Sunday, August 22, 2010

Our Heart Story

Every Heart Has a Story

My wonderful friend, Stef is having an incredible blog event today!  A chance for heart families to connect and read each others stories, to offer support and ask questions about this world we have all come to know called congential heart defects.  I am so excited to be a part of it!  You can click the button above to go to Stef's page and read lots of other heart stories!

Many of you may be new to my blog today, and others have known us through our entire heart journey.  Mostly I use my blog to post the fun adventures we have with our little monkey Andrew, now almost five years old.  We have been fortunate lately to have had a break medically, so we have taken full advantage of it!  I really believe in doing as much as possible as a family so we can all make wonderful memories together.  Andrew is going to be having a third open heart surgery within a year, and we are currently living month to month as he is being closely monitored by his cardiologist.

**Update:  Andrew's third surgery took place last March, 2011.  The surgery widened the pulmonary arteries, but they have not stayed open so he had another heart catheterization last September and stents were placed in the left PA again and widened.  His branch PA's are very small, and during that cath we were given the news that there isn't much more they can do besides more caths, and continuing to widen the stent.  That may or not cause the branch PA's to grow.  We are looking at trying oxygen therapy if they aren't showing growth on their own.  So for now, we are hoping and praying they will grow.  You can read more about this here.

So, let me start from the beginning.

Literally.  The getting pregnant part.  For us it didn't come easy.  My husband, Craig, and I tried to have a baby for almost 2 years.  Our struggle with infertility was very trying and challenging for us.  Where many couples would let this distance them, instead my husband and I became closer to each other and to God as we prayed together for God to bless us with a child.  In God’s perfect timing, we were told that In-Vitro Fertilization was our only option.  We wanted a baby so badly.  We knew we had to try.  We were ecstatic when we discovered we were pregnant.  I had never felt such joy in my entire life.  We knew that our baby was a true miracle, and became excited planning and preparing for the arrival. 

Pretty much since that day, the roller coaster ride began.  We went in to hear baby's heartbeat at 6 wks and heard nothing.  We went from sheer joy to utter devastation.  But we refused to give up and went back a week later, this time to see a tiny flash on the screen.  All I can remember saying is, "isn't that a heartbeat?!" and bursting into tears.  Indeed it was, and baby was to be born on daddy's birthday.  What a miracle.

The roller coaster continued with our 20 week ultrasound.  Never in a million years could I have predicted what would happen.  The technician seemed concerned, and the ultrasound took a really long time.  My heart sank, because I just knew something was very wrong.  She finally went to go get our doctor, which concerned us a great deal.  The doctor took a look and concluded that there was “possibly” a problem with our baby’s heart.  She sent us on to the perinatologist.  We were so scared and devastated.  That was the moment our lives changed forever.  It is a feeling you cannot describe, and only other heart families truly understand.  We had already been through so much with trying to conceive, thinking that would be our main obstacle with this pregnancy.  The truth was, that God wanted to teach us so much more.
This has always been a favorite picture of mine.  We were all standing in the NICU, he was only a couple days old and he stretched and folded his little bruised hands just like this.  Everyone in the room had chills.  It was a perfectly orchestrated moment.

At this appointment doctors practically forced us into an amniocentesis, where we would learn if our baby had any other chromosomal issues.  We were given the option of terminating the pregnancy, which makes me sick to think about.  We knew that if God meant for this baby to be here, then that was His will and not our choice.  Thank God, two weeks later we got the results of the amnio and they were great- all chromosomes accounted for.  That day we celebrated.

The rest of my pregnancy went well until a routine doctor’s appointment on January 29th when I was just 34 weeks pregnant.  An ultrasound showed that the baby had not grown since our last appointment a month ago, and my fluid was low.  This meant that he only weighed that of a 30 week gestation, and I was certain that he couldn’t live if he was born that tiny. I was put on immediate bed rest but sent first to do a non stress test.  The NST showed I was having minor contractions, which I didn’t feel.  But they sent me to the hospital, just in case.  I remember laying in the bed hooked up to the monitors, waiting for someone to come and tell me when I could go home.  Lunch came and went.  I didn’t order from the menu because I was surely not staying there that long!  The same thing happened with dinner.  I refused to believe that I would be remaining in the hospital and very possibly delivering our baby that evening.

The one thing I do remember from that evening after we had talked to the doctors and our visitors had gone home…when things finally settled down, God’s presence had never been more near to me.  I had been told by my doctor that if baby’s heartrate dropped too many more times as I was contracting, that they would have to deliver him.  I layed in that bed and stared at the monitor, just watching his little heart rate for hours and talking to God.  Praying for HIS will to be done.  If that meant our baby was to be born that night, then that is what I prayed.  I prayed that he would survive outside my womb, being born so early.  I prayed for peace, because I was terrified.  I needed some sort of comfort, and God gave that to me during that dark time.  I felt a wave of peace come over me that I had really never felt before.  I KNEW God was there with me, along with my dad, my guardian angel.  It was a very special moment and right then I knew that whatever path was chosen for our baby, that everything would be okay.

Before we knew it, about 1:00am the nurse came in and began to hustle around the room.  I knew it was time.  The baby’s heart rate was dropping with each contraction I had, and this concerned the doctors.  They assured me that he would most likely live better in the world at 6 weeks premature than inside me.  I was soon being wheeled to deliver our baby via c-section.  The hospital was stark and silent at such an early morning hour- and suddenly a whole team of doctors and nurses just appeared as if from nowhere.  They knew the team needed to be ready to whisk baby away to the NICU.  This whole experience was another work of God… if we hadn’t had that doctor’s appointment that day our baby would not have survived.  I was again terrified.  How could my baby live with a heart condition and be 6 weeks early?  I knew the situation was very serious, but was very grateful I was in good hands.

The most beautiful sound in the world came at 2:26am when we heard our son Andrew’s first cry.  He was alive!  I can remember watching them take him over to weigh him and seeing his tiny limbs and his full head of dark hair.  I was instantly in love.  My husband cut the umbilical cord, and was able to bring Andrew over to me for just seconds as I ran my finger over his precious head before they whisked him off to the NICU.  I sent Craig to be with Andrew as I lay there feeling numb, unable to believe he was here and he was breathing on his own, and thinking of the long road ahead.  We didn’t get to hold and cuddle our newborn baby as most couples do.  My arms ached to hold him.  To see him.  We didn’t even have a camera that night, as it all happened so suddenly.  Our first picture of him and the first time we held him was the next afternoon, when he was already one day old.  He weighed only 3 lbs 13 oz.

 For the next five weeks we lived in the NICU. It became our new home and the nurses and doctors, our family. I spent countless hours sitting by Andrew’s isolette, only able to touch him through holes in the sides. I stroked his tiny hands and feet. I sang to him, read to him and talked to him. I told him over and over again how much I loved him and how proud I was of him. Every moment was precious. Time was of the essence.

It was only 6 short days later when we learned what it was like to watch your child being wheeled down the hall for a major open heart surgery. As I kissed him that morning, I honestly didn’t know if I would ever see him again. I just wanted to take him and run away. He weighed just under 4 pounds and was the smallest baby to have this procedure done at this hospital. The tears flowed freely as I again collapsed into my husband’s arms, feeling incredibly helpless.
 Hours after surgery (and that puppy is the size of a beanie baby, that's how tiny he was!)

Our days at home were so joyful, as we enjoyed every minute spent with Andrew, knowing his second surgery was near.  It occurred at 7 months of age- he had the full repair of Tetralogy of Fallot.
(Notice the same puppy- that's how much he grew!  And this was the first time he opened his eyes after his surgery.)

Since this time, three years ago, Andrew has only thrived.  
 I love this picture of him at 15 months, wearing his scar proudly!  It reminds me of a time when these pictures were taken when he was 3 months old...
And I actually debated about having his scar digitally removed from this photograph, which proudly hung on our wall as a 16X20.  I have to admit the first time I saw Andrew's scar right after surgery it almost knocked the wind out of me.  I felt sick to my stomach. The nurses tried to prepare me, but there was nothing anyone could have said to make that sight any easier. Now, three and a half years later I can’t remember what my son’s chest ever looked like without that scar. It is just a part of him. At first it is hard to look at.  Eventually it takes acceptance. Experience. It takes a few months to live with your child, to watch their personality develop, and to see before your eyes how that scar is a beautiful mark for the world to see. That it makes them who they are. You slowly but surely become proud of that scar. Proud of the pictures of their surgeries. Look what our children have been through! I believe that the more we share it with the world, maybe, just maybe, it will touch enough people that one day there will be prevention, or a cure for CHD’s.

Thank God we opted against removing it (with the urging of our photographer). I can’t imagine even thinking something like that now.  Isn't it funny (and not in a laughing sort of way) how you change and your view of the world changes after you are thrown into this journey?  Looking back at how much I've grown as a person and a mommy is just amazing to me.  I will never be the same.

And I wouldn't want to be.

Today Andrew still has very small pulmonary arteries, as they didn't grow like they were supposed to after his last surgery (welcome to the world of congenital heart defects!)  so he has had several cardiac caths to widen the PA's using stents.  The stents are currently as large as they can get (after several times being ballooned).  He has high pressure in his right ventricle, which will need to be corrected sometime within this year by removing the stents and widening his PA's surgically.

Of course we are dreading his upcoming surgery.  Now, three years later, my baby is starting preschool and is a spunky three year old with an amazing little personality.  The thought of putting him through this again makes me sick to my stomach.  Especially now that he's older, and can understand more.  I'd love some advice from parents of older children who have had surgery.  How did you prepare them?  Even more, how did you prepare yourselves?  I just cannot imagine.  Even though we've been through it before... as one heart mommy told me back then, "soon this will all be a distant memory."  And she couldn't have been more right.  You tend to forget those moments, the tough ones.  Or at least you try to put them out of your mind.  

There is so much more to our heart story, this was just a glimpse.  But I hope you have gotten to know us better and will choose to continue to follow our journey.  We would love the support as we approach Andrew's next surgery.  I can't wait to meet some new heart mommy friends today!  Thank you for visiting!  Please enjoy a montage I created of from the beginning of our journey with CHD...

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