Cotton Fitzsimmons Posted May 26, 2012 Posted May 26, 2012 As many of you know I have enjoyed visiting this forum for a number of years to share the ups and downs of our team and (hopefully) bring a few smiles to the good folks here along the way. Unfortunately tonight I would like to ask for your prayers for our little girl. My wife is 28 weeks pregnant with our little girl and 2 weeks ago we learned that she has an exceedingly rare condition called Vein of Galen Malformation. This condition is caused by a malformed connection between the artery that goes to the brain and the vein that returns blood from the brain back to the heart. After spending a very long day at the University of Michigan hospital yesterday and having many tests (fetal EKG, MRI, ultrasounds, etc.) and meeting with their cardiologists and neuro surgeons we were told that our little girl likely will not survive. That said, my wife and I had been researching this condition over the past 2 weeks since the original diagnosis and joined a parents support group and through that have learned of an endovascular surgeon, Dr. Alex Berenstein, at Roosevelt Hospital in NYC who has had great success in treating infants and children with this deadly disease. We have had all of our records and tests sent there and will be planning to travel from Michigan to see their team at Roosevelt, where my wife will likely deliver, and hope that they are able to save our little girl's life. As some of you may know, we lost our first born only a couple of hours after he was born due to complications from premature birth. My wife had many complications in her second pregnancy, but our little boy made it through. Despite all of the problems we have had, which have been a long series of medical anomalies that doctors have not been able to explain, my wife being the trooper she is, wanted to try one more time. She comes from a large family and desperately wanted to give our son a sibling to grow up with. Needless to say, the news we have gotten in the past days has been devastating, but we are hoping with the prayers and support of our family and friends and my family here at TBD, we will get our little girl here healthy and happy. Despite her condition, my wife has reported to me that she is kicking much harder and is stronger than either one of our boys in her two previous pregnancies. This was evident at U of M yesterday when she was extremely feisty and uncooperative during all of the ultrasounds and tests. All I can say is I'm sure she is a Bills fan like her daddy and will share in our toughness and resilience. We had read of a little girl in Batavia who suffered from this condition and made the trip to Roosevelt Hospital and was cured by Dr. Berenstein and his team, if you happen to be out there somewhere on this board (which I am making the assumption being Bills fans you might be, because where else would you rather be than TwoBillsDrive?) we would love to hear from you and any insight you could give us on your experience that may help us on our journey. Also, if anyone has any advice or insight on traveling to NYC and Roosevelt hospital it would be much appreciated. I have only been to the city once, about 15 years ago and have little familiarity with Manhattan's Upper West Side where the hospital is located. As soon we get the word from the team at Roosevelt if/how they can help us we likely will be traveling from Michigan on a shoe string budget, so if anyone has any advice on where to stay, eat, etc. near the hospital we would greatly appreciate it. We are in contact with the social worker at Roosevelt who is the contact person to possibly get us into the Ronald McDonald House near Roosevelt, but it is based on availability which can be limited, so I am trying to do all of the leg work I can ahead of time to have plan B and C lined up and keep as much stress off my wife and baby as possible. Thank you in advance for the prayers that you send our way. GO BILLS!
ajzepp Posted May 26, 2012 Posted May 26, 2012 You got it...thoughts and prayers headed your little girl's way
Cugalabanza Posted May 26, 2012 Posted May 26, 2012 Wow, sending all positive thoughts & wishes to your little girl!
truth on hold Posted May 26, 2012 Posted May 26, 2012 (edited) Prayers going out. I wouldn't let NYC scare you just because it's NYC. There are plenty of budget places to stay all over. And good thing about Roosevelt location its close to major subway lines like 1/9 and A/C, which is a $5 round trip to pretty much anywhere up and down west side. Its also close to central park to help with your psyche. Obviously hospital is primary place to look for guidance, but you may also want to check out Craigslist for places to stay on west side of manhattan. http://newyork.craigslist.org/mnh/hhh/ Midtown locations could also work for Roosevelt. Edited May 26, 2012 by Joe_the_6_pack
LeviF Posted May 26, 2012 Posted May 26, 2012 Sending whatever good is left in me your way, YE OLE. Don't have much in the way of NYC advice (I'm only there once in a while), but make sure you make that social worker earn their pay. They should know about the hotels for the budget-conscious that are nearby.
SageAgainstTheMachine Posted May 26, 2012 Posted May 26, 2012 Prayers going out. I wouldn't let NYC scare you just because it's NYC. There are plenty of budget places to stay all over. And good thing about Roosevelt location its close to major subway lines like 1/9 and A/C, which is a $5 round trip to pretty much anywhere up and down west side. Its also close to central park to help with your psyche. Obviously hospital is primary place to look for guidance, but you may also want to check out Craigslist for places to stay on west side of manhattan. As for food, the prices can be a hassle in Manhattan if you don't resign yourself to fast food...my suggestion is to make frequent visits to the Whole Foods grocery store in Columbus Circle (just South of the park and a stone's throw from Roosevelt). My thoughts are with you and your family. Having a little Bills fan in the womb certainly helps...she's a fighter already.
boyst Posted May 26, 2012 Posted May 26, 2012 The best of luck to you and you will be in my thoughts and hopes.
Beerball Posted May 26, 2012 Posted May 26, 2012 God Bless you and yours Ye. Prayers heading your way.
Mike In Illinois Posted May 26, 2012 Posted May 26, 2012 Ye shall be in my thoughts and prayers. Please keep us updated on the family when you are able to.
Just Jack Posted May 26, 2012 Posted May 26, 2012 Also, if anyone has any advice or insight on traveling to NYC and Roosevelt hospital it would be much appreciated. I have only been to the city once, about 15 years ago and have little familiarity with Manhattan's Upper West Side where the hospital is located. As soon we get the word from the team at Roosevelt if/how they can help us we likely will be traveling from Michigan on a shoe string budget, so if anyone has any advice on where to stay, eat, etc. near the hospital we would greatly appreciate it. We are in contact with the social worker at Roosevelt who is the contact person to possibly get us into the Ronald McDonald House near Roosevelt, but it is based on availability which can be limited, so I am trying to do all of the leg work I can ahead of time to have plan B and C lined up and keep as much stress off my wife and baby as possible. Obviously the closer you can be the better, but hotels in New Jersey can be cheaper than Manhatten. That's near the Lincoln tunnel. I can't recommend anything specific in Jersey, I haven't stay in that area, just further north and south for me. But in this case, you're only looking for a bed, not a vacation resort. Sometimes hospitals have agreements with local hotels for discount rates for the families. And like JT6P suggested, use the subway if you can.
Mr Info Posted May 26, 2012 Posted May 26, 2012 I know the family in Batavia & donated for that little girl. Call me 804-641-2088 and I will get you in touch with them.
Nick in RaChaCha Posted May 26, 2012 Posted May 26, 2012 My thoughts and prayers are going out to you and your family. I just know things will work out - be strong and have faith.
WWVaBeach Posted May 26, 2012 Posted May 26, 2012 My thoughts and prayers are with you and your family.
bbb Posted May 26, 2012 Posted May 26, 2012 Obviously the closer you can be the better, but hotels in New Jersey can be cheaper than Manhatten. That's near the Lincoln tunnel. I can't recommend anything specific in Jersey, I haven't stay in that area, just further north and south for me. But in this case, you're only looking for a bed, not a vacation resort. Sometimes hospitals have agreements with local hotels for discount rates for the families. And like JT6P suggested, use the subway if you can. Agree with this. When I've had a car and was doing NYC on a budget, staying in Jersey was the way to go. I know it was still reeling from 9/11, but in 2003, we got an incredible deal on a nice name hotel near the Meadowlands - $38 a night for a great room. On Priceline. And, that was a summer weekend.
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