8.15.2011

Derrick's Heart Story

Shortly after celebrating our second anniversary we found out we were going to have a baby.  We were ecstatic!  The pregnancy was perfect...I wasn't sick, wasn't worried.  I felt fine other than being worn out by the time I got home in the afternoons.  Everything was going exactly as planned.  

We blissfully went to the 20 week ultrasound, ecstatic to find out if we were going to be shopping later that day for pink or blue.  The ultrasound tech happily announced that we were having a baby boy.  That was our main focus of the appointment.   We were told that they were going to do another ultrasound at my next appointment in four weeks because they couldn't see all of our little boy's heart, and that hopefully he would be cooperative then.  We didn't think a thing about it. We were completely fine with having another ultrasound because it meant that we would be able to see him again soon!

When it was time to go back four weeks later, I began to get a little nervous.  It felt like a lot of pressure that they were only looking at Derrick's heart.  What if he didn't cooperate?  I don't know that I felt that something was wrong, it just felt like a lot of pressure. 

When the ultrasound started we got a quick peek at our little guy's face, then the quest for checking his heart began.  After what seemed like forever, we asked the tech if everything was ok.  She said that he still wasn't cooperating and she was going to get one of the other technicians who was "good at getting the babies to move" to come and help her.  

You could feel the tension in the room as both girls watched the monitor as they continued to slide the probe all over my belly.  Finally they finished and again I asked if everything was ok.  "The doctor will talk to you," one of them said. 

We still weren't worried, but did think that the whole experience was a little strange.  After what seemed like forever we were called into the doctor's office.   We sat down across from him...this still makes my heart race...

"There's something wrong with your baby's heart," he said.  

At first I thought he was joking.  I have no idea why I thought he would joke like that, but I quickly realized that he wasn't.  I felt the blood rush to my head and my whole body was on fire.  I couldn't breathe, much less think.  Justin and I looked at each other and I couldn't stop the tears from pouring down my face.   

My doctor said he wasn't exactly sure what was going on and that he was going to send us to a pediatric cardiologist to get the details on our guy's little heart.  He said there was a great possibility that we would need to deliver at the Medical University of SC in case he needed heart surgery right away.  My doctor made us an appointment for the next afternoon with the pediatric cardiologist so we could find out exactly what was going on.  

I don't remember a whole lot about the rest of that day.  I was devastated; we both were.  All I could think about was that this really couldn't be possible.  This baby was moving around inside me all the time.  He kicked and squirmed, he had the hiccups and he got wild and crazy when I would eat chocolate.  He had to be fine, I would tell myself.  But I would catch my mind wandering to dark places...things I didn't want to imagine, that I couldn't bear to think about.  But I did.  I had only heard of one heart defect: HLHS.   I didn't know much about it other than it was not good.  When I was in college a classmate's niece was born with  HLHS and I had followed her story very closely.  It ended in heartbreak, and I prayed (or maybe begged God) that Derrick didn't have HLHS.  Looking back, I'm pretty sure my fascination with Miss Emily Mae and her story was no coincidence.  I think Someone was gently preparing me for my own journey.

The horrible day finally ended and we found ourselves in the parking lot of the pediatric cardiologist's office.  I don't think I even realized we had such a doctor in Columbia, much less ever thought I would be going to see one.  But here we were, both of us sitting, neither had the courage to open the door and get out of the car for fear of what they would tell us about our son.  We held hands and Justin prayed aloud.  He prayed that we would be given hope during this visit and that there would be something they could do for our son.

We had a very thorough fetal echocardiogram and the cardiologist came in to explain the findings.  Derrick was missing one of his ventricles.  The cardiologist wasn't 100% sure about which ventricle, but he was sure that he only had one.  He gave us three options:  1.) Derrick could undergo a 3-staged series of surgeries that would allow him to live a fairly normal life, but not "fix" his heart.  There was no "fix."  2.)  We could deliver the baby and take him home to provide "compassionate care."  3.) We could terminate the pregnancy.

We had asked God to give us something the doctors could do to save Derrick's life.  Obviously numbers two and three simply were not options.  Derrick's heart didn't fit nicely into any specific congenital heart defect, but he told us it was not HLHS.  Similar, but not HLHS.  We didn't leave that appointment with a specific diagnosis, but we did leave with hope.

Over the next four months we went to appointment after appointment.  It seemed that every time someone looked at Derrick's heart they told us something different was wrong.  It was heartbreaking enough to know that his heart was broken, but to hear something new every. single. time. someone looked at it was really hard to deal with.  

There were many, many tears shed for this child, and even more prayers said.  We had hope.  We painted his room, bought his furniture, had baby showers and created a perfect little nursery for him to come home to.  His clothes were washed; hanging in his closet and folded neatly in his drawers.  His toys were in a basket and his blankie, DD, waiting for him in his crib.  As we did all of this preparation, sometimes I had a terribly heavy heart.  Sometimes, secretly, it killed me to prepare for his arrival.  I was so afraid that he would never come home.  I was afraid that he wouldn't wear the clothes, sleep in the crib, or snuggle with his blankie.  Sometimes the thought of it was simply too overwhelming.  I was much more satisfied with the idea of him staying in my belly for the rest of my life than facing what was to come.

April rolled around and it was time for Derrick's arrival. At
6:31 pm on April 20, our little miracle, Derrick Palmer Carter, was born. I held my breath as I listened for his cry. That first cry was one of the most beautiful sounds I've ever heard.

Derrick's BIRTHday, April 20, 2009
Derrick was immediately whisked away by a pediatric team before I even able to catch a glimpse of him.  Justin was able to go along as they got him cleaned up and hooked up to his monitors.  He took pictures so that I could see our baby boy. About an hour later, Derrick was brought to my room for us to get a quick peek at him. I finally got to see my beautiful boy.  He looked perfect. It would have been impossible to know that anything was wrong with him if he wouldn't have been in the incubator and covered with wires.  We were able to open the tiny door to touch his sweet little hand.  My arms ached to hold him, but I knew better than to even ask.  They still weren't exactly sure what secrets Derrick's little heart held, so there was no time for us to waste.  After a few minutes, my brand new baby was taken away.
Derrick, the first time we met, about an hour after his birth.
The days went on with testing, echos, blood draws, questions, and learning more about Derrick's "complex little heart" as the doctors called it. We shed many tears, said many prayers, and spent many hours by our little man's side holding his tiny hands, reading to him, watching monitors, and listening to the beeping of the PCICU.  

Just waiting for surgery, two days old
When Derrick was four days old we were able to hold him for the first time.   We were told that we wouldn't hold him until the night before surgery, so this was a great surprise for us.  When the nurse put him in my arms I lost it. The world could have crashed down around us and I wouldn't have cared. I was holding my baby!  I cannot describe the overwhelming emotions I was experiencing. All of those days of having to look at our baby and not be able to pick him up to comfort him when he cried, to feed him, snuggle with him; all of those moments disappeared once he was finally placed in my arms.  

Our first time holding Derrick, 4 days old.
That moment was short lived because four days later it was time for Derrick's first heart surgery, the BT Shunt.  That morning we gathered around his bed, took pictures of him, touched him, prayed over him, and talked to him.  All I could do was cry. Even in my silent prayers, all I could say was, "Please, God." There were no other words that would come to my mind. All I could do was beg God to bring Derrick back to me.  That day, April 28, 2009, I did the first most difficult thing I had ever done.  I sent my precious, tiny baby away with two complete strangers for open heart surgery.  Watching his tiny body swaddled in his crib, hearing the click of them unlocking it, and watching him disappear down the hallway was grueling.  I collapsed in Justin's arms, and we cried. 

Surgery took (a long) seven hours but went very well; "textbook," his surgeon called it.  While they were in his chest they were able to see what all his "complex little heart" was hiding, and he was diagnosed with having: a single right ventricle, dextrocardia, transposition of the great arteries, pulmonary stenosis and mitral valve atresia.  We were glad to have some answers, but boy could we understand why they kept calling Derrick's little heart "complex"!

Seeing him for the first time after surgery was difficult, but under all of the tubes and wires we could still see his precious face.  
Derrick, 8 days old, BT Shunt surgery
Derrick's recovery was great and he was discharged from the hospital when he was sixteen days old; a short eight days after his first heart surgery.  We were amazed at his strength and determination, and so very thankful that God had blessed us with a smooth recovery and HOPE that Derrick would be ok.  

Being home was nice.  It was pretty scary at first, but we adjusted quickly.  Doctor's appointments filled our weeks and we lived life to the fullest, knowing that another surgery loomed in the very near future.  

When he was six months old, Derrick spent three nights in the hospital for at UTI that made his oxygen saturation drop really low.  It was around this time that he started physical therapy to develop his weak upper body because he was unable to spend time on his stomach without turning blue, and he also started feeding therapy for his inability to gain weight.  He was, and still is, very small for his age...but don't be fooled because he's quite strong!


Derrick, 6 months old, during his first *and hopefully only* non-surgical hospital stay
After the UTI episode we walked on pins and needles waiting for the time for the Glenn surgery to come.  He had two heart catheterizations to see if he was ready for surgery, and after the second one they determined that it was time. 

Two days before his nine month birthday, we handed Derrick over for surgery once again.  It was no easier than the first time, but just like before, we could feel the prayers from friends and family and the peace that only God can provide.  Again Derrick's surgery and recovery both went well.  He only spent one night in the PCICU and was moved to the floor the next evening.  He spent a total of eight days in the hospital, but the length was due to having a chylothorax  His heart was great but he had to be put on a fat free diet for six weeks to allow the chylothorax to heal.   
Bi-directional Glenn surgery,  9 months old, January, 2010
Since the Glenn, Derrick has done exceptionally well.  He has celebrated his first, second, and third birthdays, talks non-stop, jumps or runs everywhere he goes and has an endless supply of energy.  He is a sweet, protective (and sometimes rough :) big brother to a little sister whom he adores.  He is also getting excited about starting preschool in a couple of weeks!

Currently, Derrick sees his cardiologist every three months for check-ups for his special heart.  We are awaiting the Fontan, which is tentatively scheduled for the summer of 2013. 

This "heart world" life is definitely not something we would have chosen for our family.  If we could, in a heartbeat we would take away all of the pain and suffering that Derrick has experienced and all that is to come for him. However, we wouldn't change a thing for us.  

Derrick,15 months
Having Derrick has deeply strengthened our faith.  Having to fully rely on God; to have no choice but to give Derrick completely over to Him has been a very humbling experience.  It hasn't been easy and I still catch myself trying to control our situation, but I am quickly reminded that I have no control and God has all of it planned perfectly.  This heartache has been a blessing beyond our wildest dreams.  We have been blessed with one of the most amazing miracles and we won't take that for granted; not even for a second. 

Derrick, 2 years & 4 months


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