I'm going thru Hell.

veetveet · February 2014

Currently 26 weeks pregnant- baby diagnosed last week with CHD- double inlet left ventricle, hrhs, VSD, And pulmonary stenosis.

We have 4 options that all suck

1. Termination was offered but not guaranteed. Has to go to ethics board based on my gestational age.

2. Palliative care- give birth and watch him deteriorate. He could live up to 18 months.

3. Multiple surgeries and procedures with no guarantees other than complete torture for him and my family. Prognosis is terrible.

4. Adoption (I cannot beleive they even suggested this)

I cannot be pregnant anymore. Every kick, punch and roll goes straight to my heart- especially knowing he is perfect other than his heart. I love him now- but I do not want to get to know him and love him more (if that makes any sense). I am scared to be his mom- scared of going in to check on him after a nap and he's gone. Today random people were commenting on how I'm glowing, how excited we must be, if my daughter is excited to be a big sister. I wanted to scream. How do I go to work until May and pretend to be fine?

We are heart broken. All of my choices are terrible.... but I cannot carry him to term....this pregnancy will put me in a mental institution.

I am hoping the ethics committee sides with me. My son will die no matter what option I choose. I want him to be peaceful and not be old enough to be scared.... to see our tears and understand what they mean. My fate is in the hands of strangers that don't have to live my personal hell.

I have never felt so terrified in my life. I am not the same person I was and I never will be. I feel so hopeless and incomplete.

We saw his beautiful little face during our ultrasound the other day.... he has my chin and lips- just like my daughter.

Noethola · February 2014

***Siggy warning***

I am so very sorry you are faced with this.

Mrodriguez898 · February 2014

Oh sweety I don't know what to say except that I will pray for you and hope that you and your family will make it through this.
I am so sorry.

VyD81 · February 2014

My heart breaks for you, I'm so so sorry.

veetveet · February 2014

Last week our biggest dilemma was deciding on a name. I Seriously cannot believe this is happening to us.

Bgirma · February 2014

I am so sorry. No one should have to make that decision. I will pray that you and your family are able to find some peace.

shandorfml2 · February 2014

Those are all sucky options. I too am surprised they said adoption... lots of hugs sweetie. I know there are some books on the subject, you could look for pregnancy fatal diagnosis on amazon or google. I of course can't think of any of the names..

shandorfml2 · February 2014

Found one.. "A time to decide a time to heal"

DevonBedford · February 2014

It truly takes your life, and what you thought you were planning for, and picks it up, twists it into a little ball and slams it against the wall.
As soon as we were told of Micah's issues I immediately went into hiding. There was no way I could face the world of "congrats!" "How far along?" "Is it a boy or girl?" Etc, etc. No matter what our decision on termination was to be, I couldn't walk around with a happy face and pretend everything was fine.
Feeling his kicks was like a mind game. It made it feel as if he was perfectly happy and healthy in there. And we were just going to stop that. But I was told over and over that it was my body that was keeping him going. That his little heart wouldn't sustain without me, or at least for a very short, painful time.

No loss of this kind is easier than another, but I wish every day that we didn't have to be the ones to make the decision ourselves. Everyone kept telling me how strong I am and that they would do the same thing, but I felt like the biggest coward in the world. I still do most days. But somehow it's easy for me to tell you how strong you are. You are not giving up on your baby. You are saving him from constant pain and suffering. What mother wouldn't do anything to keep their baby from hurting?
You will find that your daughter will be a huge comfort to you. She will offer hugs and cuddles just because she knows you are hurting. She will also force you to see a glimmer of good in the most horrible days. Let her be that sunshine for you.
Please feel free to PM me. It's only been 9 weeks since we lost Micah. I still feel so much of what you are going through.

Maybe Joleisa · February 2014

I'm so sorry anyone would have to make any of those choices. Whichever choice you make will be the right choice. ((hugs))

kz's_girlygirl · February 2014

I am so so sorry and I really hope that you are able to go forward with the decision that is best for you and your family. None of the choices are good ones and none are easy but I hope the ethics board rules in your favor.

I am thinking of you and hoping for some comfort through all of this.

MCH77 · February 2014

All of the options are horrible. I hope you and your family can pick one that you can live with. I'm so sorry. ((Hugs))

kaydee_2008 · February 2014

Oh sweetie I am so incerdibly sorry.

We were given similar options with our daughter. I couldn't take being pregnant anymore either. She was born at 26weeks, 3 days after her diagnosis. We had her be comfort measures only. I was incredibly hard to know that since she was so young she would quickly die but we had two hours before she passed and the rest of the day to love her.

I was unable to terminate because of her gestaional age. If it is an option you would like I would ask about having him be comfort measures only. They will just make sure he is comfortable.

stefuge · February 2014

I am so sorry that you are faced with such awful decision. ((Hugs))

jess123456 · February 2014

I am so sorry. We experienced a similar diagnosis for our daughter. This is something that no parent should ever have to go through. You are in my thoughts and prayers. Please feel free to private message me anytime. You are not alone.

jbranden12 · February 2014

I am so sorry you are going through this. I hope the hospital will let you be induced and provide comfort measures so you can spend some time with your precious son.

My DD1 was born still, but we were given the option of removing support for my DD2 who was born at 26 weeks and suffered a massive brain hemorrhage with a terrible prognosis. I remember wishing SO hard that someone could just tell me what her life would be like so I would know and could make an informed decision. Unfortunately, no one could predict this for us and no one can tell you how each decision will affect you and your family. My heart goes out to you, and I wish you and those around you strength and peace.

BrittianyM · February 2014

I am so sorry you are going through any of this. Its not right. Speaking as a person that got to know my daughter and see the light in her eyes, she was found after a nap not breathing, I can tell you that I would have wrether have had those 11.5 weeks with her than nothing at all. That is time that she got to live and love. That matters alot! Its so hard for me to hear what you are going thru and the decisions you are faced with. My daughter taught me to cherish every single moment even if they are hard. Please try to enjoy every moment you have with your son and let him know how much he is loved. In the end that is the only thing that matters. I wish you peace in your decisions.

mingaling2 · February 2014

I'm so sorry you are faced with this terrible situation. I pray that you can make a decision that will bring you peace.

shandorfml2 · February 2014

During my past 11 months being a bereaved parent, involved in real life support groups, and on the bump I have never seen a mama regret having that precious time with their baby if they are born alive. My daughter was born still but I cherish those 24 hours I got to be with her. If she had lived for minutes, hours or days I would also have cherished that time with her. ((hugs)))

cawettig · February 2014

I am so sorry you are going threw all this pain. We were told our angel had a large omphalocele at 13 weeks. They couldn't tell us if she would live or survive. If we carried her to term she would need tons of surgeries and be in the nicu for a very long time. No one could tell us if. She would live a normal life or not. I didn't know what to do. They said we could either terminate her or try to save her. I couldn't live with the idea of me giving up on her. No one could guarantee the time we would have with her. Dh and I fought a lot about it, if she wouldn't have a normal life then he wanted to have her not go through everything and wanted me to terminate. I told him I couldn't give up on her and he supported me. Unfortunately she died on the way to the hospital to have her from complications from her omphalocele.

I cherish every kick and heartbeat I heard. That was the time we had with her, I am so glad we gave her a chance.

You need to take sometime away from work and everyone and think about what YOU feel is best for you. What ever decision you make we will be here for you supporting you.

veetveet · February 2014

shandorfml2 said:
During my past 11 months being a bereaved parent, involved in real life support groups, and on the bump I have never seen a mama regret having that precious time with their baby if they are born alive. My daughter was born still but I cherish those 24 hours I got to be with her. If she had lived for minutes, hours or days I would also have cherished that time with her. ((hugs)))

I wish was a guarantee my baby wouldn't suffer.... because the last thing I want is to watch him struggle to breathe....while I look into his helpless eyes. I don't want to watch him have a stroke as my friend's son did 8 hours after being born with a very similar condition. I don't want to watch him go into cardiac arrest. My instinct would be to protect and save him.... not watch him slip away. There are no guarantees that he will fall asleep and be peaceful. I cannot put myself thru more torture.

This is definitely not an easy decision. And not one that we are making lightly. I am pretty sure I have aged 10 years in the past week- I cry constantly, I'm starting to be irrational with my thoughts- worrying about something happening to my entire family. I've barely slept or eaten.... my thoughts are consumed.

Until I have a final decision on Thursday.... right now my life is in limbo.

Auki13 · February 2014

I too had to make a decision when we received a terminal diagnosis for our daughter. And we were also told that she could be born still, born and live minutes/hours/days/weeks... Nobody knew. Nobody could tell us if she was going to be in pain, if she was happy, if she would be better off if we didn't continue the pregnancy. I don't know what your decision is going to be (and whatever you chose I am glad they are giving you time), but I can tell you mine. We chose to carry her. As her mother, I felt that she was content in-utero and that I was doing all I could to make her short life as good as it could possibly be. It gave me time to grieve, but also focus on her and make some memories while pregnant, it also gave us time to figure out how to say goodbye. I know you mentioned that you don't want to love your little one more than you do, but I feel like as a mom that isn't possible. No matter what you do, you will love your baby infinitely and if you chose to carry, you won't love the baby and more/less than if you chose to terminate (if you even get that option). We didn't know what exactly was going to happen, but for our family it was the best decision. If you would like to talk any more about why we made the choice we did, feel free to PM me. I won't say that once the decision was made it was smooth sailing, but once we made up our minds we didn't look back. My heart goes out to you as I know how you feel, and I wish I could take away just a bit of your pain. (((HUGS)))

veetveet · February 2014

Thanks Everyone for your support. Termination was granted. I will be delivering him on Tuesday/Wednesday. It's going to be the worst day of my life.

Auki13 · February 2014

I am glad you were able to make the choice you wanted, and I hope it goes as smoothly as possible. If you don't mind a suggestion, you may want to ask for as many mementos as possible. You will most likely be in a fog and may not think of it, but if the nurses could get hand/footprints, a lock of hair, a blanket the baby touched, pictures (though that depends on the type of termination you are having) it may help in the future. You may not want those things immediately (or maybe you will) but those are things you can lock in a box so that if you ever want them they are there. (((HUGS))) you will be in my thoughts and prayers next week.

DevonBedford · February 2014

I'm so sorry you have to go through this, but I'm glad to hear you were granted the option you hoped for - not that it was an easy one to face.
It will indeed be the worst day of your life. There's no doubt about that, but I second the advice to get mementos, photos, etc. Hold your sweet boy if you are able. We took a blanket to the hospital for our son to be wrapped in and they gave us the tiny hat they put on him, an impression of his footprint, his hospital bracelets, and a CD of photos they'd taken as well as a tiny charm of angel wings. We took our own photos as well. We also had a minister come in and bless him and officially give him his name.
It was important to me to have/do all these things. To acknowledge that he was real and he was loved so very much.
You will be in my thoughts and prayers.

veetveet · February 2014

Auki13 said:

I am glad you were able to make the choice you wanted, and I hope it goes as smoothly as possible. If you don't mind a suggestion, you may want to ask for as many mementos as possible. You will most likely be in a fog and may not think of it, but if the nurses could get hand/footprints, a lock of hair, a blanket the baby touched, pictures (though that depends on the type of termination you are having) it may help in the future. You may not want those things immediately (or maybe you will) but those are things you can lock in a box so that if you ever want them they are there. (((HUGS))) you will be in my thoughts and prayers next week.

Thank you. I asked them today and they said they put a memory box together- hand prints/foot prints, hat, photos, etc.

jonahsma · February 2014

My heart breaks for you, I am so sorry you are going through this. DH and I will be praying for you and your family. Please know that we are all here for you. ((hugs))

veetveet · February 2014

Thank you to everyone for your support.... funny- your support right now means more than the real people in my life. (Except for my hubby and mom of course) It's good to be able to connect with people that have had similar experiences. You give me hope that at some point I will be a functioning human being again.

Last night I literally cried myself to sleep. Pretty sure I haven't done that since I was a kid. I imagine there will be more nights like that coming soon.

Thanks again. Xo

kz's_girlygirl · February 2014

I found the same to be true- people in real life just had no idea what I was going through and that made me feel even more isolated. I am glad that you feel comfortable reaching out here, and I hope that this board continues to be a source of support for you in the days and weeks to come. I am thinking of you, and hoping for peace and comfort

jess123456 · February 2014

I am so glad that you found this board. It is filled with amazing women who get it.

My advice to you would be to continue to come here often. You will find that those in your real life will seem to move on faster not because they don't care any less but because it is just what happens (as I think many of us can relate to). This kind of loss can be all consuming sometimes and please know that we are always here for you. Does it get more manageable? Absolutely. In some way you will learn to live with your new normal. I promise you that.

Another really helpful site is called Still Standing. It is filled with amazing articles that make you feel like you aren't alone especially when it feels like no one in real life gets it.

I love that they are going to be giving you a memory box. My other suggestion (when you are ready) is to write a letter to your son. I did this and I am so glad I did. I often add to the letter and read it back. Seeking the help of a therapist and in person support group might also be incredibly helpful but be gentle with yourself and only do things when and if you are ready.

Please know that you aren't alone. You are in my thoughts and prayers.

jbranden12 · February 2014

((hugs)). The day we met and said goodbye to our daughter Patricia was a very difficult day, but looking back, it is not the worst day of my life. The worst day was finding out she was dead. Meeting her three days later was heartbreaking, but it is also the day we held our first daughter in our arms and stared into her sweet face. Cherish the moments you have with your son. Wishing you strength for what you are about to endure.

kaydee_2008 · February 2014

Sending you so much love my dear.

sonjaleake · February 2014

I am so sorry you are in this position. Those are all terrible choices. Sending you and your family best wishes.

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