FEBRUARY IS CONGENITAL HEART DEFECT MONTH..

i know i have really never posted anything about this, which is OOOOHHHH sooo bad of me...but as most of you know, my son MATTHEW ISAIAH was born with a CHD called TOTAL ANOMALOUS PULMONARY VENEOUS RETURN (TAPVR) and we have been SOOO BLESSED to have him in our lives....he is such a MIRACLE to us and if you have never heard the story, here is a video i made of him when he turned 4 years old...


MATTHEW ISAIAH is 4!

well, there are so many organizations that are out there and some have FINALLY made it here to san antonio....there is one called MENDED LITTLE HEARTS and then another one called IT'S MY HEART...well, i just wanted to bring to your attention that the organization that i am a part of, they are selling HEART CARDS and they are pretty cool....i found this on another bloggers post and when i went to the site i just HAD to buy me some! so i thought i would pass along this to you!! here is the link...HEART CARDS VERY NICE CARDS!! i can't wait to get them in!!!

this heart mommy also had a BEAUTIFUL PRAYER that was called PRAYER FOR MY CHILD and if you would like to read it, you can find it HERE...

OK, TO everyone out there, family, friends, HEART FAMILIES, this month and EVERY month, may this find you being BLESSED with one more second with your children...i know as a heart mommy that having such SPECIAL BLESSINGS in our lives is such a JOY and i am so THANKFUL that GOD has blessed me with him....all our children are such blessings.....

i leave you with one of my FAVORITE poems/story...ENJOY...GOD BLESSINGS TO ALL...

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared that unique experience
to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation
trip - to Italy. You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn
some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The stewardess
comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and
there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just a
different
place.

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met.

It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all
bragging about what a wonderful time they had there. And for the rest of
your life, you will say "Yes, that's where I was supposed to go. That's what I
had planned."

And the pain of that will never, ever, ever, ever go away... because the
loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very lovely things
...
about Holland

-------------THIS IS THE FOLLOW UP ON THAT POEM-------------------------------

CELEBRATING HOLLAND--I'M HOME

I have been in Holland for a while now. It has become home. I have had time
to catch my breath, to settle in and adjust, and to accept this different trip
than I'd planned.

I reflect back on those years when I first landed in Holland and remember
clearly my shock, my fear, my anger. In those first few years, I tried to
get back to Italy as planned, but Holland was where I was to stay. Today, I can
say how far I have come on this unexpected journey, how much I have learned
about Holland. But it has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language, and I
slowly found my way around in Holland. I met others whose plans had changed like
mine and who could share my experience. Some of these fellow travellers had been
in Holland longer than I and were seasoned guides, assisting me along the way.
Many have encouraged me and have taught me to open my eyes to the wonder and
gifts to behold in this new land. We supported one another, some have become
very special friends, and I have discovered a community of caring. Holland
isn't so bad.

I think that Holland is used to wayward travellers like me and has become a
land of hospitality, reaching out to welcome, assist, and support newcomers.
Over the years, I've wondered what life would have been like if I'd landed
in Italy as planned. Would life have been easier? Would it have been as
rewarding?W ould I have learned the important lessons I benefit from today?

Sure, this journey has been challenging and at times I would (and still do)
stomp my feet and cry out in frustration and protest. And, yes, Holland is
slower paced and less flashy that Italy, but this, too, has been an
unexpected gift. I have learned to slow down and look closer at things, with a new
appreciation for the remarkable beauty of Holland. I have discovered that it
doesn't matter where you land. What's more important is what you make of
your journey and how you see and enjoy the very special things that Holland has
to offer. I have come to love Holland and call it home.

Yes, I landed in a place I hadn't planned. Yet I am thankful, for this
destination has been richer than I could have imagined!

CHD AWARENESS WEEK ENDS TOMORROW....

Make an on-line slideshow at www.OneTrueMedia.com

ABOVE, is a picture montage i made of our beautiful son MATTHEW ISAIAH who was born with a heart defect called TOTAL ANOMOLOUS PULMONARY VENEOUS RETURN (TAPVR) back on MAY 2004....this montage was made when he turned TWO YEARS OLD but it is very special because it shows what a MIRACLE this little guy really is! for those that don't know, our son matthew was born with a CONGENITAL HEART DEFECT (CHD) called TAPVR and we had absolutely NO IDEA when we were in the delivery room, that there was ANYTHING wrong with our beautiful baby boy!! so, we were one of those statistics that the parents, although we had PERFECT prenatal care during our pg, we had no idea that something was wrong....this defect is VERY rare and hard to detect in a normal sono or ultra sound....you MIGHT, if you are REALLY lucky, be able to find it in utero if you have a FETAL ECHO done on the baby while still in the womb...well, since we never had a history of this, there was no fetal echo done...so, when he was born via repeat c-section, he was born BLUE and would eventually be transfered to another hospital in town that specialized in pedi-cardiac patients...the cardiologist didn't think my baby would SURVIVE the transport across town!!! he had OPEN HEART SURGERY at 8 hours old and was placed on ECMO (http://www.ich.ucl.ac.uk/factsheets/families/F030174/index.html) for his first 5 days, and when they took him off that, life support, they basically took him to "die a natural death"....well, THANK YOU GOD, he is here today....he is our little miracle! CHD AWARENESS is so important because this is something that can affect ANYONE because even if you don't have a HISTORY of defects (like we didn't) this can happen in your life...your child...

OUR CITY and STATE have BOTH done a CHD Week Proclamation which is WONDERFUL!! the official week is FEB. 7 THRU 14TH...there is also a WONDERFUL SUPPORT GROUP called MENDED LITTLE HEARTS (http://mlhofsa.schendelsworld.com/index.htm) that just started up here in town...it is MUCH NEEDED because there are SOOOOOO MANY KIDS AND FAMILIES AFFECTED WITH A CHD!! it is soooo important to have support!!

anyway, just wanted to remind everyone of our little miracle....we are so BLESSED!!

HERE IS AN AWARENESS MONTAGE MADE BY MENDED LITTLE HEARTS....

CHD Awareness

from being happy to devistated....

i just heard some news from my TAPVR support group and one of the little guys EARNED HIS WINGS....i am in complete shock...this little guy was just about the same age as matthew AND their stories were SOOOO SIMILAR....this little guy also had TAPVR, cp, siezure disorder, delayed, the list goes on....but most of all, this little guy had been having szs just like matthew where they would last for an hour plus and would mean that he would be taken by EMS and such...we use to trade stories, news on meds and stuff...this little guy had been doing well and he passed away after having an HOUR 1/2 SIEZURE and ASPIRATING...OH MY GOD, THAT IS ONE OF MY WORST NIGHTMARES........how many times has my little guy stopped breathing or breathed inneffectively during his BIG SIEZURES?! this could have been MATTHEW!!! THIS COULD BE MATTHEW!!!!!!!!!! i am in shock and just scared.......i ran in to check on matthew as soon as i could get up on my wobbly legs because i just had to make sure he was ok....

my thoughts and prayers are with this family.....

FEBRUARY IS CHD AWARENESS MONTH...

well, just wanted to remind everyone that THIS UPCOMING MONTH IS CHD AWARENESS MONTH! for those that don't know, MATTHEW our 3 year old, was born with a rare congenital heart defect(CHD) called TOTAL ANOMALOUS PULMONARY VENEOUS RETURN (TAPVR). He was not expected to LIVE after he was born. we were one of MANY that had absolutely NO IDEA that anything was wrong with Matthew until he was a couple of minutes old! He was a blue baby...he would not change colors and stayed BLUE....he was transfered to another hospital where he had OPEN HEART SURGERY at 8 hours old....when he was 5 days old, they took him off ECMO (life support) to die a natural death....he is now 3 years old and is such a SPECIAL MIRACLE OF A BOY! we are sooooo proud of him (his picture montage is on the right!)...

i am so happy that there is now a MENDED LITTLE HEARTS chapter here in My hometown. it is a CHD support group FINALLY!! i am so happy and it feels so good to have them here! well, they made a montage for the upcoming week of CHD AWARENESS...please check it out!! you will see matthew in a couple of shots too!! :)


CHD Awareness

a lot of things going on...

wow, it has been a bit since i posted!! there has been A LOT of stuff going on....

this weekend was the funeral for the beautiful baby that passed away...it was really tough to see her in her little casket....she was soooo beautiful....it was so hard to hear the family grieving soooo.....it was really windy that day at the graveyard and a couple of times it REALLY blew and the father would cry out "i love you too, baby, know it is you..." man...it just BROKE your heart.....it was really hard...i had a cake done for them....the mom asked me if i had a cake for matthew and i said that i did (when he was going to pass away) and i told her that it had said "happy birthday matthew" but he was only 5 days old....she told me I WANT A CAKE TOO!! sooo, i brain stormed with the sister and we came up with what to put on the cake.."J.N., WE WILL CELEBRATE YOUR LIFE!!" i wish there was MORE i could do for her....

well, i have been frantically doing all the things you need to do when your loved one is COMING HOME!!!! I CAN'T BELIEVE that in less than a COUPLE OF DAYS, my husband will be HOME FOR 2 WEEKS!!! I Am sooooooo excited!! you can't even IMAGINE how excited i am unless you have been there!! it has been just SHY of 4 months since we saw him!! WOWOWOWOWOW....we have seen him in pictures but not in the flesh...i can't even imagine what alex and matthew are going to do when they see him!! it has been sooooo hard to not say anything to the boys....and people keep asking me in CODE THANK GOD if he is coming and when etc...it is kinda funny!!! but as of RIGHT NOW, YES, he is coming and it will be sometime AFTER the 19th....but what ever day he comes in, he gets 15 DAYS from the moment he signs in!! SO, he doesn't lose any days if he comes in later....i am tooooooo excited!!! :)

you will also note a new TAG section to the RIGHT!! what i am doing is taging EVERY POST to make it easier for you to find something...ESPCECIALLY about james and IRAQ...i have had quite a few people ask me how they can see those post...so now, just click on IRAQ and you will get all the post about that topic!! it is taking me a WHILE to do all these last 2 years but i am ALMOST done!! :)

a TAPVR baby has earned her wings....

yes, my new friend with the baby with TAPVR.....i found out early this morning that the beautiful little girl had passed away....i am so sadden for this family who i had JUST started to get to know...i met them about 2 weeks ago and when i went to visit the PICU with matthew....i later took the mom a gift bag full of goodies and got to see the little girl who was BEAUTIFUL with big eyes, lots of hair and who was soooo alert....i had JUST talked to the mom on monday about the upcoming MLH party on tues 11th and how we would meet up there (her and her son would be going) and we were excited because it would be fun etc.....well, when i got there to the party, she was not there...i remember i kept looking around for her and teling my other 2 buddies that i hoped everything was ok, and wondering why she had not made it etc...i thought about her thru out the party.....after i got home and settled everyone down, it was too late to call her so instead i emailed her telling her i hoped everything was fine and that she was missed and just to call me whenever...well, last night, FOR THE FIRST TIME IN FOREVER, i actually got up off the couch, closed my compture and went to bed by 1030!! amazing!! :) when i got up this morning, i had email from a friend who had visited the family last night after the party and found out bout the baby.....i am so sad about this....if i had gone w/my instincts and called her at the party or if i had fallen asleep when i usually did, i would have known sooner....

unfortunatly, so is the life of families with CHDs....you never know....i know of a family who's little boy was doing WONDERFUL 4 years after he was born w/the same condition as matthew and just w/in the last couple of months, they are going in for a pacemaker....just never know...

sooooooo my thoughts and prayers are with this family as they deal with the pain and loss of thier tiny beautiful baby.....i pray for STRENGTH & COMFORT for them for the coming days ahead....