pacrosby
DIS Veteran
- Joined
- Nov 6, 2009
- Messages
- 1,947
Thought I'd start adding journal entries consisting of random thoughts, background information, ideas/opinions,whatever........maybe mostly for me as I'll be printing this whole thread out for a remembrance of our trip. Of course any and everyone else is welcome to read them as well. It might make following along on our journey a bit more personal, with an "insider's view". I must alert you however that this first one might be too serious for some. I'll just entitle it "My Matty
"
Matty? What can I say about my Matty? Matty was born on January 1st, 2003. HAPPY NEW YEAR!!!!! He was perfect
At 8 1/2 pounds he was the biggest of my babies with the chubbiest little face and the biggest blue eyes and a crown of strawberry blonde hair
Where did that come from?????? To this day we still aren't quite so sure (nope, the mailman doesn't have red hair either). By looking at him you'd never have suspected how wrong things had gone inside that little chest of his. Fortunately, we already knew.
The news had been delivered that previous October. After a questionable 20 week scan (gotta love those huh?) there were a number of follow-ups that eventually led to a referral to Boston Children's Hospital for a fetal echocardiogram. Dh and I went to that appt. full of optimism. "It'll be fine" we would tell each other. The referring radiologist had led us to believe we were facing a relatively small defect that could be corrected in a single, rather routine, uncomplicated surgical procedure right after birth. Ok.....so not what we were hoping for but, that was doable. He would be ok. Unfortunately though the radiologist was not the one with the final say. That honor belonged to the fetal echocardiogram and the fetal echocardiogram had something quite different to reveal.
Hypoplastic Left Heart Syndrome. That was the diagnosis. Ummmmmmm, let's just say......"not good". How 'bout "devastating". I remember the cardiologist delivering the news in a small, cold, quiet room. I didn't say much. I looked like I was listening. I wasn't though. I checked out pretty much after I heard words like.............life-threatening, open heart surgeries, heart transplants, risks, complications etc. etc. etc. When the meeting (torture session was more like it) was over, Jaime (our beloved pediatric cardiolgist still to this day
) noted that I had handled the news remarkably well.......better than most. Little did she know however that on the way back to the elevator I ducked into an empty room and collapsed in tears.
Hypoplastic Left Heart Syndrome. What the heck is that you say? In simple terms a life-threatening congenital heart condition characterized by a complex set of heart defects incompatible with life. The most prominent defect is an underdeveloped and, as a result, nonfunctional left ventricle; hence the name "hypoplastic LEFT heart". Left untreated a newborn baby will die within a week. The treatment? A series of open-heart surgeries (generally 3, sometimes more depending on complications) within the first 3-4 years of life OR a heart transplant. Until the 1980's all babies born with this condition simply died. They often referred to them as 'blue babies'. My Dad (now 80 yrs old) tells me of his brother, a 'blue baby' who died at birth. Hmmmmmmmm.....makes me wonder.
It's been over 20 yrs since they pioneered the surgeries that now give these babies a chance at life. It's not a cure per se. Their hearts are not fixed. There's still alot of funky stuff going on in there. But they work
The surgeries manipulate the anatomy and physiology in such a way that the heart works and supports life. For how long no one is quite sure yet. In the fall that Matty was diagnosed Boston Children's Hospital was also pioneering a fetal intervention; a surgical intervention that might alter the course of the disease process in utero. They asked us if we were interested in participating. There were no guarantees and in fact, there were serious risks. But we decided Matty deserved a chance to avoid all the surgeries and the life-long uncertainties that would come with being born with HLHS. So we said yes. We were the 8th to have the procedure done. I was 25 wks pregnant.
Long story short, the next 13 weeks were filled with countless fetal echocardiograms in an effort to check for positive changes. We had such high hopes. But in the end, Matty was still born with HLHS (albeit with a better than average prognosis due to anatomical specifics - i.e. an aorta that was near normal size-wise......something not typical of HLHS.......................we attribute this to the fetal intervention). Our journey had begun.
I won't bore you (or myself) with the details of the next 6 yrs. Suffice to say we have had more than our share of open-heart surgeries and other related procedures; lots of doctors visits, medications etc. We've had issues with eating (my carpets will forever be a reminder of the days of projectile vomiting). We've had issues with growth. Matty is a tiny bundle of energy. He and his 4 yr old brother (Matty will be 7 in January) are pretty much head to head. He is such a skinny little bean. Not even ON the charts
But that's ok. Developmentally he was always on the later end of normal, but he always got to where he needed to be, just in his own timeframe. He started Kindergarten this year (I waited an extra year) and he absolutely loves it I expect some academic struggles because of the first two years of life when his oxygen levels were soooooo low (high 60's/low 70's for the first 6 months; low to mid 80's until age 2..............now in the high 90's. For those who don't know, 100 is normal). But that's ok. He's here. He's living the life of a normal little boy. That's a gift in of itself.
So Matty. Who is Matty? A crazy, silly, fun and fascinating little creature; always on-the-go and ready to have a good time. He'll try almost anything (at least once). He loves adventure. He loves amusement parks and water parks. He LOVES Elmo (just don't tell his friends
). He loves his swimming lessons (ok, so no matter he's been in the pollywog class for 2 yrs now
); is an orange belt in karate; takes tennis lessons (his favorite sport) and rock-climbing, and learned how to ski last year! Matty has an infectious laugh. He is sweet. Still alittle shy and reserved among those he does not know but we're working on that. And, truth be told, he's a momma's boy (how lucky am I???????)
I still can't believe MAW is doing this for my little kooky kid. He sooo deserves it. It's just gonna be great!!!!!!!!
More pictures coming soon
Pamela
"Matty? What can I say about my Matty? Matty was born on January 1st, 2003. HAPPY NEW YEAR!!!!! He was perfect
At 8 1/2 pounds he was the biggest of my babies with the chubbiest little face and the biggest blue eyes and a crown of strawberry blonde hair Where did that come from?????? To this day we still aren't quite so sure (nope, the mailman doesn't have red hair either). By looking at him you'd never have suspected how wrong things had gone inside that little chest of his. Fortunately, we already knew.The news had been delivered that previous October. After a questionable 20 week scan (gotta love those huh?) there were a number of follow-ups that eventually led to a referral to Boston Children's Hospital for a fetal echocardiogram. Dh and I went to that appt. full of optimism. "It'll be fine" we would tell each other. The referring radiologist had led us to believe we were facing a relatively small defect that could be corrected in a single, rather routine, uncomplicated surgical procedure right after birth. Ok.....so not what we were hoping for but, that was doable. He would be ok. Unfortunately though the radiologist was not the one with the final say. That honor belonged to the fetal echocardiogram and the fetal echocardiogram had something quite different to reveal.
Hypoplastic Left Heart Syndrome. That was the diagnosis. Ummmmmmm, let's just say......"not good". How 'bout "devastating". I remember the cardiologist delivering the news in a small, cold, quiet room. I didn't say much. I looked like I was listening. I wasn't though. I checked out pretty much after I heard words like.............life-threatening, open heart surgeries, heart transplants, risks, complications etc. etc. etc. When the meeting (torture session was more like it) was over, Jaime (our beloved pediatric cardiolgist still to this day
) noted that I had handled the news remarkably well.......better than most. Little did she know however that on the way back to the elevator I ducked into an empty room and collapsed in tears. Hypoplastic Left Heart Syndrome. What the heck is that you say? In simple terms a life-threatening congenital heart condition characterized by a complex set of heart defects incompatible with life. The most prominent defect is an underdeveloped and, as a result, nonfunctional left ventricle; hence the name "hypoplastic LEFT heart". Left untreated a newborn baby will die within a week. The treatment? A series of open-heart surgeries (generally 3, sometimes more depending on complications) within the first 3-4 years of life OR a heart transplant. Until the 1980's all babies born with this condition simply died. They often referred to them as 'blue babies'. My Dad (now 80 yrs old) tells me of his brother, a 'blue baby' who died at birth. Hmmmmmmmm.....makes me wonder.
It's been over 20 yrs since they pioneered the surgeries that now give these babies a chance at life. It's not a cure per se. Their hearts are not fixed. There's still alot of funky stuff going on in there. But they work
The surgeries manipulate the anatomy and physiology in such a way that the heart works and supports life. For how long no one is quite sure yet. In the fall that Matty was diagnosed Boston Children's Hospital was also pioneering a fetal intervention; a surgical intervention that might alter the course of the disease process in utero. They asked us if we were interested in participating. There were no guarantees and in fact, there were serious risks. But we decided Matty deserved a chance to avoid all the surgeries and the life-long uncertainties that would come with being born with HLHS. So we said yes. We were the 8th to have the procedure done. I was 25 wks pregnant.Long story short, the next 13 weeks were filled with countless fetal echocardiograms in an effort to check for positive changes. We had such high hopes. But in the end, Matty was still born with HLHS (albeit with a better than average prognosis due to anatomical specifics - i.e. an aorta that was near normal size-wise......something not typical of HLHS.......................we attribute this to the fetal intervention). Our journey had begun.
I won't bore you (or myself) with the details of the next 6 yrs. Suffice to say we have had more than our share of open-heart surgeries and other related procedures; lots of doctors visits, medications etc. We've had issues with eating (my carpets will forever be a reminder of the days of projectile vomiting
). We've had issues with growth. Matty is a tiny bundle of energy. He and his 4 yr old brother (Matty will be 7 in January) are pretty much head to head. He is such a skinny little bean. Not even ON the charts But that's ok. Developmentally he was always on the later end of normal, but he always got to where he needed to be, just in his own timeframe. He started Kindergarten this year (I waited an extra year) and he absolutely loves it I expect some academic struggles because of the first two years of life when his oxygen levels were soooooo low (high 60's/low 70's for the first 6 months; low to mid 80's until age 2..............now in the high 90's. For those who don't know, 100 is normal). But that's ok. He's here. He's living the life of a normal little boy. That's a gift in of itself.So Matty. Who is Matty? A crazy, silly, fun and fascinating little creature; always on-the-go and ready to have a good time. He'll try almost anything (at least once
). He loves adventure. He loves amusement parks and water parks. He LOVES Elmo (just don't tell his friends). He loves his swimming lessons (ok, so no matter he's been in the pollywog class for 2 yrs now); is an orange belt in karate; takes tennis lessons (his favorite sport) and rock-climbing, and learned how to ski last year! Matty has an infectious laugh. He is sweet. Still alittle shy and reserved among those he does not know but we're working on that. And, truth be told, he's a momma's boy (how lucky am I???????) I still can't believe MAW is doing this for my little kooky kid. He sooo deserves it. It's just gonna be great!!!!!!!!
More pictures coming soon
Pamela
I'm so proud of myself! 
.
:
Oh well.....all for a good cause right?????
Can't hurt! 
