Grieving after losing a child to CDH

My daughter fought bravely against her CDH for 28 days. She died in January of this yea, since then I feel like my heart has been ripped out. I've struggled for 3 years to concieve (conceive) a sibling for my older son Marius-when it finally happened without ending in miscarriage, I concieved Lilou. I found out she had CDH @ my 20wk ultrasound. I decided to continue my pregnancy knowing the chances.
For a while things looked like she was going to pull through and right when they were removing her ECMO, her healthy lung collapsed and filled with blood. The next day, that seemed to have gone away and her lung re-inflated, but her blood pressure was hard to maintain. The doctors told me a couple days later, she became totally septic, acidotic, her kidneys and her liver had totally shut down. My little girl made it through 4 surgeries before this happened. Every nurse and doctor in the ICU was on the verge of tears, they too, were expecting my little angel to be flying up to NICU, not heaven. I had to make the hard choice to end life support and now I'm in hell.  Nothing seems to stop the pain. Worst of all the over whelming feeling of failure-not only do I feel like I gave up on her, although I know I didn't, but I feel like I failed Marius. He was so in love with the fact that I was pregnant and he had a little sister. I've tried everything from counciling to do every positive thing I can with my son to help both of us get through this.
This is so emotionally hard I can't even discribe it. What phase of grieving am I in? Will I ever be able to smile again? Lilou's father and I made a vow to each other that we will make it through the hardest thing ever, her death. He wants to try for another child by the summer after my body has healed over this pregnancy. As much as I love the idea, I don't know how to approach the topic with my son. How do I explain to him that I will be pregnant again? How do I make him understand that this child won't die. How can I explain this without making false promises?
I just want to see the sun again, I want my son to smile again and having a sibling to play with. I'm only 27, I don't know why I keep losing children. I've gone to the doctor and genetic coucilor, they don't know why this is happening. My son was my second pregnancy, he was born with a cleft lip and palate, my daughter was my sixth pregnancy and she had CDH. My first, third, fourth and fifth pregnancy ended in two ED&C's and spontanious miscarriage. How do I keep my hopes up?

[vsentz]

Oh man.... just reading your story made my eyes get filled up with tears and my heart shrink with your pain. I am VERY sorry hun, words cannot even begin to express what I would like to do for you. I think first of I'd like to extend my arms thru the screen and give you a big tight hug. I wish all of us would be physically there with you to comfort you, to make you feel like you are not alone anymore. I am praying for your little angel in heaven.
I too lost one, at 12 weeks, nothing compared to your loss... and I almost went crazy when that happened. You are a very strong woman for enduring this.
It is very hard to tell a little boy that things are gonna happen again, like last time, without the final outcome. I think maybe keeping it from him until you make sure everything is fine would be better?

I just want to add that I ABSOLUTELY loooooove the name Lilou!!! that is so adorable for a little girl! If I had another baby girl I'd probably name her that! =)

I hope that you are comforted being here, the girls are so loving and nice... and there is very good advice.
Please feel free to PM me if you need to vent more or just need someone to rely on.

Love and prayers your way.

[unspokenangel]

ty for your reply. It's very hard to go through all this, it's a nightmare. I don't know why I have such a hard time getting pregnant, then when I do, it's hard not to get the attitude "what's wrong with it now?"
I want my son to have a sibling to play with. He was totally heartbroken about Lilou. Her father has just been torn to shreds over this, this was not only daddy's little girl, but his very first child. So it's been beyond a chaotic circus. He wants to badly to have more children with me, he told me that the day Lilou was born. I just tell myself, if I give up, I'm forfiting the fight, and I am not a quitter!
I miss my daughter, more than I can explain in words. Life seems at times, not only unfair, but unbearable. Grrrr!
I'm hoping for twins next time, a boy and girl. I'm thinking about doing invitro-but I may get denied based on the fact, I don't have a problem with conception or implantation. Just a thought I've been tossing around.

[vsentz]

Oh my dear.... I can tell you I know... but I really don't. I lost mine but like I said: it was nothing compared to what you are going thru. I cannot even start to imagine what would be left of me if something EVER happened to my Madisson. She is the fuel for my heart to keep on beating every day.... so this is why I felt for you while reading your story. I am so sorry...
I think having invitro would be awesome! they can actually pick and choose healthy sperm and eggs which in turn would increase the chances of a healthy, full term baby! I think twins would be excellent! they can actually pick the sex! =)
Have you look into it at all? do you have an RE?
I cannot even imagine your husband's torn heart.... I will keep you and him, and your little boy and your angel baby in my prayers. I really hope you find comfort in your heart soon and hope you can get pregnant with twins, a boy and a girl, and have a very healthy couple of babies!

[rdh1981]

I am truly lost for words and I am living your life.  I too have a Baby Angel his name is Cooper. I gave birth to him last June and he passed away in July. He was born with a heart condition called HLHS. Hearing you talk about the ECMO machine brought back so many memories. He had three open heart surgeries before his little body stopped working.  The nurses and doctors took this just as hard as we do.  They are actually still in our lives today. We keep in touch through email and this really helps heal our hearts.

I cannot tell you when your pain will go away. I still have awful days.  Going to counseling and attending a monthly support group for parents who have lost infants has really been my saving grace. At first it was so hard because my husband and I did not grieve the same way, so we did not know how to help each other. But after counseling and realizing how to help each other our marriage is going strong. I am now 17 weeks pregnant and I owe it all to my little angel.  

Hold on to your sweet little angel and know that she will never leave your side.  Baby Angels seem to have the neatest ways to let you know that they are still around.

Please do not let anyone tell you how to grieve or tell that you "should be over it".  People that have not lived this or not living this nightmare just do not seem to fully understand. ( NO offense to the nice ladies on this forum)  But you came to the right place, so many of these women have been my saving grace and they did not even know it.  Keep talking with Vsentz she can put a smile on your face no matter how you are feeling.  
I just want you to know you are not alone and nor do you have to be.  Feel free to ask me anything or you do not have to say anything at all. Just know you and your family will remain in my prayers.  

You will be Happy again and you will not feel guilty about it!!!!!!  God bless our precious Baby Angels!!!!

Rachel  

[mami1323]

I'm so heartbroken just reading your words and seeing your sorrow.  I can not relate because I have never lost a baby nor had any miscarriages but it did take me a while to conceive my son.  So I know the struggle of trying to conceive and the disappointment when it didn't happen.  But that is nothing to the pain of actually losing a child.  That pain, I can't even imagine.  All I can tell you is that even though I have not gone through it I still send you my deepest condolensces for your lose and will be sending you all the prayers for your family.  You take all the time you need to grieve, I know I would be grieving forever.  Rachel has been through it and can be of some great support to you.  I think it takes a strong person to go through what you have gone through and still find the strength to discuss it even on this forum.  Big hugs and well wishes.  

[peekawho]

I am so sorry for what you are going through, and what you will continue to go through for a long, long time.  Its wonderful that you have a supportive partner to help you with the dark times, and to eventually begin to smile with you and laugh when the fog begins to lift, just a little.

I've never had a loss like yours, so I can't completely relate to what you are experiencing, except that I've been with many mothers and fathers when they lose a child, and their grief is so overwhelming that I can't help but break down with them.    
The loss of a child is absolutely devastating.   I can offer little but empty words for you, but I certainly am thinking of you and helplessly worrying and wishing there was some way to make it better.

I'm so sorry.  Many, many hugs and good wishes.  

[jenkaye21]

So sorry for your loss and can't really add anything to what other posters have already said....

I was thinking, though, that if you do to conceive again, you may want to wait as long as possible to let your son know.  If you can make it even thru the first trimester, your risk of m/c goes down and a sono may be able to rule out similar problems.  

Good luck to you!

[vsentz]

*blushes*

Thank you Rache! that was really sweet of you hun! =))

[unspokenangel]

Thank you all so much for your reply-It means so much to me that I will not suffer alone through all of this. Thank you so very, very much.

[Me2mommy2b]

I'm sorry you're going through so much pain.  Time is a good doctor and you will be smiling again.  You did not give up on her and she knows that you did everything you could to keep her with you.  She's free of pain now and she's smiling down on her brother and parents.  How old is your son?  Hugs and prayers.

[haychx]

aww i lost one of my twin boys due to cdh aged 27hours the pain is still raw and it has been 3 years am sorry for everyones losses my son ahs a site( however has pics i dont want to upset anyone www.piczo.com/angelnathanlee ) xxx

[haychx]

am a mummy of twins one died shortly after birth due to cdh www.piczo.com/angelnathanlee

[mamom15]

I am so sorry.  I wish I could be there next to you holding your hands and giving you a big hug.  Life is not fair especially to lose your child is so hard.  I am pregnant with my first baby girl at 34 weeks and cannot imagine losing her.  I wish we could do something to take your pain but unfortunately you will have to go through this entire proicess.  I had tears reading your post.  Atleast she is in heaven with out any pain.  May time be your best healer and may you have another little baby girl to love and to hold.  My prayers are with you.  Hugs - A