's Children's Hospital
190 E. Bannock St.
Boise, Idaho 83712
Financial Services
Boise/Meridian: (208) 706-2333
Sun Valley Area: 800-244-7307

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Northwestern Memorial Hospital Chicago
250 E Superior St Ste 446
Chicago, IL 60611-2914
Financial Counselors: (312) 926-6906
or Social Worker: 312/926-7654

Advocate Hope Children's Hospital
4440 W. 95th St.
Oak Lawn, IL 60453
Advocate Charitable Foundation
205 West Touhy Avenue, Suite 225
Park Ridge, IL 60068(847) 384-344949
Doug Diefenbach
Vice President of Communications
Charity Care Guidelines

3. The University of Chicago Hospitals
5841 S. Maryland Avenue
Chicago, IL 60637
Financial Services: (773) 834-4730.

4. Children's
Hospital of Illinois (Peoria)

530 N.E. Glen Oak Avenue
Peoria, Illinois 61637
Local Phone: (309) 655-7171
Charity Assistance

5. Children's Memorial Hospital (Chicago)
2300 Children's Plaza
Chicago, Illinois 60614-3394
773-880-4000 1-800-KIDS-DOC
Financial Assistance: 773-880-4273

6. La Rabida Children's Hospital
and Research Center (Chicago)

Ronald McDonald Children's Hospital

2160 South First Avenue,
Maywood, Illinois 60153
Patient Financial Services: (800) 424-4840 Option #3

Hospital for Children (Indianapolis)

Financial Counseling:(317) 274-7793
Social Worker: (317) 278-0126.

Vincent Children's Specialty Hospital (Indianapolis)

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Riley Hospital for Children
Patient Financial Services:
Customer Service: (317) 962-8661 or
toll free (800) 552-6871

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Children's Hospital of Iowa
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, Iowa 52242
financial counselors: 319-384-6275

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Children's Mercy Hospitals and Clinics
2401 Gillham Road, Kansas City, Mo., 64108
Financial Assistance
Financial Assistance Application (PDF)

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Kosair Childrens Hospital
231 E. Chestnut St.
Louisville KY 40202
Financial Counselors 502-629-8281
Billing & Financial Information

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Children's Hospital
200 Henry Clay Avenue
New Orleans, LA 70118
(504) 899-9511
(504) 896-9452
General Information:

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Maine Medical Center
(Barbara Bush Children's Hospital)
22 Bramhall Street
Portland, ME 04102-3175
Patient and Family Resources: (207) 662-2261
Patient Bills (207) 662-2411
Toll Free 1-800-974-2072

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1. Johns Hopkins University-Pediatrics
600 North Charles Street,
Baltimore, MD 21201
financial officer (410) 955-8288
Social Work at (410) 955-6518

2. Hospital for Children
(University of Maryland)
22 South Greene Street
Baltimore, MD 21201
Billing Inquiries 410-821-4140
Social Work 410-328-6700

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Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
(617) 726-2000
Social Service Department
15 Parkman Street, WAC 037
Boston MA 02114
Social Service Department: 617-726-2640
Patient Financial Services 617-726-2191 (Free Care and Mass Health)

2. Children's Hospital Boston
300 Longwood Avenue
Boston, MA 02115
(617) 355-6000
financial assistance: 617-355-7201

Another Useful Link:
Catastrophic Illness in Children Relief Fund
Division for Special Health Needs
Massachusetts Department of Public Health
250 Washington St., 4th Floor
Boston, MA 02108-4619
Phone: 1-800-882-1435
TTY 617-624-5992
Downloadable Application Form

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1. 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
Phone: 734-764-6893
Fax: 734-763-9950

2. Children's Hospital of Michigan
3901 Beaubien
Detroit, MI 48201
Billing Information (313) 578-2700
Social Work/Discharge Planning (313) 745-5281
Family Care Representative: 313-745-0132

3. Devos Children's Hospital
100 Michigan St. NE
Grand Rapids, Mi
Financial Assistance:
(616) 774-1710 or
toll-free (800) 968-0145

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1. University of Minnesota Children's Hospital, Fairview
500 Harvard Street
Minneapolis, MN 55455
612-672-6724 or 888-702-4073

2. Children's of Minnesota
Children's - St. Paul
345 N. Smith Ave.
St. Paul, MN 55102
Children's - Minneapolis
2525 Chicago Ave.
Minneapolis, MN 55404
Children's Financial Customer Service Representative: (651) 999-5600

3. Mayo Eugenio Litta Children's Hospital
Mayo Clinic Rochester
Mayo Clinic Financial Statement form (PDF)
Patient Account Services at
Mayo Clinic
200 First Street SW
Rochester, MN 55905
(507) 266-5670

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1. Missouri:
Children's Mercy Hospital
Kansas City, MO
Patient Billing Services: (816) 234-3571
Financial Assistance Application.

2. University Children's Hospital
One Hospital Drive
Columbia, MO 65212
Financial Counselor:(573) 884-9900

3. St. Louis Children's Hospital
One Children's Place
St. Louis, MO 63110
Patient Accounts Customer Service

4. Cardinal Glennon Children's Hospital
1465 South Grand Blvd.
St. Louis, MO 63104
Social Services (314) 577-5697

Additional links for residents of Kansas and Missouri:

Missouri's MC+ Health Insurance Program

Kansas Health Wave Insurance Program

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Children's Hospital in Omaha
8200 Dodge Street
Omaha, NE 68114
(402) 955-6950
Social Worker:
Phone: (402) 955-5418
Fax: (402) 955-3271

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Sunrise Children's Hospital
3186 South Maryland Pkway
Las Vegas, NV 89109
Telephone: (702) 731-8000
Pediatric and Neonatal Social Services:
Telephone: (702) 731-8134

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New Jersey
The Christ Hospital
176 Palisade Avenue
Jersey City, NJ 07306
(201) 795-8200
Patient Financial Services Department
218 Palisade Avenue
Jersey City, New Jersey 07306
(201) 795-5810

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New York
1. Morgan Stanley Children's Hospital
of NewYork-Presbyterian
622 West 168th Street (near Broadway)
financial services (212-632-7440)

2. The Golisono's Children's Hospital
(at Strong)
601 Elmwood Avenue
Rochester, New York 14642
Phone #: (585) 275-2100
Patient Accounts: (585) 275-7223 or
toll free at 1(800)-544-0877

3. St. Francis Hospital
100 Port Washington Boulevard
Roslyn, NY 11576
(516) 562-6000
Customer Service (Billing) 516-705-3822

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North Carolina:
Carolina's Medical Center (Carolina's Health Care System)
1000 Blythe Boulevard
Charlotte, NC 28203
Financial Counseling
Customer Service: 704-512-7000

2. Duke Children's Hospital
Duke University Hospital
Erwin Road
Durham, NC 27710
(919) 684-8111
Department of Social Work
P.O. Box 3376
Duke University Medical Center
Durham, North Carolina 27710
Phone: (919) 681-4722
FAX: (919) 684-4094

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The Children's Hospital
The Cleveland Clinic
9500 Euclid Avenue
Cleveland, OH 44195
216-444-2200 or
toll free: 1-800-223-2273
Financial Assistance Program:
216-445-6249 or
toll-free 866-621-6385

2. Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue,
Cincinnati, Ohio 45229-3039
TTY: 513-636-4900
Financial Assistance:513-636-0201.

3. Children's Hospital Medical Center of Akron
One Perkins Square Akron, OH 44308
(330) 543-1000
Public Assistance: (330) 543-8500 or
toll free 800-933-7440

4.Rainbow Babies and Children's Hospital
11100 Euclid Avenue
Cleveland, OH 44106
(216) 844-1000
Social Work Dept: (216)844-8965

5. Children's Hospital
700 Children's Drive
Columbus, Ohio 43205
Financial Assistance: 614-722-2055
HCAP Application (PDF)

The Children's Hospital at OU Medical Center
940 NE 13th Street
OKC, OK 73104
Billing: (405) 271-4225

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Doernbecher Children's Hospital
3181 SW Sam Jackson Park Rd
Portland, OR 97239-3011
(503) 494-8811
Patient Business Services: 503-494-8760
1400 SW 5th Ave
Suite 400,
Portland, Oregon 97207
Financial Assistance Policies (PDF)

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The Children's Hospital of Philadelphia,
34th Street and Civic Center Boulevard,
Philadelphia, Pa. 19104
Main Number: 215-590-1000
Charity Care Program:
267-426-0359 or
toll free: 1-800-974-2125

2. Penn State Children's Hospital
500 University Drive
Hershey, PA 17033
Financial Counseling (717) 531-5069
Social Services (717) 531-8306

3. St. Christopher's Hospital for Children
E. Erie Ave at Front St
Philadelphia, PA 19134-1095

Children's Hospital of Pittsburgh
3705 Fifth Ave
Pittsburgh, PA 15213-2583
Family Resource Specialist: 412-692-8230

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Rhode Island
Hasbro Children's Hospital
593 Eddy Street
Providence, RI 02903
financial assistance (401)444-6966

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South Carolina
MUSC Children's Hospital
171 Ashley Ave.
Charleston, SC 29425
Social Work:(843) 792-9535
Billing 792-2311 or 800-598-0624

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South Dakota
Sioux Valley Children's Hospital at Sioux Falls,
Patient Financial Services
PO Box 5053
Sioux Falls, SD 57117-5053
Phone: 605-328-6585
or toll free 1-877-629-2999
Child Care Help Line

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1. St Luke's Episcopal Hospital
6720 Bertner Avenue
Houston, TX 77030
Patient Financial Services
832-355-3081 or
toll free: 800-854-5455
or by email
(requires Physician referral)

2. Texas Children’s Hospital
P.0. Box 4494
Houston, TX 77210-4494
Charity care program: 832-824-5500

3. Children's Medical Center Dallas
1935 Motor Street,
Dallas, Texas, 75235.
financial counselor: 214-456-8640

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Children's Hospital of The King's Daughters
601 Children's Lane
Norfolk, VA 23507
CHKD Care Connection for Kids(about us)
CHKD Care Cannection for Kids (contacts)
Phone: (757) 668-7132 or
toll free: 1-(800)-864-8903
Fax: (757) 668-9644

Fairfax Hospital for Children
3300 Gallows Rd,
Falls Church, 22042
(703) 776-4002
Care Connection for Children:

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Children's Hospital and Regional Medical Center
4800 Sand Point Way NE,
Seattle, WA 98105
(206) 987-2000
(206) 987-2280 (TTY)
Financial Assistance Information
Application Form (PDF)

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Children's Hospital of Wisconsin
Financial/Billing Information
Mailing 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

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posted by Erin @ 12:30 AM   0 comments

Friday, June 02, 2006

Today, Nova would have been 6 months old, he should be here, doing the things that 6 month old babies do. I know, it isn't his 1 year birthday - but it is something that, had he lived, we'd have made note of, marked off on the calendar. He'd have been starting solid food, rolling over, and saying mama/dada (probably dada, my kids always said dada first, even though I have always been the one doing poop patrol and boobie duty, not that Scott could possibly do boobie duty of course!) By now, he'd have been smiling all the time - it breaks my heart to think that he only ever really smiled once in his whole little life.

See, it's the little things we mourn, the things we will never get to see him do, never get to say to him, or teach him.

Instead of celebrating his 6-month milestones, I'm thinking that in 4 days, we will mark the 2 month anniversary of his death. God I miss him, more than I can ever express.

posted by Erin @ 11:32 AM   3 comments

Thursday, June 01, 2006

Master Gene Causes Heart Defect
"...The gene, known as GATA4, is only the second gene that's been identified as a possible cause of congenital heart defects, one of the most common birth defects in the United States..."
I can't help but wonder if that's what happened with us, or if there are still other genes and genetic mutations and abnmormalities that we know nothing of.

posted by Erin @ 8:23 PM   0 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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