# Having a really hard time coping...



## cristeen (Jan 20, 2007)

Removed due to intolerant and hate filled responses received.


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## mwright (Nov 30, 2006)

Ooooh mama, I am so heartbroken for you and your baby.







: What you are going through has got to be one of the hardest things to face. You are in my thoughts and prayers.

I am wondering though if it would be worth it to do your own research about your baby's condition?? Also, are they 100% sure that your baby has this heart defect? I have read so many times about baby's being terminated because they thought the baby had a defect when that was not the case at all.. I don't know, I'm just thinking here.

We are here for you..









Also, maybe take some time with your baby before you go in for the induction, talk to him and listen to him and your heart..

Blessings


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## rach03 (Dec 30, 2006)

How heartbreaking. I'm so sorry for you, your family, and your sweet baby.

I have no words that could even come close to comforting you, but I did want to ask if you have heard of Now I Lay Me Down to Sleep. It is a foundation of photographers who do infant bereavement photography. They will come to the hospital and take beautiful pictures of your sweet baby after his birth.

I don't know if that's even something you would be interested in, but after learning about this foundation through another website I try to remember to mention it just in case.

My thoughts and prayers are with you, again I'm so very sorry for the pain your family must be going through.


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## ohblueeyes (May 4, 2004)

I'm so so sorry. I hope you have lots of loving support from friends and family. I wish you strength to get through this.


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## Chug-a-Pug (Mar 5, 2007)

Quote:


Originally Posted by *mwright* 
I am wondering though if it would be worth it to do your own research about your baby's condition?? Also, are they 100% sure that your baby has this heart defect? I have read so many times about baby's being terminated because they thought the baby had a defect when that was not the case at all.. I don't know, I'm just thinking here.

We are here for you..









I was thinking the exact same thing. I don't think I'd ever be able to forgive myself if I terminated and found out that the baby was actually healthy and would have lived if I had continued the pregnancy







: I don't know what kind of heart defect the baby has, but I doubt it would be an issue to stop life support/extraordinary measures or to turn down the surgery once he is born full term. Or the defect may not be as extensive as the doctors think, and moderate interventions could provide him with a normal or near-normal life.

I was reading the story of a little girl who had a heart defect and died after 22 days. Her family is very happy to have had that time to spend with her, to hold her, to love her, to make memories with her. The website is http://www.caringbridge.org/visit/lakenroy if you want to read their story or contact this mom. She is very open to discussing her experience with others and appreciates the opportunity to remember her little girl.

You are in our thoughts and prayers!


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## mmmummy (Mar 12, 2005)

im not sure how to put this,but may i ask what the chances
are for the baby to survive if they were to have the surgery??
is it still very much on the low end of statistics?? im so sorry.


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## BugMacGee (Aug 18, 2006)

I've replied to your post elsewhere. I have a few questions, you don't need to post responses but some things to think about.

Do you mind sharing the defect? If not, I totally understand.

HAve you had a fetal echo?

Are you totally opposed to surgery?

I had a baby on Friday that was an undiagnosed CHD. Her parents decided not to do anything invasive as she also had other anomalies. I have seen some incredible outcomes with surgery, some not so good.

I would just recommend getting every piece of information available. I know time is an issue.

Again, I'm so sorry you are faced with this. Whatever decision you make will be made with love.

Peace.


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## alegna (Jan 14, 2003)

I would consider a second opinion if you haven't gotten one already. Mostly just for your peace of mind, to quiet the what-ifs.










-Angela


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## iris0110 (Aug 26, 2003)

s I am so sorry you are having to make these decisions. It must be so very hard for you. There are so many statistics and studies and questions. I have not been in you position before. I did lose my daughter Arawyn 3 years ago to stillbirth, but I know that isn't quite the same thing. I did get through it, I am still breathing. I did eventually get pregnant again and have a healthy baby. Like you said, these are decisions no parent should have to make, or even think about. I would like to suggest e few things for memory making though. You have such a short time, and your memories will have to sustain you for a lifetime of missing your child.

Look into now I lay me down to sleep. I've seen some of their work and it is beautiful. We don't have nearly enough good photos of Arawyn. If you can't get them look for another photographer or plan to take lots of photos yourself or have a close relative or friend present to do it.

If there is a chance your son will be born arrive plan for that. Plan for yourself or your spouse to hold him immediately, to spend his last moments with him. You want him to be with you, not some nurse or Dr examining or cleaning him.

Bath him yourself. Have the nurses bring in a basin of warm water, a towel and some washcloths for you.

Make or buy a tiny outfit, hat, special blanket, cloth diaper and soft toy. For pictures and the funeral. Take the time to dress him yourself if you feel up to it.

Make hand and foot prints and casts.

If he has hair cut a lock and tie it with a ribon.

Take time to examine and enjoy every inch of him, his fingers and toes, his nose and chin. His little tush. My daughter was 22 weeks and she was just perfect, a little minature. I wish I had spent more time examining her.

Rock him and sing to him. Especially if he is born alive.

Name him and tell everyone his name. Get something engraved or embroidered with his name and birth date.

These are just some ideas, things we did or wish we would have done. Do what is in your heart to memorialize your son. He will always be your baby. Also go to www.aplacetoremember.com They have so much good info.


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## liseux (Jul 3, 2004)

I'm so sorry.

Here is a book about a mom who faced a similar situation, http://www.amazon.com/Waiting-Gabrie...6986989&sr=8-1


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## mauerboysmom (Mar 29, 2005)

hey mama,
I don't usually post but felt like I should shar that my brother was born with transposition of the greater valves back in 1983, he had surgery when he was born and was one of the first to have an arterial switch which is much more commonly done now.
I just wanted to tell you that yes, it was a struggle at first, but, my brother after open heart surgery as a newborn just turned 24 and got married last month.
my mom was faced with a lot of similar choices but decided to try and fight for him, he is just fine and has lived a full life.
just wanted to share with you,
sending prayers to you and your baby.


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## gretasmommy (Aug 11, 2002)

I am so sorry for your family! Just want to offer support for whatever feels right for you and your baby.

Peace.


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## Quirky (Jun 18, 2002)

I am so sorry, mama.







No one should ever have to be in the agonizing position you are in.

Only you and your dh are in the right position to make the right decision for you and your baby. You may find some support and helpful information at http://www.aheartbreakingchoice.com/ If you haven't seen it already, it's for parents in the same place as you, making a decision to end a much-wanted pregnancy because of fatal defects in their babies. No one can say except you what the right decision is, but if you do decide to let your baby go now then no one should blame or judge you.

I am so sorry again.


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## WaturMama (Oct 6, 2006)

Oh dear mama,

I am so sorry and sad to hear what you are going through.

I have not been through it myself, but I just wanted to say that if you don't feel ready to induce yet, I hope you won't. I have found that in motherhood (and you most certainly are a mother) listening to my intuition has served me very well.

I have also found in my life that sometimes I don't feel ready for something and get myself all convinced I never will be and rush and then don't like how that feels. Other times I take my time and usually find I'm glad I did--in your case it might be for finding more information or it might be for saying the goodbyes you need to say or for whatever process you might need.

My heart goes out to you and your family.


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## cristeen (Jan 20, 2007)

Removed due to intolerant and hate filled responses received.


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## Quirky (Jun 18, 2002)

I am so sorry. You are making a loving choice for your son, but it must be the hardest thing in the world, and I wish there were something I could do to help ease your pain.


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## chrfath (Jun 5, 2003)

I just wanted to send you a hug and love during this difficult time.


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## Chug-a-Pug (Mar 5, 2007)

Your sweet little boy is blessed to have the love of his parents during his short life. It is obvious that you only want the best for him and cannot imagine the thought of him suffering. Here's a story about another little boy with HLHS whose family did not choose medical interventions (other than comfort care and pain medication through hospice to manage the horrible consequences of HLHS you mentioned). I thought this might be helpful to give you some ideas on how to get the most out of the short time you will have with your son.

http://www.erichad.com/wwl/acc.htm

You will continue to be in our thoughts and prayers in the weeks and months ahead.







My heart breaks for you.


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## BugMacGee (Aug 18, 2006)

FWIW-I have always said if we had a prenantal dx of HLHS, we would terminate.
I have seen a lot of cases that weren't (prenatally dx'ed) and they didn't catch it until babe was in really bad shape. Some don't have murmurs and don't present until their ductus arterioses close.


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## becoming (Apr 11, 2003)

I am so, so sorry you are faced with this decision. I know that you are making this choice out of love for your sweet baby. I will be thinking of you and your family in the coming days.


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## kaylee18 (Dec 25, 2005)

Laura Shanley's son Nicholas had a fatal congenital heart defect. I expect she would be happy to share more details of his story with you as well. I hope that being able to hear from others who have been through a similar loss may help you in some way. I am so sorry.


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## iris0110 (Aug 26, 2003)

I just wanted to offer more







s YOu have made such a very hard decision. No mother should ever have to decide these things. It is obvious that you and your dh have thought very long and hard about what is best for your son. I am glad that Now I lay me down to sleep is going to be able to help you with photography. I hope that your induction is fast and that your son's birth is as peaceful as it can be. I hope that you make many memories with him in the time that you have.







s again mama. I am so so so very sorry.


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## kaylee18 (Dec 25, 2005)

shoes' baby Faris Mona was just born with HLHS.


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## liseux (Jul 3, 2004)

I'm thinking about you too and wishing you as much peace as possible as you grieve.


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## Chug-a-Pug (Mar 5, 2007)

http://www.ignitermedia.com/products...70/99-Balloons

Still thinking about you and praying for you and your husband.


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## chlobo (Jan 24, 2004)

Thinking about you and hoping your induction goes as well as can be expected.

You are a very brave woman and obviously have thought through the best possible course of action for your family. I wish you strength in the next few days.


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## gwenevyn (Apr 24, 2007)

I'm deeply moved by the story of your poor baby. You must be suffering so much... I'm so sorry Cristeen.

My nephew was born with a rare genetic defect which causes a highly fast growing and fatal form of brain cancer. We cherished the short time we had with him on Earth. He was the sweetest, most darling boy you ever saw! We are so glad we were able to meet him, even if it was for just a little while. He did suffer, but he suffered bravely and lived joyously. I cannot imagine what it would have been like if anybody had decided to shorten his already short life. We would have missed out on a lot.

Here is a very good resource for any of the many mothers who may find themselves in your shoes: http://benotafraid.net


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## dmarieb (Dec 9, 2006)

I am so sorry for what you are facing right now. You and your family are in my prayers. I cannot even imagine the pain you could be feeling. I am so deeply sorry. I wanted to share a website with you in case you wanted to view stories from other families who have dealt with fatal and other difficult diagnosis for their babies. http://benotafraid.net/

You are in my prayers.







:


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## iamleabee (Jul 28, 2005)

i'm so sorry mama. you are in my thoughts and prayers.







:


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## Chug-a-Pug (Mar 5, 2007)

When I saw this website I thought of you and all the other mothers who are facing such a devastating situation.

Stories of Hope


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## kell0618 (Apr 25, 2007)

I am praying for your child as well as you, your husband and all of the medical staff involved.







: Your situation has been forefront in my mind and heart since I read your post days ago.


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## onyxravnos (Dec 30, 2006)

I'm so sorry love fir what you are having to go through. thinking of you and your family.


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## MillingNome (Nov 18, 2005)

May you find peace in your choices-


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## Soogie (Feb 7, 2002)

You and your family will be in my thoughts. As a photographer with NILMDTS, I am glad you got in touch with a participating photographer. I know the images they capture will bring comfort and peace to your soul.


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## cristeen (Jan 20, 2007)

Removed due to intolerant and hate filled responses received.


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## Quirky (Jun 18, 2002)

I am so sorry, mama. You chose a beautiful name for him, and you will always be his loving mama.








Corwin Matthew


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## iris0110 (Aug 26, 2003)

s I will be thinking of you and your family. I looked at Corwin's pictures and they are just beautiful.








Corwin


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## gretasmommy (Aug 11, 2002)

Corwin Matthew









Peace to you and your family.


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## Lovemy3babies (Apr 23, 2007)

Nevermind..... I cant go there....


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## Chug-a-Pug (Mar 5, 2007)

Cristeen, you remain in my thoughts and prayers







:


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## BettyOkinoRulz (May 2, 2007)

cristeen:

I read the comments and your post on that other forum. I want you to know that not all Catholics agree with those comments. On behalf of the more open-minded members of the Catholic community, I would like to apologize for an additional pain those comments may have cause you and your husband.

You are correct--they have no right to judge you! I will continue to include you in my prayers.


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## Crisstiana (Jan 18, 2007)

Hi, Cristeen:

I read your posts before you edited them, and I'm just sick thinking that others have added to your pain. I'm so sorry for what you, your husband, and your beloved child have had to go through. Please know that you have many people here who are thinking of you and sending you their heartfelt best thoughts.


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