Morning Glory (Birth Day)

My daughter was born on a beautiful Tuesday morning, September 2, 2008, in a bright east facing 3rd floor hospital room with big windows and a lot of sunshine. Even though I was days away from my due date, I knew I would be laboring on Labor Day - yes, they call it mommy intuition. My contractions started small and far between but they got stronger and closer together through the night. I kept a small piece of paper and pen next to my bed in which I was writing down my contractions. I was waiting for them to get four minutes apart but before then as I turned in bed, I felt and heard a pop. My water had broken! It was my first time. For my other two pregnancies my water had to be broken for me. I informed my husband who immediately jumped out of bed and into the shower, called my sister who was going to stay with my kids and called my mom who was going to come with me to the hospital. My kids were a little worried as they just knew I had something broken inside and my daughter thought she was in trouble for dropping water. Yes, it was an exciting and confusing five in the morning! The moment we had all been waiting for was here!

My nurse was tough, a little too rough for my liking. But the day was beautiful! The sun was rising and our daughter's birth was near. I remember the the room was filled with a soft glowing morning light. It was the best! I don't know why I notice these things but I do. Maybe it's because I'm a photographer or maybe that's one reason why I am a photographer but anyway the light was the kind that brings hope of a new day, a new beginning, a second chance. My labor was strong, intense and fast. We got to the hospital about 7:30 a.m. and my daughter was born about 3 hours later. I guess I should say it was fast for me, my other labors lasted a lot longer. I wanted to sit up as it felt best, I wanted to actually stand up but they would not let me. Up to this point I had had two natural births including one in water, but now, because of the circumstances I was at the most high tech hospital with a team of great doctors waiting to greet my baby.

As the pushing phase neared I had mixed emotions. I couldn't wait to FINALLY meet my little baby. But I also feared for her life and her future. I knew as long as she was inside of me she would be fine. But of course that home was not meant to be forever. She had to come out. I knew though as it happened with my other pregnancies that I would miss having her so close, carrying her around everywhere I went. I would miss her kicks and her hiccups and the fullness of my belly filled with life and love. But she had spoken, she was now ready to be let out of her safe little cocoon.

As my body and mind worked to diligently bring forth life I was engulfed in intense pain, emotion, power, determination and exhilaration. But thinking of the fight my baby would soon face to save her life, gave me strength and courage to endure. Plus I had birthed my other two children without an epidural so I was determined to do the same for her. As my daughter slipped out and they brought her up I clearly saw her beautiful little chubby face. It was love at first sight! "She is beautiful!" I exclaimed. I turned to look at my husband and he was crying just like he had for the birth of our other two children. She was a big baby just like her brother, 7 lbs 15 ounces and 21 inches long. She looked perfect. It was hard to believe anything was wrong with her. I got to hold her in my arms for brief moment and kiss and talk to her, probably just a few seconds but that moment of her birth and me holding her are forever etched upon my heart. And every time I think of that moment this song comes to my mind as it reminds me of exactly how I felt on that glorious morning the first time I ever saw her face ...






The first time ever I saw your face
I thought the sun rose in your eyes
And the moon and the stars were the gifts you gave
To the dark and the empty skies my love
The first time ever I kissed your mouth
I felt the earth move through my hand
Like the trembling heart of a captive bird
That was there at my command my love

The first time ever I lay with you
And felt your heart so close to mine
The first time ever I saw your face

Somewhere

It's late but I just wanted to share this touching poem I came across while pregnant. The poem was written by Stephanie Husted, a free-lance poet who has a child with Hypoplastic Left Heart Syndrome.


Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…

This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.

And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.

Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see her face…

They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.

Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.

Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?

It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.

Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…

The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…

Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.

Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”

Author - Stephanie Husted

Waiting to Exhale

I still remember entering my first pediatric cardiology office. It was a hot May day (May 13, 2008). I was wearing a pretty black silk maternity top I purchased at the Gap, not really, it was at a yard sale, but it was pretty and it was from the Gap. I wore it because it made me feel good. I wanted to feel good. My husband and I nervously entered the office door, unsure of what to expect. Unsure of our baby's and family's future. On this day we would find out if something was really wrong and if so what or if it was all a big misunderstanding. I saw parents with babies, parents with children, parents with teenagers. I saw children walking out of the back office with a smile, new sticker in one hand and holding on to mom or dad with the other. I wondered if someday that would be me and my baby? I wondered why they were there? As I stood at the check in desk I could see rows and rows filled with patient files and I wondered how so many children could have something wrong with their hearts.

We were lead to a dark, fresh back room, that was playing a cartoon movie and had some mobiles hanging from the ceiling. I was told to lay down on my back and make myself comfortable. I tried, as comfortable as a five and half month pregnant woman could be. It was time for our fetal echochardiogram. I tried so hard to hold back the tears but as soon as I saw my baby on the screen the tears started flowing. How I loved that little baby! How my heart ached for that little baby! How I wished to know my baby would live! The tech took a bunch of pictures of my babies heart and then the pediatric cardiologist joined her to look at some of the images. It was an agonizing wait. I had waited two weeks for the appointment and now I just wanted to know already. They kept using words I did not understand and as time went on I knew. I just knew. My wish and hope that it was all a big mistake was not happening. My baby did have something wrong with it's heart. It was tragic. It was true.

After about an hour and half of laying down and cleaning my belly off from all that sticky gel, we met with the doctor. He explained our baby had something called Transposition of the Great Arteries. Doesn't it sound serious? Well it is. But he said that it could be corrected. Our baby would need open heart surgery shortly after birth! He used a lot of medical terminology we did not understand but he said by the time our baby was born we would. We left the office, feeling a little numb. Saddened that our baby had this diagnosis but also grateful their was something that could be done to help. The doc said our baby would/could lead a normal healthy life. And so, we focused on that.

That appointment was the first of many fetal echochardiogram's I had. At later visits, as our baby grew they were able to identify our baby also had something called a Ventricular Septal Defect and Pulmonary Stenosis. Unfortunately the Pulmonary Stenosis, ruined the chances our baby had of the one time switch and your on your way with the rest of your life surgery. I realize now, even that switch operation could lead to other complications but that most of the time it works fine one switch surgery and your done. Things got more complicated for us and the need for life long surgeries came into the picture. If you can imagine, we had just come to terms with the fact our baby would need one open heart surgery as a newborn, as terrible as that sounded it was still just one surgery. Now they were telling us open heart surgeries would become a routine part of our child's life. Routine?! How? And why? Could this really be happening? And it was.

All of our children were surprises. We wanted this baby to also be a surprise. On that first regular ultrasound, back in April, when we went to the OB office as family to meet our peanut for the first time, we told them we did not want to know the sex of our baby. But after everything that had transpired up to this point, I told my husband I needed to know. I needed to love my baby as person not know it just by this diagnosis. I already felt very bonded with my baby and I wanted to know who this special little person was. We were having a girl!!! One boy, one girl and now a new little sister. I was super excited. I love having my sisters although they are a bit younger than me. Okay a lot a bit younger than me. But still sisters share a special bond. And I was so happy to be having her. I was already head over feet in love!

Did You Know?

Below are some startling facts about Congenital Heart Defects (CHD):

• Congenital heart defects are America's and every country's #1 birth defect.

• Nearly one of every 100 babies is born with a CHD.

• Congenital heart defects are the leading cause of all infant deaths in the United States.

• 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.

• 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.

• 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.

• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

• 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.

• More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.

• 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.

• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
  

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

• 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.

• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
  

In the Meantime

After the ultrasound appointment my family and I went to have brunch at a nearby restaurant. My husband and I besides trying to digest our food tried to digest what had just happened. Our kids were blissfully unaware just like we wanted. I cried off and on making my husband a little bit uncomfortable. I think he always feels people look at him as bad guy even though he was/is innocent of making me cry (99.9% of the time). But I just could not help it. I was clinging to the hope that they were wrong like they made it sound, just a bad angle, not good picture, etc. but it was too late for my heart already hurt and worried for my unborn child. The innocent baby in my womb.

I spent the rest of my pregnancy both trying to enjoy it as it was planned to be my last and also worried sick. Both trying to be positive and yet engulfed with negative thoughts. Smiling yet ready to cry at the drop of hat. Quiet yet outraged. Confused yet determined. I wanted a handbook to tell me what was normal to be feeling in this situation. I was lost with my emotions. Should I answer every soul that asked how I was doing, how the pregnancy was going, how the baby was, with the whole truth? Did they really care to know? Was there enough time in their day to really listen and pay attention to the whirlwind in my head? Would it be okay if I drew pictures or presented some illustrations? Would I bore them with the latest information from the top medical journals and health studies in cardiology and cardiothoracic surgery? Did they really want to know about my crazy dreams and worst fears? Would it be considered lying if I said everything was fine? All these questions, yet so little time to make decision before the person in front of you starts questioning your sanity or hearing. So lots of times I just smiled and said everything was fine. A lot of times it was, when I was feeling good, but sometimes there was just not enough time to get into details, or it was an inappropriate place for me to break down so I just didn't head down that path, and sometimes I did share my news. With family of course, with some friends and at times with total random strangers. It was really like a mathematical equation or the perfect storm - if the parts added up then I spoke. Usually softly but swiftly with my heart on my sleeve and my newly accumulated medical knowledge in the other.

It is hard trying to explain the heart though. It is indeed amazingly and undeniably 'wonderfully made' like King David in ancient times wrote about the human body. More so than I ever imagined or really cared to know in this lifetime. The heart is a beautiful complex organ, filled with fascinating chambers, arched passage ways and secret tunnels. It is a like an electrically charged symphony, beating, swooshing and pumping, collecting and distributing not only life giving blood but the deepest feelings and experiences of human emotion. I tried to explain. And people tried to understand. And that's all that really mattered. Some got nervous, some asked questions, and some told me stories. But mostly all told me not to worry that everything would be all right. Wow! Not worry? Worry was my middle name. Had I not introduced myself at the beginning? Not worry? How realistic was that? I wished I could do it. But just not possible for me.

As the days passed, and I went about my daily business, I would come across other pregnant mommas and wonder if they also carried a secret sadness. I wondered if behind their smile there was a story similar to mine. As we crossed paths, I wondered if like me they silently carried their anguish, a woman so fragile to speak for fear of shattering into a million little pieces in the Target baby section. Even at the perinatologist office, where you know everyone is there because they are considered high risk for one reason or another, you still just smile, wonder and look. All while, secretly wishing, to make a human connection to someone, anyone who can relate to what you are feeling. Or maybe it was just me looking to connect. I was going to be a third time mommy but this was new to me. This was an intense experience. Could I handle it?

In the meantime, our little peanut grew happily in it's first home. Loved, cuddled and nestled in the best place on earth.