This board is going to become really fucking boring if we're all forced to be robotic or else we get reported/banned. I love July because it's not a bunch of fake garbage.
My UO #1: I think it's funny to dress like a French person at Cinco de Mayo parties. Mexico won the battle, but France won the war!
My UO #2: I am beginning to lose all trust in doctors. When your baby is diagnosed with what is LITERALLY the most expensive congenital birth defect to treat, hospitals salivate over you. It's gross. They're all like, "Pick me! Pick me!" Then when I ask for their success rates with the surgeries our kid would need (incredibly risky surgeries that might kill him), they clam up or give a bullshit answer like, "That's a STAT 5 procedure. Our success rate with STAT 5 procedures is higher than the national average."
So... What's your success rate, bro? Are you here to give me a sales pitch, or to save my kid's life?
(We are possibly-maybe considering surgical treatment for our son's congenital heart defect. But we are still on the fence. Life or death decisions based on projected quality of life are JUST A LITTLE hard.)
Thanks, @MamaBish. I hate to be such a downer, but it's nice to vent. Until I actually NEEDED to know hospitals' success rates for rare and risky surgeries, I had NO IDEA they aren't required to make that kind of info public. It's infuriating. How can parents make informed decisions without that information?!?!?!?! ARRRRRRRRRRRRGH!!!!!!!
Thoughts with you! @PleaseSendPicklesNow and in your honor I rather want to wear a beret tonight... Not that I have cinco de mayo plans but maybe I can make some up!
@pleasesendpicklesnow I'm sorry you're getting treated like that by the doctors and hospitals. I hope you and your DH find peace in whichever decision you make. We're here for you.
@ktomorrow Do it! In college, I always wore stripes and berets to Cinco de Mayo parties, and drank wine. It was always fun to explain why.
Thanks, @quartz02. I'm beginning to learn that what we're experiencing is pretty normal. There is a sort of dark side to Children's Hospitals, because there is so much money and prestige at stake. Everyone wants to get their hands on the kid with desperate parents and a super-rare disease so they can write a career-making paper about an experimental treatment. Or, they advertise their high success rate for treating a certain defect, but quietly refuse to treat the kids with the most dire form of the defect because it will ruin their success rate statistics. TRUE STORY.
@PleaseSendPicklesNow That is manipulative in the most heartbreaking way possible. I might know someone who can help you get honest stats- let me ask her this weekend and I'll get back to you.
@PleaseSendPicklesNow So many hugs! Rant, vent and rage away. I cannot imagine how frustrated you must feel with the hospitals right now. We are all here for you
@PleaseSendPicklesNow How horrible! I'm so glad you've been able to inform yourself on all this REALLY important info that's unfortunately hard to discover.
@PleaseSendPicklesNow hugs for you, strong momma. That is crazy manipulative and makes me feel all the righteous anger for you! We are all here for you for whatever you need
@PleaseSendPicklesNow I experienced something similar very early on in my pregnancy. I wanted to know the success rate of a procedure and all I got was "oh we're very successful". Not what you want to hear. Sending hugs your way.
@PleaseSendPicklesNow that makes me sick for you. As if you don't have enough to worry and think about without them playing their manipulative little games. Not sure how they live with themselves. As always I'm in awe of your strength - I hope you get some real answers soon to help you make your decision.
@PleaseSendPicklesNow I'm so sorry you are being given the run around. I am, however, happy that you have been given the option to spend more time with your little one. I read your post and had to control myself from hopping up and down in excitement.
Eta: Whatever you end up choosing is the right choice, I'm just glad you are being given the choice.
@PleaseSendPicklesNow that makes me so angry that they won't give you all of the info you need to make the best decision for your family. I think tonight in your honor I will not drink champagne instead of not drinking margaritas.
@PleaseSendPicklesNow I hope you know that you're an inspiration to us all. Your strength amazes me. Meanwhile, I've been complaining for 3 days straight about trying to find low carb food I want to eat to control my GD.
Also, this post and you in general are perfect examples of what these boards were made for. Support and love and bonding over the crazy experiences we're having. We're a wacky bunch, but we've become invested in each other. It sucks to have some of your support system kicked out for silly nonsense. Especially as we near the end of our pregnancies.
@PleaseSendPicklesNow not that you didn't already know but we all are here for ya! My little sister is a cardio nurse and heartbreaking situations like yours are what prevents her from joining the cardio team at a children's hospital. Their "drive" is so different than just saving lives.
My unpopular opinion: I hate the rye chips in Gardetto's. Apparently this is a HUGE deal because I get called out for it every time I eat this stuff. Hehe what are our UO Thursdays coming to....
@elenabrent That would be wonderful, thank you!!! All the hospitals that do pediatric cardiac surgery are required to report their stats to the Society of Thoracic Surgeons. Do you know someone there?! If so, that feels like an amazing coincidence! Some hospitals authorize the Society to publicize their data, and some don't. Our local children's hospital--which is highly ranked and generally regarded as very good--turns out to be among the best for transplants. But for what our kid needs, they're pretty cagey and protective of their data. That doesn't bode well.
@shanparadise Isn't it frustrating?! It's easier to make an informed decision about buying a washing machine than about choosing a doctor. Did you ever get the info you needed?
Our son's heart condition (HLHS) is so nasty and difficult to treat, hospice is offered as an option even though palliative treatment exists. Without surgery, kids always die shortly after birth. At least 3 open heart surgeries are required before age 5 to keep HLHS kids alive. The surgeries are so dangerous, just over half of the babies who do them will make it to kindergarten. And if kids survive the surgeries, there are lots of common complications: Feeding tubes, liver damage, extremely compromised immunity, high risk of strokes. Eventually, most HLHSers need a heart transplant. BUT SOME KIDS THRIVE AND SERVE AS ADORABLE POSTER CHILDREN, which makes the decision agonizing. ARRRRRRGH ARRRRRRRRGH ARRRRRRRRGH.
@PleaseSendPicklesNow I couldn't imagine being in the position you're in right now. Talking about your son's condition is bringing awareness to this unfortunate situation and I commend your strength. I'm hopeful that you'll receive all the information you need to make an informed and educated decision.
Me: 31 DH:35 Started TTC in June 2014 Started seeing RE in June 2015 HSG in July 2015 = normal, started Clomid/Ovidrel/IUI cycle in August 2015 Cycle #3 in October afforded 1st month of mature follicles - underwent IUI BFP on 10/27/15 - EDD 7/8/16 DD#1 born on 7/1/16
TTC #2 in September 2018 BFP on 12/2/18 - EDD 8/16/19
Team Green!
@PleaseSendPicklesNow I never got the info but chose to go ahead with the procedure. It was successful, but having a little peace of mind would have been wonderful at the time. So, so much love to you and your LO.
UO- If you're going to celebrate Cinco de Mayo by drinking margaritas and beers... at least have an inkling about what the holiday is actually celebrating.
Along the same lines, if you are going to celebrate Oktoberfest.....learn to spell it correctly, and also realize that it usually is the end of September and ends the first weekend of October. It isn't ONLY in October, and it doesn't run through October. Its not "Octoberfest"!!!
@PleaseSendPicklesNow Im sorry you are having to go through all of that, just to find the stats. I feel like that type of thing should be public record. It has to be hard enough trying to make the decision on what to do, on top of already dealing with the diagnoses.......the hospitals and doctors shouldn't be adding to the stress and complications of everything that is already going on.
Re: UO Thursday
Married May 16th, 2015
EDD July 1st
July16 May siggy challenge "May the Force be with you"
My UO #2: I am beginning to lose all trust in doctors. When your baby is diagnosed with what is LITERALLY the most expensive congenital birth defect to treat, hospitals salivate over you. It's gross. They're all like, "Pick me! Pick me!" Then when I ask for their success rates with the surgeries our kid would need (incredibly risky surgeries that might kill him), they clam up or give a bullshit answer like, "That's a STAT 5 procedure. Our success rate with STAT 5 procedures is higher than the national average."
So... What's your success rate, bro? Are you here to give me a sales pitch, or to save my kid's life?
(We are possibly-maybe considering surgical treatment for our son's congenital heart defect. But we are still on the fence. Life or death decisions based on projected quality of life are JUST A LITTLE hard.)
Married: October 23, 2010
DS: 8/7/2013
#2 EDD: 6/29/2016, C Section: 6/22/2016
Thanks, @quartz02. I'm beginning to learn that what we're experiencing is pretty normal. There is a sort of dark side to Children's Hospitals, because there is so much money and prestige at stake. Everyone wants to get their hands on the kid with desperate parents and a super-rare disease so they can write a career-making paper about an experimental treatment. Or, they advertise their high success rate for treating a certain defect, but quietly refuse to treat the kids with the most dire form of the defect because it will ruin their success rate statistics. TRUE STORY.
Edited for spelling.
DD #2: EDD July 2016
July16 JULY siggy challenge
Eta: Whatever you end up choosing is the right choice, I'm just glad you are being given the choice.
Also, this post and you in general are perfect examples of what these boards were made for. Support and love and bonding over the crazy experiences we're having. We're a wacky bunch, but we've become invested in each other. It sucks to have some of your support system kicked out for silly nonsense. Especially as we near the end of our pregnancies.
My unpopular opinion: I hate the rye chips in Gardetto's. Apparently this is a HUGE deal because I get called out for it every time I eat this stuff. Hehe what are our UO Thursdays coming to....
@shanparadise Isn't it frustrating?! It's easier to make an informed decision about buying a washing machine than about choosing a doctor. Did you ever get the info you needed?
Our son's heart condition (HLHS) is so nasty and difficult to treat, hospice is offered as an option even though palliative treatment exists. Without surgery, kids always die shortly after birth. At least 3 open heart surgeries are required before age 5 to keep HLHS kids alive. The surgeries are so dangerous, just over half of the babies who do them will make it to kindergarten. And if kids survive the surgeries, there are lots of common complications: Feeding tubes, liver damage, extremely compromised immunity, high risk of strokes. Eventually, most HLHSers need a heart transplant. BUT SOME KIDS THRIVE AND SERVE AS ADORABLE POSTER CHILDREN, which makes the decision agonizing. ARRRRRRGH ARRRRRRRRGH ARRRRRRRRGH.
Started TTC in June 2014
Started seeing RE in June 2015
HSG in July 2015 = normal, started Clomid/Ovidrel/IUI cycle in August 2015
Cycle #3 in October afforded 1st month of mature follicles - underwent IUI
BFP on 10/27/15 - EDD 7/8/16
DD#1 born on 7/1/16
TTC #2 in September 2018
BFP on 12/2/18 - EDD 8/16/19
Team Green!
ETA: