Shining Stars

In the days and weeks that have passed starting with the loss of sweet Wyatt, it seems there have been a flood of babies and kiddos passing from complications of HLHS.  Wyatt and Travis have by far affected me the most as I talked with their Moms, consider them friends within the heart community and we have rooted each of our babies on.  How much of an impact has it had?  I have been feeling like a completely different person, one sort of robbed of happiness and wondering when the cloud was going to lift. 

But in the midst of the sadness and darkness brought by all those losses, there are shining stars that give light and hope to go on.  Let me start with one of the newest members of the HLHS club and she's a rockstar...little Brooklyn Rose was born in Boston last week all 6lbs and change of her and was in for her Norwood about 12 hours after birth.  There wasn't any rush, it just so happened that the doctors had an opening in their schedule and she was ready so off she went.  Wow, was she ready.  Now 7 days post-op, her chest is closed, she's completely extubated, only has one chest tube left and yesterday was given her first bottle.  I've never heard of a baby making so much progress so quickly post-Norwood.  She may be small but she's a mighty one and that makes me feel so much better.  

Then we have Mr. Bodie, he just celebrated his first birthday this past weekend.  Little man knows how to dive into his cakes, he literally picked it up and crammed it all in his face to make sure he got all the cake he could.  Bodie's story started off rough, in fact I want to say he was nearly 9 months old before he had spent as many days at home as he had in the hospital due to infections, setbacks, etc.  (I don't mean to shorten or undermine the severity of his complications by the etc).  It's just more than sufficient to say that he has more than his fair share of things go wrong and yet, there he is happy, bright eyed, Mama's boy who's now crawling around getting into everything.  Bodie - if you could please come teach Olivia the crawling technique, we'd be much obliged. 

Closer to home, there is our buddy Jonah who finally had his NG tube pulled early last month and since then it seems he is like a flower after a good rainstorm.  His personality has done a 180 and he's now really been able to enjoy life, eat everything by mouth and move into solids.  His latest pics show some major chubbage going on.  Now we're just hoping for an end to flu season so we can do some playdates with these two little warriors. 

Keaton is our other buddy with whom we're always bonded with, after all Olivia and Keaton were next door neighbors for their entire stay in the PSHU following the Norwood.  Keaton and Olivia are like fraternal twins in the sense that they have absolutely nothing in common about them, but developmentally they're always doing the same things and meeting the same milestones.  His mom and I laugh when we get them together about how similar they are and yet, quite their own little people.  Keaton has the most beautiful blue eyes and will be quite the ladies man in the future, but for right now he's flirting with the idea of crawling.  He eats basically anything that his Mom puts in front of him and has incredible verbal skills. 

Last but not least of course is my own little star - these days she really is thinking that she's the center of the universe.  Not just ours, but anyone who has the gift of her presence.  She is sort of demanding of attention and I'm hoping it's a little bit of a phase.  Nighttime routine has gone out the window and I really don't know why or how it all happened.  I do know the other night at 3 am when I went in there to see why she was having a meltdown she greeted me with a smiles and some clapping.  Not the worst way to wake up, but certainly not what I wanted from Missy at 3am. 

These beautiful little ones and so many more like Aly, Chase, Jacob aka Jake, Josie, Hope, and all the other little heart kiddos we're tied to are the reasons for that dark cloud that's been following me to get kicked to the curb.  No one knows what our future holds, but when our bright hopeful future is right in front of us like these little ones, you just need to savor the moment.  I need to take some more of my own advice.

The Way to My Heart

It was just Olivia and I last night and she was kind of cranky so we did an early dinner of apples & squash, washed it down with a few ounces of formula and I tried to lay her down.  She wanted no part of it, realizing that it was still about a half hour earlier than her normal bedtime, so I picked her up and we sat in the glider for a little while just listening to her lullabies until she got antsy and I knew she still had at least another hour in her before she'd go to sleep for real.  So I took her in our room and plopped her in the middle of the bed and we played. 

She actively went on her tummy and scooched herself around a few times, mostly over me like I was an obstacle course, but hey, whatever works.  I gently pushed her back and took a stuffed animal and pretended like it was jumping on her tummy to which she greeted with big belly laughs.  She'd position herself and lay her head on the pillow facing me and just smile and pat my cheek while we looked at each other.  But the best moment by far of the night was towards the end when she was getting sleepy she threw her arms around me saying "Mama" and gave me a kiss.  It's unfair to try to even describe the feeling I had in that moment, but suffice it to say that everything else good pales in comparison to something like that moment with your baby.

Give the Gift of Life, Become an Organ Donor

This weekend, yet another heart family had to say goodbye to their sweet child.  Yet, in the midst of all their sadness and grief, they kept in mind that they would be able to help others by donating their child's organs to help save other lives. 

So, in following their example, make sure that you have selected on your license registration that you want to be an organ donor.  Also make sure that you let your immediate family know your intentions as well so that God forbid if the time comes they can make sure that your wishes come to fruition. 

Sorry, I know that's a little heavy to start a Monday, but I look at it like this: someday in the not too distant future Olivia may need a new heart and her second chance at life will only come from another family making a generous decision of their own to share their loved one with others. 

Give the Gift of Life, Become an Organ Donor

A Mother's Heart

Children and Mothers never truly part-
Bound in beating of each other's heart
By Charlotte Gray

For all those mothers out there that love their little ones more than life itself whether they are here with us or watching over us.

A Unique Place to Be

With the wonders of medical technology these days, having a baby is a little different than it was say twenty years ago.  A baby can be born via surrogate, from donor eggs and sperm, and I'm sure a host of other ways that I'm not even too familiar with.  In Olivia's case, I gave her life, but our care wouldn't have been enough to keep her going to where she is today.  On our last clinic visit we went up to the PSHU to visit some of our favorite nurses and happened to run into our doctors.  Dr. Ilbawi was also making rounds and stopped to by for a rare chat.  One of the nurses suggested that we take a picture and called us "Olivia's Care Team". 

I thought it was a very accurate assessment of the situation, to have a picture of the people that created this life, but then of the man that took that little life hanging in the balance and giving it an extension against stacked odds.  When I went a little further in my thought process, this care team not only includes Dr. Ilbawi that had his hands on Olivia's heart twice already; but of all the nurses working round the clock, radiology techs, patient care techs, I mean there's been at least 50 different people that I could think of that have had some instrumental role in getting Olivia to where we are today.  That's a humbling and little sobering thought to think of any one of those people weren't around maybe we wouldn't be where we are either. 

As you can see, despite the fact that it was truly a wonderful moment for us as parents to be with Dr. Ilbawi, Olivia didn't quite feel the same.  To her, he was just another guy in scrubs out to do something unpleasant to her as a patient.  Dr. Ilbawi was a good sport about it, he just wanted a little loving from Little Missy.

Hard Question

I was reading the blog of a fellow heart mom who lost her baby last year after a courageous battle against HLHS and was struck by a question she put out there.  It was probably over a month ago now and I wake up asking myself the same question and to this day I'm still not really sure of my answer.  Her very profound question felt like it was directed at me even though I know she meant it broadly.  It was simply for all of us that go on to say how blessed and thankful we are in our current lives - would we feel equally as blessed and thankful if things hadn't turned out the way that we wanted? 

I really took that to heart, such a simple question and no simple answer.  Would I feel as blessed and thankful with the world if I was in her situation and had to bury my baby?  I'd like to say that I would, but if I were being a 100% honest with myself and everyone else, the answer is No.  If things had gone differently and Olivia had only ever lived to see the inside of a hospital, I would probably be a really miserable bitter person right about now. But I have this beautiful little person that wakes us up in the middle of the night if for nothing more just to make sure that someone's there to hear her cries.  Monday night she absolutely refused to go to sleep for whatever reason and I got to rock her to sleep for the first time in ages and I was struck by the fact that it could be one of the very last times that I get to do that with her seeing as how she's getting so big so quickly.  Those are the moments that define my true feelings of being blessed and thankful for the time that we've been given. 

There's a song out on country radio right now that gives me goosebumps every time I hear it and especially during heart awareness week it has extra meaning...it's by The Band Perry and called "If I Die Young".  I bolded the words that I find particularly applicable to all the parents that have lost children or fear it like a heart parent does. 

If I die young bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
oh oh oh oh

Lord make me a rainbow, I’ll shine down on my mother
She'll know I’m safe with you when she stands under my colors, oh and
Life ain't always what you think it ought to be, no
ain't even grey, but she buries her baby

The sharp knife of a short life, well
I’ve had just enough time

If I die young bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

The sharp knife of a short life, well I’ve had just enough time

And I’ll be wearing white when I come into your kingdom
I’m as green as the ring on my little cold finger
I’ve never known the lovin' of a man
But it sure felt nice when he was holding my hand
There’s a boy here in town says he’ll love me forever
Who would have thought forever could be severed by

The sharp knife of a short life, well I’ve had just enough time

So put on your best boys and I’ll wear my pearls
What I never did is done

A penny for my thoughts, oh no I’ll sell them for a dollar
They're worth so much more after I’m a goner
And maybe then you’ll hear the words I been singin’
Funny when you're dead how people start listenin’

If I die young bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song

oh oh

The ballad of a dove
Go with peace and love
Gather up your tears, keep ‘em in your pocket
Save them for a time when your really gonna need 'em oh

The sharp knife of a short life, well I’ve had just enough time
So put on your best boys and I’ll wear my pearls

1 in 100 - Spread Awareness, Spread Hope

My Heart Beats for Olivia

You've seen the all the stats thus far about CHD's and I could post more, but I think that would become redundant.  Olivia celebrated the Super Bowl with my extended family this weekend, but I think she was really pulling for the Steelers because she was in one of the worst moods I have ever seen her in.  We threw in the towel before halftime and decided to head home where little missy ate some food and promptly went to bed all before 7:30 which is virtually unheard of.  Weekends are becoming a little bit of a challenge, I think she really knows that when Brian's mom comes over to watch her on Fridays that it's followed by two days of Mom and Dad home.  Subsequently, she wants to spend every waking moment with us and that means that she is really fighting naps in every way shape and form.  Saturday she was fantastic, fun and engaging, Sunday she went to the dark side (that's the best way I can describe it). 

While we were at the party and trying to keep her entertained it was quite clear that she is really outraged when anyone is eating in front of her and she has nothing so I offered her a Ritz cracker.  My mom looked at me and asked if I had given her one before and I said nope, but no time like starting now.  She asked me again was I sure that she could handle it; what if she choked?  I said the only way we would know was by finding out so I gave it to her.  EIGHT Ritz crackers later it was quite clear to everyone that she will do just fine with something so dry and crumbly and not have to worry about choking.  Maybe it was a little early and she doesn't have quite as many teeth as a baby normally would to give them something like that, but my rationale whenever I'm letting her try something new is that she hasn't come all this way in her short life for me to deprive her of life experiences. 

With that said, I found myself talking to one of my best friends last night and something came up about riding a motorcycle in the course of conversation.  I said how I loved hopping on the back of a bike and going out for a ride and then I looked right over at Olivia playing away and said that was an experience I'd really like her to skip.  Totally tongue in cheek of course, but I was amused with myself that just 24 hours later I was using "how far she's come" as a reason to skip out on taking a risk and playing it safe.  Sigh

I don't know what it's like to have other heart healthy children, but I do know that from the moment she was born a little piece of my heart now lives outside my body in her.  I can imagine that lots of parents feel that way, that sense of being incomplete until you're with your children whether they're awake or sleeping in the next room over.  My heartbeat had a rhythm before she was born that probably said more "me, me, me" and now it beats for Olivia.

Heart Awareness Month

February is Heart Awareness Month and today is Wear Red to Support Heart Awareness...sorry better late than never!  Below are some facts that I poached from another mom's blog.  I promise I'll update this weekend with some more pictures of Liv and give you an update of her latest and greatest.  Rest assured she is changing daily.  Sometimes I feel like by the time I get home at the end of a work day she looks completely different than she did when I put her to bed the night before!

Facts of CHD's

Incidence, Morbidity & Mortality

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD - HLHS is one of the rarest and complicated heart defects out there
• Congenital heart defects are the #1 cause of birth defect related deaths
• Congenital heart defects are the leading cause of all infant deaths in the United States...sadly many defects are still going undetected during pregnancy and these unassuming parents take home what they think is a healthy baby only to have a crisis in the first few days of life that many times leads to death
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities- this can be from poor oxygen throughout their bodys from their compromised circulation or a result of numerous surgeries, bypass and/or brain bleeds
• There are an estimated 2,000,000 CHD survivors in the United States
• For the first time, more than 50% of the CHD survivors are adults - LOVE THIS!
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime - Olivia is 10 months old and has had two open heart surgeries and one heart catherization, she needs at least one more surgery and will require catherizations throughout her life for diagnostic purposes
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD

CHF

• The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research
• The Children’s Heart Foundation has directed $3.9 million to 41 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada
• CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book
• CHF has established eight Chapters and has volunteers in many US states

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease
• Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem
• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research