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kwilliams

How should I take that?

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So last night, I mentioned to Josh that he'd seemed a bit withdrawn lately. I mean he didn't even seem happy with the news the doctor gave the other day. I thought he was happy, just had other things on his mind. Well last night he told me that he thought I had lulled myself into a false sense of peace thinking that somehow everything would be okay, that she would be okay. And he just was preparing himself for the worst so it wouldn't be a shock. And he is now more worried about how I will react in the worst case just because of this "false sense of peace". It really bothered me, one that he is so pessimistic still about her outcome, and two now I wonder what if I am lulled into a false sense of peace and things do turn out for the worst? So that one little piece of conversation has really shaken my peace. I know that he can't know or feel the things I do, but what if he is right? This is the first time we've ever been so completely opposite in feeling. I trust my heart, but I miss him being there with me.
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  1. CaseyFBarnhill's Avatar
    This is a hard one to respond too, and I guess the only real reason I can respond back is because I do like to be a realist. It is unfortunate what is happening; however, we do know what both outcomes could be during this. You have to yes keep it in your mind , but you CAN'T give up. It isn't fair you have to think extremely positive, because look at all the other babies that have made it... all the other babies that have had it off worse, and STILL make it. Life sometimes throws us curve balls, and it is our job to follow those curves, and get back on track. It would be too easy if everything was perfect all the time, so I have been taking this as a blessing. I feel like this is making me a stronger person, a more humble one, and definitely preparing me to be the best mother possible. If I give up on Gavin, and the hope of his survival everything I've conquered in this life, and everything I have fought for will mean nothing, because everything I have now has been fought for and hoped for, and has come to me. My point in all of this... if you will their survival , and TRULY believe that they will be alright, and they might have difficulties, and small health problems, the power of believing, and hope will rise above all, and that is what ( I ) am forcing myself to truly believe, because I know I have to for Gavin.
  2. Chris and TracyMeats's Avatar
    (((HUGS)))....I wish I could help or offer some advice. I really think I was spared not knowing about my son's CDH before birth for I couldn't have handled the worry, the stress, the pain, the fear, just wondering about what was going to happen. I do know that having a child born with a birth defect or a child with medical issues or evening losing a child can be very tough on a relationship. Men handle emotions differently than women, they just do. They want to be the rock for their family and they see us hurting or in pain and they want to fix it. In this case, it is out of their hands, they can't fix it or make things better and I really think it makes them feel horrible. Keep the communication lines open and talk. Josh doesn't get to feel the early bond you have with your child, he doesn't get to feel her kicking and moving and growing. It hurts for him to think he is going to lose his baby girl, before he even gets to make that bond, before he gets to meet her. Sit him down, let him feel that baby girl kick and tell him you can't give up on her, she is still fighting and that you want him to fight for his baby girl.

    Doctors are going to be able to tell quickly after birth what the situation is going to be and what you are facing. If the time comes that you have to make a decision on what to do or what treatment plans you are going to take, that you want to be a team. You want to have no regrets and you want him to be with his baby girl and with you.

    I hope I haven't rambled, but please know I have seen babies given a very slim outcome and they are now the most healthy children and I see babies with a good outcome predicted, struggle. So much cannot be determined until your baby girl is here. Having hope is one thing that will get your through each day.

    We have an amazing dad in IL that is our state rep., Neil Rubenstein and sometimes talking to another dad may help. Let me know if you want his email. He may have ideas to help keep the communication lines open, from a man's prospective.
  3. amandaschaefer's Avatar
    Oh my goodness...We are so at the same point in our journey's it's crazy...My husband is the EXACT SAME WAY. Think of it this way though..he is worried...very worried about YOU. He wants to be there and be able to support you...this is an INSANE journey...I think he just wants to be prepared for any outcome that may come your way to HELP YOU. I truly do believe that...even though it may come across as insensitive in your eyes.

    My husband is very reserved when it comes to me talking about the future and our son...I think it's healthy to talk about all possible outcomes though. Honestly, we know what we want to do if he doesn't survive, we know how far we'd like to go once he is born with medicial intervention, and we've tried to go to both side of the spectrums and discuss ALL of our options. I think it will help to talk about all of these..it's hard...very hard, don't get me wrong...But I don't want any ANY regrets if we lose our son...I have a list of "things I want done" if it looks like that's what way our journey turns. I don't think it's pessimistic...but it's the very realistic view of CDH and all the possible outcomes. I have sat and cried many nights writing down that list...thinking of the possibility of losing a baby...I still...STILL hold on to knowing that one day...(probably soon) I will get to hold him and love him with all my heart...The unfortunate thing is I just don't know for how long.

    By the way...I'm 33 weeks on Monday..went into pre-term labor on Thursday...They were able to stop contractions...Baby is looking awesome, but now I'm showing signs of preeclampsia...He is still too small for ECMO if needed at birth so we are just seeing which one of us can hold out longer!

    We just had the "best" appointment on Wednesday saying that the extra fluid in his body went away and come Thursday afternoon I started contractions...dilated to a 3 already and 50% efface. I've decided this is completely out of my hands...I never in my life thought we would be faced with these kind of decisions. It's heartbreaking.

    Again...so sorry for my rambling, but your post really hit home to me...I've been there...in your shoes thinking the same exact things you are going through. Many thoughts with you!
  4. MariaFarnsworth's Avatar
    I would rather think of it as having Faith not being lulled into a false sense of hope. It's the one thing that we can grab a hold of tightly during times when situations are completely out of our control.

    Please remember it is okay for both of you to have your own feelings. It is important to communicate this difference in your feelings. It is important to allow each other to have different feelings. Neither feeling is right or wrong as we are all individuals and that being said will handle each situation differently.

    I always tell my daughters when faced with differences in their marriages: "Now is not the time to be at odds, but rather it's time to circle the wagons and divide and conquer!"

    Since the beginning of time men have been instilled with the thought that they must fix everything, stop the hurts, be the bread-winner. Unfortunately our society has not helped. I'm sure it saddens Josh as he wants nothing more than to protect you.

    I've rambled too

    Sending many healing prayers and positive thoughts always.

    Maria Farnsworth
    Nonna to Angel CHERUB Liam ("The Lion") Anthony Hunt
  5. Lisa and DanaThibeau's Avatar
    In my case we didn't know and count that as one of our biggest blessings during our journey.

    It's hard to have faith, hope, peace what ever you want to call it when those around you don't have it. One thing I had after Adam was born was an incredible since of peace that it was going to be ok. My husband not so much but he kept quite about his doubts (at least to me). Keep on hoping that all will be well, expect to be crushed if they do not but keep hope until the end. This is a one day at a time journey. All you can control is right now, do your best to make sure that your precious little one is as healthy as can be so that the baby has the strength to fight when the time comes. Once the time comes that control will be out of your hands and solely in God's and the surgeons and the babies.

    Our husbands were created to be our protectors. They desire us to be happy and healthy and safe. They want to control those things and sometimes they can't so they want to prepare you. My husband is the same way. Sometimes I wish I could strangle the pessimism out of him. Allow him to be your protector but let him know if his doubts are affecting you in a negative way. Make sure that he understands that your stress level needs to be as low as possible so that you can have the strongest baby possible. I don't know about you but when I stress out I stop eating right.