My Annabelle Update (Warning-Tickers)

Auki13 · July 2011

I have written here in the past, but haven't recently so I will summarize my story once more. At our 20 week ultrasound we found out that our baby has anencephaly (she is developing with little/no brain and or skull). This is a fatal diagnosis but we decided to carry Annabelle for as long as she is comfortable and content in my womb. I am now a little over 33 weeks and we are getting closer to having her. I just had an ultrasound and found out that Annabelle is a peanut (she is measuring at less than 29 weeks) and has even less skull than I imagined. She has nothing past her eyes or ears. This is devestating for me, as we were hoping to have a few moments with her before she passed away, but it seems like the chances of her not being still born are miniscule. I know this is a different situation than most have on this board, but I needed to share because I am really suffering emotionally and I know you all know how it is to lose a baby (or be in the process of losing a baby). I am also extremely uncomfortable because I have accessive fluid (Annabelle cannot swallow and her spinal fluid is leaking) and cannot even enjoy the last bit of time I have with her. For anyone reading this, thank you. I have been really struggling lately and just needed to let everything out. I am also planning her funeral and it kills me to have to plan it while she is still tucked safely inside of me. Any thoughts and prayers are much appreciated for my angel, and I pray for everyone on this board who has lost their precious little ones, no matter what stage.

caren5980 · July 2011

Oh I think I remember you from before! I am so sorry! I cannot even imagine how horrible it is to plan a funeral for a child! T & P definitely your way and the rest of your family!!! Your story brings tears to my eyes! I give you my best!!! Hugs!

ania.mario · July 2011

I just wanted to tell you that I am so sorry. Please hang in there.

BeautyfromAshes · July 2011

I just wanted to tell you how very sorry I am. I lost my baby girl a few weeks ago and planning her funeral was just awful. I wanted to encourage you though, I don't know if it is much of an encouragement, but to tell you that our baby was born sleeping, and the few hours we spent with her were still very special and wonderful. We had my cousin, who is a beautiful photographer, come in and take lots of pictures. She made us a wonderful DVD set to music that I watch all the time. I had a picture of her precious feet in black and white blown up and framed for over our mantle. She was beautiful, and I really want to encourage you to take pictures of your baby, whether she is born alive or not.

I know it can seem morbid, but the women I have spoken to who have pictures never, ever regret taking them. The ones who did not, always regret it, in my experience. If you cannot find someone who you know that will do a beautiful job, there is an organization called "Now I Lay Me Down to Sleep" who will come to the hospital and do it for free. This is all they do, and they do a wonderful job.

Other than that, all I can say is hold her while you can, love her while she's here, and make as many keepsakes and momentos and you possibly can for her and for you. Get footprints, pictures, stuffed animals, etc. I have a bunny that I bought for my daughter and I hold it every night. It helps.

I'm so sorry. Please keep us posted on how you're doing.

jsunflower · July 2011

I just wanted you to know that I am sending you many hugs and prayers. You are an amazing & strong person, and I am so proud of you for letting your sweet baby stay as long as she can. Please keep us updated.

RizzaTs · July 2011

I am so sorry for what you are going through. My heart hurts for you.

Thank you for sharing your story with us. Giant hugs.

Auki13 · July 2011

I am so sorry for your loss, but thank you for the words of encouragement. I have heard of NILMDTS and have been in the process of getting in contact with one of their photographers and am praying that things work out with him or her. From other parents all I hear is how much they treasure their pictures and am definitely bringing a camera of my own on top of hopefully having the professional photographer. I actually started calling about funeral arangements and could barely get the words out to explain our situation... Luckily I have a very supportive nurse midwife who will work with us to make the delivery as calm and comforting as possible. And I am just hoping that I can get through it all. As you know, you don't really have a choice in the matter. I will keep everyone posted as the time is drawing near and will post a picture of my angel when I can.

karenjoyharrison:

I just wanted to tell you how very sorry I am. I lost my baby girl a few weeks ago and planning her funeral was just awful. I wanted to encourage you though, I don't know if it is much of an encouragement, but to tell you that our baby was born sleeping, and the few hours we spent with her were still very special and wonderful. We had my cousin, who is a beautiful photographer, come in and take lots of pictures. She made us a wonderful DVD set to music that I watch all the time. I had a picture of her precious feet in black and white blown up and framed for over our mantle. She was beautiful, and I really want to encourage you to take pictures of your baby, whether she is born alive or not.

I know it can seem morbid, but the women I have spoken to who have pictures never, ever regret taking them. The ones who did not, always regret it, in my experience. If you cannot find someone who you know that will do a beautiful job, there is an organization called "Now I Lay Me Down to Sleep" who will come to the hospital and do it for free. This is all they do, and they do a wonderful job.

Other than that, all I can say is hold her while you can, love her while she's here, and make as many keepsakes and momentos and you possibly can for her and for you. Get footprints, pictures, stuffed animals, etc. I have a bunny that I bought for my daughter and I hold it every night. It helps.

I'm so sorry. Please keep us posted on how you're doing.

PatientlyWaiting10 · July 2011

I'm SO terribly sorry for your loss. I can't even imagine having to plan my baby's funeral before they're even born. Sad

Other ladies on here have recommended this website and I looked at last night for the first time for a friend who just lost her baby. It's called Now I Lay Me Down to Sleep and they come in and take beautiful rememberance photos. Search your area and maybe someone will be able to help you remember this difficult time. You are in my thoughts and prayers and I will also pray for comfort for you and your family.

Auki13 · July 2011

Thank you everyone for your support. It is difficult getting through these last few weeks and any words of encouragement help.

shanrob · July 2011

You are amazingly strong and courageous to make the beautiful decision to keep her with you as long as possible. I will send lots of prayers up for her that her transition is peaceful (i have no doubt it will be) and that you can find some comfort in the days to come.

LoveOfMikesLife · July 2011

Sweetie I am SO sorry! You are an amazing women to go through what you are and having the courage to share your story with us! Nothing I can say will help you, so I won't even try! Just please know that if you ever need anyone to talk/ yell/ cry to I am here! Big hugs

ChristinaCT · July 2011

My heart hurts for you. I am so very sorry you & your family are going through this. (((HUGE HUGS))) my thoughts & prayers are with you, your family & that sweet baby girl you are carrying. She knows the love you guys have for her, she can feel it. My heart goes out to you.

Marcilyn0812 · July 2011

I have friends who have had this heartbreaking situation (but they chose to say goodbye early). My best friend is a NILMDTS photographer and I see you already have their info. Things I have learned from them...

Even if she is gone when you deliver make a list of the things you want to do with her. Do you want to bathe her, dress her, have her blessed in some way, read her a story? Concentrating on making the most of any time you have with her and creating memories to hold onto are the most positive thing you can concentrate on right now.

Can they do anything about the excess fluid (like drain it) to make you more comfortable?

I am so sorry you are having to face this. All my best.

Lbloom · July 2011

Oh no! What a difficult thing to be facing. My baby was stillborn but we didn't know it. She had a heartbeat when we went into the ER. They took her emergency c-section but it wasn't soon enough. Her umbilical cord was hyper-coiled. It was a complete shock to us that we didn't get to bring her home.

Her funeral was just last week. It was physically exhausting to make all the arrangements and I was still recovering from the surgery. I don't know how I would've done it without my mom or husband. I feel like they made most of the calls and I just sat there like a hopeless lump. I made a lot of the important decisions, though. No parent should have to plan their child's funeral, it's so sad and unfair. We feel so instantly aged by all this.

I agree about the photos and mementos. We treasure and kept many things, the outfits the nursing staff bought for her, the pink quilt they wrapped her in, the teddy bear in her flower arrangements. The nursing staff called in a photographer for us, they were amazing. She came at 1am and took 300 photos of us. We blew up and framed some of the photos for the viewing which took place right before her service. We played a slide-show DVD at the luncheon afterward. An employee of the funeral home commented that her's was the most touching and tender funeral service he'd ever attended in all his years. He said she was just beautiful and he was genuinely touched. I'm glad we honored her so well. The photos will always be treasured. We just watched the slide-show this morning and were comparing her features to some of our newborn photos - deciding what features she had inherited from whom. It was nice. This morning was better than the last two, let's just say that.

I pray for strength for you in the coming days. I know it is of little comfort, but I hope we all find comfort and peace again in time.

Cercamom2011 · July 2011

Auki, your story breaks my heart..When our baby was in the NICU, the director shared her story about a situation similar to yours. I just remember thinking that's a terrifying decision to have to make and then we had to make a similar one. I will say that your heart will guide you to make the right decision for you and Annabelle. When it was time to take our daughter off support, we knew. She waved goodbye to us several times that day, and we knew it was time to let her go. My heart goes out to you and wish you peace.

damabo80 · July 2011

Siggy warning

Thank you for your update. I've been thinking about you and wondering how you both were doing. I hope you get time with her after delivery. I know that the drs can remove some of the fluid...have your drs considered doing this so you can get a bit more comfy?

On a side note, I'm part of an anencephaly group on FB. It's called "anencephaly angels", and there are over 800 members, many of whom carried as long as possible, and who are currently carrying. Lots of great info and support there. The ladies are wonderful. It's a closed group, but just click ask to join.

Hugs to you.

aflowers · July 2011

I'm so sorry you are going through this. You are so strong for continuing to carry your baby. Our baby was diagnosed with a congenital heart disease during our 20-week ultrasound and we chose to continue the pregnancy. We knew she wouldn't be with us for long, but she ended up being stillborn. You will cherish every second you have with her whether she is stillborn or not. Our nurses and doctors let us hold her as much as we wanted and even let her stay in the room with us until we left. Don't be afraid to ask for as much time with her as you want.

Lots of hugs and T&P to you! PM me if you want someone to talk to.

ekmOC · July 2011

I am so very sorry for what you are going through. We did not have your experience, as our daughter's fatal congenital heart defect was not diagnosed, so I was induced after she had already passed away.

Hearing your story, and understanding the gravity of her diagnosis, I wonder if you and your doctor have considered a planned induction. Since you are suffering so much emotionally, and your physical condition is so uncomfortable, perhaps it would be best to proceed with the induction sooner rather than later.

I have often wondered what it would have been like to have known that our little girl would not survive. I can imagine how difficult a time this is for you. I don't know what you feel would be the best option, but it might be worth considering delivering your sweet baby in the near future.

jen302 · July 2011

i am so sorry....my heart aches terribly for you . thoughts and prayers...

LS50 · July 2011

Your sweet little Annabelle has the bravest, strongest momma I know. No matter what the scans say your little angel will always know that her mother loved her and kept her safe for as long as she could...and that is all any child can ever ask for.

mara005 · July 2011

I am very sorry, and will pray for you.

I wanted to share a blog with you, I hope her story and others she has posted can help you in some way. www.thegiftofrachelslife.com

Auki13 · July 2011

Thank you for the advice- we are trying to plan what we want done, and I am just having a hard time making concrete plans (I guess it makes it more real to me). But I have already started a bit of a "wish list" of things I would like to do... I think the most important for me is that my children get to meet their baby sister and just be with her before she gets taken away...

And yes there are options with the accessive fluid, but there are risks involved. They can do an amnio removal. At this point though I am serioulsy considering it and will be speaking to my nursemidwife about it at my appointment on Thursday. I can't do much of anything anymore and just sitting around hurts, so I am going to have to give in and deal with the needle.

Thank you again for the kind words and suggestions.

Marcilyn0812:

I have friends who have had this heartbreaking situation (but they chose to say goodbye early). My best friend is a NILMDTS photographer and I see you already have their info. Things I have learned from them...

Even if she is gone when you deliver make a list of the things you want to do with her. Do you want to bathe her, dress her, have her blessed in some way, read her a story? Concentrating on making the most of any time you have with her and creating memories to hold onto are the most positive thing you can concentrate on right now.

Can they do anything about the excess fluid (like drain it) to make you more comfortable?

I am so sorry you are having to face this. All my best.

Auki13 · July 2011

I am so sorry for your situation, I cannot imagine losing a baby with no warning. I can't say I'm lucky, but I am glad that I have time to prepare myself and my family for the fact that Annabelle isn't going to stay with us.
I do understand your feeling of aging. I also feel like I won't be able to look at pregnacy in the same light ever again. Now that I have been exposed to Annabelle's condition it has open the doors to all the problems that can affect a baby. I was so blissfully unaware with my first two and even now when a friend announces she's pregnant all I can think is, I hope there is nothing wrong with the baby. It's awful.
I am hoping to have a meaningful funeral for my baby girl and just want to share her with everyone, because she deserves it. Again, I am so sorry for your loss, but thank you for sharing your story. It gives me comfort knowing that there are positives in such a negative situation.

Lbloom:

Oh no! What a difficult thing to be facing. My baby was stillborn but we didn't know it. She had a heartbeat when we went into the ER. They took her emergency c-section but it wasn't soon enough. Her umbilical cord was hyper-coiled. It was a complete shock to us that we didn't get to bring her home.

Her funeral was just last week. It was physically exhausting to make all the arrangements and I was still recovering from the surgery. I don't know how I would've done it without my mom or husband. I feel like they made most of the calls and I just sat there like a hopeless lump. I made a lot of the important decisions, though. No parent should have to plan their child's funeral, it's so sad and unfair. We feel so instantly aged by all this.

I agree about the photos and mementos. We treasure and kept many things, the outfits the nursing staff bought for her, the pink quilt they wrapped her in, the teddy bear in her flower arrangements. The nursing staff called in a photographer for us, they were amazing. She came at 1am and took 300 photos of us. We blew up and framed some of the photos for the viewing which took place right before her service. We played a slide-show DVD at the luncheon afterward. An employee of the funeral home commented that her's was the most touching and tender funeral service he'd ever attended in all his years. He said she was just beautiful and he was genuinely touched. I'm glad we honored her so well. The photos will always be treasured. We just watched the slide-show this morning and were comparing her features to some of our newborn photos - deciding what features she had inherited from whom. It was nice. This morning was better than the last two, let's just say that.

I pray for strength for you in the coming days. I know it is of little comfort, but I hope we all find comfort and peace again in time.

Auki13 · July 2011

I was trying to reply to everyone individually but I am going to finish off here...

Thank you everyone for the kind words and support. I am just happy to share my baby girl with all of you. She deserves to be known and cared for, just as everyone of your babies deserves. It is sooo unfair that there are so many little ones that leave this earth much too soon.

I wrote above that there is a procedure to remove accessive fluid, but I never consitered it before because of the risks involved. At this point though, I am going to speak to my nurse midwife about getting it done, because I can barely make it through the day. I have also spoken to my husband about an earlier induction (if the amnio draining doesn't work) and we are definitely considering it, but having to chose my own baby's date of birth and death seems so difficult to me. I am just hoping she comes into this world on her own sooner than later. Though I am realistic and know in my situation some women never even go into labor, so we will have to think about an induction.

I will keep everyone updated and let you know how my appointment goes on Tuesday. Thanks again for all the support, you are are all in my thoughts and prayers...

JessMike07 · July 2011

I'm so so sorry for what you are going through. I can't even imagine!!!

During my previous times on here (as well as ttcal, pgal, pal) I met an inspiring woman such as yourself. Here is the link to her blog. Consider contacting her as well. You'll have to go back to her first posts when they had found her son was diagnosed w/ a fatal diagnosis.

https://sgirl79.blogspot.com/

Thinking of you!!!