New to Board...Recent Loss due to TTTS

It is so hard to write the first time about losing your baby. I'm 21 weeks pregnant with ID twin girls and was diagnosed with TTTS at 17 weeks. Long story short we had surgery on Tuesday (5/6/08) and our Baby A did not survive the surgery. The doctors believe that without the surgery we would've lost both twins. They also said that if Baby A would've survived the surgery they do not believe that she would've lived long after due to other complications.

I have so many questions and so, so much pain that my heart is just heavy. It just doesn't seem like anyone else understands. My husband hurts, I know, but he has said himself that he can't possibly have the connections with the babies that I have already had. I just don't want ppl to act as if our baby A never existed. To me, she is very real and has been since the day I found out I was pregnant.

The mix of emotions I have is just undescribable. I'm so thankful to have one baby survive the surgery and she's doing really well. Yet, I don't tend to focus on her right now as much as I do our twin that has passed.

I just had so many hopes and dreams. I couldn't wait to see them both crawling around together, sleeping together, showering them both with hugs and kisses. All of my visions were of two and now there is only one.

I know that this grieving process is just starting, I'm very concerned about the day we deliver. I want to see both babies, yet the surgeons told us that our baby A may not be recognizable by then, depending how long I carry her twin. As hard as it is to carry her until delivery a part of me is comforted knowing that she is still with me. I get to have more time with her. Maybe that's the wrong way to think about it and it may possibly make delivery even more difficult.

I know that I'm rambling, there's just so much on my heart. This site has been a great support system since we found out we were having twins. I know from reading other posts that many members have been here and have felt the same pain. I would greatly appreciate any advice on how to help others know that both of our babies are real and exist, not just one. How delivery went if you lost a baby around 21 weeks. Decisions regarding what to do after the babies were born (ceremony, etc). Thank you so much for listening and allowing me to discuss some of my pain.

Jenn

 

Jenn,

I dont' have any experiences but wanted to send you hugs and strength. Your post made me cry and I am so sorry you are having to go through all of this. I know there are many women on here who too have unfortunately felt your pain. I know they will have great advice for you and help you get through this time.

 

I am sorry. I would like to add that each of your feelings are valid....they are your feelings. Please don't feel that they are "wrong" or apologize for how you feel. I too would want to see my angel baby. She is very real and will always be real.

I will pray that Baby B will contine to thrive and that you will get some "healing in your heart"

Hugs and Prayers,

Missy

 

Jenn, first i am so sorry for your loss. I lost both twins at 21 weeks, and its unbelieveable heartache. You have to make choices now that are what is right for you and your husband. I will tell you, though, I would give anything to hold my babies again, it will be hard for you, but I think I can say that you probably will regret it if you don't. You have a little time to prepare yourself, we had just moments, so you can have the perfect outfit and perfect ceremony planned for you sweet angel. Most of us on this forum have been through the same or similar situation, so please feel free to come here and vent, cry, whatever you need. You will grieve in your own time, as everyone is different. There are some links on this forum for resources, where you can find clothing and items that will fit your baby at 21 week size.
God Bless you , if you need anyting, please ask or PM me.

I just read your post on the Expecting Board and I wanted to add, you will always be a twin mommy. Don't forget that.

 

:hug99: I am so very sorry for your sweet little baby A! Yes, you are and will always be a twin mommy. I have no advice about delivery or ceremonies or anything, but I do have lots of prayers for baby B and for you!

 

I'm very sorry for your loss. We didn't have any ceremonies so I don't have any ideas there. I hope that Mother's Day is gentle on you.

Marissa

 

So sorry to hear of your loss. I had a co-worker go through a similar experience and I cannot even imagine the heartache. I will say a special prayer for Baby A, B, you and your family.

 

:hug99: I'm so sorry for what you're going through. Like momoftheforest said, it will be impressionable to see your baby, but it will help you with closure to see her and hold her. I'm sending prayers to you and your family and for baby B.

 

:hug99: Jenn I am so sorry for your loss!! and yet so happy to hear that babay b is doing well. i also lost my baby a (evan) due to TTTS at 27wks. and had to deliver my miracle boy the following day so to keep baking your precious surviving angel is awesome! No one will ever understand the loss that we feel besides the mommies that have been thru it. The pain will never go away it will just deminish alittle and me personally have an empty hole inside of me where Evan was. Your precious angel is amazing and if you feel like you want to see her you should. we all regret the things we didnt do and think we could have done longer the things we did to...many of us wished to hold our babies longer, or take pics of them, or take a locket of thier hair, or even see them. Do what you feel is right at the time because later it will seem different but you did what ws right when you were feeling it. I am truely sorry and if you ever need to talk you can PM me. I also loved your thinking of getting to hold on to her longer! something so many of us wished we could have done. take care Many hugs to you and your family! and I will be praying for you precious miracle til I read your birth story!!
krystal

 

:hug99: I am sorry for your loss .We lost our son Jacob (baby A) to ttts between 17 and 19 weeks .The doctors said when we delivered we would not be able to see him, but we did see him and he was perfect he had ten toes and ten fingers and just looked Like his brother Benjamin (baby B but was just alot smaller .We thought about having a ceremony with friends and family but when Benjamin come we found out he had a heart problem and was rushed to Children's hospital and was there for over a week.We Had Jacob cremated and have his ashes to give to Ben when he gets older .I was around 38 weeks when I delivered in 2004. Like ppl have said you will always be a twin mommy. Kathy

 

Hi, Jenn. I'm very sorry for the loss of your little girl, and I pray that Baby B continues to do well!

Personally, I would want to see her when she is born. You could have a nurse describe what you will see so you are prepared, or you could just hold her wrapped in a blanket. This will sound strange because while I don't envy having to continue the pregnancy knowing about the loss, I do envy the time you have to prepare, to list and know exactly what things you want to do. Here are some things I did or wish I did:

Pictures with each member of the family and one all together
Pictures of the girls together
Lock of hair
Hand and footprints and casts
Choose an outfit

The TTTS Foundation site has some links to the info as well, and it's in the big book that Mary sends out if you request info on TTTS if you have it.

My girls were born at 30 weeks and Joey was taken right to the NICU so I have no pics of them together. We kept Olivia with us from the time she was born (12:52, so maybe 2:00 after I was back from my C-section, she was in the room before I was with my DH and my mom and dad) until 7:00 when we said good-bye. That's when I knew the focus had to be on Joey. DH had been taking people to the NICU to see her, but I hadn't yet, so it was time. Our siblings were there and held her, as were my parents and auny/uncle. MIL was out of town and couldn't make it back. So have everyone there. I think that holding her will help make her more real to them, even if they hold her wrapped up. (BIL was there but didn't want to hold Olivia...that was fine. We each do what we have to.)

The girls' b1rth announcement was one that I had found on the CLIMB website, check the PG resources, and read: Every good and perfect gift comes from above, We are blessed with twins to cherish and love, Born together to grow apart, One in our hands, one in our hearts. Here's a picture of it: View attachment 3218

We're Catholic, so we held a funeral Mass about a week and a half later for our families and close friends. My mom made all of the arrangements; I was in no mood to do soOlivia is buried in the baby section of a cemetery; it's actually very beautiful and peaceful there. When we had Joey baptized, my SIL and BIL who "are" her godparents walked with us when we went for Joey and they lit her baptismal candle too.

Again, I'm so sorry! I was wondering what names you have picked for your girls? Take care of yourself and your girls! :hug99:

 

Hi Jenn,

I just wanted to offer my condolences to you. We had to deal with the emotional rollercoaster of TTTS but I cannot imagine the pain you are feeling right now. I hope that you can allow yourself to feel whatever emotions you have without feeling bad or guilty for them. I truly hope that time lessens the pain you feel.

Thinking of you,
Kelly