I’m a Heart Mom

Want to take a moment and share an important topic. Organ Donation. Most know that our oldest, Matthew, was born with Hypoplastic Left Heart Syndrome. Along with that, we were given choices for his survival: Let him die, Heart transplant, or a series of major surgeries to re-plumb his heart. We chose the surgeries to hold off on a transplant. It was a choice based on multiple reasons. It is always better to make a bad heart last as long as you can. Not only because there actually is less medicine then compared to a transplant, but also getting a transplant is slim pickings in young children. They are young and healthy and there is less available organ donations.
We ask that you watch this awesome video below. It is about one of my (Matt) college dorm buddies, and his little girl, Mia. She had severe aortic stenosis. And thanks to Jacobs Mother who wanted her child’s memory to live on in another little child, Mia.  This subject is dear to our heart because most likely in the future our own little Matthew will need this priceless gift from another to live.
So take just a moment, watch the video, and the adorable music, get your Kleenex, and think about what would you do, if you too had that question asked? Will you donate?

For Jessica from Lilly McDowell on Vimeo.

 

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Filed Under: A Thrifty Dad, I'm a Heart Mom, My Thoughts, Valentines Day - Acts of Love

Today, 10 years ago, our first born Matthew was born! Even before he was born and before Sarah was even pregnant I had a dream. I dreamt of two little children, one boy and one girl. I couldn’t see faces, but I saw a girl in front with long brown hair. The boy had short brown hair and was standing to the side and behind the girl. But in my dream I knew that all though the girl was in front of the boy, she was younger. She was also taller and bigger muscled then the older but smaller boy was. And even though she was in front I knew she was in front as a protector. I knew that my first baby was going to be a boy, and my second would be a girl – long before Sarah was pregnant with our first.

When he was born, he had such long dark hair. It was around two inches and full and thicker then any guy could wish. He had fuzzy shoulders and arms with his baby hair, he was like a little monkey. He had a small little nose we call the “Barrand nose”, because the Barrand’s all have a small button nose. I counted all of his fingers and toes, rolled him around checking to make sure he was perfect. And he was. I was so proud of my wife and my son. I couldn’t leave them, so we made sure the nurses left Matthew in our room, instead of in the nursery. It was a joyful Sunday evening.

The next morning Matthew wasn’t doing that good. He was having a hard time breathing and the doctors were hoovering around him. We were later approached and told of his congenital heart defect. Hypoplastic Left Heart Syndrome. Our world become an overwhelming sorrow. Our life had changed in an instant! Our local doctor, Dr Babbel, and our local cardiologist, Dr Walker, we credit saving his life. They told us we had three choices – let him die in our arms a peaceful death, move to a far away city and hope for a heart transplant, where he could die waiting for another child’s miss fortune or to fly away to a far away city to under go a series of surgeries to redirect the blood flow in his little heart. Poor Sarah was so overwhelmed, just giving birth, trying to heal, and now her handsome little boy was near death. I knew I could not look back at that day and wonder what else I could of done. I could not sit there and not try to help him. I choose the latter option and with in hours Matthew and I were on a plane flying to Seattle Childrens hospital with out Sarah. She had to stay due to a traumatic birth. In Seattle, two other hero’s, Dr Lupinetti his surgeon, and Dr Greg Rosenthal a cardiologist, was there waiting for us.

I am so happy we decide to do something and that we have been blessed by our Heavenly Father with a son that has brought so much joy into our life. Matthew has taught us so much about happiness and the blessing of life. And today his younger sister Mckeely is his best friend, and his protector. She is taller then he is (she is 6 he is 10) she is much stronger then he is. I know as they get older that his athletic sister will continue to protect him.

We love you so much Matthew, and Thank You to my lovely wife for bringing my children into this world

Happy Birthday Matthew! 10 years old today!

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Filed Under: A Thrifty Dad, I'm a Heart Mom, My Family

Many of you know our Matthew was born with a heart defect known as Hypoplastic Left Heart Syndrome. You can read some of the stories about him on our link here.
Heart families are very close, even if we don’t know them, we have been there and experienced the same stress and worry as they have.
When our first baby was born we couldn’t pin point what name to call him. He was a little man with dark hair over, two inches long and very thick. He was perfect. We counted his toe, his fingers, and just inspected him all over much like every other loving couple would do with their newborn baby. Shortly after he was born, with in hours, he was placed on oxygen and doctors struggled to start IV’s. Soon the doctors came in and broke our hearts. They told us the precious little boy we had just brought in this world might not make it. We were told he had half a heart and that we had three options:
Compassionate care – bring him home and hold him while he went back to his Maker.
Heart transplant – might not survive till a heart is available and even then it might fail.
Or
Series of three major open chest heart surgeries that would totally change the function and lay out of all of the major plumbing and functions of the heart, and even then he might not make it.

Hypoplastic Left Heart Syndrome

Hours after birth, before leaving to Seattle

What was a new father to do? Do I do nothing and let him pass in my arms? Do I fly away to a distant hospital and wait and watch till another baby gave up their life for our son to get a new heart, only to have him die while waiting?
Or to fly away to a distant hospital to send my son to the surgery room and hope to see him come back to me after each surgery?
It was a hard choice. My wife still hurting with a torn and broken body from sacrificing herself for our baby, cried in my arms. The doctors sitting their struggling to describe the procedures. With the memories of their own child who passed with the same heart condition.
And here laid this sweet smiling boy who I knew was to be here with us, but still had no name. What do I call this child? I didn’t want him to pass with out knowing that we named him. I never in my life thought I would call some one after my name. I didn’t think he would survive, but want him to know that I loved him. So I named him after myself. He was to be my little Matthew. Off we flew to a distant hospital, leaving my wife in the hospital with a broken body of her own. It was me and my Matthew. He was starting to swell as his heart failed and retained fluid. He had IV tubes every where. In both arms, legs, and 3 into his belly button. He looked like a rag doll, limp and bruised. I would try and hold the only skin I could wiggle my hand in between all of the tubing and wires sticking off of my son. I sat there alone in the neonatal hospital room, in a daze as doctors came in in out and tried talking to me about what the plans were. I felt lost with out my wife. I knew I need to do something. I knew that if I did nothing, that some how I would feel as if I let him down.
The surgeon approached me and explained in detail what the surgery would do. He explained each of the three major surgeries. He told me my son was not a candidate for the procedure because he was so sick. I stopped him and told him that I did not want to do nothing. I explained that either he was going to die in my arms in the distant hospital room, or he would die on the surgery table and I was fine with that, because I knew in my heart I tried.

They wheeled his bed into the operating room. I stood there alone watching him disappear behind closed doors. Seconds after the doors closed Sarah was wheeled down the hall towards me. She sat in a wheel chair still recovering from the quick birth. They scrubbed her in and pushed her in to the operating room for possibly seeing him for the last time alive. And we waited..

Before each of the procedures, Matthew was not a candidate in the surgeons mind. That he had seen healthier kids die during surgery, and how was this sick little guy supposed to survive? Each time I told the same surgeon who had always worked on our Matthew that I was prepared for him to die on the table, but that I wanted to “try”. And we waited for our son to come back from each surgery.
After 15 surgeries, our little boy is still here with us. We are always asked what his future will be. Each time we say that he will never be a track star, that he is small and tiny for his age, that he gets winded with activity. Each time we say that many of these kids end up needing a transplant.
We are waiting still. Not to see him after surgery but waiting for his heart to weaken. Every night we wonder if he will wake up in the morning. Many families worry about what clothes they need for their kids events they are in. Many worry about if they will grow up to be doctors. We worry if he will simply grow up. Will he make it. Will he survive to be married and have children?

Below, Paul, has the same heart condition as our Matthew has. He recently finished waiting and had to go to the hospital for the transplant of his sick and tired heart, and received a special rebirth into life with a new heart. He is a talented musician and we love his music.
Quoted from his blog:

He is a talented Award winning pianist, lecturer, and author Paul Cardall has entertained sold out audiences and inspired people worldwide. His latest studio album titled “New Life” debuted as the #1 Billboard New Age Album in February 2011.

Born with essentially half-a-heart or a form of congenital heart disease, Cardall was given only days to live but defied medical expectations, enduring a series of surgeries and illnesses throughout his lifetime. After receiving a heart transplant in September 2009, Cardall wrote a memoir chronicling his experience, “Before My Heart Stops” published by Shadow Mountain.

After receiving his heart transplant, Cardall established The Paul Cardall Family Foundation for Congenital Disorders and created an endowment at Salt Lake Community College providing an opportunity for students born with abnormal birth defects, who have mounting medical bills, an annual full ride scholarship.

Spring 2011, the state of Utah and Salt Lake Community College awarded alumnus Paul Cardall with an honorary doctorate of humane letters at their 2011 commencement. Previously, he was honored with the distinguished alumni award.

In addition to his successful music career and writing career, Cardall is a much sought after public speaker.

Check out one of his songs below call “Before My Heart Stops”

And visit his site and get your own copy here

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004Today is a very special day to me. On this day 9 years ago I gave birth to my oldest son Matthew.  He was born with a full head of hair so handsome,  had all his fingers and toes and as far as I could see perfect in every way.  Within hours of his birth we found out that his little body was far from perfect, he was missing the whole left side of his heart.  (hypoplastic left heart syndrome) We were told the road ahead would be a long one, and had three options.  Hold our baby in our arms and let him peacefully pass away, free from pain of years of surgery,  or we could try to get him a heart transplant, but most likely his heart would fail before a match would be found.   Or send him to another state, for his 1st of many heart surgery’s ( that he only had 30% chance of living thru).

003

(Matthew prior to being flown to Seattle 1 day old)

At 3 days old my tiny son, was in total heart failure and not a candidate for surgery, but after pleading with our surgeon to at least try, Matthew had his first open heart surgery.  He beat the odds and made it….  He spent months in the hospital in 3 different states.  I came to love many other heart families, we shared in each others joys and heart ache.  I watched many of them loose their sweet little ones.  At that point we started to  celebrate each day, week, and month  Matthew made it realizing that each day was gift.  Over the next three years our lives were dedicated to keeping him well enough for his next surgery.  He was tube feed for almost 3 years, he did not go out into the general public in a effort to keep him well.  We never knew what the next day would bring, after 14  surgery’s  he has been stable and healthy the last  5 years.  We still have issues come up, and every night I pray for his tiny heart to be strong, and for another day with my sweet little boy.

DSC_0602aa

(Matthew Sept 2010)

I was so young and had no idea how to be the Mom to a special needs child.  The last 9 years have not always been easy, but have been well worth it and filled with joy.  I have become a better person, more compassionate, I have learned to remember what is truly important in this life…..Family.  So on this day I once again thank the Lord for nine wonderful years with a little boy who has filled my life with happiness.

Matthew heartThis is a photo taken of his heart, during his last surgery (Fontan or Glen stage 2) age 2 – 1/2.

matthew in hospital

Matthew age 4 (in hospital for stomach bug)

He has always been a great example to me, to keep a smile on your face and finding joy even when times are hard.

Matthew Mommy and Daddy love you, more than you will ever understand!  Happy Birthday Big Guy!

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Filed Under: I'm a Heart Mom, My Family