Twins to come home soon

[schoolie monster]

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.

[Van]

SM:

I Figured you were very busy with the new arrivals, but didn't know the extent. Very glad to hear that it all worked out.

God must have been looking out for them and you (both).

Two beautiful girls you got there.
Again I'm happy for all of you..

V.

[Mr. Kav]

thanks for sharing that story, it made me feel great that everything worked out for you. warmest congrats to you and your family schoolie monster.

[Slipknot]

Well congrats to you and Karen and I'm happy for you that it seems to all be working out now. Those are 2 very cute babies you have there. It sounds like it has been a very long road for you and that will make the day they come home that much sweeter. I wish you two all the best with your family.

[JohnR]

Hey Greg. Glad they are doing so much better now. I volunteer Gwen to babysit for you. Probably one of the few Karen will allow ...

I'm just glad they are coming home.

(also happy the Ins Co must step up now!)

[MountainBreeze]

Congratulations Schoolie!

Much health and happiness!!!

Regards,
Rob

[Jimbo]

Congratulations. Sometimes even a confirmed lurker has to respond. That was such a heartwarming story I shared it with a couple of my co-workers who are now still drying their eyes. Glad everything worked out. Those girls are just beautiful I wish for your entire family all the very best and that they do grow up to be striper fisherpeople.

[GBOUTDOORS]

Wow thats great I am so glad to hear that all is well and that you and your wife will soon be able to have your family home with you . Twins are the best there will be some bumps along the way but with what you have been thourgh it should be a cake walk. Our twins are now 24 and on thier own so trust me when I say it gos by all to fast. ENJOY!

[UserRemoved1]

Congrats....I know what it's like too man!

[Saltheart]

Two beautiful Babys!!

Glad you beat the insurance co. I think you are right about them hoping people will just drop out instead of pursuing it.

I hope the girls have good health and happy long lives with both their parents.

Two beautiful babys!!

[Billybob]

Aren't they beautiful !
Congrats, S-M you made all the right moves. I'm glad it worked out - enjoy them.
Kids are great, in fact today's my oldest son's birthday and I'm meeting him up in Hartford for the Uconn game. 17 years ago he was a little bundle like that, where does the time go?

Bill

[NJSurf]

Great News!

Couple real cuties there. Congratulations, Im glad all worked out well.

Ive got my third little one on the way, due in early May.

[Got Stripers]

Getting any sleep yet , I'll bet not, but it sounds like emotionally things might be getting easier for you. I'm so glad to here the girls are coming home, that will be a tremendous day for your family for sure. I'd volunteer for babysitting for a day, but I've only had 3 boys, so I'm not qualified.

Hey does this mean that maybe you might get a day off for good behavior. I know just what to suggest, assuming it doesn't ice over this week, man it's cold.

[TheSpecialist]

Greg congratulations to you and your wife. You guys take it easy, I know twins can wear you out. My partner at work just had them, and he gets little to no sleep at home. I carry the weight at work so he can get some rest.

[Fishpart]

Beautiful babies!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hope you and Karen enjoy them.

[gilligan]

twins! wow!

[Squid kids Dad]

Greg,,,,Great story..I am so happy it turned out well...ENJOY those two beautiful babies...congrats

[Clammer]

MR & MRS S/M== congratulations/// Glad all is going well, hope you guys can make the 15th

[mrmacey]

Hi SM, this is Mrs. Macey. I just read about your beatiufl girls and wanted to thank you and Karen for sharing your story with all of us. Mr. Macey & I are due in March with our first child and I can't even began to understand what you have gone through. GOD, your faith and determination saw you through this event and has blessed you with a new perspective on life. Not to mention the new prospective on life it has brought me. Jessica & Alyssa have strong, wonderful and loving parents. You truly are an inspiration.

God Bless

[Bill L]

SM, I'm sitting here drying my eyes at the sight of those two BEAUTIFUL babies. God bless you all!

And may those (*@$%)( at the insurance co. get what they deserve

[Mr. Sandman]

Nice to hear a happy ending and everyone is doing well. What an ordeal that must have been for you and your wife (and your family)
What a feeling of relief it must be just to have the family in their home together.
good luck to you Mr and Mrs. schoolie monster !!

[Carl]

SM & Mrs SM,

Congratulations on your twins! You are an inspiration. God bless both of you and your kids.

[chris L]

Greg
Im so gald to hear the twins and your wife are doing well . Great news is always welcome !

Good luck !

them some pretty girls there .

[179]

Schoolie,
Congrats to you and your wife, the babies are beautiful. It's hard to believe my youngest son is almost 7-weeks old, it seems like yesterday he was just born....

[schoolie monster]

179, he was just born... congrats to you as well. GB and Billybob mentioned how fast the time goes. I can definitely relate. I can't believe that my oldest daughter is 5 already. Going thru all this again, the sights, sounds and smells of the hospital really brought that all back. In ways, it seems like yesterday, in others, its seems like forever.

We really appreciate everyone's well-wishes. Its been a roller coaster, but what an amazing thing to just hold them for a while. Its been so positive over the past month, you almost can't remember how low you got at times.

Like I said, they are just cool. And I can't help putting up just one more picture. Then I'll stop.

Thanks again.

[hooked]

Hey, don't stop with the pictures. This is a great post, great news and very inspiring.

Congratulations and best wished for the future.

Just think, double the fun during the terrible two's (not to mention having 3 teenage daughters before you know what hit you).

[JohnR]

Greg - at least they don't look like your Dad ... Put up all the pictures you want! Think Nantucket is out of the picture this year?

[schoolie monster]

Three teenage girls... that is pretty scary, but as long as I have my garage and my boat to escape to/hide in, I should survive. I've got a ways to go till then, but thanks for reminding me Hooked... I appreciate that

John, I think the chances of hitting Nantucket this year are pretty close to slim and/or none. One of the other pieces of good news over the past month was no raises at the university this year. Found that out while things were still kinda at their lows... talk about piling on. So, between that and the twinners, I think Nantucket is definitely out... it hurts a little bit since I just started to figure out the bass a bit over there, but that's definitely a "luxury item." I've been fortunate to be able to do that and Florida the past few years... time to get back to reality.

Luckily, I can always get some time in Eastham. I should be taking advantage of that anyway. That's within shooting distance to the Monomoy and Brewster flats and some good beach fishing even though that's not exactly my specialty. Unless there are big schools of blues crashing bait with birds everywhere... then I'm pretty good at finding fish. Anyway, I'm glad to have that opportunity.

ps... I'm actually a little more bummed about no trip south this winter. Besides giving me something to look forward to and get me through the winter, I lost last year. Those redfish abused me and it left me with a bad taste in my mouth. I got some jacks and had fun, but I'm still psychologically damaged from that trip.

[JohnR]

but I'm still psychologically damaged from that trip.

You're "psychologically damaged" by your wife kicking your ass and catching more fish than you, hehehehe.

(I can say that as with last year being the exception, he'd been my fishing partner for a few years )

[HESH2]

GREG GREAT STORY ABOUT YOUR BEAUTIFULL GIRLS.SO HAPPY FOR YOUR AND YOUR FAMILY AFTER ALL YOU WENT THROUGH.INSURANCE COMPANYS REALLY DON'T GIVE A DAMN.