Tuesday, February 12, 2013

what is it that i really want to say?

I want to speak up to my friends here. I just can't keep quiet any longer.
I am pregnant with baby #2. I am 11 weeks.

Valentine's Day is coming and i've decided that it will be the day that i will announce this baby.
What better day then the national holiday of celebrating love? and this is love at it's finest.

My children.
Still getting use to that.
"My two children."

I've been trying to figure out what it is that i actually want to say to the public of people who don't already know.

How can i possibly explain to them that this is both one of the best things that has ever happened to us but doesn't mean it's our happy ending? because we won't ever have a happy ending if Truman isn't with us no matter how much better things get.
That we are overwhelmed with gratitude and hope but still living with "little c" antibody and pre-eclampsia and prematurity threats?
How do i politely say that i want them to understand where we are coming from even though half of the time i don't even know where i am coming from? half of the time i am bitter as hell that so many of these people are completely and utterly clueless about how complex and far reaching a loss like this is?
How do i tell people who are willing good news from me that we have another obstacle to overcome that ups my chances of miscarriage, stillbirth and neonatal death without them perceiving me as pathetically hexed?
It's not that i really even care what they think but all of this is sort of ridiculous, i know that, i'm living it. It's fucked up.
How do i get them to understand that there is no amount of organic food or holistic healing and pH balancing or yoga poses that can change my outcomes? How can i make them understand that this isn't on me, that i shouldn't be blamed.
I illogically feel like maybe i am to blame.
maybe i was a horrible person in a past life. maybe i was a horrible person in this one.

What i am truly surprised about is the amount of guilt that this pregnancy has brought up in me. I feel racked with guilt 98% of the time.
and i'm just trying to make sense of this all and find a way of living with it.
because i'm not sure how its going to possibly go away.

I am lucky to have experienced many rainbow babies enter the world through this community and i have watched you all and read along and observed how you have handled it... of course all similar yet all very different in many ways. Either way it's helpful for my level of hope.
I've continued to blog through out this, just never posting my posts... i'll go back now and post them so you guys are in the loop. It's bee hard keeping this quiet when you are a support system to me.

Maybe I'll say something like this? (working this out as i type)

"Truman paved the way. He showed us what heart swelling, ground shaking, ear ringing, gut wrenching love really feels like... the love a parent has for their child. The purest form. We hold him in our heart and miss him every second of everyday.

Today we want to announce that Truman's sibling is on their way. I hold this little one in my body hoping with every inch of me that this works out.

We are grateful to be able to share this news with you but the worry is not over yet. Things have developed along the way... unfortunately things way out of our control, yet again.
Our road has been a long one and even though i tried to prepare in every way possible and even had a false diagnosis of anti-phospholipid syndrome and got the go ahead from the medical team to try to conceive, things have happened.
When i was in surgery with Truman, i lost a lot of blood and needed a transfusion in order to survive.
Out of all the blood that i could have received- my blood donor had an antibody in their blood called the "little c" antibody.
From what i understand this is not a common occurrence at all.
Out of all of the antibodies that we could have got "little c" is the possibly very aggressive one that attacks the baby's blood cells until the baby goes into heart failure if titer levels reach a certain point. I have no control whatsoever on the rise of these antibodies.
We found out at 8 weeks along in this pregnancy. Some of you may remember me asking for positive vibes then.... we will continue to need them.
We needed Jeff's antigens in his blood to test negative for this to not be a big deal.... it tested positive. Not the best news but luckily for now my titer levels are low and we want them to stay low(....forever because this will effect all pregnancies that i have from here on out.)
My blood will be tested every few weeks to monitor if the levels rise. This is very stressful. Not because we are worry-warts but because we merely want an alive and healthy child.
Every week is a gift. If things get worse they will start to do intrauterine blood transfusions to try to keep the baby alive.... to me, it sounds like an absolute nightmare/ horror story but i will do anything for this child. Obviously, these measures that will possibly help the baby also involve risk that could end up killing it.
No matter the titer results, this will always be a concern for us in this pregnancy and any other pregnancy... this will never go away and be nothing to worry about.
and we are sad that we had to let go of the thought of having an easier pregnancy then what we had with Truman.
It's just flat out bad luck.
I just want to point out that sometimes people have bad things happen to them and it doesn't make them a leech upon society or not a hard worker or a victim or someone who deserves bad things because they made bad decisions.... it's just life. and ANYONE is susceptible to these unfortunate things, no one is immune. Whether we deserve it or not, this is happening to us. No matter what people think about us and how we handle these stressors, we are the ones living with it and fighting, every single day since July 24, 2011 when my pre-eclampsia started with Truman.

This threat of the little c antibody along with the threat of pre-eclampsia, placental abruption, IUGR and pre-maturity returning means that we are not even close to out of the woods yet... we are taking this step by step and hoping for the best. Taking it moment by moment and dealing with the different feelings as they bubble up. Pregnancy after the loss of a child isn't easy no matter who you are and no matter what you are facing.

I am and have been in constant contact with the specialists at UCSF, the perinatologists that helped us with Truman, and they assured me that they have dealt with issues like mine in the past. I believe at this point i will need to move down to San Fran to be closer to them. The financial and emotional stressors are worth it if we get a healthy and happy baby out of it.

We are thankful for this child every single day that it is with us whether it's for one more day or the next 60 years. We are thankful for Barack Obama who made this child even an option. We are thankful for those of you who voted for Obama and support Pre-existing Condition Insurance Plans- Obamacare. We are thankful to our friends and family who continue to walk this path with us no matter how happy, sad or complex it is.

I wish that this announcement was a typical one that didn't need a 5 page explanation but things are no longer like that in our world. The innocence of getting pregnant and thinking "everything will be fine if i do everything by the book because that's just the way the world works," is completely gone.... but our hope and gratitude isn't and i hope that means something. While we very much appreciate any well wishes and congratulations i do not want to hear "I know everything will work out just fine."
I heard it when i was sick with Truman and the facts are, no one knows how this will work out and I'd rather not pretend to know. We will deal with reality as it unfolds.
We have an added player in the mix with this antibody. Another odd to fight.... so unless you are a Perinatologist, I'd rather not hear what other people think is going to happen versus what is really happening. But we lovingly appreciate any positive vibes, prayers, or well wishes.
Right now things appear to be good and so we will hold on to that - the present moment. We are cautiously optimistic.

This child in no way replaces Truman. This is Truman's sibling, our second child, my second pregnancy. In the child-loss world, any child after the loss of a child is a called a "rainbow baby". The rainbow doesn't mean that the joys of having Truman and the pain/storm of losing him never happened or is "over" in any way. Our rainbow is joyous and hopeful light that we hope stays with us for a lifetime. I want people to understand completely that these are two different human beings and one does not negate the other.

We love Truman and this baby to the end of time, no matter the outcome.
:) and that's what life is all about- Family, Tru love, pursuing your dreams,  and taking risks so that maybe just maybe your dreams can come true."


.......Way too long winded. even baby announcements are complex/complicated!

How about: "I'm pregnant. more shitty stuff happened. you don't get it at all because you don't have a dead child and a body that is back stabbing bitch." ?

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9 comments:

  1. Oh, Laura, my heart is so full here for you<3 I am cautiously optimistic as well, and will celebrate with you every single day you have Truman's little brother or sister with you. Holding you all in my thoughts and prayers <3

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  2. Oh wow! SO many emotions, but I must congratulate you--for so many reasons. Wishing you strength, health, courage and lots of love. I'll be holding your hand every step, friend. You can do it.
    xoxo

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  3. That last bit. Yup. That's a pretty good way of saying it. :-)

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  4. Hey Laura! I just read through your post after seeing your comment on my blog earlier today...I am so, so sorry that you have this on top of the other complications! I know I was totally caught off guard, heck, I had never even heard of an antigen before finding out that I have two of them. We've been working through a lot of the same emotions on our end...not only because of what it means for this pregnancy but knowing that I will always have them & that they will always be a factor in any pregnancies from here on out. It has been tough news to swallow, especially since there is nothing that I can do to change it, make it better, or keep the baby safe...except pray. And I will be praying for you these next few months - both for the pre-ecclampsia and that your titres stay so low that the "c" will not harm your precious little baby!

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    Replies
    1. Thank you Bethany! I will be sending them right back to you and your little one. i hope we both can make it through with no complications. <3

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  5. Oh, Laura Beck

    i
    will
    be
    holding
    my
    heart
    in
    a
    fist tight clenched

    until
    until
    until

    life unfolds and I see
    what I so hope to see
    that it
    can be kind
    even
    though sometimes
    so
    insanely

    cruel.

    I hope you don't mind my praying.
    I can't help it.

    And that does NOT make it all better.

    NO IT DOES NOT.

    I wish.

    xoxo Truman xoxo

    Pulling for you and remembering your Truman always,

    CiM

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  6. What wonderful news! Holding you and your babies in my heart and praying that Truman's little sibling keeps growing bigger and stronger. xoxo

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  7. Thank you for the support friends <3

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  8. "and that's what life is all about- Family, Tru love, pursuing your dreams, and taking risks so that maybe just maybe your dreams can come true." I love this Laura. So, so true. Thinking of you, big brother Truman, and baby brother or sister growing inside. xx

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