Baby Lost - Heart Broken (Factor V Leiden responsible)

Sometimes i feel like writing a few things in here, again there is no need to reply.

Well it has been 4 months today since my precious Katelyn was born. It still hurts so much and i have come to accept that it always will. The time seems to have gone so fast yet everyday is filled with thoughts of her.

Her due date is approaching next month which is also hard.

I think that the memorial service that we are having in mid august (before her due date) will be a big help. Although it wont make anything easier it will still let us both grieve for her in an organised setting.

I think that this is such a hard thing to go through, i honestly think that she knows how i feel and how much i love her and that we will meet again. Like i have said before i cant say goodbye to her because this cant be the end.

Love Sarah

Sarah,

I know you said that there was no need to reply to your post, but I really wanted to, so I hope that's ok.

I just wanted you to know that I'm thinking of you and sending you lots of big squishy cyber hugs for today and the next month. It must be such a hard time for you.

Katelyn will always have such a special place in your heart and you're right - being PG again doesn't make the loss any less or take the feelings away. Anniversaries are such tough times, but like you said, I'm sure that she does know how you feel and how very much you love her.

Again, I hope you don't mind my replying to your post....I just really wanted you to know that I'm thinking of you. I'm glad that you still use this thread when you feel the need too - it's really good therapy to get all your feelings out in the open.

Thinking of you............

Of course i dont mind you replying Tootie, I just didnt want anyone to feel like they had too, like you said it is just away for me to keep in touch with my feelings and get them out in the open.

Thanks for what you said though, i know you have had some anniversarys this month also so i hope you are feeling ok about those. Big hugs back.

Love Sarah

Just wanted to say that we went to a memorial organised by the chaplain at the hospital for Katelyn on Saturday.

It was for all the families that had had someone pass away around the time that Katelyn was born.

It was very emotional for both Rowan and I, especially when they read out her name and we had to go up and collect some rosemary, lavender and tea tree that they had bundled together with Katelyn's name on it.

Even though it was really hard i also feel that it was quite healing to go and express the loss that we feel in a formal manner.

I really think that it was quite good timing because Katelyn's due date is coming up really soon and i have been feeling very upset about her all the time. I am always upset about her but i am finding this time particularly hard.

Afterwards they put on a light lunch upstairs and we got to talk to a fair amount of people, which was good because they understood more than some of our friends what we are going through losing Katelyn.

We also spoke to another young couple who had lost their baby ashleigh at 21 weeks a few months after we had lost Katelyn. The circumstances are quite similar which was a bit scary but they didnt find any results with their tests whereas we found out about the FVL clotting disorder.

What really shook me up though was that even though they have 2 daughters this was the second baby that they had lost under these circumstances. Late last year they lost a son at 19 weeks.

Rowan and i were talking about our new baby on the way over to the hospital and how we thought that it just couldnt happen again we couldnt be that unlucky. And then we were smacked in the face by living proof that it can happen twice. I know that i am on the Clexane to stop the over clotting (which they were not) but i am still absoutely packing myself at the thought that this could happen again. One positive i suppose is that they have the same OB as us so he had experience with this type of thing although i guess it proves that he cant stop it.

Right so i am trying to think of the positives at the moment but it is pretty hard.

Love Sarah

Oh Sarah, big hugs matey. I can only begin to imagine how hard it was to go to the ceremony, but I'm so very glad that you found it healing and soothing IYKWIM? It's fantastic that the hospital had organised it too - it's such an important thing to grieve and I just think it's great that the hospital has acknowledged that and provided an outlet for people to grieve and to share their experiences with others in similar situations.

I know it must be very hard to feel positive when you were confronted with the other couple who have lost 2 babies - I just can't believe how awful that is, truly. That poor family. I'm not sure I can say anything to really ease your fears, except to tell you that it's only natural to worry and to have doubts and they are often compounded when you are confronted by this kind of situation. I guess all you can do is just take heart in the fact that something was found in your tests and that you are doing EVERYTHING you can to take care of yourself and to manage the condition with your OB.

Thinking of you....

My friends just brought their new baby boy in.

It is the first time that the mum has seen me or spoken to me since we lost Katelyn and it was to show me her new baby.

I miss Katelyn so much.

Now i am in my office with the door shut because i just cant stop the tears.......

Love Sarah

Oh Sarah, you poor chook. You've really had a harrowing time lately and I really feel for you. I can only imagine how hard that must have been for you, particularly now when you are going through so much stress with Katelyn's EDD just around the corner and worrying about your little one and injections and the works!

Just know that I'm thinking of you...

Thanks Tootie,

You are always there for me and i really really appreciate that.

Love Sarah

Hi Sarah

I just replied to your email but then I came in here & saw your last post.

That must have been so difficult for you, seeing your friends & their baby.

I am another one who is thinking of you and I am sending you so many hugs.

Love

Thanks Bec,

You dont know how much that means right now.

Love Sarah

Sarah- we went to a memorial for people who had lost children or babies. It was really special and DH and I balled out eyes out the whole way through. DH doesn't cry much so it was so good to have some kind of process or structure that allow him to grieve. I think it is so good that they run such things. It is really challenging to face another pregnancy. I think it is very scary as we know all too well that things can go wrong. There is nothing I can say to make that fear go away, there is nothing that makes my own fear go away. But boy, won't our little ones be special when they come to us! I know that everything will be worth it when we can hold a healthy little one in our arms. I know that on some level you believe this can happen or you wouldn't even be embarking on this journey again. Wishing you mountains of strength and lots of love, and know that if you need a shoulder for support or a listening ear we will be around.

Dear Meg,

Thanks for that matie, i remember you saying awhile ago that you had been to a memorial. Ours wasnt designed soley for babies but it was still quite a constructive environment. Thanks for the support, i know that you are right and both our babies will be absolutely fine, its just that i have a little voice sometimes that says what if it is not.............i am learning to deal with the stress ATM and think that i am going as well as i can at this point.

I cant wait to hear about your u/s. Very exciting.

Love Sarah

Sarah,

Will be thinking of you tomorrow & remembering Katelyn with you.

:hugs: :hugs:

Love

Thanks Bec,

It will be a hard day but i means alot that other people are thinking of her.

Love Sarah

Well it is Katelyn's due date tomorrow and i just wanted to write here to say how i am feeling, there is no need to reply it is more for me to try and get my head into some sort of order.

I am feeling very teary today and not really wanting to talk to anyone about anything in general, i feel as though i just want to go and hide under a big rock. I have found it difficult in the last week because it has been very much in my face about where my life should be now and where it actually is.

Rowan is taking the day off with me tomorrow so that we can celebrate Katelyn's day and her brief little life.

A few people have sent us cards to show that they remembered which is great and are just some more things that i can add into her memory box.

I feel quite strange at the moment because i feel as though i am on the edge of a cliff. Up until now it has always been well i should still be pregnant with my little girl and now i am on the edge of now i should be holding my Katelyn in my arms and caring for her the way that i had planned.

Will i be able to cope with this change? Everyone tells me that i will and that once tomorrow is over with it will be a little more closure for us. Im not so sure at this point i guess only time will tell.

Im actually so glad that i am pregnant again at this point in my grieving journey. Even though it doesnt make it any easier to cope with what happened to Katelyn it does make the future more bearable and brighter if that makes any sense.

If it is fine tomorrow we are going to start the tradition of a picnic for Katelyn's day which we are planning to continue forever with our future children as they come along. We might also go to the movies in the afternoon because this is something that we like to do when we were pregnant and the one thing that felt safe socially soon after we lost Katelyn. Because i have her ashes at home with us i will take her to both these things, i often take her to the movies just to feel that she is still with us and involved in our lives. I know that it probably sounds stupid but it is just our way of coping with her death.

Most days i look back on my memories of Katelyn and can smile about the fantastic things that she brought to our lives. She was our first baby and we had all our first experiences with her, the happy ultrasounds and loud heartbeats etc, she was and always will be the baby who made us parents. Just because we cant hold and care for our baby doesnt mean that she is no longer part of our family and our love for her will always live on in our hearts as will her memory.

Love Sarah

Hi Sarah

Have been thinking of you both and hope you are both alright. It must have been hard for you. I will never forget Katelyn she will always be remembered in my heart.

:hugs: :hugs: to you.

Hi Michelle,

Thanks for the lovely message, it means alot, it has been a really rough week but it was something that i had to face eventually i guess.

Rowan had the day off and we started doing a few things that we can make a family tradition and involve our future children in her day when they come along. So that is nice that we are developing ways in which to remember her in our family life forever. I feel like the things that we did are very constructive and will help soothe things over time when we have the familiarity of doing them every year on her two special days. We are planning to do the same thing on her birthday every year aswell.

Everyone had said to me that they have found closure in passing their due date but i am not sure how i am feeling about it at the moment. I do feel that it is a transition period because i should no longer be pregnant with her she should be in my arms now which is a very hard thing to face.

The one thing that i am grateful for is that we have her ashes with us. I can hold her and talk to her anytime i want which i have found a huge comfort. It makes me feel that she is still around us in some way other than in our hearts.

Also i have mentioned in several posts before about the significance of rainbows to me in the time after her death. Well it was an unusually sunshiny winters day on her due date and i did see a rainbow late in the afternoon, so i did take some comfort in that.

I really feel at this point that she understands exactly how Rowan and i feel about her and i feel that she knows everything that we want her to know. So i guess that i am heading to a more peaceful place with her memory although that is hard.

I read a quote the other day and it really hit home to me " Dont cry because its over, smile because it happened". I think that this sums up the place where i want to eventually be. I want to be able to remember the happy times that we had and the chance that we got to be her parents is nothing that i would ever take away. I would go through all this pain again just to have her in our lives for those 18 weeks. She is such a special little baby to us and will always remain that way.

I have really struggled with this time and of course it is making me overanxious about the new baby as we reached the 12 week mark yesterday. Also another thing that hadnt occured to me is that we will be heading to the 18 week mark around the time of her 6 month anniversary of her death so i really think that the next couple of months are going to be very hard to face both because of Katelyn and because of the fear that i have surrounding the 18 week mark. I know that i am doing everything that i can, and the doctors are doing everything they can and i just need to believe that i am going to hold this new baby living and breathing in my arms.

Wow i only meant to write a short message and all this other stuff came out. Once again i send you a big hug and thanks for your message. I have been keeping up with your news in the TTC forum (i still come in and ready regularly even if i am not posting) and i really wish you lots of baby dust for that BFP real soon.

Love Sarah

Sarah,

How are you doing after last week?

Hi Bec,

Just sent you an email.

Love Sarah

hi folks,

This is the first time I've ever posted a message anywhere and it is really the first time I've ever looked onto one of these websites.

I read KAB's story from May 04 re her loss of her baby at 18wks. KAB seemed to benefit from sharing her story online and I'm hoping that I will too. I don't think I could feel any worse anyway.

I have lost 3 babies during first trimester. After my second loss I was told that I have Factor V Leiden and within 2 weeks I was spotting again in my 3rd pregnancy. I can't believe this is happening to me.

KAB talked about getting conflicting info from specialists etc, well I have had that as well. The problem seems to be that the Factor V Leiden gene has greater "strength" with some people than others, so some women with it will never have a miscarriage but for others (like me) it causes problems. I'm taking 100mg aspirin daily, 5000mg folate and with a positive preg test I'll start taking 40mg Clexane (heparin) by injection daily.

I'm not convinced though that it will work though cause with my last loss I started the Clexane at 8 wks and then had a huge bleed at 9 weeks.
I feel hopeless, helpless and lost. I don't know where I'm going in life....I have never felt that way before..........I have to keep going though.....tomorrow I probably won't feel so bad. Is there anyone out there with some stories of hope?

I'm really not a good person to bring hope at the moment. This post sounds so very much like my experience and pops up on Caitlyn's due date (freaky?? karma?? even the name of the baby!!) Maybe seeing it just helps me on this particular day. At least I know what I am feeling is normal.

Jen - I too have FVL and (if I manage to get pregnant again) I'll be starting on aspirin and clexane from about 8-12 weeks. I am not sure if it will work, but if it gives me the chance of getting a healthy baby at the end then I am going to give it a try.

Have you seen a haematologist?? I haven't but my OB is very comfortable in managing my FVL in the next pregnancy. I have heterozygous FVL which really means I have the gene from one parent rather than two (which would be homozygous). Homozygous FVL seems to give more complications and heterozygous usually doesn't pose any problems (my Mum had no problems with pregnancy but did get a DVT post C/S). HOWEVER :rolleyes: I am not uncomplicated, thus the need to treat me next time.

There are some beautiful stories of hope and the ladies here are gorgeous too (a better support group you could not wish for). I hope you find what you are looking for and rapidly get your hearts desire.

Michelle

Hi Jen and Michelle,

Its Sarah here, Bec77 told me about your posts under my Katelyn's thread and i wanted to reply to you both. Sorry it has taken me awhile to get here but i dont have access to a computer at home.

Firstly i wanted to say to you both that i am so sorry for the loss of your beautiful babies.

I also wanted to offer you both hope. I believe that Bec has told you that i now have a one year old daughter Lucy. I fell pregnant with Lucy again 10 weeks after losing Katelyn at 18 weeks. I took 100mg aspirin from the BFP and then at 7 weeks went onto 40mg of Clexane injections per day. It is really hard to make a decision as to which coarse of treatment to take because of the differing opinions from specialists. My doctors still ask me now which way i will go with the medication side of things next time, i tell them definately clexane from the BFP because without it i lost Katelyn and with it i had a healthy baby in Lucy.

Jen, I definately did benefit greatly from sharing my story about Katelyn, this is a wonderful group of ladies here who i have made long term friendships with. People in my life didnt understand what i was feeling as much as the people here so keep coming back. How are you and have you posted again?

Michelle, I didnt see a haematologist at any time, my OB was comfortable with that aswell. How are you doing after Caitlyn's due date ?(lovely name!) It is such a hard time and i feel for you.

I will be coming back in the next couple of days to check if you guys have been around but until then you are both in my thoughts and i am here if you need to talk things through.

Love Sarah

Great to see you back Sarah! I got your message! ;)

hi kab i to have factor 5 anytime you want to talk let me no
stacey

jen iam so sorry to here that i have factor v also and believe me things will look better
stacey