Cotton Fitzsimmons Posted June 7, 2012 Author Posted June 7, 2012 Don't know how I missed this thread. My prayers are with you and your family. Also, if you are still planning on delivering your daughter, this might be of interest to you and your wife: NILMDTS Joe, the work that Now I Lay me Down to Sleep does is truly honorable. Ironically, my wife and I had seen a program on TV about the work they do with families shorty before we lost our first born. We, of course never knew that we would one day find ourselves in that position having lost a child. That said, we're seeking treatment for our little girl and believe she will pull through this. The team at Roosevelt has had success in treating this condition and we hope and pray that their doctors will help her.
plenzmd1 Posted June 8, 2012 Posted June 8, 2012 Think nothing but positive thoughts..she will do amazing..i can just feel it!
Joe Miner Posted June 8, 2012 Posted June 8, 2012 Joe, the work that Now I Lay me Down to Sleep does is truly honorable. Ironically, my wife and I had seen a program on TV about the work they do with families shorty before we lost our first born. We, of course never knew that we would one day find ourselves in that position having lost a child. That said, we're seeking treatment for our little girl and believe she will pull through this. The team at Roosevelt has had success in treating this condition and we hope and pray that their doctors will help her. I pray everything works out the best for you guys.
boyst Posted June 11, 2012 Posted June 11, 2012 (edited) Bump Any updates Ye Ole? Edited June 11, 2012 by jboyst62
BillsFanM.D. Posted June 11, 2012 Posted June 11, 2012 Just saw this. Prayers for you, your wife, your son and your 'little' girl. I have four kids myself...including one who overcame fairly miraculous odds to survive. I'll be praying....and rooting for you all!
Cotton Fitzsimmons Posted June 11, 2012 Author Posted June 11, 2012 Bump Any updates Ye Ole? We went to our last appointment here in Michigan last Thursday and were able to get some pretty cool 3D ultrasounds of our little girl. She was feisty as ever and moving around a lot during the ultrasound and she has very chubby cheeks already... even more so than her big brother who was quite a ham himself when he was born. Maybe I'll try to scan and post a picture or two if it's cool with everyone. If you've never seen a 3D ultrasound, they're amazing. It's unbelievable the technology they have on this front. We've had the privellage of getting them during all 3 of my wife's pregnancies. Everything seemed to be about the same at that appointment. Her heart is still far too big, which is expected, but doesn't seem to be showing any significant signs of heart failure just yet. There's still no major fluid build up around her heart or lungs, which is a good sign, and no fluid on her brain. We are all set to fly out for NYC on Wednesday morning, and will have a run down of appointments with the pediatric cardiologists, OB's, and neurology team at Roosevelt that day. At that point, my wife should be admitted for about a week or so and they'll start an IV of digoxin that will hopefully help ease the stress on our little girl's heart over the next few weeks before she's born. At that point, the treatment protocol will begin in earnest. The expectation is they will do a C-section around 36 weeks, so long as her heart holds up that long and she will require an immediate embolization procedure to begin repairing the aneurism. Depending on how much they can block off the irregular blood flow on the first procedure may determine how many more she will need to be completely cured. I know I'm beating a dead horse here... but thank you again on behalf of my entire family for everything you guys have done. We are truly blessed to have such amazing support.
BillsFanM.D. Posted June 11, 2012 Posted June 11, 2012 I know I'm beating a dead horse here... No you're not. Keep thumping away. We're all here cheering for all of you!
The Avenger Posted June 12, 2012 Posted June 12, 2012 I missed this thread as well - not sure how I did that. As a parent of a child born with a very severe congenital heart defect, I can certainly remember the stress of waiting to delivery a baby with a serious heart condition. My son was diagnosed with Hyploplastic Left Heart Syndrome before he was born - essentially it meant that he was born with only half a heart - the left side never developed and he did not have a functioning left ventrical (the main pump to the body). It was incrediby difficult to wait for the birth - on the one hand you're so excited and so joyful to bring your new baby into the world and at the same time utterly terrified about the unknown and what could happen. Wost of all is the feeling that you are powerless - it is completely out of your control - there is nothing you can do except to be in the best hospital with the best doctors. You ask questions now about what will be, and quite frankly there are no answers - difficult to deal with that situation. My son had his first open heart surgery before he was even 48 hours old. His first surgery took 8 hours and for most of it his was on bypass meaning his heart was not beating. When he returned from the OR he had so many wires and tubes in him that you could barely see him through all of it. We could pick him up and hold him but first we had to manage all of the various lines and wires - it was quite amazing. There's not much to prepare you for an experience like that - a newborn goinig for cardiac surgery - there really are no words to describe except emotional and intense. We went through the process twice more - 2 more open heart surgeries when he was 5 months old and again when he was 2 - all were very stressful. BUT, I'm happy to say that everything was successful and we are far removed from those dark days. My son's cardiac health used to be an all-consuming cloud hanging over us - he's now 7 and I'm happy to say that I don't often even think about his heart (I almost feel guilty saying that). I wish I had some fantastic words of wisdom having been through a similar situation, but I don't. All I can say is that you get through it. Good things can and do happen - my son is proof. Medical technology is amazing - the things they can do never cease to amaze. Brace yourself, dig in, use whatever resources you have available to you - family, friends, support groups, communication with parents who have similar children. Stay strong for you and your wife - you can't imagine how much you'll need each other. IM me if I can help or you want to talk.
DDD Posted June 13, 2012 Posted June 13, 2012 I lived in midtown manhattan for a couple of years and know that area very well but don't really know the upper west side too well. Hotels are ridiculously expensive but my advice would be to stay as close to the hospital as you possibly can. Having a car in NYC is a liability. Street parking is a precious commodity/pain in the ass due to street cleaning and it will cost you about $30 per night to park in a garage. The best way for your pregant wife to get around is via cab which can be pricey. The public transportation system is fantastic including the subway but no way your pregnant wife will be walking up and down stairs that this requires including in the summer heat which can be stiffling. Hope this helped a little bit. Trust in your doctor and God...sounds like he's the best to help your daughter. As a fellow parent, happy father's day to you and I will pray for your daughter's speedy and complete recovery.
Cotton Fitzsimmons Posted June 14, 2012 Author Posted June 14, 2012 Just wanted to thank you all again for all of your support. We arrived in NYC yesterday morning and had a long day of tests and consultations with various specialists. The good news is they think that our baby's heart is in better condition than was reported to them from the University of Michigan. On the flip side, they are now diagnosing this aneurism as a possible genetic malformation in the RASA-1 gene, as my wife suffers from fairly severe vascular issues of her own as a complication to these last 2 pregnancies. They told us when all of this is done, there's a lab in Belgium that we can send out to and have tests done to confirm this issue in the gene. While it doesn't change the treatment or prognosis at all, it is interesting. Because of a heart murmur and the vascular issues that manifest during pregnancy for my wife, they are holding off on the digoxin IV treatment for a day or so while they do MRI and other tests on her. They truly seem to be a brilliant group of doctors for all things endovasular. They have let us know that they plan on us "moving" here to get this treatment done, which means we're going to be here it looks like now for at least 2-3 months. Adjusting to life here will be a bit of a challenge, but we feel blessed to have to found a group of doctors that have such a wealth of knowledge with regard to this disorder.
Just Jack Posted June 14, 2012 Posted June 14, 2012 They have let us know that they plan on us "moving" here to get this treatment done, which means we're going to be here it looks like now for at least 2-3 months. Adjusting to life here will be a bit of a challenge, but we feel blessed to have to found a group of doctors that have such a wealth of knowledge with regard to this disorder. There's several posters here that live/work in the NYC area, I'm not going to name names, that's up to them, but hopefully they will contact you so you can get together sometimes as a diversion for what you're going through.
Cotton Fitzsimmons Posted June 17, 2012 Author Posted June 17, 2012 I just wanted to let you folks know that our little girl was born yesterday (on her daddy's birthday no less). She's very sick and weighed 5 lbs. at birth. Whats more due to a whole slew of complications my wife risked her life to have a csection despite a vascular disorder that was discovered here this week that couldve caused her to bleed to death to give our daughter what little chance they gave her to survive delivery. She made it through the night and doing her best to hold on. The endovascular surgeons have an MRI scheduled for tomorrow and will coordinate treatment from there. This isnt how we drew it up to attack this already difficult disease, but we're definitely down 35-3 here and in need of a miracle. But as I write this she is just down the hall in the NICU holding her ground. Thank you again for your prayers and support.
Cinga Posted June 17, 2012 Posted June 17, 2012 just saw this.... Heavenly Father, we know Your with this family in their hour of need, and we come together today to ask You to intervene on their behalf. Make this family whole Father, help them through this trial in their lives, and by this, let Your Glory shine through them. We ask this in Jesus Name...
boyst Posted June 17, 2012 Posted June 17, 2012 I just wanted to let you folks know that our little girl was born yesterday (on her daddy's birthday no less). She's very sick and weighed 5 lbs. at birth. Whats more due to a whole slew of complications my wife risked her life to have a csection despite a vascular disorder that was discovered here this week that couldve caused her to bleed to death to give our daughter what little chance they gave her to survive delivery. She made it through the night and doing her best to hold on. The endovascular surgeons have an MRI scheduled for tomorrow and will coordinate treatment from there. This isnt how we drew it up to attack this already difficult disease, but we're definitely down 35-3 here and in need of a miracle. But as I write this she is just down the hall in the NICU holding her ground. Thank you again for your prayers and support. anythign we can do to help you...
BillsFanM.D. Posted June 17, 2012 Posted June 17, 2012 I just wanted to let you folks know that our little girl was born yesterday (on her daddy's birthday no less). She's very sick and weighed 5 lbs. at birth. Whats more due to a whole slew of complications my wife risked her life to have a csection despite a vascular disorder that was discovered here this week that couldve caused her to bleed to death to give our daughter what little chance they gave her to survive delivery. She made it through the night and doing her best to hold on. The endovascular surgeons have an MRI scheduled for tomorrow and will coordinate treatment from there. This isnt how we drew it up to attack this already difficult disease, but we're definitely down 35-3 here and in need of a miracle. But as I write this she is just down the hall in the NICU holding her ground. Thank you again for your prayers and support. Prayers continue for your entire family! Please know there are a lot of people pulling for you!
mead107 Posted June 17, 2012 Posted June 17, 2012 1339966854[/url]' post='2487937']I just wanted to let you folks know that our little girl was born yesterday (on her daddy's birthday no less). She's very sick and weighed 5 lbs. at birth. Whats more due to a whole slew of complications my wife risked her life to have a csection despite a vascular disorder that was discovered here this week that couldve caused her to bleed to death to give our daughter what little chance they gave her to survive delivery. She made it through the night and doing her best to hold on. The endovascular surgeons have an MRI scheduled for tomorrow and will coordinate treatment from there. This isnt how we drew it up to attack this already difficult disease, but we're definitely down 35-3 here and in need of a miracle. But as I write this she is just down the hall in the NICU holding her ground. Thank you again for your prayers and support. We continue to keep you and your family in our thoughts and prayers.
IndyMark Posted June 17, 2012 Posted June 17, 2012 Positive thoughts and prayers continue from my family to yours..........I appreciate you sharing your story and offering the compelling and poignant updates. I wish I had something smarter to say or a way to help more directly.....please know, you are positively impacting many here with your strength and courage......stay strong.....
Jim in Anchorage Posted June 18, 2012 Posted June 18, 2012 (edited) just saw this.... Heavenly Father, we know Your with this family in their hour of need, and we come together today to ask You to intervene on their behalf. Make this family whole Father, help them through this trial in their lives, and by this, let Your Glory shine through them. We ask this in Jesus Name... Amen. Edited June 18, 2012 by Jim in Anchorage
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