Cora's Story

Wish list....

2009-08-10T23:57:00.000-07:00

We're running this non-profit on a slim budget, can you help any of our wishes come true? Any donation helps!

Check back as we'll update this as our needs change. Thank you so much in advance for even looking at this list and seeing if you have something we need!

Good Deed help:

For our September good deed, we're donating items and helping animal shelters. So, if you have pet gift certificates or unused pet toys or supplies, email us!

Office supplies:

Stamps
Envelopes, mailing tape, and any sort of packaging material (we do a lot of shipping!)

If you can help, either message me, kbrite@gmail.com.

The good patient. Medicine is a team effort.

2010-09-08T00:03:00.000-07:00

When I was pregnant with Cora, during delivery, and during our time in the hospital, I made it my goal to be a "good patient."

To me, being a good patient meant not making waves and doing as much as possible for myself. Being a good patient meant listening carefully to nurses and doctors and following their every suggestion.

I was such a bad patient in the process.

I'm going somewhere with this, I promise. First of all, I was lucky to have excellent care in the hospital, this isn't a post blasting my hospital or hospitals in general. Far, far from it.

I got an email the other day from an online friend. She thanked me for putting myself out there and working to share what I've learned about congenital heart defects with moms and moms to be (I think you're a mom to be from conception of a little one, but whatever, that's another blog post).

She said she appreciated my efforts to make woman active participants in their care and their child's care.

That phrase is super key. Active participant. Being an active participant in your care and your child's (born or unborn) makes you a good patient.

I'm not just asking woman to think about asking for simple pulse oximetry screening for their newborn, I'm asking them to join in their care. That's my ultimate message. I just happen to focus on the congenital heart defect world especially prenatally and shortly after birth.

I truly believe one day soon, every baby will be screened with pulse oximetry, but Cora's work, the work on this blog, and through the young nonprofit started for her will be just starting. We'll continue to strive to give mothers good evidence-based suggestions.

By trying to please the staff in the hospital and during prenatal treatment, I was making their job harder.

Ultimately, we're all interested in a healthy mom and baby.

Before Cora died, I'd never heard the terms participatory medicine, e-patient, or Medicine 2.0. All are related and deal with a medical system model where the patient is an active participant in their medical care. Makes such sense, doesn't it?

An official definition from the Society for Partcipatory Medicine:

"Participatory medicine is a cooperative model of healthcare that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.

The Society was founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels"

It's our body, or our children's body, of course we should be active in our health.

I think it's helpful for pregnant woman to think along those lines.

I have a new definition of what makes a good patient. A good patient researches all aspects of their care and speaks up when something doesn't feel right to them.

Online, I met Mary Ellen. Her son James died not because he had a congenital heart defect, but because of medical error. Through her, I learned that on average one medical mistake is made a day in the hospital. Because hospital workers are humans. Who doesn't make a tiny mistake or two at their job? I guarantee you you'll find at least one typo/grammar mistake in this article. By participating in our care, we can stop these mistakes by asking the nurse to wash her hands or by asking questions about what's being done and why.

Being a participant in our care makes the job easier for health professionals. But, we also hold a responsibility to be the best active participants we can be. Common sense tells me that in order for participatory medicine to be effective, respect from all team members (the patient, doctors, nurses, etc) is a must.

Cora taught me how to really be a good patient.

...

I'm interested in your thoughts on this one and keeping the comments open. How does the participatory medicine model apply to pregnant woman and to moms?

December 6

2010-09-04T01:03:00.000-07:00

It’s creeping up you know.

I feel it looming. Even a few months away.

Fall is sweeping in.

And, we all know what follows fall, dark, cold winter nights.

But, it’s not just the gloomy winter days I dread.

It’s hard to even write.

It’s…

Well…

Anniversaries…

Of the bad sort…

They’re almost here.

Last year at this time, I was in my final trimester of pregnancy.

It goes fast, that final trimester.

I can feel that anniversary.

I feel different.

It’s like every part of me knows it’s creeping up and is bracing for the full impact of the dark days.

I’m learning that the anniversaries are some of the hardest of this.

Worse than you could ever imagine.

I’ve felt off for a little while. And, suddenly, it came to me why.

That horrible day, it’s almost about to repeat. Almost here again.

The post every pregnant woman should read. (Share this, save lives)

2010-09-02T03:14:00.000-07:00

I decided to write it all down. Everything I wished I'd known about the most common birth defect. I know when I was pregnant, reading information about SIDS or car seat safety was tough, but after realizing that knowledge might save my child's life should they have one of those conditions, I powered through.

Reading about CHD is something every pregnant woman should take a few moments to do. Knowing the signs and symptoms and researching detection methods saves lives.

I know sharing Cora's Story with pregnant friends and family isn't always easy. But, I hope that you'll help. That you'll share this post (share on Facebook or Twitter using the links in the footer). No family should ever be blindsided by the most common of all birth defects, occurring in about 1 in 100 births. Just remember, I'm not a doctor. Just a mom.

I present to you, a crash course in congenital heart defects (CHD), or what I wished I'd known about CHD before giving birth.

I found out after my daughter died that she had a congenital heart defect. When I first heard about it, I thought it must be something rare, for me, an educated woman that read everything I could while pregnant to no nothing about it. Turns out, it's not rare at all as far as medical issues in children go. Congenital heart defects are a leading cause of death in children and infants. Some places, name CHD as the leading cause of death in infants. But, and this is a huge but, most CHD children live. In fact, medicine has improved outcomes for these patients so well, that more adults currently live with CHD than children. It's a hidden disability for these adult and children patients.

About CHD
Over 35 different types of CHD are known, and each defect looks a bit different in each patient. So, each CHD heart is like a snowflake, no two alike. Chances are you know someone with a CHD. Some defects require nothing but an extra doctor's visit every few years, while some are more serious and require a series of surgeries. Often someone figures out that they or their child has a CHD after talking to me about Cora's story. They just weren't aware because the doctor never used the term "congenital heart" with them.

While we're on the subject, congenital heart means simply born with, so a person with CHD is always born with the issues.

The exact cause of CHD isn't know. There's a genetic link, but CHD can happen to anyone. For example, there's no known CHD background on either side of Cora's family.

Nothing detects congenital heart defects all the time. But, early detection improves outcomes. The defects can go undetected into adulthood.

There's not really a cure for CHD either. Surgery can mend the heart and medications can keep things under control.

This makes CHD even more scary. Awareness doesn't mean much unless there's a reason to make everyone aware. And, there are things that pregnant woman can do to reduce the odds of having a CHD baby, having a child go undetected, and picking up on the signs of a CHD.

While pregnant
Take a folic acid supplement. In fact, talk to your doctor about starting this before you're pregnant. There's a link to folic acid deficiency and CHD.

Don't smoke even if you're thinking about getting pregnant. Quitting when you find out isn't really an option. The heart develops early in pregnancy.

You know the ultrasound? The big one around 20 weeks where you find out if you're having a boy or girl? It's also to look at the baby's development. Ask your ultrasound technician about the heart and if all chambers are present.

After birth
Ultrasounds, fetal echos, and doctor suspicion after noticing irregular in utero heart rates all lead to detection. But, many defects aren't found until later.

Ask if the doctors or nurses hear a murmur. A murmur often occurs and can be harmless, but can signal something else.

Request your child be screened with pulse oximetry after 24 hours of life. Your baby should be calmed and anything below a 95 might signal a need for extra testing. Talk to your doctor about adding the pulse oximetry in while your child is at the hospital. Some hospitals routinely use this simple, cheap, noninvasive test, but others don't. This easy test saves lives. Ask for it.

Memorize warnings signs of a possible congenital heart defect. In a newborn, dusky coloring, turning blue, trouble feeding, rapid breathing, sweating along the forehead, and tiring easily are warning signs. Report any symptoms to a doctor and request an examination.

Please share this important post to bring us one step closer to making sure every mother, father, and expecting parent knows about the most common birth defect.

The light at the end of the tunnel.

2010-08-30T01:46:00.000-07:00

Sometimes, I read a quote or story and it sticks with me for days after.

Do you ever do that? Read a really true quote pertinent to what you're currently going through and carry the quote with you?

I saw this on Twitter a few days ago:

This hit home to me on many different levels.

I've talked how rough this month has been. How depression creeped in. Over and over, I've talked about just feeling blah. How I've been sleeping too much and been feeling uninspiried.

I know it's time to call for medical guidance to treat depression, but I also know, this is more than depression. I went through something totally life changing. I realized within hours of Cora's death, I wanted this tragedy to make better, that the only way I was going to get through is if I became more compassionate to others.

This tweet reminded me that sometimes the best way to get over anxiety and depression is to stop with the inward thinking, to think about others. Anxiety doesn't feel quite as bad if by doing something I fear, I help others.

What a great tool in the fight against the dark thoughts and long nights. Certainly, I'll need more help than just doing good for others, but it's pretty effective.

This reasoning also helps with some social anxiety I've been having since Cora died. Hard to feel too much anxiety in social situations when you're listening closely and really showing compassion to others around you.
...

It's my favorite day of the month, speaking of thinking about others. It's the 30th, which means it's Wear Pink for Cora! A day to do a good deed, and of course, to wear pink.

...
I've been so out of it this month, I've been horrible with returning emails and messages. If I haven't gotten back to you, please resend your note.

....

Cora would have been nine months old today. Hug your baby tight.

Dear Cora: Saving lives isn't always easy.

2010-08-29T02:01:00.000-07:00

Dear Cora,

Mommy is still hanging in there.

Daddy started school. It was the first week of his second year. He said he likes his classes so far.

Mommy's always honest with you and she's in an awful sleep schedule. It's almost five in the morning and she's still up! There's an infomercial droning on in the background. So annoying and distracting, but mommy just doesn't even have the energy to change it.

I haven't written you because I just feel like there's not much to say. I'm just here. Hanging on. Because I have to.

I wake up every day and drag myself out of bed because it's my only choice.

The 30th is approaching and that gives me more to wake up for. Knowing that many people will spread love and wear pink in your name.

I have big plans to get back on track. But, I'm still slowed down.

I'm worn out, still. For the past few weeks, I've just felt exhausted.

Daddy and I are going forward with your nonprofit. I'm sorry I haven't updated to tell you about it lately. We're planning out first board of director's meeting in September where we'll pass the bylaws and talk about how to move forward.

I worry I've run out of steam. I work so hard, and fear what will happen to everything if I step back for too long. So, I try to work on it a bit at a time.

You'd think setting out to save and improve lives would be a simple mission met with little resistance. Mommy has been so surprised to run into any ugliness on such a beautiful journey. But, it's there. It's part of what wears mommy out. The negative side. But, she tries her best to overlook it and move forward. Some day, she's going to even learn to make that ugly stuff not so ugly, shut it out completely.

Apparently, saving lives is hard work.

But, we're doing it.

Thank you Cora, for helping so many babies and mommies.

Love,
Mom

Cora's Story.

2010-08-23T15:41:00.000-07:00

I've never really written Cora's Story, from start to finish here.

A few days after she died, I hastily fumbled something out using my phone to a friend to tell her story online for the first time. And, I constantly tell people about her. But, not the whole story.

I think I'm afraid I'll miss something. Some important detail. Something that I love about Cora, or that I find super important.

Or, maybe it has some finality to it. Like, her story is done. I know, I know, it's absolutely not.

But, when another blogger told me about an event she was hosting, Every Heart has a Story, to gather congenital heart defect stories, I decided to make an attempt.

This is Cora's Story. It's all been shared in pieces around this blog and the web, so might be familiar to you.

I found out on Easter Sunday 2009 I was pregnant. A huge surprise. I woke up Cora's dad not even able to tell him, just a point to the bathroom, and a "go, look." We were happy because we wanted out child to feel loved from the start. We didn't want to waste anytime feeling bad about it. And, we were really happy.

We moved into a bigger place the next month and started getting ready. Well, we thought we were getting ready. We were really just taking stabs in the dark pretending one can prepare for a baby. I did everything I thought I was supposed to. I bought prenatal vitamins, and a copy of "What to Expect When You're Expecting."

I joined baby forums online. I started a baby blog and started talking about the baby nonstop. Nothing exciting happened at my doctor's appointments, I was in and out before I knew it. Everything was fine. Good even. Normal. I read everything I could. I became a SIDS expert. So careful to protect this baby. I found she was a girl. We named her Cora. And worked to finish her nursery.

Cora was originally due December 15, 2009, but that changed at our ultrasound around 14 weeks, when her due date was changed to December 4. We loved thinking of her as a December baby. I won't bore you by listing, but most of our family was born in late November and early December. Turns out, she was born on my great Aunt's birthday, but in November, November 30, 2009. Ben was quite excited when he found out in the hospital that November 30 is Winston Churchill's birthday, he thought it meant Cora was bound to be a leader and a make a difference.

But, to go back a bit. I lost my mucus plug a few weeks before and felt like labor was coming for about a week and a half. My birthday is November 24, and I remember thinking Cora might share my birthday with some contractions and just feeling strange, but she didn't. Same thing on Thanksgiving. Ben cooked and I felt my body preparing for Cora's arrival.

Around 10:30 pm November 29, I was standing at the counter when I felt my water break. Ben had barely left my side the past few days, but was out. It gets a little blurry, but I remember calling the doctor, the hospital, and Ben, but might have called him first. Of course, I had a hospital bag packed for weeks. We drove about 30 miles to the birth hospital. We got checked in and I pushed off offers to put me on pitocin. I slept a little that night and walked the halls of the hospital. Finally, at about 8 am, my doctor insisted I couldn't wait and started the drugs. But, everything else was so routine. After taking a nap, I woke up and had Cora at 9:25 pm. Well, there was a bit of pain and lots of work involved.

She scored a nine on both of her Apgar tests, an assessment given after birth. She cried much the first few hours, but the sound was music to my ears. The nurses told me it was good for her to cry that much and a good sign. About an hour later, we let Cora's grandparents meet her. My mom was so excited to be a grandma, she sit in the waiting room all day. Ben's dad and step mother made the trip from Indianapolis. My sister Megan came up a few hours later. Cora was so loved.

Ben left for a bit to get us some food, I'd barely eaten for over 24 hours. He told me happily how he gave the security guard and everyone at the restaurant pink cigars. I giggled at him. We all held Cora and sometime settled in for a few hours of sleep. The hospital days were spent with my mom and sister vying for a chance to hold her. Everything went so well. I went to the nursery for her peditrician's visit, where he told me she was healthy. The next day, a nurse practitioner saw her. I just about flipped when they told me her jaundice level was high, I quizzed everyone about what that meant and what to do. If only I'd known it was low on the worry scale compared to what was really wrong with her. A different test showed she wasn't jaundiced, the equipment failed.

We decided to get her first picture taken, and Ben and I proudly escorted her to the photography studio where the photographer was amazing. Well, her work captures that peaceful moment perfectly.

We scheduled a car seat check, and Ben made sure the car was perfect for the trip home. I remember when Cora was buckled in by the woman working with us. We thought she was so cute in her car seat and all of us started snapping pictures.

I wasn't really happy she had the pacifier so early, one of the nurses asked, and I caved for some reason because she was nursing so well. She was a paci addict.

We packed up all of our stuff, Ben grabbed the car, and I was wheeled down with Cora at about 10:30 pm on December 2. I was shocked at how cold it was. When I went in, it was fall, but in those three days winter came. Ben drove home slowly, and I sat in the back with Cora. The going home outfit I'd spent a lot of time picking out for her was so huge. I had planned and planned and planned about what to pack for her, but ultimately no one could have prepared me. I think because every baby is different. This is the going home outfit.

Cora was a face scratcher. I was torn between binding her little hands in mittens and worrying she was hurting herself, so put the mittens on her sometimes. She had such determined little hands.

We got into the house and showed her around. She settled in by crying much the first night. I think we both hoped we could handle this. But, we ultimately did. Such an adjustment, waking up every few hours to nurse her.

Ben and I sort of fell into taking shifts. He would wake me to nurse her. She didn't sleep well through the night, she was like us and a night owl. I thought this might have something to do with her being born at night.

I forgot to mention another milestone. At the hospital, I changed my first ever diaper. I'd never done so. But, of course changed many in Cora's short five days.

When Ben was asleep, he was a student and only had classes a few days a week so he was home with us those days, Cora and I listened to music. I found the music channels on our cable, and would just stare at her.

Once in awhile, I'd put her in the bouncy chair next to me free my hands to make phone calls to gush to my friends about how out of the world amazing she was. How much I loved being a mom.

One night, I decided to get a bit of sleep on the couch. I slept a bit, just rested my eyes and then could tell Cora was hungry. Ben handed her to me and I sat up and grabbed our pillows and settled in to nurse her. I think it was the first and only time I nursed her on the sofa. Ben went in the shower, and she latched and fed. Ben came out of the shower and came over and stroked her cheek. We both looked down at her with such love. He sat down in the recliner, and I looked up at him to say something that I don't even remember.

Only seconds later, I looked back down to check on Cora. I saw blood on my breasts, and this all happened in about a second, but I remember wondering how my breast would start bleeding, and then looked at her face and realized it wasn't my blood. She wasn't breathing.

Cora was gone.

.....

We found out a few days later she died of an undetected congenital heart defect.

Her five days are making a difference.

Dear Cora: Mommy needs to cry.

2010-08-21T15:08:00.000-07:00

Dear Cora,

I'm writing to you because I really need a good cry. And, I often get emotional when I write to you or about you.

The oddest feeling the past few days. The tears have been just about to fall, hidden not far from the surface, but won't come. How I feel like I just need a good cry.

My eyes start to moisten when I write this. I just miss you. I miss holding you. I miss listening to you cry. I miss talking to you.

The five days that you lived where my whole life all wrapped up. It's like you were here all along.

I miss your determined little hands. I was so surprised at how strong they were.

I miss the silly little nicknames I had for you.

I miss being completely and totally happy. Full. Of love.

I miss watching you sleep, so peaceful. I miss you.

Tears do start to fall, but not the huge release I need.

Maybe I'm out of tears for now.

Love,
Mom

Comparisons can hurt.

2010-08-19T15:01:00.000-07:00

It's human nature.

To compare. We all go there, think about how we can relate to the person telling us their story. I understand that.

But those comparisons?

Can lead to a lot of hurt. No, it's not easy to sit across the table as someone interrupts your story about your dead daughter to talk about how, oh yes, they knew exactly how you felt because their child almost died some years ago and then went on to talk about how wonderful the child was doing. It hurt. All these months later, and when people compare sick children to dead children, I still get hurt.

A long time ago, I realized it's the comparisons that really hurt. No one "wins" when we try to compare and make our grief worse than someone else's grief.

And, it's all pain. It all sucks. No matter what IT is.

In college, my dog died in my arms. I had her since fifth grade. Love her. She had cancer and was dying. The vet said we needed to put her out of pain, she had only hours. So, I rocked her while they put her to sleep. It hurt so much. I didn't think I'd ever go on.

Just because my daughter later died in my arms, doesn't change that pain.

Pain just sucks. End of story.

I'm not the only one hurt by comparisons. They rip apart communities. It's hard to write this post, because relating? Relating is GOOD. But, relating is different than comparing. Comparing means looking at a situation, usually quite quickly, thinking you know exactly what it's about it and boxing it up as such and such. That's never good.

Each and every one of you and everything you've gone through is unique and should be cherished.

Approach situations for what they are. Not something to be summed up and labeled, but something unique and fresh.

I promise to try to do the same. I might relate to help, but I'll never pour your experience or your pain into a little box and toss it aside thinking I know what it's about.

A dream to remember

2010-08-18T19:23:00.000-07:00

Surfing aimlessly around Cora’s pages.

Flash of her picture.

She’s home.

And, safe.

Loved.

A beautiful dream bubbles to the surface.

A dream from last night that I can’t quite remember.

But, remember how I felt.

The dream relived how I felt.

That week.

Happier than ever.

Love like I didn’t know could exist.

I remember that love.

Didn’t die with Cora.

My dream escapes me still.

I can’t think about it directly.

But, flashes come.

Happy flashes.

The enormity of the happiness that comes with being a mother.

Mother to Cora.

The dream slips between my fingers like water.

But, the small drops of water remaining are beautiful.

Small reminders.

A taste.

Even if small.

Of that gigantic love.

The love that drives me.

Is in the end.

All that matters.

I write this in a matter of moments to hope to capture that feeling, that the dream helped bring to the surface. The feeling I refuse to let die. The feeling is changing the world. Cora’s love.

The picture.

Dog Days of Summer

2010-08-17T16:02:00.000-07:00

Last weekend, Ben went away to an extended family reunion. Reggie and I weren't really up for meeting hundreds of strangers at a time, so we stayed behind.

Ben just happened to pick one of the hottest weekends of the year, so Reggie and I stayed inside and beat the heat with our favorite, ice cream!

I was worried about being alone for the whole weekend. Being alone can make the loneliness of grief much worse. Reggie kept me occupied though. We read a good book. Poor Reggie, he needs reading glasses.

And Ben's brother, Johnny, came over to keep us company and to check up on us.

I'm always surprised when something I thought would be hard, like Ben being away for the weekend, isn't as awful as I thought. Of course, I missed him, but I dealt with it okay. But, sometimes something I give no thought can have me in a fit of tears, like yesterday walking through the grocery store and seeing diapers at the end of an aisle, I nearly lost it.

I learned two important lessons this weekend. Reggie may be a bit spoiled, and I can learn to walk again. I can't get over Cora's death. I'll never heal. But, I can learn to live with it. Eventually. When I'm ready to start walking.

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Great Expectations.

2010-08-14T13:17:00.000-07:00

As writers, we’re taught to avoid clichés, only they’re cliché for a reason. They’re true.

One cliché about losing a child, or well, any big life change is that your relationships change.

And, guess what? It’s true.

This isn’t to blast anyone in my life particular. But, it’s an important topic for anyone that’s lost a child, friends of baby loss mamas, and anyone that’s gone through change. That means, all of us!

This week, a few people helped me come to a conclusion. Yes, some of my friends and family don’t know how to handle me and are being kind of jerky. But, also, I don’t know how to handle them and am being kind of jerky.

It’s like I’m a high school teenage girl pouting in the corner because her beau doesn’t do what she had in mind and doesn’t act how she thought. I expect my friends to call once a week. Even though I’ve always been an independent person and before this, didn’t have those expectations. I expect my friends to know that I need them more. I’ve told some of them as such, but haven’t been direct.

I also expect them to read my mood at the moment. I expect them to know that I don’t want to talk about anything but Cora. Or, that I want to act normal for a moment.

And, they’re getting to know the new me. I’m sure they love both me’s. Some of them might miss the old me. She’s gone. Maybe they wait thinking she’ll come back with time.

Grief lasts forever, and completely changes a person. How many times have I written that?

But, I didn’t believe it before this. I didn’t understand completely. Sure, I lost my father as a child. But, I was changed so young.

Please don’t think less of me for using a psycho babble term, but truly, this was a “break through” this week to know that as far as my relationships go, we’re all jerks sometimes.

I had a messy, wiping the back of my hand, tear filled conversation with someone I love much. One of those conversations that’s like unbuttoning your pants after Thanksgiving dinner when all done. The tensions and unspoken words. I know all my friendships won’t survive. But, I also know the ones that do will be double as strong.

And, since I’m mourning, I don’t have much time to rebuild. I only have time to shut the person out momentarily until I’m ready to deal with it again.
I’m finding expectations aren’t always so great.

It’s up to me to either find a way to lower or change them, or directly convey to my friends and family what I need. The other hard part? I’m so confused half the time, I can’t see what exactly it is I need at the time. But, at least now I see my relationships are changing and expectations on both side just aren't up to par. I'm not the person I was. Many of my friends and family might see that, but don't know what to expect. And, frankly, neither do I.

Dear Cora: Mean Mommy

2010-08-12T18:18:00.000-07:00

Dear Cora,

Miss you, bunches.

This is going to be one of my rambling notes where I just talk to you.

I’m confused.

I don’t even know what I’m confused about.
Just confused.

I’ve been feeling pretty down lately, think that some depression issues have set in. But, it’s hard to even know if it’s that or just another strange place grief is taking me.

I’m sorry baby girl, this is stuff I shouldn’t tell you. The dark stuff.
Only, I wanted to be one of those honest moms. Moms that don’t lie to their kid. I know it’s hard to be one hundred percent honest about adult stuff, but I think making up stories is sort of dangerous.

I saw a pregnant woman standing in the middle of a busy road smoking a cigarette the other day. Part of me wanted Daddy to step on the gas just to give her a scare, but the baby didn’t deserve that. So, instead I hoped she has a healthy baby and changes her ways.

I don’t have much to tell you, because there’s not much new. Still trucking along with your non-profit. You’re reaching a lot of people. A whole bunch of people. You’re saving lives.

I don’t want anyone to know how awful this, but sometimes I wish they could feel it for just have a second to get a clue. It’s beyond what anyone could ever imagine if they haven’t lost a child. It hurts like they might think times ten.

I don’t want anyone to feel this. I just wish people understood I guess. But, so many do try, and I have so much love and appreciation. They open up their hearts to this pain just to help, just to empathize.

It’s very lonely, Cora.

And, rather than understanding, some of the people I love most are pushing me away because I’m so awful sometimes. I can be awful and mean and grouchy. Only I don’t mean to be. I really don’t want to be so mean to the people I love.

It’s just that I get irritable. I don’t want to always be around people and talk about normal stuff and do normal stuff. I don’t want to made to feel guilty for not calling. I can’t handle hearing about anyone else’s problems. And, I know that sounds selfish. It IS selfish. It really is. But, that’s why I get irritable.

Because I try not to wrap myself up in a selfish bubble of my own grief. I try to think about others, but it’s just too much and I turn into a monster as a result. And, I get grouchy and mean. Yes, mommy can be mean, but only to the people I love the very most.

That’s why I love writing to you, that all just tumbled out amongst a million tears totally unplanned.

I’m sorry to put this all on you.

I sometimes wish I could wear a mourning veil and hide under it so people would know and my family would remember. I’m not any more capable than I was the day you died. I wish everyone could see that.

Love,
Mom

Another anniversary

2010-08-10T13:31:00.000-07:00

Everything with Cora seems to wrap around and wind together and fit perfectly. So fitting my blog anniversary ended up falling on an important date, 8.6.2010, eight months to the day Cora died.

I just found out the date a few seconds ago when I looked back to my first post.

The idea for this post popped in my head earlier today. I thought my "blogiversary" should be around now. For non-bloggers, blogs often celebrate each year on or around the time the blog started, often with giveaways or a post.

I thought what a beautiful, wonderful time to thank all of you. I thought I'd started in July sometime so was a bit surprised to see it was 8.6.09. This blog started as my pregnancy blog, I wrote a total of under ten posts, and had probably under ten readers (some of whom are still here, thank you).

One post isn't enough to go over what's happened in the year since this blog started, so I'm not going to try, but do want to thank you, anyone who regularly reads, or stumbles across even one post.

Thank you for...

Sending me notes complimenting my writing. It's hard to hit publish and now others (more than I'd ever imagined) are reading, but hearing I'm an okay writer? Makes it all easier.

Reading my saddest posts, even with tears dripping down the tip of your nose.

Understanding when I closed comments.

Coming to find me on Twitter or Facebook, or email when I closed comments to offer support.

Letting Cora into your life.

Sharing Cora's Story.

Helping us save lives.

Giving up.

2010-08-07T13:07:00.000-07:00

Since my first tweets about Cora's death, I've been painfully honest about what I feel. What this is like.

Same goes for this blog. I'm so surprised when someone says that they don't understand how I'm never negative. There's a dark side to all of this, and I've taken you all through it. Maybe because I always, always look for the light peeking through the storm clouds, some forget my dark moments.

This has been a dark, dark week.

I don't know when, or where, or why I first entered this dark, scary, difficult tunnel, but I did at some point.

I broke down into tears more than once, but two instances stick out. I seriously considered giving up. I considered taking down the blog and associated sites, going through the legal steps to break up the non profit and just giving up.

My poor husband got to listen to me rant about how I'd do this. Give up. I'd not even bother to use my education, but work in fast food and come home every day and cry into a bowl of ice cream.

It's tempting. Giving up.

I'm sometimes embarrassed by how honest I am on social media, in my Twitter stream and Facebook. I don't like vocalizing my fears, the negative stuff, because I know once it's out there, read by others, it only multiplies, just like good multiplies.

But, since the start of this, I have been so honest. I can't tell Cora's Story without bringing you along through the dark points.

Where am I going with this social media tangent? I forget.

I don't know why this was a bad week. Even before my travels.

I'm not giving up.

I won't ever give up. Because, of her. Cora.

But, it gets dark sometimes. It gets hard. I'm not one of those super inspiring woman you see in a movie or read about that never considered giving up. I'm me. And, sometimes, I not only feel giving up, sometimes I'm determined to give up. And, have to talk myself out of it.

Give me a moment to throw a pity party. This is hard. Super, super hard. Like I don't know how to even go on hard. Working for Cora is what gets me through, but at the same time, there's added stress and lots of disappointments that come along with that.

I get so embarrassed when I let people down, back out of responsibilities, and I did that this weekend. I was so overjoyed to find out I'd won a BlogHer pass. I never even went to collect it. I couldn't. I let down the people I was so anxious to meet at the conference, people like Emily that were there through my pregnancy with Cora. To me, letting people down is the worst thing I can do. Enough to make me give up. But, I can't let down Cora. So, I won't.

So, since I can't give up, it's time to hold my face to the light at the end of the tunnel. I know it's there. I know I'll come to it eventually, so I have to just keep moving in its direction.

I remember the light is always, always, always there.

I'll never give up.

She saves lives now.

2010-08-05T18:21:00.000-07:00

I had to tell a lot of strangers about Cora today. It was hard.

At a blogging conference, a natural question is "what's your blog?"

My chest tightened and the first few times I think I squeaked out, "my daughter died."

But, I really wanted to yell out, "my daughter died and now she's saving lives." Maybe, next time, I will.

I jumped on the chance to drive to New York from Indiana, both to meet so many people I admire so much, and to get away.

I like to get away.

I sometimes wish I lived away. But, then, I wouldn't be getting away.

Getting away, I remembered on the drive what's important. Cora. Ben. Ben and Cora. Focusing on them. Sharing Cora's Story, knowing it's not just a story of a baby that died breastfeeding. It's the story of a little person changing the world.

I've heard a few times this week that there were (are?) rumors Cora suffocated. I'm working on getting statistics. I'm a huge breastfeeding advocate. Babies don't die because of their mother's breasts. Their mother's breasts save their lives over and over.

This is one of those drifting posts I just let float along. Like our car floating through the mountains on the interstate. It was a big overwhelming day, but that's not all bad.

I'll try to update more about this trip, the fun Dinner's on Us event, which included the Bloganthropy awards, the BlogHer conference tomorrow, and all in between.

But, for now, just a small update.

Cora saves lives.

Oh, and it's Breastfeeding week (that's not the official title, but it's a week for breastfeeding education). Seriously, like I said before, breastfeeding saves lives, too. Try it!

An early announcement of our August Wear Pink for Cora plans.

2010-08-03T15:20:00.000-07:00

While brainstorming this month's "Wear Pink for Cora" good deed, a memory came floating back to me.

The last weeks of my pregnancy. Ben cooked Thanksgiving Dinner because I was feeling yucky, and gave birth just a few weeks later. Ben tied my shoes, and rubbed my back, and was there for me. I didn't know how I could do it without him.

After Cora was born, he was a true partner, playing with her when I took naps and feeding me and just being there for me.

We talked a bunch about how we wanted to give back. We said over and over we just didn't know how single mothers, or mother's with spouses away in the army or business, did it.

He made it all so much easier for me. We talked about finding a way to volunteer for these moms.

When Cora died, I forgot all about the idea until last week. Next month, I'm going to find something to help a single mother.

I hope some of you will join me, if you hear of a single mom bringing home a baby, drop off a meal.

I'm still in complete awe of single moms. You are my heroes.

Leaving the comments open on this one to get your ideas and thoughts, and hear your stories.

Dear Cora: Our wedding story.

2010-08-01T15:19:00.000-07:00

Dear Cora,

Mommy and Daddy's very first wedding anniversary is tomorrow, August 2nd. Remember? You were there.

I knew I'd have some explaining to do one day, just didn't think it would be like this.

The story of our wedding day goes way back to January 2009.

Daddy got down on one knee in the snow and asked mommy to marry him. Mommy said yes, of course. Cora was no where in the picture yet.

Mommy posted this picture of her engagement ring right after Daddy asked her to marry him.

Mommy and daddy planned a wedding for a whole year and half away, come to think of it, right around this time, fall 2010.

But, then on Easter Sunday just a few months after daddy asked that question, mommy took a little test that changed everything. Cora was on the way! I remember one of the first things I told daddy was that when you were old enough, we had to make sure you knew daddy and mommy were engaged when we made you, and very much in love, and totally planning on getting married anyway.

So, now what? We didn't want to wait until after you were born to get married. We wanted to get married when you got here. So, for the next few months, mommy tried to plan a wedding while pregnant. It was a disaster. We just couldn't afford much, and mommy was a little moody and would just start sobbing and freaking out when the wedding plans didn't come together.

We settled on getting married in a park and then having a reception in another park. We even put a deposit on the place. I think our wedding was set for Labor Day, 2009. Mommy made invitations and worked, worked, worked. But, she would wake up in the middle of the night and pace the halls and started freaking out. Planning for a new baby and planning a wedding at the same time just weren't for her.

So, we called off the Labor Day wedding and instead found someone to marry us in a park in the middle of downtown Indianapolis. The theme of the day was as easy as possible. No frills. Just mommy and daddy next to a fountain in the park. No reception.

Mommy loved it.

You can even see yourself in the picture, look at mommy's baby bump!

It was a gorgeous day. Mid 70s, sunny, slight breeze. Just perfect!

Oh, and you'll like this one. Guess what mommy's wedding colors ended up being?

Pink!

That was an accident. Mommy's aunt made a flower bouquet for her and was asking what color mommy's dress was. The dress was gray and pink, something that was comfortable and fit and cheap. So, all the sudden those were our "colors." They were going to be black and red or yellow and gray in case you were wondering.

I was about five months pregnant with you at the time. My feet swelled, and I think I already waddled some. Good thing I didn't walk down the aisle, or else I would have been waddling down the aisle.

And, that's the story of the day mommy and daddy got married.

Love,
Mom

P.S. I shared the mushy gushy way I feel about daddy on my blog.

Dear Cora: Eight Months.

2010-07-30T16:18:00.000-07:00

Dear Cora,

Eight months. Almost as long as I was pregnant with you. It seems like just yesterday that you were born, but also a million years ago all at the same time.

Time stopped when you died and sped up at the same time. Time is something that spins by at a ferocious pace and meanders along like a falling leaf all at the same time.

Eight months. I wonder if you’d be crawling. Probably so. I miss you. I wish you were here changing the world beside me. I wish people were cooing and laughing at you. You were making the world a better place with your beauty and love here.

You’re still making the world a better place. You are. Every month, we remember you and do something good. We’ve invited people to join and to wear pink as a reminder. The pink is like a knot around your finger. I hope, and truly do believe; people put on the pink and throughout the day look down with a smile and pass on that smile to someone else with an act of kindness.

This month, we’re donating to a food bank. I drove all the way there today to realize they’d moved across town, so the actual donation will wait until Monday.

Spreading your message with our food bank donation.

It’s not much. Probably just enough food to feed a family for one day. Right now, it’s what we could do.
But, nine months ago, I wouldn’t have ever scrounged my cupboards and donated. So, it’s huge at the same time. It’s the little things. Realizing it doesn’t take a lot of money or time to be kind.

Life is a whirlwind. I hope one day to step back and really be able to look at the way you’re making a difference. Wear Pink for Cora spills over to the rest of the month. I get sent stories almost every day of how you helped someone realize they too can make a difference.

I never did get to watch you crawl. But, I do get to watch you move mountains through the trickles of good and kindness you inspire every day.

I love you so much.

Love,
Mom

P.S. I want to show you this brochure I made. Hopefully, it will help to make sure no other mommy and baby find out about congenital heart defects from the coroner either!

Comments are closed.

2010-07-28T11:44:00.000-07:00

Often when I write posts here, I cry.

Sometimes they’re so draining after I’m done I feel exhausted. Like I’ve run a marathon.

I don’t filter. Straight from raw emotion comes my blog posts.

I could just write and never publish, but I need to share, and I think I’m helping at least a few.

Cora didn’t meet many people. Not many got to see her shiny beautiful radiant self. It’s up to me to share that.

My motherly instincts force me to go out each day and spread her story as much as I can. It’s part of being a mother. My child is dead, but I still want to protect her. And, for me that protection is protecting her legacy.
Those of you that know me from other social media venues know that I love talking to people about Cora, or relating to other grieving moms, and even following other babes as they grow up and supporting their moms through fevers and sleepless nights.

Online, I’m still a mommy.

This is long winded.

I’m going to be closing comments on most of my posts here. But, I still want to talk about them. I’d love nothing more than to discuss them on Cora’s Facebook page where I link to each post or on Twitter or even via email.

But, there’s something about writing a post with tears flowing and then getting comments that are off base or unintentionally hurtful.

I’m very lucky. I don’t get much spam and I haven’t had many intentionally hurtful comments.

People are busy, they don’t come and read my entire blog. They don’t know I’m not Christian and get hurt when people force their beliefs on Cora. (I wrote a whole post about this, I’m another religion, but that doesn’t mean we can’t be friends). And, as much as I share in this blog, I hold some things back. So, people assume it’s okay to tell me to have another child to fix everything, not knowing I’ve miscarried just weeks before. People read quickly and want to relate so they post something off topic about a baby suffocated from feeding. That’s not what happened to Cora, and insinuating so is enough to make me lose my mind.
It’s difficult to post something so raw and emotional and then get a “drive-by” commenter that spoils the whole post for me.

I’m honored for your support. Lucky that so many let me share my daughter with them. That’s my way of saying, “let’s still be friends.”

So, find me somewhere else and I’ll open a fresh diet coke in a can and we’ll chat.

Focus

2010-07-26T17:14:00.000-07:00

It's easy to get off track. Caught up in things that seem sooooo important. But, after a little reflection, aren't so important at all.

That happens to me as the frustrations and problems of starting an organization come up. But, then I look at this face.

Beautiful even when twisted from crying. I remember that silky hair and beautiful soft skin and focus on Cora's mission.

I've let Cora lead the way with all of this. I noticed her story reaches out to pregnant woman and moms and that they need us. I remember that Cora's love is like a growing flame and I focus on Wear Pink for Cora.

It's an important lesson. If I focused on the negative comments, I'd be worthless.

Focus. How do you keep it?

In the middle of a frustrating day, I stepped outside to photograph the roses. That's how I focused today.

That Night.

2010-07-27T13:46:00.000-07:00

You all know the night I’m talking about. A few weeks after it happened, I shared every last detail. I don’t think I could do that now. Share it from start to end. Whenever it comes up in conversation, I always trail off… never tell the story from start to finish.

I’m crying already. I often cry when I write posts for this blog. You get all of me here. And, I get out what I need to. It works. I have trouble talking about things but can always write.

I know you all know about that night because even after all these months, that post still receives a lot of traffic daily. And, it’s a big part of her story, I link to it at the top of the blog I understand why people want to know about that last night. They see a beautiful baby and hear she died suddenly, of course they want to know.

I don’t want to say I have it worse than anyone or that Cora’s death was more traumatic, but when people say I’m sorry you lost your baby, I want to scream at the top of my lungs, and tell them, no, you don’t get it. I’ve come across a few people with similar stories that their child was seemingly healthy and died suddenly, but never that she was on their chest feeding happily.

Breastfeeding is one of the most magical parts of having a newborn. I loved it. I thought it would be “weird” but it wasn’t.

Everyone that loses a child has those bad memories or pictures in their mind, I’m sure. I can’t watch horror movies anymore. I go pale when people talk lightly of death or gory things.

I saw it. I held it.

I lived a horror movie.

I don’t know why I’m rehasing this on my blog today.

Maybe because I’m sure it’s one of those unanswered questions. After reading that post, you must wonder how I feel about living through that nightmare.
No, it’s not easy.

I try my hardest to not think about it all the way through. Images and sounds and feelings from that night come up.

My screaming she’s not breathing, Ben asking “are you serious?” in this voice I’ve never heard. For some reason that sticks with me.

I don’t understand.

I’ll never understand.

And, I think many of you shake your heads and feel the same.

It is after all, that night, that brings us together.

About congenital heart disease

2007-02-05T11:02:00.000-08:00

I'm still early in the learning process. Cora died only a few months ago. Before she died, I'd never heard of congenital heart disease. Here's some of what I know so far:

Impact of Congenital Heart Disease

Congenital Heart Diseases are also known as congenital heart defects. Over 30 known congenital heart defects exist.
Often the abbreviation, "CHD" is used to refer to congenital heart disease.
According to the Children's Heart Foundation, CHD is the Number ONE baby killer.
CHD is also the most prevalent birth defect, according to the March of Dimes.
About 1 in 100 babies are thought to be born with the birth defect in the United States. Different organizations use a different number, I've seen it as high as 1 in 70.

How do you know if your baby is one of the 1 in 100?

Some CHDs are picked up in utero by a regular ultrasound.
Others can be picked up by a Level II ultrasound.
Some say a fetal echocardiogram should be conducted on every mother and child to test baby hearts.
Others want an echocardiogram, test that uses sound waves to get a picture of the heart, for every newborn.
Right now, Cora and I lobby for a pulse oximetry test on every baby. This test is cheap, quick, non-invasive and should be standard in newborn screening. A couple of groups are working on making this test standard. In Missouri, Kelly from CHD Babies is working for Chloe's Law, making pulse ox mandatory before discharge.
If you're pregnant, use the Earth Mama, Angel Baby birth plan creator, it includes getting the pulse oximetry test for your newborn and reminds you to do so after birth.
Some CHDs can't be detected by known methods. So much more research is needed. Spreading awareness leads to more research funding.

What can you do?

Until pulse oximetry tests are standard. You can tell mothers and fathers to ask their doctor to run a pulse ox on their newborn between 24 to 48 hours of age.
I developed this flyer for pregnant woman, for you look at and pack in your hospital bag.
Spread the word. Awareness means more support for much needed research funding. Awareness means less mothers and fathers will find out about CHD from the coroner.

Please note, I know this list is not comprehensive. And, some people debate the numbers. I've taken everything from reputable resources. If you have questions, email me, kbrite@gmail.com.

More information

CHD Babies- By a mother with a CHD baby, Chloe. Working for standard pulse ox in Missouri, and includes well researched articles.
Children's Heart Foundation- Working for more research funding and awareness.
Join the Fight-CHD- Run by Bobbie-Jo Stewart, an online home for families to gather and get support.
Congenital Heart Information Network- Great information about CHD Awareness Week.
Mended Little Hearts- Support for CHD families!
Athletes4Heart- Nels biked across the country to raise research funds. Read about his journey.
Email me your favorite CHD resource or leave a comment below!

With a little help from her friends...

2008-02-01T08:26:00.000-08:00

Thanks to these blogs and Web sites for supporting Cora. I've been so overwhelmed by all the amazing support, send me an email so I remember to list your blog, kbrite@gmail.com, or write a note in the comments below.

Cora's friends who don't have badges or buttons for their site:

Our Typical Life
Benji's Broken Heart
Lincoln and I
Lucky 10 Awareness Pendants Etsy shop
Jacob's Special Heart
Three Ring Circus
It's a BOY!
Our First Pregnancy
Miracle Pending
Life's What You Make It..
Anderson Family
Life With My Kids
IrishsaMomSpeaks
McManus Family Childcare
Adventures of a New Mom
Felissa Hadas
Mom's Gym Bag
Diary of a Cardiac Mummy
Rebecca's Room
Naomi's Nest
HappyMom4Life
Our Family
Christopher's Story
Allie Sakowicz
P.S. House
Chaotic Mama
Blue Moon Girl
Musings of a Marfan Mom
Alara Advocacy Foundation
The Haute Single Mama

Share

The picture

2010-07-25T07:09:00.000-07:00

I thumbed through the example pictures the hospital photographer left, thinking out loud to Ben. We do this a lot. He never tells me not to buy something or cares, but I always have to do a verbal pluses and minuses list about every expense. I’m frugal, okay, a cheapskate.

When we’d taken the hospital tour, I’d said no way were we going to spend money on the pictures. Just too expensive. But, I looked at Cora, and said to Ben, “Maybe we should, she’s only a newborn once. This is our only chance to have a professional picture of her at a few days old.” He repeated what he said a few times that conversation, and often in our relationship already, “Whatever you want. I told you, you can always buy whatever you want.” I knew I didn't have to ask him, but always like to talk things through out loud.

One picture I decided. And, oh am I glad I did. Turns out she only lived a few days of course. Some people have asked if she was alive in her photo or if we knew she was sick. She was very much alive and we thought in excellent health, having passed every exam with flying colors.

The hospital photographer was a baby whisperer. She led us through the hallways out of the maternity center, everyone stopped and starred and smiled at Cora on our way. I beamed at her and at them. Yes, she was the most beautiful baby. We settled in a small room, but the most comfortable, cozy, loving room I’ve ever been in. I put Cora on the photographer’s table and watched as she stroked Cora’s cheek. A beautiful lullaby played softly, but not loudly enough to soothe the soul and calm the mind. The room was warm and the lighting pleasant.

Cora looked so peaceful and calm. Ben and I grabbed each other’s arms and beamed like only new parents can watching their child get their first professional pictures taken.

The pink thing on her back is a bow. While flipping through the books, I’d settled on it. Very out of my style, but felt perfect. One of Cora’s “things” was that she was due in the middle of everyone’s birthdays. Countless relatives, including both grandmas, and my birthday was only two weeks before her due date and Ben’s two weeks after. Turns out she was born on my aunt’s birthday, November 30th.

I decided to get the bow since she was our birthday present that year.

Our gift.

Tears stream down my face as I write this, because the memory is that good. That wonderful. They aren’t really happy tears, I’m not happy, but they’re tears brought out by such a strong force, that moment.

That’s the story behind the picture you’ve seen perhaps hundreds of times.