REPOST: The Miracle of a Birthday

In honor of Heart Month and CHD Week next week, 

I am reposting this entry to share with other families...

Having a child is life changing.  Being able to create life is a miracle in itself.  Imagine having a child with a life threatening illness/birth defect.  You rethink every thought, decision, and experience you've ever had.  Being told your newborn isn't breathing properly and will likely die is life altering.  Like a movie, every moment of your pregnancy is replayed in your mind.  Did you take too many Tylenol?  Should you have had that one drink before you realized you were pregnant?  Why?  Why me?  Why her?  Why now?  Those are the questions I asked myself over and over after giving birth to an amazingly beautiful baby girl, who was critically ill and being transported to a children's hospital two counties away from me on her birthday.

I went in early that morning for a scheduled c-section, with little worry about anything other than the pain of that awful needle that would be entering my back soon.  My husband had brought himself a Mountain Dew on the way in and I sneaked a few sips while we were waiting for my room.  I felt confident in my OB's abilities.  I felt confident that I would be okay.  This was my second pregnancy and my second c-section.  I knew what to expect and I knew that as long as I had my new baby, I'd be okay.

Her birthday was May 29th, and it would end up being a hot, humid day.  I didn't get to hold her or take pictures with her.  While I was strapped to the operating table, they brought her in briefly to show me she was fine and then they whisked her back outside with her daddy by her side.  I felt good.  Everything was fine and she was fine.  Daddy got a picture with her outside in the hallway and then the nurse took her back into the room adjacent to the operating room I was in.  My OB worked on me for a while.  We'd decided that two children was our limit and I was undergoing a tubal ligation.

Once back inside of my room, I was so excited to see her.  I couldn't wait to hold her and take her picture so I could share it.  My mother would be bringing her big sister to see her later that day, with her "I'm The Big Sis" t-shirt I'd bought for her to wear.  The nurses kept telling us she was fine, she just needed some oxygen.  It was normal, considering she was born a few weeks early and the medicine from the c-section could make some babies need extra help.  Minutes turned into hours and I finally sent my husband downstairs to get lunch.  There was no reason for him to wait around.  Our baby was fine.

I should have taken more pictures.  Her birthday was a special day.  I barely remember seeing her before she was taken by ambulance to another hospital.  A small framed, awkward hospital pediatrician came into my room.  I didn't realize she would be the one to change my life.  She asked me my name and age.  I knew by her body language and tone of voice that something was wrong.  I thought maybe she was mistaken as she told me of my sick newborn.  She had me confused with someone else.  There had to be another "Smith" in the same ward.  Right?  What does she mean, she's critically ill?  She will not make it if she isn't moved to another hospital... What?  I remember turning away from her and looking out my window and feeling the pain move through my body as her annoying voice kept pounding at my ears.  It was like no pain I've ever felt before.  My heart was literally falling out of my chest and onto the floor.  That's how it felt.

How did this happen?  This was "her" birthday.  How is this possible?  I cried and cried.  I begged the doctor to please tell me it was a mistake.  I asked for her to find my husband.  She just stood there, glaring at me as if I had two heads.  I'm not sure if she had never dealt with that type of situation before or if my reaction was what stunned her.  I didn't care.  A kind nurse had heard my crying and ran into my room to scolded the doctor for telling me such horrible news, while I was alone.  The doctor left and the nurse called down to the cafeteria to locate my husband.  He immediately thought I was in trouble.  He ran back to my room to find me inconsolable.  I couldn't speak.  How could I tell him that his baby girl was gravely ill?  Who wants that job?  Thankfully, the nurse was able to explain what was going on in a kind, gentle way.

Hours went by, while the staff tried to locate an ambulance to transport my baby on her birthday to a hospital we'd never been to before.  I was so distraught, as was my husband.  I cried, he stood silent.  They asked if we wanted to see her before she was moved and we said yes.  It was brief, but it changed me.  She was in what looked like a plastic box.  An incubator.  Her little body was hooked up to all kinds of battery charged devices.  I couldn't see her very well, but I took a picture anyway.  It was blurry and the flash reflected against the wall, creating a pretty crappy picture.  We didn't have time to go back and do a redo.  They were in a hurry.  I never had a chance to hold her and tell her how sorry I was for ruining her birthday.  It was my fault, I thought.  I must have done something to deserve this.

I asked my husband to go be by her side.  There was no reason for him to stay with me, when our baby was alone and in a strange place.  He wanted to go and became my sole communication between my hospital room and hers.  She was put through all kinds of tests and then we received the news that she was missing part of her heart.  She'd been born with Hypoplastic Right Heart Syndrome or HRHS.  There were a few other issues with her pulmonary valve and tricuspid valve, but she'd need surgery immediately.  What a way to spend your birthday.  In a medically induced coma, in a strange place, and without a mother. I begged to leave my hospital, so I could be near her and my OB obliged me and sent me to the children's hospital for one night, so I could recover near her.

When I saw her again, she looked different.  She was bandaged up, bloody, and hooked to even more machines than before.  I felt the earth fall from under me, as reality hit me.  It was hard looking at her in that state, but also a miracle to see her still hanging on.  I was able to hold her soon after seeing her again.  She seemed much smaller this time and even more beautiful than before, if that's possible.  I mourned the loss of our first pictures together, her hospital picture, and having pictures of her with her big sister.  I celebrated the miracle of life, strength, and the will to survive.  She instinctively knew to fight and keep fighting.  Her spirit was strong and she would show us time and time again that she was not giving up anytime soon.

My baby girl celebrates her 6th Birthday today.  To date, she has undergone three open heart surgeries, numerous cardiac catheterizations, procedures, and tests.  She's been hospitalized twice for seizures and has had dental surgery in the hospital.  Just this past week, she came down with a viral infection that kept her from enjoying her birthday party and out of school for three days.  I took her to the doctor twice and we sat in a procedure room all day on Tuesday, getting intravenous fluids to keep her out of the hospital.  It was a miracle we didn't need to go to the hospital.  Each day, we learn something new about her.  Life would not be the same without that feisty, stubborn, quick witted, little pistol we call Sydnie. She changed our lives forever on May 29th.  It was a true miracle.  A birthday miracle.

Then and now....

We love you Sweet Pea!

Two Bees Tutus Review

For the month of May, Two Bees Tutus is helping our local CHD support group, Triangle Mended Little Hearts, raise money.  I have to give them props for working one on one with me, the customer, to ensure that my order was to my liking and that everything was correct.  It's so nice to have great customer service!

They made my 8 year old daughter's idea a reality when they took her drawing and made it into a painted piece for her wall.  The Hair Bow Holder is going to be the focal point of my daughter's Aqua Green wall!  My daughter came up with this idea:

And this is what Cynthia and Theo created for her:

Absolutely gorgeous!  Don't you think?  I wish I could have had one of these as a child.  This is something she will be able to keep for years and hopefully, hand down to her kids one day.

My 5 year old, almost 6 year old, wanted a Tutu for dressing up.  She loves to pretend she is a ballerina or a princess, so she chose something she could play in.  After she sees her sister's Hair Bow Holder, she may rethink her idea, though!  I'm sure we will be ordering a Tutu Holder to hang in her room, too!

What were their reactions to their Two Bees gifts?  How about this?

If you'd like to order one of Two Bees Tutus items or have them create a princess and pirate party for your little one, visit their blog, facebook page, or email them! 

For more information about Triangle Mended Little Hearts, please visit their blog, facebook page, twitter, or email them.

My Thoughts on Katherine Heigl's Interview

"Revealed to be a congenital heart defect, it was repaired with open heart surgery before the baby girl left Korea.  “Her heart is 100 percent fine now. She has a scar, so she won’t be wearing bikinis, which is fine by us,” the Killers actress, 31, tells Harper’s Bazaar in their June cover story." ~Harper's Bazaar


As a parent to a child who has had three open heart surgeries, they are not simple surgeries where one goes in and comes out the same day. It’s major surgery with days, even weeks in the hospital for recovery. They break their sternum, place drainage tubes in their chest cavities and bellies. It’s not simple and we’re told from the start that surgery doesn’t “fix” these kids.

Maybe her daughter was lucky enough to have something less invasive done to correct her condition. Either way, it’s surgery and all surgery has risks involved.  If so, I'm happy for them.  Watching your child being wheeled away with the REAL possibility that you may never see them again is how most of us with children born with CHDs have experienced heart surgery.  It is frightening for adults to have open heart surgery, imagine being a child. 

I have read the article and all of the comments pertaining to this article. Some are very insightful, while others are just plain rude and show just how far those of us who are fighting for CHD Awareness need to go before "everyone" understands what they are. 

Choosing not to allow your child to wear a bikini is fine by me, my kids don’t wear “bikinis”.  Our CHD child wore her first two piece bathing suit last year.  It was not a bikini and covered just about as much as a one piece, but she was so proud of herself.  I would never tell her she can't show any of her scars.  She has more than one, so one piece or not, they are gonna show at some point.  Why not empower her to be proud of all that she's been through and fought so hard to get through?  She is an inspiration to everyone who knows her.  She SHOULD be proud.

By Ms. Heigl saying what she said, in the context and subject matter in which she said it, is why so many people are upset by the comment. If she was joking, it isn’t clearly stated for those who took it as a jab. It’s hard to convey spoken words into text, so it’s possible she meant it as a joke. In my opinion, she said something rather ignorant and it doesn’t change my opinion about her. I’m still not a fan.

She could really help the CHD community by educating herself and becoming an advocate for kids like Naleigh.  If she really wants to make an impact, she should educate herself first and use her influence, fame, and fortune to help many families raise CHD awareness, fund research, and help educate the public about these conditions. 

Congenital Heart Defects ARE a lifelong condition. Just as much as Down Syndrome and Autism. There are daily medications, routine heart exams, special instructions for caregivers and school teachers, medic alert bracelets, physical therapy, and sometimes learning disabilities. It’s hard enough to raise healthy kids with great self esteem and even harder doing the same thing with a child who had to start their life off with a life threatening illness/birth defect. 

My family is blessed to have had our CHD child make it through all of her surgeries up to this point.  So many have lost their battle.  We know how lucky we are to have her here with us and we would do anything to ensure that she has the best life possible.  I know that those who have lost their little ones to CHDs would love the opportunity to teach their child to be proud of their scars and would give anything to give them the chance to show off their badges of honor. 

I hope Ms. Heigl appreciates what she has and will do the right thing, by helping her daughter, by learning more about life with a child born with heart defects.

Birthdays for Heart Warriors

I imagine all parents view their child's birthday as a huge accomplishment.  Something to be celebrated.  A day to remember the past year's achievements and successes.  Birthdays for Heart Warriors are special.  For a parent to a Heart Warrior, we celebrate all of those things, along with: breathing, movement, and life in general!  Birthdays for Heart Warriors are extra special, because they've done the unthinkable, the unimaginable.  They have managed to hang on for another year!

Gone are the days of being satisfied with a mere "Dada" or "Mama".  Parents of Heart Warriors are amazed that their kid made it through the night or moved their legs a bit more this week than last week with the physical therapist.   All of our kids' accomplishments are multiplied ten fold.  Every detail of our child's accomplishments are etched in our brain forever.  We don't really need to write it down, although we do. 

Parents of Heart Warriors see life in a different light.  What used to be a rainbow, is now a full landscape of colors, hues, and contrasts.  Those of us who used to see life as black and white, now realize there are hundreds of shades of "gray" in our world.  And what a wonderfully colorful world it is.

I am a parent to a Heart Warrior, as well as a parent to a heart healthy child.  If not for my Heart Warrior, I would've never experienced life to it's fullest.  Now, I feel every moment, taste every memory, and hear every song in my heart.

RSVP

I don't quite know when it happened, but somewhere between my marriage and having kids, folks decided they don't need to RSVP anymore.  What gives?  I admit, I have forgotten to RSVP on occasion, but I try.  I really hope that more than two classmates show up to my daughter's sixth birthday party on Sunday afternoon.  What a disappointment that would be!  And why is it so hard to get people to attend parties on Sundays?  My husband works six days a week, so it's difficult for us to schedule parties on Saturdays.  I've found that there is a dramatic drop in turnouts for parties on Sundays, compared to Saturdays.  Hm...

iHeart Faces: Faces and Flowers Photo Challenge

Here's my entry for the Faces and Flowers Photo Challenge:

This is my youngest daughter, Sydnie Lyn, who was born with congenital heart defects.  She is our Heart Warrior and has such an outgoing personality and sense of humor!  I took these last month at my grandparents' farm with a very unreliable 12meg. GE Digital Camera.  My skills as a photographer are not at all professional, although I wish they were!  I love taking photos of my girls.  Wish I could enter more than once! 

Please leave a comment below if you like my entry!

Reviewing Products and Giveaways

For a few months now, I have been following Blogs that review products and giveaway items to their followers.  I would really like to get into the business of reviewing products.  It seems so interesting and fun.  Is there anyone out there who would like to share how they got started and give me some advice on what to do?  I'd really appreciate the help and find something to do with my spare time.