SandalwoodMomof3
Earning My Ears
- Joined
- Dec 3, 2011
- Messages
- 39
I have been lurking on the board for a couple of weeks while waiting for our wish trip to be confirmed. I'm now a "member" and I hope I do this right!
The Who: My name is Rhonda. I am the mommy to dd Manya, 8, ds and wish kid AJ (Anthony) who is 6, and ds Jasiu, who is 5 (my boys are 11 months and 3 weeks apart - Happy Valentine's Day!!!). Wife to dh Brad, who is the glue that keeps it all from falling apart sometimes
.
The Why: We moved to California from Buffalo right after marrying, but once we decided to start a family, we moved back "East" to Pittsburgh, PA, where most of dh's family lives. Got pregnant pretty much right away, but my water broke at 17.5 weeks, and I had a stillborn son 8 weeks later. After discovering that I had a genetic abnormality with my uterus, the option was surgery or try again...so we got pregnant 6 months after and I miscarried at 12 weeks. We decided to try one more time, and got pregnant a short 3 months later - and nine months later...right on time...my beautiful daughter Manya was born, a healthy 7 lbs. 14 oz.
A year and a half later we tried again, and I got pregnant quickly with a son! All was well - they followed my pregnancy very closely to be safe, and he was born (again, right on time - November 1) a healthy 8 lbs on the nose! He passed his apgars, but when they did his blood gasses, they were all screwed up. And his cry was really soft, but the nurse reassured me that all babies have their own cry. The Pediatrician even told me that worst case scenario he would have a hole in his heart that sounded scarier than it was. So I sent DH home before the Ped. Cardiologist came in with the results of the echo. And that is when our lives changed forever.
AJ was born with a hole in both the upper and lower chambers of the heart and a mitral valve that was floppy and barely attached to anything. He was in congestive heart failure and needed surgery, but it was deemed "too risky" at his current weight, so it would be scheduled when he hit 10 lbs. That was only 2 lbs of weight gain, so we figured we could do it.
5 weeks later, on December 5, AJ began vomiting and retracting, and he turned white, so we life-flighted to Children's Hospital in Pittsburgh. AJ weighed 6 lbs. 12 ounces at this point, and they tried to get his weight up, but on December 21 at 6 lbs. 8 oz. they operated. After surgery the CT surgeon came out and said "we fixed his ASD and the valve!"
I'm rambling so I'll try to tighten this story up...AJ returned to heart failure 2 days after we were released from the hospital, and at 16 weeks they were forced to put a titanium valve in place of his damaged mitral valve. Thinking all was well, we celebrated! Again, less than a week after being released from the hospital, AJ was back in heart failure. They tried lots of different medicines trying to control the failure, but his heart was not functioning properly, no matter what they did. Every 5 or 6 weeks we were back in an ambulance being rushed to Children's, where he would do great on IV meds and slowly fail on the take-home stuff. I also gave birth to another son, Jasiu, on October 25 - a week before AJ's first birthday. And he had a hole in his heart, but it is closing on its own, Thank God.
So a week before AJ's 2nd birthday, we were told he would have to be put on the transplant list because it was only a matter of time before AJ's heart, which was trying so hard to compensate for the damage, would give out completely. In order to put AJ on the list, they would confirm the diagnosis via Heart Catheterization. That was scheduled for Monday, October 25, 2007 (my other baby, Jasius first birthday).
Here is when AJs story finally begins to turn around they did the cath and said his heart looked better than they expected! That was the good news the bad news is they didnt know exactly what to do to help his heart recovery by itself
We tried a new medicine combination Carvedilol, Enalapril (new), Lasix, Digoxin, and of course Coumadin, and AJs heart failure number was in the 100s for the first time! Not completely out of failure, but much better.
In June of 2008 (6 months later) AJs Ped Cardiologist called me with some news a doctor in LA had pioneered the use of a pacemaker for something called RST re-synchronization therapy, and he thought it may teach AJs heart how to function better. Would I allow him to send this doctor AJs full medical history? (Um, of course!!)
Sorry I said Id tighten up
So two weeks before AJs third birthday, AJ was implanted with a pacemaker a big honking thing in his stomach area that makes him look like he swallowed a hockey puck. A week after surgery we got his test results back and that is the last time AJ has been in heart failure. That was 3 years ago!!! However, this next summer AJ will need that valve replaced hes outgrown it considering he now weighs 50 pounds!
Where Make Wish comes in: AJ was referred to MAW way back when he was almost on the transplant list. We have always wanted to wait until AJ was older and could remember everything, and we were hoping to wait until he was around 8. But in September his pacemaker started acting funny, and they say one of his leads is deteriorating. Then in October we had a little issue with his increased volume of liquid meds making him vomit. So right before Thanksgiving we decided to plan on making AJs wish come true since he is so relatively healthy right now. We called MAW, and they came and made our whole family feel so special and AJ asked to go this Christmas but it was just too close and they didnt think it would happen! We gave them some dates for the spring to go to GKTW then on Monday of last week MAW called us and asked if we would consider going 12/10 12/16 of THIS YEAR!!! After dh and I looked at the calendar, we just could not say no God had opened this door for us RIGHT NOW and we had to walk through on faith.
So we are leaving a week from today, and thats why Im here. MAW is being very secretive about our trip I know its to make it special but Im so nervous about what we should be planning ourselves before we go and what things they might have planned for us none of us has ever been to Disney!
Any help would be appreciated
Thanks for listening it felt good to get it all out now that AJ is doing well telling that story used to be a heart-breaker for me.
Here are some pics of the fam:
AJ's first Christmas - with my dd Manya:
http://im1.shutterfly.com/media/47b...M2jRy0ag9vPhI/cC/f=0/ps=50/r=0/rx=550/ry=400/
AJ with my favorite Cardiothoracic Surgeon of all time and my personal hero, Dr. Morrell:
http://www.carepages.com/assets-10.7.1.1/images/carepages/0015/9949/66423_AJ_DrMorrell_display.jpg
AJ after getting his pacemaker (with his best friend Shrek):
http://www.carepages.com/assets-10.7.1.1/images/carepages/0015/9949/98823_AJ_Sat_2_display.jpg
AJ showing off his "hockey puck":
http://www.carepages.com/assets-10.7.1.1/images/carepages/0015/9949/43839_DSCF0008_display.JPG
All of us at Hilton Head this summer:
The Who: My name is Rhonda. I am the mommy to dd Manya, 8, ds and wish kid AJ (Anthony) who is 6, and ds Jasiu, who is 5 (my boys are 11 months and 3 weeks apart - Happy Valentine's Day!!!). Wife to dh Brad, who is the glue that keeps it all from falling apart sometimes
.The Why: We moved to California from Buffalo right after marrying, but once we decided to start a family, we moved back "East" to Pittsburgh, PA, where most of dh's family lives. Got pregnant pretty much right away, but my water broke at 17.5 weeks, and I had a stillborn son 8 weeks later. After discovering that I had a genetic abnormality with my uterus, the option was surgery or try again...so we got pregnant 6 months after and I miscarried at 12 weeks. We decided to try one more time, and got pregnant a short 3 months later - and nine months later...right on time...my beautiful daughter Manya was born, a healthy 7 lbs. 14 oz.
A year and a half later we tried again, and I got pregnant quickly with a son! All was well - they followed my pregnancy very closely to be safe, and he was born (again, right on time - November 1) a healthy 8 lbs on the nose! He passed his apgars, but when they did his blood gasses, they were all screwed up. And his cry was really soft, but the nurse reassured me that all babies have their own cry. The Pediatrician even told me that worst case scenario he would have a hole in his heart that sounded scarier than it was. So I sent DH home before the Ped. Cardiologist came in with the results of the echo. And that is when our lives changed forever.
AJ was born with a hole in both the upper and lower chambers of the heart and a mitral valve that was floppy and barely attached to anything. He was in congestive heart failure and needed surgery, but it was deemed "too risky" at his current weight, so it would be scheduled when he hit 10 lbs. That was only 2 lbs of weight gain, so we figured we could do it.
5 weeks later, on December 5, AJ began vomiting and retracting, and he turned white, so we life-flighted to Children's Hospital in Pittsburgh. AJ weighed 6 lbs. 12 ounces at this point, and they tried to get his weight up, but on December 21 at 6 lbs. 8 oz. they operated. After surgery the CT surgeon came out and said "we fixed his ASD and the valve!"
I'm rambling so I'll try to tighten this story up...AJ returned to heart failure 2 days after we were released from the hospital, and at 16 weeks they were forced to put a titanium valve in place of his damaged mitral valve. Thinking all was well, we celebrated! Again, less than a week after being released from the hospital, AJ was back in heart failure. They tried lots of different medicines trying to control the failure, but his heart was not functioning properly, no matter what they did. Every 5 or 6 weeks we were back in an ambulance being rushed to Children's, where he would do great on IV meds and slowly fail on the take-home stuff. I also gave birth to another son, Jasiu, on October 25 - a week before AJ's first birthday. And he had a hole in his heart, but it is closing on its own, Thank God.
So a week before AJ's 2nd birthday, we were told he would have to be put on the transplant list because it was only a matter of time before AJ's heart, which was trying so hard to compensate for the damage, would give out completely. In order to put AJ on the list, they would confirm the diagnosis via Heart Catheterization. That was scheduled for Monday, October 25, 2007 (my other baby, Jasius first birthday).
Here is when AJs story finally begins to turn around they did the cath and said his heart looked better than they expected! That was the good news the bad news is they didnt know exactly what to do to help his heart recovery by itself
We tried a new medicine combination Carvedilol, Enalapril (new), Lasix, Digoxin, and of course Coumadin, and AJs heart failure number was in the 100s for the first time! Not completely out of failure, but much better.
In June of 2008 (6 months later) AJs Ped Cardiologist called me with some news a doctor in LA had pioneered the use of a pacemaker for something called RST re-synchronization therapy, and he thought it may teach AJs heart how to function better. Would I allow him to send this doctor AJs full medical history? (Um, of course!!)
Sorry I said Id tighten up
So two weeks before AJs third birthday, AJ was implanted with a pacemaker a big honking thing in his stomach area that makes him look like he swallowed a hockey puck. A week after surgery we got his test results back and that is the last time AJ has been in heart failure. That was 3 years ago!!! However, this next summer AJ will need that valve replaced hes outgrown it considering he now weighs 50 pounds!
Where Make Wish comes in: AJ was referred to MAW way back when he was almost on the transplant list. We have always wanted to wait until AJ was older and could remember everything, and we were hoping to wait until he was around 8. But in September his pacemaker started acting funny, and they say one of his leads is deteriorating. Then in October we had a little issue with his increased volume of liquid meds making him vomit. So right before Thanksgiving we decided to plan on making AJs wish come true since he is so relatively healthy right now. We called MAW, and they came and made our whole family feel so special and AJ asked to go this Christmas but it was just too close and they didnt think it would happen! We gave them some dates for the spring to go to GKTW then on Monday of last week MAW called us and asked if we would consider going 12/10 12/16 of THIS YEAR!!! After dh and I looked at the calendar, we just could not say no God had opened this door for us RIGHT NOW and we had to walk through on faith.
So we are leaving a week from today, and thats why Im here. MAW is being very secretive about our trip I know its to make it special but Im so nervous about what we should be planning ourselves before we go and what things they might have planned for us none of us has ever been to Disney!
Any help would be appreciated
Thanks for listening it felt good to get it all out now that AJ is doing well telling that story used to be a heart-breaker for me.Here are some pics of the fam:
AJ's first Christmas - with my dd Manya:
http://im1.shutterfly.com/media/47b...M2jRy0ag9vPhI/cC/f=0/ps=50/r=0/rx=550/ry=400/
AJ with my favorite Cardiothoracic Surgeon of all time and my personal hero, Dr. Morrell:
http://www.carepages.com/assets-10.7.1.1/images/carepages/0015/9949/66423_AJ_DrMorrell_display.jpg
AJ after getting his pacemaker (with his best friend Shrek):
http://www.carepages.com/assets-10.7.1.1/images/carepages/0015/9949/98823_AJ_Sat_2_display.jpg
AJ showing off his "hockey puck":
http://www.carepages.com/assets-10.7.1.1/images/carepages/0015/9949/43839_DSCF0008_display.JPG
All of us at Hilton Head this summer:
