Friday, November 08, 2013

Special Needs Spotlight || Kalvin




Thanks so much, Miggy, for including me in your special needs spotlight. My name is Kristen and I live in the Boston area with my husband, Lars, and our two amazing boys-Kalvin, age 8, and Finn, age 3.  Kalvin was born with several complex congenital heart defects-d-transposition of the great arteries, VSD, Coarctation of the Aorta (COARC) and pulmonary stenosis.  Kalvin underwent eight hours of by-pass surgery to correct his defects when he was five days old at Children's Hospital Boston.  Kalvin has had three catheterizations to correct his COARC; one at 3 months old, another at 9 months old and a third at seven years old to place a stent.  The first one at three months old was unsuccessful and resulted in a damaged femoral artery in his left leg. As a result of his damaged femoral artery, his left leg is now about 1 cm shorter than his right and also has less muscle mass, but he doesn’t let it slow him down!  Recently, doctors used angioplasty to try and widen Kalvin’s femoral artery to allow more blood to flow to his lower left leg. Other than a painful blood clot that developed eight weeks later, it was a success!

Kalvin is a passionate and kind boy, an old soul.  He is a sports enthusiast who fills his time watching all sports as well as participating in soccer, baseball, skating and skiing.  Kalvin also enjoys boating with his family and listening to music.  Finn can be wild and outgoing, loving and quiet all in the same moment!  He enjoys playing outside, boating with the family, Mickey Mouse and doing anything his big brother is doing.  The boys could not be more different, but I must say they truly are the best “medicine” for each other.  I just love the moments when they laugh together and are supportive of one another.  I am so honored to be their mother and I love to share our story so many thanks to you for the opportunity.

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Miggy:  Hi Kristen!  So glad to have you on the blog today talking about your son Kalvin.  We had a similar experience in that we both found out about our children's conditions at the 20 week ultrasound.  Can you take me back to that dreadful day?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel about Kalvin's condition now? 


Kristen:  I remember that day like it was yesterday.  It was a cold and rainy winter day in Boston.  I was scheduled for my regular 20 week ultra sound.  I remember the technician moving the wand over the same spot on my belly and telling us she was trying to get a good look at the heart because it was very important.  Her tone was rough and I tried to lighten the mood-oblivious that anything was wrong, I had never even heard of a congenital heart defect at that time-by replying with a sarcastic, “You think?!”  She looked at me cross eyed and said, “You can’t live without a heart.”

The technician announced she was all done and was going to check with the doctor to see if he wanted any more pictures taken. We were still unaware that there was a problem with our baby. My husband looked at me and announced he was going to go and get a cup of coffee.  Although I really didn’t think there was a problem, I told him that he should probably wait until she came back.  The doctor returned with the technician and said that he wanted to get a better look at the baby himself.  As he rolled the wand over my belly for what felt like hours, I worked up the courage to ask if there was a problem.  To which he responded, “Yes there is.  Give me one more minute and I will explain.”  That minute felt like days.  I thought I was going to throw up right there as the tears rolled down my cheeks.  I could sense the problem was not small.

Initially, the doctor told us that our baby had a heart defect and probably wouldn’t survive once he was born. The doctor told us he wasn’t sure of the exact diagnosis and we would need to get an echocardiogram on the baby’s heart right away to determine the extent of the defects. He followed that up by explaining that there were hospitals in the area that were working on procedures to correct heart defects in utero, but nothing to date was known to be successful. 

We went home that day devastated.  I couldn’t believe this was happening.  I cried and cried.  I have never felt so helpless in my life.  There was absolutely nothing I could do to fix what was wrong with our baby or to take away the sting of our new reality.  I tried talking to my doctors that afternoon, all of whom said the same thing, things didn’t look good.  As fate would have it, we ended up at Children’s Hospital for an echocardiogram the following day.  There we learned that there were surgeries being performed every day at Children’s Hospital on babies’ hearts. Every day. Our prognosis improved from that moment on and we were filled with a new sense of hope.  It is still amazing to me that one out of every one hundred babies born each year has a congenital heart defect, yet a hospital around the corner that delivers thousands of babies told us there was no real hope. A hospital can make all the difference.

I have since learned so much about congenital heart defects.  No two defects are exactly the same.  You just never know how the baby’s body will handle surgery.  A baby, who may appear more challenged on paper than another, may do amazingly well.  You just never know.  You have to be thankful for every moment with your child. Take one day at a time. When you are pregnant, of course you want your baby to be perfect.  You have this image of how your life will be. Once you have children, you learn that that your life is seldom how you imagined it to be, but it is still wonderful and perfect. No one is perfect, but every child is perfect to their parents.  One of the other important lessons I learned early on is not all doctors are the same and not all hospitals are the same. 



Miggy:  Explain how Kalvin's needs affects your day-to-day life?  Or how that has changed over the years.  

Kristen:  As Kalvin grows and matures his needs have changed.  When he was younger we had to deal with sedating him for his echo’s.  That meant he couldn’t eat or drink that day.  That was tough and emotionally draining on all of us.  We were on edge, constantly looking for signs of heart trouble because he couldn’t talk and let us know how he was feeling.  Now, that he is eight, we don’t need to sedate him for his echo’s, but we have to manage his emotions. His questions and comments can be heart wrenching.  He will occasionally ask “why did this happen to me?”
I remind Kalvin that the why doesn't really matter.  We can't control the why.  Life can be unfair.  Life can be hard.  Sometimes, we don't have all the answers.  How we handle ourselves is what we can control and is what defines us and makes us who we are.  It is not the challenges placed upon us, but instead how we choose to face them that will have the most bearing on the path our lives will take.  I remind him, when life hands you lemons you make lemonade. He seems to understand.

Our days are filled with the normal kid things like soccer, piano and swimming lessons.  Add in the multiple therapies and doctor appointments and well, we are constantly busy.  Kalvin has received PT since he was 4 years old to help his coordination and build up the muscle in his left leg.  He receives OT to help his delayed fine motor skills. Kalvin has some processing difficulties and is seen by The Developmental Center at Children’s Hospital on a regular basis.  Kalvin also suffers from anxiety and has from a very young age.  We currently go to Boston University’s CARD Center for cognitive behavior therapy to develop strategies to manage his anxiety.  Finn gets to come along for the ride most of the time and is usually such a good sport about it!  Our life has always been filled with appointments and doctor visits so to us, this is the norm.  I think that is the blessing in having a congenital issue-it all you have ever known.


Miggy:  Knowing that Kalvin is thriving and doing well, are there still residual and long term worries you face for Kalvin?  If so, what are they?    

Kristen:  Doctors have only been performing the “switch operation” that Kalvin underwent at five days old since 1986.  While many of these babies are surviving and thriving into adulthood, it still makes his future a little unknown.  Kalvin is at risk for future arrhythmias, leaky valves and other heart issues.  Kalvin has a very narrow pulmonary artery that has never been addressed because to date it has not compromised his pulmonary function.  At some point, doctors may need to place a stent or surgically widen the artery.  We know his leg will also present different challenges along the way, but we just manage them as we go. We try not to think about the challenges.  We try and enjoy the good health we have now.  After all, the reality is none of us really know what our future holds.



Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Kristen:  I don’t think I have any as funny as yours, but we have experienced some comments from Kalvin that make us smile.  Kalvin actually really enjoys going to the doctors-bonus for all. With all the anxiety he experiences, none of it is over going to the doctor’s. When he was about two years old we were in Target looking for laundry soap and we couldn’t find it anywhere.  I was talking to Kalvin and getting aggravated that I couldn’t locate the soap in the store.  He looked at me ever so seriously and said, “Mommy, just get a nurse to find it! Nurses can always help us!”

Recently, Finn broke his wrist at the same time Kalvin developed a painful blood clot in his left leg.  We were on the way to the hospital to get a cast for Finn’s wrist and a Lovenox (blood thinner) injection kit for Kalvin.  Finn was crying and carrying on the entire hour ride to the hospital.  Finn insisted that he didn’t want a cast. He just wanted to turn around and go home to put ice on his wrist.  Kalvin looked over at him so matter of fact and stated, “Finn, I don’t why you are upset or why you are crying. I am the one with the real issue here.  I am looking at shots every day for two weeks. You’ll just get a cast and then feel all better!”  We had to laugh and see the humor in the situation.  Not that we ever want the boys to be comparing who is “more sick” than the other, but Kalvin did have a point and we did get to combine two hospital visits into one!


Miggy:  Now Kalvin's needs aren't necessarily obvious from the outside (or are they?!) but seeing how you spent a lot of time at the hospital and with a baby undergoing some very serious and stress-inducing procedures I was wondering what advice you could give to people who want to know what they can do for a friend or family member going through something similar.  What was most helpful or not helpful? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
  
Kristen:  This is a tough one.  I have struggled with trying to make everyone see that Kalvin is normal and can do anything that other kids can do and also having them recognize that this poor kid has had so much to endure at such a young age.  Kalvin appears very healthy, the only noticeable sign is really his “zipper scar” that runs down his chest.  I do wish people would ask about it when they notice it.  I find it much more comforting talking about his situation than people wondering or thinking it is painful for me to discuss. I understand that it may be hard for people to know what to say, but I feel much better when someone acknowledges how brave Kalvin is.  We have a lot of doctor appointments and therapies on top of everyday life responsibilities; it is always nice to have someone acknowledge that.  A sincere email or phone call can really make all the difference.


Miggy:  If you could say something to the mom who just starting on this journey of congenital heart defects, what would you say?   What would you say to yourself if you could go back in time?    

Kristen:  I would tell them that there is nothing that can prepare you for what you are about to go through.  You have to take one day at a time.  It is a roller coaster ride.  You will be up one moment as your child overcomes a small hurdle, and down the next when there is a setback. You have to stay strong and know that it will get better.  There will come a day, I promise, when you can drive to a doctor’s appointment without feeling like you are going to throw up, so fearful of what they might find.  It does get easier and brighter with time.

This heart journey is not an easy one, but it is well worth it.  Kalvin has not only touched my heart, but he has kissed my soul.  He has changed me for the better in ways I didn’t even know existed and for that I am truly blessed.  Please follow our story in more detail here at  www.onein1hundred.blogspot.com

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Kristen, thank you so much for sharing your sweet family with us today, and particularly Kalvin and his amazing heart journey.  Like you I remember the day of our ultrasound with such perfect clarity...it's amazing what can stand out to you when going through something like that.  You had so many wonderful insights and nuggets of wisdom.  Just to cherish everyday with our kids...I couldn't agree more.  I often have to remind myself that I don't 'deserve' or have any right to the good and even ordinary days--they are just a gift and all I can do is appreciate each day I get.  I also love that you said, 'nothing can prepare you for what you're about to go through.  You have to take it one day at a time.'  So, so true.  The big picture can be overwhelming, but day by day (or moment by moment) can be manageable.  I'm so glad Kalvin is doing well and that's he's got a great family and support system around him.  Thanks again Kristen.


As always if you or anyone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.  Also, if you've emailed me recently but haven't heard back please be patient!  It can sometimes take me a while to get back to you, but I promise I will!  

Have a wonderful weekend.  

5 comments:

  1. Thanks for sharing. My dad had a congenital heart defect before many of these surgeries were being performed. They have come a long way!! I loved your comment, "..the why doesn't really matter. We can't control the why." Always a great reminder.

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    1. Thank you MJ. The medical world is amazing which is why I have learned not to focus on the what if's of the future, we just don't know what the future will look like:-)

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  2. What a gorgeous family x

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    1. Anonymous12:15 PM

      You are too kind. Thank you for taking the time to read and comment:-) Kristen

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  3. Oh my momma, from one heart mom to another, I think that all the time. Why doesn't matter. I don't bog myself down with the why's and the unfairness. They're just a waste of time. No one is going to be able to tell me why, or you why, and life is just not fair. We just try and make the most of each day.

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