CDH

sparklingdiamond · November 2017

Unfortunately at our appointment today, it was confirmed that baby girl has CDH (congenital diaphragmatic hernia). It is when the diaphragm doesn't properly form and there is a hole in it that allows the organs to move into the chest cavity. The stomach has moved up there and it looks like possibly the liver and part of the bowel too. When this all moves up there, it inhibits the lungs from growing. There is a high mortality rate with CDH. I am scheduled for an amnio next week to see if this is an isolated thing or if there are any other underlying genetic issues. Basically, it's a wait and see thing because we have to see how much the lungs develop. If possible, they will do surgery to repair it after the baby is born. Sometimes, nothing can be done if the lungs don't develop enough. I may go through the pregnancy just to hold her for a little while. I am just so numb.

irenejean · November 2017

@sparklingdiamond I'm so, so sorry you're going through this. I'll keep hoping for the best case scenario for you guys. There is a mama in my Sept 15 group going through the same thing, if you'd like I can reach out to her and try to put you two in touch. Thinking of you

angiek1 · November 2017

@sparklingdiamond I am so sorry you are going through this. You have been in my thoughts and prayers quite a bit lately. I will continue to pray that they are able to perform surgery on your LO in the future.

mikkimikey · November 2017

@sparklingdiamond I am so sorry that you and your family are going through this. I am sending all of my thoughts and prayers and positive energy your way. ((Huge hugs))

kmalls · November 2017

@sparklingdiamond I am so sorry, I can't even imagine what you are going through right now. Hopefully the best-case scenario proves true and this is an isolated, fixable issue that will allow the baby to lead a healthy life.

Please know we are here for you and will support you every step of the way.

riversdoctor · November 2017

I’m so sorry to hear this! There nothing I can say or do to make anything easier. Hoping for the best possible outcome!!

Dumbgurl04 · November 2017

@sparklingdiamond I'm so sorry to hear this. I hope it isn't to bad so they are able to fix it. Sending all my prayers to you.

lindsye · November 2017

I am so, so sorry, @sparklingdiamond. I really hope your little girl's lungs are able to grow and it can be repaired; even so, my heart breaks for the pain and anxiety this will surely cause you and your family. We are definitely here to support you in any way we can.

ngolimento · November 2017

Oh I am so sorry you got such schocking news. I am rooting for hard for you that her lungs develop enough and it is an isolated incident. Hang in there, and tells us if there is anything we can do to help you.

pghren · November 2017

My heart breaks for you. Hopefully her lungs grow and they can do the surgery.

scuba_chic · November 2017

Oh @sparklingdiamond My heart hurts for you. I will keep you and baby girl in my prayers. Praying for all the best and that they can do the surgery. We are here for you!

rach-j · November 2017

I'm so so sorry. I hope it is an isolated problem and that a less severe case. I can't even imagine how hard this must be. I hope it's okay to say I have seen CDH NICU babies fight through it and get surgery and go on to be healthy happy children. You're in my thoughts and prayers and we are here for you.

Mattel · November 2017

I am so, so sorry @sparklingdiamond I don’t know if it’s helpful, but there is a research/support/awareness group for CDH called CHERUBS. A Mom from my first BMB has a daughter that was diagnosed with CDH as well. I don’t recall how advanced it was at diagnosis, she still has some struggles but she’s thriving. I believe she’s about 8 months old. Kelly (the Mom) has done tons of research and has been very open about their story on their facebook page (Prayers for Charlotte Francesca) if you are looking for information or just someone to relate. Sending love and prayers, mama.

mcb2016 · November 2017

I am so sorry. I wish I knew something else to say. You are in my thoughts and prayers.

sparklingdiamond · November 2017

@rach-j That is encouraging to hear. Have you seen any be okay with more severe cases?

@Mattel Thanks I will look her up!

I really appreciate all your support. It truly means a lot. This is just a lot to process. And a lot more waiting. I just can't believe this happened. As if infertility, a chemical pregnancy, and a miscarriage weren't enough...

rach-j · November 2017

I have, it was a long journey though. Please keep us updated if you can and try to take care of yourself too.

bchalm · November 2017

@sparklingdiamond I can only echo what others have said with support and prayers. It is so unimaginable, I would be numb as well.

dan0081 · November 2017

@sparklingdiamond I am so sorry to hear this and that you are going through this difficult situation. Praying your amnio goes well and you get the answers you need.

ftm_ohio · November 2017

@sparklingdiamond I'm so very sorry to hear this news for you. I've been thinking of you lately, and will keep sending you all the positive vibes to you and LO. Hopefully things will turn out better than anticipated, miracles happen and we are all really rooting for you!!

Puddlewonderful · November 2017

Praying for you and your little one @sparklingdiamond. Both God and medicine can do some amazing things- I will hope and pray you get some miracles to help your little miracle.

mispanda · November 2017

@sparklingdiamond I'm so sorry you got that news today. That must truly be hard and I can't imagine what you must be feeling. Please know we are here for you

danjoly · November 2017

@sparklingdiamond I'm really sorry

I hope it's something that they'll be able to fix. Sending you and your family all the love ❤️

klburke88 · November 2017

@sparklingdiamond my heart is breaking for you and your family. I can't imagine what you are going through. Be kind to yourselves and know that you have a safe place to vent here.

g_amoss · November 2017

@sparklingdiamond - I'm sorry to hear your news. Prayers for your whole family to rely on and support each other and for baby girl to develop strong lungs and be a surgery candidate. I'm so so sorry!

beach_mama · November 2017

I will be praying for your sweet little girl and your family.

tooraloorah · November 2017

I am so sorry to hear this. I admire your strength through all of this and please know we are here for you. Sending so much love and hope that the amnio comes back with best-case scenario.

btm013 · November 2017

I am so so sorry. I am saying prayers that the amino gives you the best case scenario. Please know we are all here for you!! Keep us posted!

psuxray07 · November 2017

@sparklingdiamond I am so sorry...I can't imagine what you're feeling. I'm a million percent hoping for the best outcome for your sweet baby.

linds0503 · November 2017

@sparklingdiamond I am so sorry. You and your family are in my thoughts and prayers. The only thing I can think to be thankful for is that we live in a time where your baby stands a chance, but I am sorry for all the stress and anxiety that you are going through.

sjn00 · November 2017

@sparklingdiamond oh my gosh, I am so so sorry. So many prayers and positive healing vibes for your little girl that she makes it through this. We are all here for you on this journey

hedgepig · November 2017

@sparklingdiamond My heart is breaking for you. I can't imagine going through this. Please do what you need to do to take care of yourself and know that we're here for you when you need us. Thinking of you

whatabout2ndbreakfast · November 2017

I'm so sorry to hear this update @sparklingdiamond. I hope that there is something they can do. Take care of yourself.

okayrunner · November 2017

My heart is absolutely breaking for you, @sparklingdiamond. You, baby girl, and your family will be in my thoughts and prayers. I sincerely hope for the best outcome. We are here for you.