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CHOP follow up
Hi all. Here is our update:
baby b has a heart ventricle that is going to the wrong location. he is going to need open heart surgery when he's born. they told us he'll be fine in utero and after a complete replair, he'll live a totally normal life. he will need a yearly check up though for life but they said he can do whatever he wants..he can play sports, etc.
baby A has an arched aorta. they might be able to leave it alone but if there is an obstruction, he'll need surgery too. We are just in shock right now. we go back and forth between thinking it'll be ok and being mad that this is happening. We know in the grand scheme of life that if this is the only thing they have to go through, thats not bad. It's just the initial shock. They said its great we caught it early because we'll have all this time to formulate a plan and for Eric and I to let it sink in. 99% sure we'll be delivering at CHOP so they can deal with the boys immediately. Oh, they also want to do an amnio on baby B so as much as that freaks me out, I think we will do it.
So thats that. We're trying to just focus on holidays and have fun. We've decided we're still going to lie and tell everyone we dont know their sexes 
On Thanksgiving we're going to have two balloons hidden that say "its a boy" and when everyone comes over, I'm going to have my niece get them from our bedroom and bring them downstairs. We need a pick me up and to have some fun with this still!
I appreciate everyone's well wishes. Fingers crossed that everything else goes smoothly from here on out!!
My little nuggets
Re: CHOP follow up
I am so sorry, this board is not doing well in the odds game lately. But again Chop has an amazing facility and the best doctors you truely couldn't live anywhere better. you guys are in my thoughts and really I understand being bitter, but know the moment those babies come out it will just continue to get better and better.
Ugh, I am so sorry to hear this, Kernel. I think you're in great hands at CHOP, though. I can imagine your frustration - working so hard just to get pregnant...then to deal with both babies having issues. Totally understandable to be mad but I think you have a great attitude about the whole thing.
We are here for you!
I know it's hard, but try to still be excited about the pregnancy and do things for yourself (and the boys). I had a hard time with that (and still am) but I started getting some new baby things and washing Oliver's old newborn clothes, and I'm starting to feel better.
I know it's so overwhelming right now! I'm here for you! Love the balloon idea for Thanksgiving!
Thanks girls. Today is better than yesterday and hopefully each day coming up gets better.
Esyn - I owe you an email back. Will do that tonight!
My little nuggets
Lurker here- but wanted to reiterate that CHOP is amazing!! My niece was born at UPenn and taken right to CHOP. She had surgery at 4 days old to fix a congenital diaphragmatic hernia (hole in her diaphragm so everything was pushed up & not in the right location). The drs there was AMAZING!! She spent 10 weeks in the NICU after. We were all allowed to visit and my sis/BIL could show up 24/7. The nurses would also take their calls no matter what time it was to reassure them all was good with the baby.
I really cannot say enough good things about that place. They saved my nieces life and turn what could have been a very scary situation in positive experience. They were just so good, comforting & open with my sis/BIL.
So sorry to hear you are going through this. Try to stay positive and know that everything was caught early and you will be good hands through the rest of your pregnancy and when the boys make their way out. Sounds like the doctors will have a great plan in place and you have time to adjust your plan and be ready for whatever may come. I'll be keeping you all in my thoughts!
Ditto Tracy - all the trouble you've already gone through and now this must be heartbreaking. I think it's great though that you know now and can be prepared. Seems like you'll be in great hands at CHOP.
As E said, try to really enjoy the pregnancy and buy lots of cute things for your boys.
You guys are definitely in our thoughts.
#1 12.11.11
#2 10.23.13 EDD
Love the balloon idea and surprising the family!
Sorry you are going through this, you guys are in my prayers, and ditto CHOP, they have been so amazing with my cousin and her treatments.
Jonathan Dean 4.5.08
Anna Capri 5.4.11
Thinking of you guys!
My good friend's wife works on the Critical Care/ICU (not sure of the exact name) floor of CHOP and takes care of all the babies who are newborns and are right out of surgery. Once it gets closer I can give her your name so she knows to look out for them and make sure they they extra special treatment.
With that said... she is also pregnant with twins. But she's in that 1% twins category where there are 2 identical babies in one sack sharing one placenta. She's super duper high risk so I'm not sure if she will be there when H&F will be but I can still tell her to tell her peeps there.
Thanks everyone! I'm just waiting for abington to call me back with where to go to set up the amnio. I just want it over with bc I can't imagine him having another issue.
The ironic *** about this is that sometimes IVF can cause it. So, theres that. Talk about anger.
My little nuggets
Sorry you are going through this. You, the dude and the babes are in my thoughts. CHOP will take great care of you and Hans and Frans.
Love the balloon idea as well.
As I told you, I'm so sorry you have to deal with this. I am encouraged to hear that they are so optimistic about it. You and the rest of the family have been in my thoughts and prayers all weekend, and will continue to do so.
Please don't beat yourself up about the whatif's with IVF...it's not going to help anything. You are awesome and going to be an awesome Mom. Just try to follow ESyn's advice and enjoy the pregnancy as much as you can. Think of all the cute twins stuff you get to buy! I'm excited for you.
I also have a friend who is a nurse at CHOP. I'm going to talk to her and make sure both you and esyn get the royal treatment. ;-)
Hugs, Kernal. You and H&F will be in my thoughts. CHOP is amazing, and it sounds like both are treatable.
Please let me know if there's anything I can do.
DD: 6-24-11
EDD: 9-20-14
DS 3.12.08
DD 7.11.09
DD 8.01.13
My little nuggets
Im so sorry you have to go through all this Kernal. Big hugs and prayers to you and those sweet baby boys! Ditto the other girls, I am sure you are in fabulous hands at CHOP.