schoolie monster
01-14-2003, 01:30 PM
Hey SB.comers, I hope your holidays were excellent and nobody's freakin' out too bad about bein' in the depths of winter.
I just wanted to take a few minutes to tell my friends here on the boards what's been going on with me over the past few months... and more importantly, let everyone know that I will have to beautiful baby girls home very soon.
I guess things all started over the summer when we went from being just pregnant to being pregnant with twins. We were pretty shocked at the time, but that really didn't last long. Shortly after finding out we were expecting twins, our doctor informed us we may have a problem. One of the baby's placental sacks was showing excess fluid, while the other was low. This indicated that they may be afflicted with Twin to Twin Transfusion Syndrome (TTTS)... what? We had no idea what that was, but we quickly educated ourselves. TTTS is a disease of the placenta. The mother is fine. The babies are fine. There is simply unequal blood sharing between the babies. One baby sends too much blood to the other, leading to buildup of amniotic fluid in one baby, severe anemia in the other. Without getting into the details, this leads to a host of problems and the diagnosis is not good when diagnosed this early. Untreated, its 90-100% fatal, and survivors have very high rates of many other problems such as cerebral pulsey.
Traditional treatment is amnio-reduction. They simply take a big needle and withdraw fluid from the receiving baby's sack. This doesn't help the donor baby at all and again, we were looking at very long odds. Amnio-reduction has a success rate of 20-50% for saving one baby. And those percentages drop significantly when diagnosed this early. In fact, our doctor, the head of Obstetrics at Brigham and Women's Hospital which is one of the best in the world, told us that realistically, this was not an option.
Over the past 10 years, two doctors have developed a procedure which uses laser surgery to coagulate these extra blood vessels which cause the unequal blood flow. This surgery is considered fairly experimental, however, the success rate has been very good. The key is that if they can locate the offending vessels, they can correct the problem. Its not without its risks. Any surgery on a pregnant woman can cause pre-term labor, etc. However, it basically came down to a choice between the surgery, or terminating the pregnancy. Karen and I didn't feel this was an option.
We opted for the surgery. Dr. Ruben Quintero at St. Joseph's hospital in Tampa, FL is the world authority in this procedure. He has the most experience and our doctor had worked with him and observed the procedure. No brainer, we are goin' to Tampa. However, our insurance provider didn't agree with our decision. We filled out a billion forms and got all the referals, but they thought it would be best to send us to a guy in Rhode Island who had done the procedure 7 times. After our doctor contacted them and flipped out, they changed their mind. They approved us to join the Philadelphia Children's Hospital double-blind clinical trial. This clinical trial is set up to study the benefits of laser surgery vs. amnio-reduction. Three issues... number one, when you enter a double blind clinical trial, your treatment is decided completely by random. Not based on your condition, but by the flip of a coin. Number two... all pre- and post-natal care had to be done in Philly, or one of its affiliates, the closest being in NY City. So either Karen would have to move down there for six months, or she would have to travel their twice a week up until she was admitted to the hospital. Number three... they had less experience doing the surgery than the guy in RI.
I have my doubts, our insurance company had our best interests in mind.
We basically told them to f--- off and flew to Tampa and maxed out our credit cards and paid for it ourselves. We would deal with the insurance later.
The last week of August, we flew down to Tampa and had the surgery. Karen came through well and they were able to find and zap two large arteries that weren't supposed to be there. We stayed there about a week and came home.
Things were going fantastically. The fluid levels began to equalize, the babies were healthy, however on November 13th (at 28 weeks... full term being 40) Karen unexpectantly went into labor. Alyssa and Jessica were born 2lbs 3oz and 2lbs 6oz.
I heard alot of stories of 1 lb babies surviving and doing fine and I know that Brigham's is a great hospital, but this was scary to see them with tubes and wires... it wasn't very fun. We knew we would have a couple tough months ahead, but at every step they were doing pretty well.
Fast forward 2 months. Alyssa is 4lbs 14oz+ and Jessie is 5lbs 5oz+... they are feeding 100% from the bottle and are doing fantastic. Our primary nurse started the discharge paperwork yesterday and they will be coming home some time over the next week or so. They are alert and chubby now... they are so cool.
In addition, we had appealed our insurance co's decision with the Office of Patient Protection here in Mass. Right before Christmas, we received word that their decision not to cover the surgery in Tampa was overturned and they had to pay... f%#$ers, darn right. In the grand scheme of things, this was less important, but it was pretty much everything we had, so it was a big deal to win.
As a side note, in these insurance cases, please explore all your options. I now get the feeling that they often decline coverage hoping a certain percentage of people simply don't pursue it. It cost them very little to go thru this appeal process... several hundred dollars is all. We've done research and 42 states offer similar agencies. Just wanted to pass that info on. Follow thru and exhaust your options.
It freaks me out to think that a decade ago, they might not have made it. The surgery itself and the advances in care for premature babies are amazing. I've been hesitant to let anyone know what was goin' on 'cause you just don't want to jinx yourself.
With all the troubles we all go thru, I hope this story makes you feel just a fraction of the happiness I have. Here are your future striped bassers, Jessica and Alyssa.
I just wanted to take a few minutes to tell my friends here on the boards what's been going on with me over the past few months... and more importantly, let everyone know that I will have to beautiful baby girls home very soon.
I guess things all started over the summer when we went from being just pregnant to being pregnant with twins. We were pretty shocked at the time, but that really didn't last long. Shortly after finding out we were expecting twins, our doctor informed us we may have a problem. One of the baby's placental sacks was showing excess fluid, while the other was low. This indicated that they may be afflicted with Twin to Twin Transfusion Syndrome (TTTS)... what? We had no idea what that was, but we quickly educated ourselves. TTTS is a disease of the placenta. The mother is fine. The babies are fine. There is simply unequal blood sharing between the babies. One baby sends too much blood to the other, leading to buildup of amniotic fluid in one baby, severe anemia in the other. Without getting into the details, this leads to a host of problems and the diagnosis is not good when diagnosed this early. Untreated, its 90-100% fatal, and survivors have very high rates of many other problems such as cerebral pulsey.
Traditional treatment is amnio-reduction. They simply take a big needle and withdraw fluid from the receiving baby's sack. This doesn't help the donor baby at all and again, we were looking at very long odds. Amnio-reduction has a success rate of 20-50% for saving one baby. And those percentages drop significantly when diagnosed this early. In fact, our doctor, the head of Obstetrics at Brigham and Women's Hospital which is one of the best in the world, told us that realistically, this was not an option.
Over the past 10 years, two doctors have developed a procedure which uses laser surgery to coagulate these extra blood vessels which cause the unequal blood flow. This surgery is considered fairly experimental, however, the success rate has been very good. The key is that if they can locate the offending vessels, they can correct the problem. Its not without its risks. Any surgery on a pregnant woman can cause pre-term labor, etc. However, it basically came down to a choice between the surgery, or terminating the pregnancy. Karen and I didn't feel this was an option.
We opted for the surgery. Dr. Ruben Quintero at St. Joseph's hospital in Tampa, FL is the world authority in this procedure. He has the most experience and our doctor had worked with him and observed the procedure. No brainer, we are goin' to Tampa. However, our insurance provider didn't agree with our decision. We filled out a billion forms and got all the referals, but they thought it would be best to send us to a guy in Rhode Island who had done the procedure 7 times. After our doctor contacted them and flipped out, they changed their mind. They approved us to join the Philadelphia Children's Hospital double-blind clinical trial. This clinical trial is set up to study the benefits of laser surgery vs. amnio-reduction. Three issues... number one, when you enter a double blind clinical trial, your treatment is decided completely by random. Not based on your condition, but by the flip of a coin. Number two... all pre- and post-natal care had to be done in Philly, or one of its affiliates, the closest being in NY City. So either Karen would have to move down there for six months, or she would have to travel their twice a week up until she was admitted to the hospital. Number three... they had less experience doing the surgery than the guy in RI.
I have my doubts, our insurance company had our best interests in mind.
We basically told them to f--- off and flew to Tampa and maxed out our credit cards and paid for it ourselves. We would deal with the insurance later.
The last week of August, we flew down to Tampa and had the surgery. Karen came through well and they were able to find and zap two large arteries that weren't supposed to be there. We stayed there about a week and came home.
Things were going fantastically. The fluid levels began to equalize, the babies were healthy, however on November 13th (at 28 weeks... full term being 40) Karen unexpectantly went into labor. Alyssa and Jessica were born 2lbs 3oz and 2lbs 6oz.
I heard alot of stories of 1 lb babies surviving and doing fine and I know that Brigham's is a great hospital, but this was scary to see them with tubes and wires... it wasn't very fun. We knew we would have a couple tough months ahead, but at every step they were doing pretty well.
Fast forward 2 months. Alyssa is 4lbs 14oz+ and Jessie is 5lbs 5oz+... they are feeding 100% from the bottle and are doing fantastic. Our primary nurse started the discharge paperwork yesterday and they will be coming home some time over the next week or so. They are alert and chubby now... they are so cool.
In addition, we had appealed our insurance co's decision with the Office of Patient Protection here in Mass. Right before Christmas, we received word that their decision not to cover the surgery in Tampa was overturned and they had to pay... f%#$ers, darn right. In the grand scheme of things, this was less important, but it was pretty much everything we had, so it was a big deal to win.
As a side note, in these insurance cases, please explore all your options. I now get the feeling that they often decline coverage hoping a certain percentage of people simply don't pursue it. It cost them very little to go thru this appeal process... several hundred dollars is all. We've done research and 42 states offer similar agencies. Just wanted to pass that info on. Follow thru and exhaust your options.
It freaks me out to think that a decade ago, they might not have made it. The surgery itself and the advances in care for premature babies are amazing. I've been hesitant to let anyone know what was goin' on 'cause you just don't want to jinx yourself.
With all the troubles we all go thru, I hope this story makes you feel just a fraction of the happiness I have. Here are your future striped bassers, Jessica and Alyssa.