Happy Valenintine’s Day

In November of 2001 I gave birth to my oldest son Matthew, who is now 10 years old. He was a beautiful baby boy with a full head of dark brown hair. All was well, and in an instant I was this sweet little boys Mom. Soon we realized our son was struggling, trying not to worry we hoped for the best.

About 12 hours after my sweet little Matthew was born we found out he had one of the worst heart defects you can be born with. He was born with Hypoplastic Left Heart Syndrome (HLHS), or in other words he was missing the whole left side of his heart. In an instant my world was turned upside down. We had three choices,

1. Let him peacefully pass away in our arms, and spare him a long road of surgery’s, and hospital stays.
2. A heart transplant, which he would most likely never get in time.
3. Open heart surgery’s (at least 3 and a hand full of other corrective surgery’s). The first one he would need with in days and he only had a 25% chance of surviving.

We decided to give our son a chance at life, no matter what the odds were. We knew we had to try to repair his tiny heart and give him a chance at life. So off to Seattle Children’s Hospital we went. In three years my son had 3 major open heart surgery’s, and 11 other corrective surgery’s. Those three years were filled with moments of total despair. At times the challenges seems more than I could handle. But they were also filled with gratitude, joy, and on over whelming love for my tiny son. Matthew was in the hospital for weeks even months at a time. I had to rely on the knowledge of Doctors and Nurses to give my son the critical care he needed to live. I also had to rely on the kindness of other “heart moms”, who gave me support and love in those difficult times. I was humbled by the kindness of others I made a promise to myself that I would try to give back as a way to say thank you.

Some have asked me why I take the time out of my busy day to write this blog? I know that some of you out there are struggling, I know what it feels like to be over whelmed with the burdens of everyday life. So this is my way of helping you, Let me teach you another way to provide the basics for your family. When I get an email telling me I have helped someone, I feel like I have kept my promise to give back, to help others in their time of need! This is my way of saying thank you …..SO Happy Heart Day!
With a heart full of gratitude!
Sarah

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.

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!

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.

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

Today 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).

(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.

(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.

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

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!

What is a  Mommy Moment, click here

Most of you did not know that I spent the last 3 days in Utah.  If you have been reading my blog very long you know that our oldest son Matthew was born with Hypoplastic Left Heart Syndrome (which means he is missing half his heart).  Matthew needed to have a few teeth pulled to make room in his mouth…a rather routine dental procedure.  But with Matthew nothing is routine, and he is high risk so we had to go all the way to Primary Children’s Hospital in Salt Lake City Utah for a specialist in cardiac anesthesia.  This will be the 15th time he has gone under for a procedure, so nothing new.  And this time it was for something  rather simple.. but each time I am worried sick about my little boy!

Matthew on the other hand, has been through this so many times he acts like it is a walk in the park.  Showing wisdom, courage, and strength beyond his years.  In pre -op while I was filling out paperwork he was making craft projects with another little girl also getting ready for surgery.

He happily blew bubbles as  he had his pre-op appointment from the Doctor.  As she was talking to him, she said that when he woke up from surgery he could have a slushy to eat.  Matthew replied, is it going to be a pink slushy….. because that is a “girl” color and I don’t like girl colors.

Daddy helping him get “suited up for battle”

Matthew and Daddy having a man to man talk about what is about to happen, and Matthew making sure he gets to watch the Wiggles when he wakes up. ( This has been a tradition since he was little)

Matthew  smelling his “root beer air”, as he listens to the anesthesiologist tell him what is about to happen.

Then the anesthesiologist asked if he was ready for surgery?  Little Matthew said sure, hopped off Daddy’s lap and my little boy walked with confidence to the O.R…..As I watched him and walked behind him I wanted to snatch him up and carry him, as I have  always  done in the past.  I felt like I was watching my little soldier march into battle, my heart breaking yet  so proud… my baby boy is growing up!

He climbed right on to the operating table, and as he held Dads hand, drifted off to sleep.

Then comes the hard part…waiting for the Dr to say everything went well and that he is all done.

We feel so blessed, everything went well and as planned.

We stayed in recovery with him, he was in some pain and needed lots of comfort, but did really well!

Waiting to go home….

They asked him if he wanted to ride a wheel chair out, and he said…No, I have my Dad.  And in Daddy’s arms he walked out, knowing everything was going to be OK.

]]> http://athriftymom.com/mommy-moments-7/feed/ 55 http://athriftymom.com/what-heart-day-means-to-me-2/ http://athriftymom.com/what-heart-day-means-to-me-2/#comments Sun, 14 Feb 2010 14:01:09 +0000 A Thrifty Mom http://athriftymom.com/?p=20351

Today is a very special day to me. On this day 8 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).

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 spend 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 heart surgery’s  he has been stable and healthy the last  4 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.

I was so young and had no idea how to be the Mom to a special needs child.  The last 8 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 eight wonderful years with a little boy who has filled my life with happiness.

This is a photo taken of his heart, during his last surgery.

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

Many of you know my son Matthew, who is now 7 was born missing half his heart ( Hypoplastic Left Heart Syndrome). He is in overall good health now, but is very fragile when it comes to cold and flu season.  The first 4 years he was pretty much a bubble boy, we did not take him out in public in an effort to keep him well enough to have all his heart surgery’s.  I have to admit I am kind of a “germ freak” but I really try hard to let him be normal.

Well the Nasty H1N1 flu is in our area, and I new it was just a matter of time before it hit our family.  Matthew came down with a fever 2 nights ago.  He also struggles with seizures so I was worried that his fever might trigger one.  So I was up checking on him most the night, then finally put him in my bed so I could keep a very close eye on him.

Yesterday I could not get him to eat, and he was very tired, and pale.  I was finally able to get some homemade chicken noodle soup down him.  A bath, and off to bed only to have long night.  I woke up to him struggling to breath, and shaking due to a high fever again.  His little heart was having a hard time keeping up, so he was also very “dusky” in color.  We waited a few hours, but at 3 am Matt took him to the ER.  They confirmed that he has the flu, and due to his health transported him to the Children’s Hospital in Boise.  About 40 mins from where I live.

After some fluids and meds  he seems to be doing better.  But they will keep him at least 24 hours to make sure he is going to be ok.  Matt is  a very loving Dad and also a  Nurse so he is in very skilled hands.  So I am sure that little Matthew is going to be fine but it is hard for me to not be with him.  But I need to stay home and take care of our 2 little girls.

I know this post has nothing to do with saving money or being thrifty.  But I wanted to share with you, we hope to have our little boy home soon.

I have told you all about my son Matthew who has, Hypoplastic Left heart Syndrome. He was born missing half his heart ( to read more about his story click here)  It  took us years to get him well enough to face every day life.  He is a strong  yet sweet spirited little boy.  He asks a million questions a day, loves to be hooked to my side 24/7 some days I get frustrated being the mommy to a special needs child.  But by the end of the end, when I tuck him into bed, sing him his goodnight song, and kiss him goodnight I can help but feel blessed.  Every night I pray to the lord that he will make is thru the night, and that his little heart will give us another day.  He has made me a better more caring person, I am blessed to be a mommy to such a special little boy.

One of my readers who is a heart mom also send me this poem, that another heart mom sent her.  I wanted to share it with you all!  It really touched my heart and I hope it will yours too.

Forever Young

“It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels to go live on earth and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you”. He reassures the scared little angel that everything will be okay and that he is just going for a visit.

He is still not swayed on this idea so Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work” but the little angel is still a little scared. He asks, “Will I be okay with only half of my heart?” Jesus replies, “Of course you will, I have other angels there that will help out, and you will be fine.”

Then Jesus gives the angel more details about his plan. He says “When you are born, your mommy and daddy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart”. “Enjoy your time with your family, play and laugh everyday and when it’s time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.”

We got up early this morning and took the kids fishing ( still did not catch anything).  They have so much fun casting their little poles into the water and reeling them back in.   Even my little Maleeya gets in on the fun saying ” round and round”  then does it all over again.  We fished for a few hours, then came home, little Matthew jumped out of our excursion and fell to the ground in pain.  I knew something was really wrong because me is such a tuff little guy. He is tiny and frail, but never complains.  As many of you know he was born missing half his heart, and spent the first 3 years of his life in and out of the hospital.  He has learned to deal with pain, and is an example to me, of how to face life with a smile.

I scooped him up off the driveway and carried him inside, he refused to move his foot.  He was shaking, and turned very blue due to his little heart over working due to the pain he was in.  His oxygen saturation were only around 77%  ( which is normal for him in an event like this)  He wanted me to hold him and kept saying, mommy I am just in a lot of pain.  So we took him in to get an x ray and sure enough he had broken both the bones in his ankle.  So he got a soft cast, and in a few days he will go back in for a hard cast.  He will not be able to walk on it for a few weeks and due to low muscle tone is not going to be able to use crutches.  So it looks like we will have to get him a little wheel chair to get around in.  What a way to start the first week of school!

So sorry the Sunday deals match ups are not done yet…..I will try to work on them.  But it has been a long day and my little boy needed his Mommy today!

Today was a crazy day to say the least.  Just coming home from a long trip and trying to get caught up on the laundry ( a task that seems never ending)  around noon I got a call from my sons school saying he was a little blue.  For those of you who don’t know he was born missing half his heart, Hypoplastic Left Heart Syndrome.  So I tossed the girls in the car and dropped them off at my neighbors then dashed to Matthew school.  He was waiting with the nurse, and starting to feel better.  He told me ” mom I am Pink again”.  I decided to keep an eye on him and take him home, but realized in the mad dash out of the house I forgot my house keys and I was locked out.  So I  had to meet my husband at work and get his keys.  Long story short we were right by KFC so I thought might as well make the most of this detour.  They happily gave us our FREE piece of grilled chicken.  I have to say I was impressed it was really good!

If you missed Free chicken day make sure you read my post here on how to get it free till May 17th

Please note that this post has nothing to do with a Thrifty deal, or coupons. But something much more important and personal to me. Those of you who know me personally know that my oldest son Matthew who is now seven was born with Hypoplastic Left Heart Syndrome (HLHS) or in other words he is missing the whole left side of his heart. You ask me how he is alive? We have been blessed to be one of the lucky ones…..with all odds stacked against us, and 14 surgery’s later Matthew is a happy 7 year old boy. We have our daily challenges, but face them with faith and a smile on our face.