Was it Scary When I Was Born?

I don't think about it often.  I actually can't even recall the last time my mind drifted back to the Cardiac ICU.  But there are times.  Times when I am not thinking about hearts, surgery or even Kalvin for that matter.  A coworker may apply sanitizer to his hands, as he has done a thousand times before, but this time the smell hits me just right and instantly I am transported to my baby’s bedside in the Cardiac ICU. 

 

I haven’t thought about it,  the room.  The sounds.  The smells.  In a long long time.  But in an instant,  I am standing there and I can see it all so vividly.  I can feel it all.  It all wraps around my entire being like a warm cozy blanket.  This is the room where I first became a mother.  This is the room where I first held my baby.  This room provides me comfort and peace.

The walls were a warm golden color.  The monitors beep as the pumps move up and down.  The smell of sanitizer and antiseptic linger in the air.  And He is there.  In a diaper.  A diaper that only serves to provide him with some dignity, but also reminds us all that He is just a baby.  Just six or seven days old.  The memories are not sad ones.  They are not scary ones.  Yes, there are some of those memories scattered in. But what I remember are the incredibly beautiful moments that stole my breath away. They are the moments that make up my baby's first weeks of life.

Kalvin's sitter is expecting a baby.  It is a very exciting time around our house, but it has also inspired lots of questions about babies.  Easy ones and hard ones.  And on this particular morning, I can see Kalvin has something on his mind.  Something seems to have him quite concerned.  He works up the courage to ask me, but I am so not prepared for what he asks:

"Was it scary when I was born?"

I pause.

Come on girl,  think.  Think.  How do I answer him so he knows how magnificent and wonderful his birth was.  How his birth brought us on a journey that would change our lives forever, for the better. I took a deep deep breath and... 

Oh Kalvin, when you were born it was a little scary.  But it was also a very happy time.  Daddy and I had waited such a long time to have a baby and we were so excited for your arrival.  We also knew that Children's Hospital was going to help us bring you safely into this world.  We were very very excited to finally meet you.

Kalvin's first breaths of life.  Weighing in at Ten Pounds even! You can notice he has a bluish tint to him.

He wasn't convinced. I could tell this was really upsetting to him. "But it must have been so scary. Not a happy time", he states.

He is clearly looking for reassurance that his life brought happiness with it.

It was scary.  It was.  But you know, Kalvin, some of the best things in life are the things that scare you at first.  Like going to school.  Getting married.  A new job.  Or having a baby.   All of these things make you a little scared when you first think of doing them, but it can also be even scarier to think of not doing them.

If you never braved going to school on that first day, you would not know how much fun school really is.  If you never took that first scary step onto the soccer field,  think of all the fun you would be missing.  Life is like this all the time.  You have to stretch yourself.  Step out of your comfort zone a little each day.  This is part of what makes life so rewarding.

When you were fist born, daddy and I both cried tears of joy.  Pure joy.  For you were our first baby. Our little love. Our very own beautiful baby boy.  That is all we cared about in those first moments.  You were so beautiful and you made us so happy just the way you were.  

We knew what had to happen next. We knew we had to hand you over to the talented doctors right away so that they could keep you safe.  And that was a little scary.  As they wheeled you over to Children's Hospital, Daddy was right there with you the whole time.  And we were happy.  We knew exactly what was going to happen each step of the way and we knew Children's was the best hospital in the whole world to take care of you.  We knew your were an incredibly strong little boy. 

There were moments during your surgery and after your surgery when we were very scared.  You were our baby boy.  But for every moment of scariness, there were more moments of pure joy.  Pure happiness.  Because you were our baby boy.  And we loved you so very much. 

"There is a great deal of pain in life, and perhaps the only pain that can be avoided is the pain that comes from trying to avoid pain.” (R. D. Laing)

Sometimes you come out of those scary painful moments a different person.  A better person.  A happier person.  Those scary moments can make the happy moments that much happier.  Does that make sense?

As we celebrated Kalvin's ninth birthday, we celebrated how much happiness he has brought to our family.  The light he adds to everyone he meets.  How excited and eager we were to meet him.  How blessed we felt nine years ago and how much more blessed we feel today.

Happy Birthday my sweet sweet Kalvin!

We're Back!

It has been a long time since I sat down to write.  I truly miss it.  I have been thinking about sitting down here to write, but never make the time to do so.  And then, as life sometimes works in mysterious ways, Kalvin struck a cord that left me no choice.

 Kalvin is an early riser-the only early riser in our immediate family.  He is up at six am each morning regardless of what time he goes to sleep the night before.  He uses this time alone to watch any and every sporting event from the prior evening that he das DVR'd.  Then  he continues on watching highlights and analysis of these same events.  At nine years old, he knows what he wants to be when he grows up-a sports announcer.  He practices announcing while watching the various events.  It is a gift to watch him doing what he loves.  So, I was totally taken by surprise when this morning he told me he had been reading the blog, our blog:  One in 1 Hundred.

"I have been going back and reading all the stories you wrote.  They are really good, mom.  I really like reading them.  You are a good writer, mom. You should really keep writing more stories," he encouraged.

He went on to share the particular entries he enjoyed best. This was his favorite What a Day at the Park can Reveal.  Part of me has worried about how Kalvin may interpret some of what I have written.  You may understand what I mean after reading A Day at the Park.  But he was all smiles.  It was all good folks.  All good.

Wow, so here I am.  And it feels really good to be back.  I had written this story back in May right before Kalvin's ninth birthday. It is hard to believe that it has really been almost six months since I  sat down here to reflect or write.  And what a six months it has been.  I have completely changed my world, our world during this time.  Left my job after twelve and a half years to stay at home with my boys.  So much to share.  So lets get started.

The Perfect Ending

One Hundred Laps on the One Hundredth Day of School

 

Run my dear,

                 From anything

That may not strengthen

                                        Your precious budding wings.

Hafiz

 

 

It was going to be the perfect ending to Congenital Heart Awareness Week.  Kalvin’s class was running one hundred laps around their gym on the hundredth day of school. I couldn’t have written the script any better, one hundred laps for our very own one in 1 hundred and it was Valentine's Day to boot. What better way to celebrate hearts.

What better way to spread awareness.

Running one hundred laps on the hundredth day of school is an elementary school tradition in our town that goes back at least twenty years. No fundraising involved, just a pure sense of pride and accomplishment for these second graders. They start training in kindergarten and work up to one hundred times around the gym or 3.5 miles!!! What an accomplishment for any second grader, but for one with severe pulmonary stenosis and multiple CHDs, well that is just amazing. And that is what I fully intended this post to be all about. Until that wasn't the real part of the story for me anymore.

I decided that morning that I, myself, could not put off exercising one more day. If Kalvin was running 3.5 miles, than surely I could too. I headed down to the basement to run/walk my own 3.5 miles on my treadmill. A treadmill that has been collecting dust and storing toys for the last few years. But that is a story for a post all of its own.

It was an emotional workout. I tried to stay motivated by picturing Kalvin running around the gym. He had worked so hard preparing for this day. And the training had presented some challenging moments for Kalvin; including one bullying incident. I wiped away the tears as I trotted along on my treadmill thinking how hard this was going to be for Kal to accomplish. Praying it would all work out. That he would finish.  That his face would beam with pride in the end. I thought about how proud I was of Kalvin and all that he has accomplished in his eight years as I continued wiping away the tears and moving my feet.

 

I plotted in my head what I was going to say to the other mothers while we watched the kids run around the gym. One hundred times. It was the perfect way to spread CHD awareness. The perfect time to share Kalvin's story.  I was so excited to explain all about CHDs. 

I would brag about my boy who is functioning with a little more than one lung and multiple CHDs. I wouldn't even go into the facts about his one leg being shorter and having much less muscle mass than the other. No, I would just share Kalvin's heart story and let them know all the facts.  I was ready to field their questions. It would be the perfect ending.

Then, like so many times before, as I sat down to share the fun part of our day.  I was planning to write all about Kalvin's running game (as Finn calls it) until I realized that wasn't the story that was really on my mind. That was the fun part of the day, but not the part that was nagging at me.

It was suppose to be the perfect ending, the perfect way to wrap up Congenital Heart Awareness Week 2014.  Right?  I would share some facts and tell all the moms and dads about Kalvin's heart and lungs. I would share our story.  But as I stood there with the other mother's watching our children run around the gym, that old familiar feeling washed over me. That need for Kalvin blend in. For Kalvin to be known as Kalvin, and not by his CHDs.

I just couldn't get the words out of my mouth. I so wanted to share all that Kalvin has endured.  How these heart babies go through so much.  How Kalvin has been through so much.  So much more than any kid should have to go through.  And most of all,  how these babies can thrive and live a regular life. But I didn't have the courage to say it.

I wasn't sure that they would really listen.

I could picture their looks.

The fear that they would think I did something wrong to cause this to happen to my baby crept into my mind. It is still there. Even though I know, I know,  I did nothing wrong. There are no guarantees.

Even as I held his brother up to the window to peak down on the runners, and he asked me why Kalvin was so far apart from some of the other runners, all I could manage to squeak out was, "He is doing the best he can. That is all any of us can do."

Oh, I wanted to shout out, "Your brother, my son, basically ONLY has ONE lung. Do you realize what that boy has been through? What that boy goes through?"

But I could not find my voice.

And I am not completely sure why.

I wanted this post to be all about Kalvin and his amazing run, but I fear the situation I found myself in is far too common.  I fear it is one of the reasons CHD awareness is still so limited. So I wanted to share the real part of my story and see if any other heart mom's out there find themselves feeling this way?

I remember bringing Kalvin home from the hospital. The nurses and doctors encouraging us to take him home and treat him like any other normal baby. But he wasn't a normal baby. He had just had a ten hour open heart surgery sixteen days earlier. Sixteen days earlier.

You couldn't pick him up like a regular baby. He could not afford to lose any more weight or we would be back in the hospital. And he ate like a bird. A few ounces at a time was considered a good feeding.

His chest was held together with large black stiches that stretched down the entire length of his torso.

He couldn't go into public places. He couldn't be around children or anyone who might be sick.

What we had just been through was not normal. But we were told to move forward and pretend everything was normal. 

And we tried. The best that we could.  We tried.

I guess this is what I struggle with today.  We want Kalvin blend in and be a “regular” kid, because that is what he really wants.  To be accepted for who he is. To fit in.

He does not like people to know about his heart. 

He doesn’t like to be singled out because of his heart.

And he shouldn't be.  He is just a regular kid, doing regular things.

I don't ever want him to be embarrassed or ashamed of his heart. Of his situation.  To feel like an outcast.  Those are the thoughts that keeps me up at night.  That drives me to spread awareness. I want people to know about congenital heart defects so that they will understand them.  So that no baby will leave the hospital undiagnosed.

As I stood there watching the run, I could feel myself getting numb. Numb to the feelings that were beginning to creep in.  Those feelings of that scared momma in her apartment with her twenty one day old baby, pretending everything was normal.  Pretending. 

I stood there pretending this was just another regular event for a regular kid. Part of me wanted to scream.  To jump with joy. To yell from the roof top,  "Look at my boy.  He had complex open heart surgery when he was five days old.  He has little more than one functioning lung. Would you just look at him now.  Look at him now." 

I wanted to be the one waving the flags and shaking the banners right there with the gym teacher.

 

But instead I just pretended it was all regular stuff.  Pretty amazing regular stuff.

And I guess in the end, it all works out the way it was meant to.

I thought the day was going to go a different way, that I was going to be spreading awareness and yelling from the roof top as my heart baby ran 3.5 miles. 

Instead,  I experienced the best gift of all.

I was a regular momma. 

Eyes dripping with pride and joy.

Watching as her boy ran around the gym with the other kids. 

His face beaming with pride.

It really was the perfect ending.

 

You Just Don't Know

Congenital Heart Awareness Week

February 7th - 14th

2014

Picture of Kalvin at 6 months old taken by our very talented friend, Pam Trudel.

I still remember, as if it were yesterday, meeting the surgeon the night before Kalvin’s open heart surgery.  Kalvin was four days old.  I looked up at Dr. Pigula and asked the question I was so hoping he would shrug off, “What part of Kalvin’s surgery do you think will be the most challenging?”

But instead he looked directly into my eyes and humbly replied, “It is just a lot to do at once.”

I swallowed hard.

 

I had another request for the doctor.  I took a deep breath and asked, "May I see your hands? I held my hands out to him. He set his hand in mine. I squeezed it ever so gently.

 

I wanted to feel the hands that would determine my future. I wanted to get to know these hands. As I held them, I prayed that they would work their magic.  That they would be able to save my baby and my family. 

Kalvin was diagnosed at my regular twenty week ultra sound with one critical congenital heart defect (CCHD)-Transposition of the great arteries and three secondary- coarctation of the aorta, pulmonary stenosis and a ventricular septal defect.

 

There are no known CHDs in our family history.  I was taking pre-natal vitamins loaded with folic acid a full year before Kalvin was even conceived.  I did all the things I was “suppose to do” to assure a healthy baby.  I avoided all the things I was told to avoid to deliver a healthy baby.  Friends, you just don’t know.  There are no guarantees.

Those hands were able to work their magic.  They repaired my baby's heart.  There is no cure, but thankfully there are repairs. My baby is now eight years old. He is thriving. But not all babies do. There are far too many who have lost their battle.  And while Kalvin continues to thrive today, we just don't know about tomorrow.

This week is all about spreading awareness.  Spreading awareness to try and save lives and families.

Friends, please don’t be fooled. 

Don’t think just because you haven’t been affected by CHDs yet,  that you won’t. 

 

Many don't realize that CHDs can strike anyone's baby.  It may be your next child or your grandchild. Your niece or nephew.  Your neighbor or your best friend.  CHDs don’t discriminate. Yes, the odds are higher for families with a history of CHDs, but not much higher.

 

No one ever thinks it will happen to them until it does.

 

Please help spread the word.  Tell your pregnant friends and family members to be sure to ask their doctor for a pulse ox screening for their baby before they leave the hospital. 

Know the warning signs.  You don’t want to become one of the heartbreaking stories I have heard.  The stories of the babies who came home undiagnosed.  Crushing stories of beautiful healthy looking babies who passed away suddenly in their mother’s arms without any warning signs. 

Passed away from the same CCHD Kalvin was born with.

If only there was pulse ox screening a few years ago.  Then maybe, just maybe, sweet momma Kristine would have learned about CCHDs from her doctor instead of from the coroner.  Maybe baby Cora would be here today.  It breaks my heart to even think about it.

Please, spread the word. 

Learn the warning signs.




To learn more about beautiful baby Cora and all that her momma, Kristine, is doing to bring awareness to the world visit www.corasstory.com. 

I Am One

Our One in 1 Hundred

I AM ONE

Congenital Heart Awareness Week

February 7th - February 14th

2014

Kalvin was very excited to keep up the tradition of holding the big Red Sox hand forming the number one for his annual "I Am One" photo.  You can check out last year's picture here.

We are all trying to spread awareness this week.  Many don't realize that CHDs can strike anyone's baby.  It may be your next child or your grandchild. 

Kalvin was diagnosed in utero with one critical congenital heart defect (CCHD)-Transposition of the great arteries and three secondary- coarctation of the aorta, pulmonary stenosis and a ventricular septal defect.

Screening for Critical Congenital Heart Defects-Help Spread the Word

by James P Kyser, M.D.

Critical congenital heart defects (CCHDs) are serious structural heart defects that occur in a very small number of newborns (the CDC estimates about 7,200 each year in the U.S.). CCHDs are the culprit of about 30 percent of infant deaths.

CCHDs make up around 25 percent of all congenital heart defects, and often require surgery very early in life. The diagnosis of CCHDs requires the right kinds of screening. Without proper screening, newborns might be misdiagnosed or not diagnosed at all. CCHDs can be picked up on routine obstetrical ultrasounds that almost all pregnant women have. But not all CCHDs are obvious before or after delivery, and it’s possible that a newborn could leave the hospital without being diagnosed. The consequences of this can be disastrous. Depending on the type and severity of the CCHD, these defects can be fatal or lead to serious problems.

Utilizing pulse oximetry screening, more infants can be diagnosed with a range of CCHDs before they get sick. These screening looks at seven major defects: hypoplastic left heart syndrome, tetralogy of Fallot, pulmonary atresia with intact septum, transposition of the great arteries, total anomalous pulmonary venous return, truncus arteriosus and tricuspid atresia. Five additional, secondary, diagnoses include double outlet right ventricle, coarctation of the aorta, Ebstein’s anomaly, single ventricle and interrupted aortic arch.

While each of these defects is a mouthful to pronounce, the actual screening process for CCHDs is pretty simple. A portable, non-invasive device called a pulse oximeter can quickly measure the oxygen level in an infant’s blood. If an abnormal reading occurs, the infant is referred for an echocardiogram, or ultrasound of the heart, which is interpreted by a pediatric cardiologist. The heart may actually be normal, (a ‘false positive’ screen), but if it is abnormal then the pediatric cardiologist and the providers taking care of the newborn will come up with an action plan.

It’s important to note that this screening doesn't take the place of routine exams, and not all types of CCHDs can be uncovered with this screening. However, the actual cost of this screening is relatively low. Sometimes a simple $15 screening can save a life. 

We are trying to get pulse oximetry screening mandatory in every state.  Please be sure to ask for the screening for your baby and help us spread the word so that no baby will go home undiagnosed.

Read more: here.

Top Braces...at 8 years old!

The day finally arrived.  It was time to get Kalvin's top braces.  The reason for Kalvin's braces is not to straighten his teeth, but to help move his bottom teeth and jaw back a bit.  He has a severe under bite and we are hoping the braces will adjust his jaw.  As we hoped,  after about six months, his bottom teeth have moved back a bit.  The orthodontist will adjust the treatment plan as we go along to assure his jaw is correcting as expected.  We are hoping to avoid jaw surgery which I hear is very long and painful. We chose the braces first thinking that Kalvin has a lot of orthodontic work in his future.  We didn't want to traumatize him out of the gate-at age seven. So far, the plan is working.

Kalvin, anxiously waiting the procedure to start.
 

The bottom braces have been easy peasy to deal with, but the thought of the top braces seemed to cause a lot of anxiety.  Kalvin was worried about the application process.  "Will I throw up (overactive gag reflex)?  Will it hurt?  Will I have to wear head gear at night? Head gear to school?"

So many worried thoughts running through his little mind. 

He is ready to get this over with.

 

Things moved right along.  Very little gagging, even with all the tools in his mouth.

 

 



Here they are drying the glue.  Kal was so patient.

 



I could not believe what I saw next.  Never, in all my days, have I ever seen one of these contraptions.  When the doctor held it up, I thought there was absolutely no way it was going to fit into Kal's mouth without an abundance of gagging.  I sat silent.  It turns out, I was so wrong.  The doctor plopped it into his mouth and wallah...

We stared in disbelief.  Finn, nor I,  could believe what we were witnessing.  We were stunned.  One just never knows.

No problem, even with this all going on simultaneously!

 

Kalvin was still as could be.  Just chillin'.

 

 

He couldn't wait to sit up and check out his new wires.

 

 He really wasn't sure what to make of all the new hardware in his mouth.



The top braces have turned out to be just as easy peasy as the bottom braces. 

 

Thank you all for stopping by.  Please feel free to ask us any questions in the comments or via email.  This previous post on bottom braces has been one of my most popular posts.  I see that people are reading it every day so I wanted to be sure to keep you up on our braces journey.  Thank you.

 

 

Leave My Hand in Your Hand - CHD and Siblings

Kalvin had his three month ultra sound and visit with the doctor following the blood clot in his left leg.  As we approached the room, Kalvin began whining and complaining about the visit.  Nerves I imagine.  "You know how many ultra sounds I have had?" he asked no one in particular.  I looked at him and smiled and replied with an answer I am not too proud of, "Not as many as I have had."  I know it wasn't the answer a young boy who has undergone more medical procedures than any one person should have endured well into their adult years, but it fell out of my mouth.  He was just looking for a little sympathy.  He was suffering from a sinus infection as well and just wanted to be home already. 

He jumped up on the gurney in his usual cheery fashion, put a smile on his face and said to the technician, "Let's get started."

I tried to save face by commenting on what a good patient he is.  But on this afternoon, the most mature encouraging words were coming out of the mouth of a babe.  Kalvin's three year old brother.

Some days it feels like Finn has endured just about as much "medical torture" as Kalvin.  He is dragged along to witness a lot of it.  He is usually very upbeat.  Keeping us all on our toes.  We try to make it fun.  It is a good thing Finn is fascinated with the elevator buttons and kinda sad at the same time that he knows exactly which floor to push depending on the elevator we are in.

We try to spare Finn any appointment that may involve a needle or a lot of hours in a hospital.  But he likes to be with us and come along for the ride. I thought an ultra sound certainly was innocent enough; after all, Finn has been to quite a few by now.  On this particular afternoon though, Kalvin had been teasing Finn that he too was going to need an ultra sound.  As much as I reminded Kalvin not to tease his brother and reassured Finn that he was in fact not having any procedures, he was still very nervous.  When we went to sit down beside Kalvin's bed, Finn practically leaped into my lap. 

"Mommy hold me so Kalvin won't take me in the bed with him," he pleaded gripping my arm. 

"Hold my hand so Kalvaan won't get me in the bed." 

Kalvin went on in a playful brotherly way giggling. 

"Kalllvaaan, don't harraaasss me!" Finn yelled as he grabbed hold of my hand.

Once the technician began the ultra sound, Finn relaxed and even whispered in my ear, "Mommy, Kalvaan is a good patient." 

"Yes Finn, he is always such a good patient just like you are," I reminded him.

"Leave my hand in your hand mommy."

I whispered in his ear that he was being very brave just like Kalvin. He tightened his grip just a little more. 

"Finn, you are doing a good job, just like Kalvin," I reminded.  He smiled. 

It is so nice to be able to comfort him.  That just being there and holding his hand is enough.

"Mommy, this is fun."

Everything looked great for Kalvin's leg.  No sign of a blood clot.  The blood is still flowing nicely through his femoral artery.  Next appointment...six months!

We headed across the street to the pediatrician to get an antibiotic for Kalvin's case of sinusitis.  But not before stopping to pause at the ball drop. The boys love to follow the ball.

He watches so intently.

I love how his hand is on the glass.  Look at these little hands.  They grow so fast.

You can just see it all over Kalvin.  His face.  His posture.  He is not feeling well.  Kalvin has suffered with sinusitis his whole life.  Adenoids out.  Little help.  But a dose of Augmentin fixes it immediately.  The cases of sinusitis are also becoming fewer and farther in between as he grows. Thank goodness. We headed across the street to the world's best pediatrician!

Where Kalvin had a little fun with mirrors.  I think we were all delirious at this point.

Look at how big Kalvin's hands are getting.  They grow too fast.

 

 People have asked me how they can get more information on any topic discussed here.  Please leave a comment and if you want it to be personal I will provide my email.  Friend, we are here to share all we know in hopes of helping someone.