I’m a Heart Mom

mommy moment

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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!

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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.

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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.

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Daddy helping him get “suited up for battle”

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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)

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

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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!

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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.

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

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

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Waiting to go home….

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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.

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Happy Valenintine’s Day
In November of 2001 I gave birth to my oldest son Matthew, who is now 8 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
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004Today 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).

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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.

Sarah111b

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.

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

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

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My family

10/18/2009 2:00 pm · 126 comments

by Sarah A Thrifty Mom

sickchild.jpgMany 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.

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