So sorry to hear this news!!!! I was thinking of you today and hoping your appt would go well. I hope you get set up with a great doctor who can help you prepare for how to best deal with the condition. Still sending positive vibes your way.
Oh @PleaseSendPicklesNow I am so sorry to hear this update. I am sure you have a lot to process right now. Try and keep your head up and know we are all thinking of you. I wish I could offer better support than that.
I am sorry you didn't get great news. But, you have a diagnosis and you can put a plan into place. My niece has HRHS and has had 2 surgeries so far. She has just turned 8 months and is doing great. There are positive outcomes to this situation. I hope your doctors can help you find the right path.
@PleaseSendPicklesNow I'm so sorry for your news! My friends cousin was just born on Leap Day with the same condition - they opted out of the surgeries - but the baby is actually thriving and doing well. The doctors say it's a miracle. Sending lots of positive thoughts and praying for you
Me: 28 | Husband: 39 Married March 2016 DD: born 7.22.16 DS EDD: 6.23.18
@PleaseSendPicklesNow - I am so sorry to hear this. I believe you said your local hospital is near the top of the heap for peds cards, right? The absolute most important thing in this scenario is finding a hospital/provider with the highest volume of cases; it makes such a HUGE difference. When you first wrote about your situation -- not to sound nonchalant -- I didn't even bat an eye because my hubby is an aspiring cardiologist and I hear about TOF, HLHS, etc., pretty regularly. I can't imagine how scary it all is, but I hope you can find some comfort to the fact that there is a strong community of medical providers who literally devote their lives to issues like HLHS. Your nightmare is what they eat, sleep, and breath. If you're not already at a top hospital with a top provider (though if I recall, you are), get yourself to one, and remind yourself that you've done absolutely everything you can to give your baby the best chances. Big creepy hugs to you and your baby.
09/12/14 BFP (EDD 5/15/15)
10/06/14 US #1 showing baby at 6W1D w/ no HB (rather than 8W4D)
10/13/14 US #2 confirming miscarriage
10/28/14 800mg oral cytotec (very good experience)
Oh gosh, I'm so incredibly sorry to see this update. I've really been hoping for nothing but positive news for you. I wish I had something better to say, but I'll be keeping you and your family in my thoughts. You've got a long road of very hard decisions to make, but we are all here for you should you want/need us. Fingers crossed that you find a ray of light in all of this.
@PleaseSendPicklesNow I'm so sorry you are facing this diagnosis. I'll keep you and LO in my prayers and I hope your team can help you come up with a plan. Thinking of you, hugs .
@PleaseSendPicklesNow i'm so sorry to see this update. I know that you said that you were going to one of the hospitals that was towards the top of the list. I know that a lot of the survival rates have to do with how many of the surgeries the hospitals do each year. If you guys do end up deciding to go to Boston's Children's, I will be more than happy to do what I can to help you out with regards to finding a place to stay and logistics. Hopefully you feel comfortable with the hospital that you are at though. If not, please know that I have had several people come in from out of the country for their children to have heart surgery at Boston Children's. It's difficult, but they have a lot of programs in place like the Ronald McDonald House. Sending lots of hugs and prayers.
I'm so sorry. Please know that you're in my T&Ps and that there can still be a good chance your LO is as thriving as that other cute LO in the picture posted above
I am so sorry thoughts and prayers go out to your family. I hope the fetal echo will give you more information and help you with your future decisions.
We've done a lot of research about our son's heart defect, the complications associated with HLHS (strokes, sudden heart failure, etc.), the dismal number of children who make it through all 3 required surgeries, what other families say about their HLHS experiences, and the severity of his particular case based on what they saw last Friday.
Surgery exists to keep HLHS kids alive beyond birth. But a surgery's "success" doesn't mean the kid grows up happy--it just means they get discharged from the hospital. Too many kids die between surgeries, and they don't end up in the surgery statistics. The kids who do get through the multiple open heart surgeries and associated complications have a honeymoon period of a few years before they need a transplant. Then, for the rest of their lives, they need periodic transplants. A lot of people on the transplant list die waiting. When all is said and done, HLHS is still considered a fatal birth defect.
After weighing all these things together, we made the heartbreaking decision to celebrate our son's birth when it happens in July, love him for the few days he will be with us, and do comfort care. Essentially, baby hospice. We want his life to be free of pain and full of love. He might live just a day, or up to 10 days. The average is 3 - 4 days. Then we hope that he might live on, and be the answer to another family's prayer, through organ donation. It would make this tragedy a bit less senseless. We want something good to come from his life.
We love him so much. This is killing me.
We are already trying to make his life as full as it can be by singing to him, reading to him, playing the music he responds to, making a bucket list of all the things we hoped to do with him, and doing those things now. I try not to cry too much, because I can feel how it affects him. He's normally a bouncy little guy, but when I cry he gets still and subdued. Since Friday, I've had two panic attacks. Managing my emotions for his sake is going to be one of the hardest things I've ever done. I'm not good at it yet.
It is unlikely that his diagnosis will change. But if it does, and they decide he has a different heart defect with a better outcome after surgery, we will do the surgeries and fight like hell to give him a long and happy life.
For now, I need to step away from the Bump. Reading about nurseries and showers is very hard now. I wish you all healthy, easy pregnancies and births. I hope your babies are big, beautiful, and healthy. I hope the postpartum period is smooth and happy, and your families thrive. You all have been so kind, and every single message of support has hit its mark and lightened this burden. Thank you.
@PleaseSendPicklesNow my heart breaks for you and your family. I completely understand that you need a break from TB but just know we are here for you. If you ever need to talk you can private message me, I'll be thinking of you. Praying for peace and serenity for you and your family and of course healing prayers for your little one.
Oh Pickles. I am so sorry, my heart is broken for you and your sweet boy. I'll be thinking about you these next few months, and I know your son will feel so loved while he is on this Earth.
I am so sorry. The tremendous love you are showing him with all of your choices is beyond evident. Go easy on yourself and cry once in a while if you need. You are doing the best you can.
I'm so beyond sorry, Pickles. You obviously love your son so very much already, and he is lucky to have such loving parents. I will keep you in my thoughts over these next few months. Please take care of yourself and know that we are all here to support you and be a shoulder should you need one.
It sounds like you've done a lot of hard work and soul searching to come to this decision. You are doing the right thing for you, your baby, and your family. Sending happy thoughts and prayers your way. Of course, let me or anyone or everyone know if there's anything we can do to help and we'll be here if/when you are ready to come back here.
_______________________________________________
Me: 33 DH: 32 Married 7/18/15 1st born at 35+4 on 6/6/16 Team green turned BLUE! 2nd born at 38+6 on 8/30/18 Team green turned PINK! Due with #3 on 6/6/20 Team Green
Pickles I am just so heartbroken for you all. Your decision had to been incredibly difficult but know all the ladies here support you and will continue to lift you up through the coming months. The love care and consideration you have for your son is incredible and unselfish.
I know that you are going to be away from TB for awhile, Pickles, but I hope that one day you do come back and let us know how you are doing. I am sorry for what you and your family are going through, but I think that it is amazing that you have chosen to donate your son's organs. A child that was in my DD's BMB, had his life saved by organ donation a week or two after he was born. Although you won't be bringing home a baby, and it will be a difficult road, your selfless act will be helping other families out there....and that is an amazing gift, that is priceless. Sending lots of internet hugs your way....
I am so sad to read your update pickles. You have been such a wonderful member of our board and I miss your commentary already. I hope you feel okay enough to pop back at some point. Your little guy has to already know what a wonderful mom you are. I am heartbroken for you and your family and will keep you in my thoughts. Big internet hugs to you.
Re: A Thread For Congenital Heart Defects
Edit to remove photos
Married March 2016
DD: born 7.22.16
DS EDD: 6.23.18
July16 JULY siggy challenge
I'm so sorry you are facing this diagnosis. I'll keep you and LO in my prayers and I hope your team can help you come up with a plan. Thinking of you, hugs .
We've done a lot of research about our son's heart defect, the complications associated with HLHS (strokes, sudden heart failure, etc.), the dismal number of children who make it through all 3 required surgeries, what other families say about their HLHS experiences, and the severity of his particular case based on what they saw last Friday.
Surgery exists to keep HLHS kids alive beyond birth. But a surgery's "success" doesn't mean the kid grows up happy--it just means they get discharged from the hospital. Too many kids die between surgeries, and they don't end up in the surgery statistics. The kids who do get through the multiple open heart surgeries and associated complications have a honeymoon period of a few years before they need a transplant. Then, for the rest of their lives, they need periodic transplants. A lot of people on the transplant list die waiting. When all is said and done, HLHS is still considered a fatal birth defect.
After weighing all these things together, we made the heartbreaking decision to celebrate our son's birth when it happens in July, love him for the few days he will be with us, and do comfort care. Essentially, baby hospice. We want his life to be free of pain and full of love. He might live just a day, or up to 10 days. The average is 3 - 4 days. Then we hope that he might live on, and be the answer to another family's prayer, through organ donation. It would make this tragedy a bit less senseless. We want something good to come from his life.
We love him so much. This is killing me.
We are already trying to make his life as full as it can be by singing to him, reading to him, playing the music he responds to, making a bucket list of all the things we hoped to do with him, and doing those things now. I try not to cry too much, because I can feel how it affects him. He's normally a bouncy little guy, but when I cry he gets still and subdued. Since Friday, I've had two panic attacks. Managing my emotions for his sake is going to be one of the hardest things I've ever done. I'm not good at it yet.
It is unlikely that his diagnosis will change. But if it does, and they decide he has a different heart defect with a better outcome after surgery, we will do the surgeries and fight like hell to give him a long and happy life.
For now, I need to step away from the Bump. Reading about nurseries and showers is very hard now. I wish you all healthy, easy pregnancies and births. I hope your babies are big, beautiful, and healthy. I hope the postpartum period is smooth and happy, and your families thrive. You all have been so kind, and every single message of support has hit its mark and lightened this burden. Thank you.
July16 JULY siggy challenge
, 💙💙💙💙💙💙
DH: 32
Married 7/18/15
1st born at 35+4 on 6/6/16
Team green turned BLUE!
2nd born at 38+6 on 8/30/18
Team green turned PINK!
Due with #3 on 6/6/20 Team Green
I Can't imagine your pain but I admire how strong you are.
sending prayers your way
July BMB May Signature Challenge
Let us know how we can support you.