August 29, 2010

The Heart Mom Chronicles ~ Our Warrior Princess

Today I am partaking in a blogging event put on by Stefanie from Every Heart Has A Story.  We were invited to share how our journey with CHD began.  Below are some of my first journal entries to this blog chronicling how we came to know of our baby girl Alexa's special heart. 

Our Warrior Princess

Our life changed, on a beautiful spring day, April 28, 2008 to be exact. I was a little over 20 plus week pregnant with our third child.  My family, husband and kids went to the doctors office to meet our baby for the first time on ultra sound and maybe, maybe not, find out the babies sex. We were thrilled! It meant, seeing our little peanut on the screen, watching it wiggle, counting all fingers, all toes, two legs, two arms, and a button nose. But then, a pause, some silence, some confusion and uncertainty, one doc, then another, lots of s i l e n c e with a little running around. Then finally, the news, as my husband and I looked at each other in disbelief, in love, in pain, in strength, in uncertainty, in unity and devotion they said it: "Something maybe wrong with your little ones heart". Whoah! What?! That hits you like a ton of bricks. Like the earth falls from under your feet. Like your life, and dreams flash before your eyes. Like you get the wind knocked out of you. Like your in daze. Like you want to wake up. Like you don’t know who you are? Or who you’ll be? Like your to weak and scared to face this. Like you want to know everything and you want to know it NOW! Like you just want to cry but you remember your in an office and your kids are with you and you don’t want to make spectacle of yourself but they just told you that something maybe wrong with your babies heart!! Their heart!! That same little heart you heard beating so beautifully just weeks ago. Their heart. Your heart. Our heart. It hurts. You feel it. It’s broken, both of yours.

But how? Why? What did they mean? What was it? Could they be right? Is it just a bad angle or picture? Were they being overly cautious or precautious? Did my baby have chance? Should I get my hopes up? Would I still get to meet the precious little being I had already fallen head over feet in love in with? I wanted them to tell me everything, explain all the details. Or tell me it was no big deal, routine, a piece of cake, a walk in the park. Give me some hope - something. But all they said, was that they could not get a good enough picture of the heart and they needed to send us to a pediatric cardiologist for a fetal echo. You know how long I had to wait with the torture of not knowing? Two very loooooong weeks! Why? On the same morning I found out the news about my baby that day at noon our insurance decided to cancel their contract with the Obgyn office and hospital I had been receiving care at. So instead of getting in to see the specialist in two days like they had promised, I was now without a doctor, specialist nor hospital. I had to start over from square one, finding a new OB who would care for me, and finding my way alone frantically trying to find someone who would do the fetal echo we needed, SOON, so I could get some something, some info, some piece of mind, the truth. This, although very frustrating at the time, turned out to be a blessing in disguise. In the meantime, I didn’t understand how this could be happening to me? To us? To my baby? We were the picture of perfect health. No family history of heart problems. Took all my prenatals, never had one drink, have never smoked, or ever tried any drugs. I’m so anti-drug I even delay as long as possible taking a Tylenol when I have a headache. I have birthed both my children naturally, no epidural, pure raw earthly mother power. I’ve given birth in water. Am into green healthy living. I am strong, young, pure, as is my husband. How? How could this be? And so this is where our journey into the unknown world of Congenital Heart Defects (CHD) began.

Alexa at one month old, first time home from hospital.

In the Mean Time

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.

My kids having fun painting on my very pregnant belly!

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!

Me Waiting to Exhale

Morning Glory

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 ...

Our beautiful newborn baby girl!

Let it Flow

On the day of my daughters birth, I could say truly the flood gates of the heavens were opened and down my tears came like buckets full of rain. I cried of course tears of joy but shortly after and for days to follow tears of sorrow. My baby lasted in the same room with me a few short minutes. They weighed her, checked her, touched her, looked at her and then of course we all knew they had to take her away. I had already asked my husband to follow her, and not let her out of his sight. One of my sisters followed him. She was taken to the NICU, her oxygen saturation low. I really wanted to be with her. Like right away. Like right now and forever!! I wanted to hold her, to kiss her, to admire her for a looong looong time. I wanted to snuggle with her, and smell her, and talk to her, and hug her but most of all I wanted to protect her and ... I couldn't. I wanted to trade places with her. I wanted to endure everything she was experiencing and was about to face. I wanted her pain and her fear. I wanted it. I wanted to take it all away. But it couldn't be. 

After resting for a bit I insisted I wanted to go see her. Somebody wheeled me over there, I think a nurse as she explained how to get to the NICU. And for the first time, I saw my baby hooked up to many machines. The worse, was that I had to see her get intubated. A breathing tube shoved down her tiny throat. It was the worse. They held down her little head, as she fought the pressure of the nurses hands. And she gagged. And then she was silent. Silent for a very very long time. I longed to hear her voice, to hear her beautiful little newborn cry. I had only the chance to briefly here it right after she was born. Don't ever take that for granted listening to your child cry, it is believe it or not a beautiful thing. I listened attentively as the nurses explained the screens and machines. I looked helplessly at my beautiful little daughter now clinging for life. Welcome to this beautifully wonderful cruel world my little one. Mommy's here. 

An on call Pediatric Cardiologist was examining an echochardiogram they did on her and determined she should be transported to the Children's Hospital main campus that same day. He said she would be better cared for as more things were available at the main campus should the need arise for further interventions. So now not only was my baby girl not in my arms and not in my room, now she would also not be in the same hospital as I. I can't say any of this took me by surprise, as it did not. But it was one thing to hear that it was going to happen and another to live it. I saw my little baby get all ready in her crystal clear NICU box to be "air vaced" (but really driven since it was a few blocks away) to the Children's Hospital. I stayed in that room, that empty room that moments earlier had been filled with frenzy and I cried. After a while, I called my poor family who had been waiting back in my room to come and get me but actually a nurse wheeled me back to my room. I felt defeated, deflated, conquered and crushed. I felt the biggest empty pain in my heart I had ever felt in my life. I was wheeled into my room where my brother, sister, sister in law, father and other brother in laws had been waiting. I couldn't look at them. My husband was with my daughter. My mom, with my other children and my other sister. The nurse helped me get back settled in my bed and asked if she could get me anything. And of course she could get me nothing that I truly wanted. After she left, I could feel my family looking at me and then at each other. I could not look at them. I could not look anywhere but down. I'm sure they felt lost for words. I however, in that moment just lost it. I couldn't hold it in anymore. I cried like a baby, like a little girl. No, I cried like a loving emotional mother who had just given birth to the most precious baby girl born with a congenital heart defect and had just had her baby taken away. I still remember my father, coming to embrace me, holding me tight as I felt the tears roll down his face and tell me everything would be all right. I couldn't help but feel like a frightened little girl. Thank you father for your strength during my moment of need. My room was filled with the fragrance of fresh flowers and decorated with balloons and cards of congratulations and well wishes from family and friends. That night I stood at my window and from my room I could see the top of the tower of the Children's Hospital my daughter had been taken to. My heart was there, but I was not.

Our first of many long day's in the NICU/PICU.

Life Since

Alexa will turn two years old in just a few days.  It has been a long journey.  A wonderful journey.  A painful journey.  A learning journey.  A faith trying and faith filled journey.  In less than 18 months, Alexa endured 3 heart surgeries.  The BT Shunt at 13 days old.  The Rastelli followed by a pacemaker surgery a week later at 17 months old.  Unfortantely, Alexa's need for open heart surgeries has not ended.  She will require her valved pulmonary conduit be changed as she grows and also the lines and battery of her pacemaker.

Below is a a picture of her as we are driving to the hospital for all her presurgery testing.  Do you know how awful it feels to be driving your innocent/oblivious/precious child to have life threatening/saving open heart surgery? 

Do you know how scary it is, those last few minutes you have with your baby before you have to give them up for an 8 hour open heart surgery, hoping, praying, fearing, it is not your last time together?  This moment for some reason is the most painful to me of all the memories I have.  It is trying to smile while your dying inside at the same time. 

And this, no parent should ever ever have to see their child like this.  Ever. 

It's been just 6 months since her surgery, now a few days shy of her 2nd birthday and you could see just how wonderful she is doing in the pic below!  It is truly amazing! We are so thankful to God, our family, friends, doctors, nurses and Alexa's fighting spirit she has made it this far!  We love her with all our heart!  She lights up everyday with her joy of living.  She is our hero and warrior princess!  

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