Sunday, 19 January 2014

This much I know

Firstly, I want to thank you all for your patience and love and support. The many comments and emails I received this week, even if it was only to say 'thinking of you' have made me feel so cared for, and more importantly, that little seedling has an awful big cheering section in our corner.

I'm sorry if I left you all hanging after my little cri de coeur; I needed time to breath out the fear, breath in hope again and collect my thoughts. I wish I could come here today with more optimistic or conclusive news to share. I really do.

The good news is, little seedling almost certainly does not have Downs syndrome. The bad news is that the reason we can be 99% sure of that is because the doctor found a brain anomaly which is generally inconsistent with Downs. Brain anomaly: the words alone were enough to send us into a fucking unbearable, terrorized tailspin. Usually when you hear those words, I think of them as associated with  another phrase: incompatible with life. I have supported enough other moms through this awful scenario not to let my brain go there. I know too much.

But this time, we are lucky; the condition is not life threatening. Little seedling has been diagnosed with fetal ventriculomegaly, in which the lateral ventricles of the brain are enlarged. The condition effects approximately 1 in 1000 otherwise healthy pregnancies, and there is no known cause (in our case, let's chalk it up to shitty random universe speak: these people haven't had quite enough drama yet in making a baby, and anyway <disinterested shrug>, we know they can take it. Keep piling!). Depending on its progression throughout pregnancy, ventriculomegaly can be linked to a whole range of developmental complications before and after birth or...it might mean nothing. There is so little to go on right now, and we were told the next eight weeks will be crucial.

We have a new plan of action, as this pregnancy is ratcheted up from high to high high risk. Tomorrow, before the first rays of the new day dawn, we will awake and travel more than three hours to a specialist centre where a fetal MRI can be performed. This will, it is hoped, give a clearer picture of what else is going on in little seedling's brain. So far, everything else looks normal, which is a really good sign: it puts us on the 'mild' end of the spectrum for this amorphous diagnosis. In fact, all the other organs, according to the geneticist, looked 'perfect'. If things stay this way, we very likely have nothing to worry about. The ventricles could even shrink back to a normal size and the situation resolve itself before birth. Or they could get worse, in which case our cause for concern would be that much greater.

After the MRI we will be followed with bi-weekly brain scans and anatomy u/s; more regular appointments with the geneticist as well as Dr B. All this monitoring is a double-edged sword though. On the one hand, it is of course a great reassurance to know that little seedling is getting the best possible care (and our care team really is stellar) and that this is being treated as the sensitive and emergent issue that it is. At the same time, there is no denying that, well, each u/s appointment, aside from the thrill of seeing little seedling thriving away in there, is a slow and tortuous build-up to the next scary thing. Given my history, I have so much ultrasound PTSD that I don't sleep for days beforehand, and on the day of I feel like I'm going to puke until the very moment when they place the probe on my belly and I see that comforting and still unbelievable movement. Continuing to do this every other week for the foreseeable future? Demanding and exhausting, to say the least. Really, just at a time when we were beginning to think that the high risk monitoring, all the feelings of pregnancy being more scary than natural for us would be replaced by some semblance of routine (ha!), we're thrown from the proverbial frying pan into the fire. The painful irony of preparing for one piece of bad news only to be blindsided by a potentially dangerous not-that-but-this scenario is, well...it is what it is. Scary, still confusing, tortuous, vague, fucking frustrating, maybe nothing.

As I was swimming through the sea of information, research, prognoses, opinion, struggling to keep my head above water and trying not to swallow big gulps of fear, I clung to these two things: not life threatening, and not life limiting. We know so little else. I could spout all the odds and statistics and case studies that the doctor barraged us with, but the end game is always the same: wait and see. Little seedling could be perfectly unaffected by the condition in the long run or might need medical intervention even before birth. We could be looking at a child with zero special needs or almost undetectable ones or those that require lifelong therapeutic assessment and intervention. So so many uncertainties. The waiting and wondering is a special, harrowing kind of agony.

But this much I know.

We are so so lucky. We are grateful beyond measure for each and every day with this little seedling, who wriggles and squirms with an astonishing aliveness that both keeps H and I in the blessed present and thwarts all attempts on the part of doctors to monitor progress, as though possessing a well developed sense of mischief along with her mother's inherent mistrust of white-coated authority.

She is a feisty, strong-willed, courageous, opinionated, unique, determined and stubborn seedling, this tiny girl of ours.

So yes, H's fatherly instinct and the kindly Austrian doctor's educated guess were correct. We are having a little girl. She'll be a barricade stormer, this one, said H, jesting at her unorthodox trajectory, her unwillingness to either cooperate with expectations or relinquish her claim as anything but the central role in our consciousness.

We're in for a ride. We're not really prepared for it, for any of it. But we'll take it.

And this much I know: we are having a little girl. S will have a little sister. We are so very fortunate to have the little unorthodox family that we do. Every day matters. Nothing is certain. And we couldn't possibly be more in love. Nothing changes that.

Girls with attitude. Source
 

26 comments:

  1. I am glad you have answers, but so sorry the only answer is to wait and see. Sending positive thoughts and hope.

    Congratulations on confirming seedling is a girl. She is a definitely a fighter, just like you.

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  2. Oh Sadie, I have been thinking of you and family. I am so sorry for all the stress you and H are under. The last thing you need is more stress. I am so glad to hear that you are focusing on hope and the positives... I will be cheering you all on for continued good news.

    Also, somehow I missed that you are having a girl when you first announced it! Congrats! Us too! xo

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  3. Sadie, I'm glad that your daughter doesn't have DS, but am so sorry for the blind-sided outcome of your anatomy scan. As much as it stinks, hopefully the stress of the frequent u/s is just another hurdle and obstacle that needs to be waded through to bring home S's little sister, happy and healthy. Continuing to hold you all in my thoughts.

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  4. I've been checking every day to see an update. First, congratulations on having a little GIRL! :D I teared up when I read that. I'm so happy for you and H :) As for the fetal ventriculomegaly, you know I will be praying that all this turns out to have no effect on your little girl in the long run. I hope with all my heart that this will be a case where everything resolves itself without causing further anxiety. I am so sorry that you had to be hit with yet another scary turn of events after all you have been through. You are handling this with courage and beauty, and I believe in my heart that all will be well (remember that song?). Love and hugs to you.

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  5. A girl!!!! Congratulations! I'm sorry that you are dealing with a high risk pregnancy. I'll keep you guys in my thoughts and send positive ones for the MRI tomorrow. Congrats on your Girl!

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  6. I was so hoping that this scan would bring you nothing but relief from anxious waiting. To get this news instead ... it's ironic and exasperating, to say the least. It's also great to hear that her condition seems mild and that an early diagnosis will help her get the best treatment possible.

    "Her" -- so you're having a little girl! I'm thrilled for your family and sending many good wishes for tomorrow and the weeks ahead.

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  7. Congratulations on your little girl! I'm sorry this u/s left you with more uncertainty, but I hope the MRI and frequent monitoring will show improvement with each appointment. Your daughter is strong, and she's a fighter!

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  8. The positives here are so strong - first, you are having a little girl!! She can now become a person in your mind. So exciting. Two - they have ruled out other, lifelong, difficult disorders. All that being said, I really can't imagine what you're going through. I came out of lurkerdom to let you know I'm thinking of you.

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  9. I am rooting so hard for your daughter, and you. You've been in my thoughts to no end this weekend. I pray that this agony, too, will pass. <3

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  10. Sending hugs and hopes to all but especially to that feisty, beautiful daughter

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  11. I am so sorry that the next weeks of this pregnancy will be stressful for you and your family. Sending hugs to you through the internet. I am right beside you in spirit cheering on your strong, beautiful daughter in the next few weeks.

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  12. I feel so awful that you have had so much stress this pregnancy, over and above baby loss Mom stress which is more than enough. I'm so glad your little girl doesn't have downs, and I'm hoping that this brain abnormality turns out to be nothing that will affect her quality of life. I have great hopes and I believe that it won't.

    My best friend was pregnant with her second rainbow baby. At the 20 week scan, they saw that her ventricles were enlarged and ultimately diagnosed her as having Dandy-Walker syndrome. They said her vermis was missing altogether. My friend got second and third opinions and some were recommending that she terminate. But ultimately she decided not too. She continued to have ultrasounds and an MRI and they all said the same thing….no vermis but her ventricles were shrinking so she wouldn't need a shunt after all.

    After 4 months of worry, the baby was born and had an MRI within an hour or two of birth. Her brain is totally normal. The vermis is completely there, ventricles are fine. It makes us sick to imagine what possible could have happened.

    I debated on telling that story because I know what it's like to have some bad news and someone give you a story of a happy ending and you wonder if it will happen for you and you waver back and forth (that's how it was for me anyway). But reading this post reminded me so much of what my friend went through and she was given very little hope for her baby, much less than you have been given. I'm just hoping, hoping, hoping.

    I'm so excited you are having a girl. I can't wait to find out what her name will be, and even better, to see her!

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  13. I am so sorry you are having to deal with this uncertainty. So glad to hear it may turn out to be a non-issue, though. Hopefully, you continue to get more reassuring news at each ultrasound.
    Also, congrats on a girl!!

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  14. Oh, Sadie, I'm so sorry for all the stress and fear this has brought on you. I'm thinking of you today and will be the coming months. Why oh why can't it be easy and straight-forward when you have been through so much already! Thank goodness it isn't a life threatening diagnosis and that there's a chance of it resolving itself in the end. The unknown must be so so hard to deal with. I'm rooting for you and your little girl. A girl, how exciting to know that! Sending hugs and strength.

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  15. I am so sorry that you are dealing with this stress and uncertainty! You guys are so tough, but I wish you didnt have to continue to be tested like this! I will be thinking of you often1

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  16. I'm thinking of you and hoping that everything is going to be just fine with your little girl. She's so lucky to have you and H for her parents. And I hear you on the PTSD over ultrasound scans. I love seeing the bun, but otherwise I hate and dread them.

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  17. Just want you to know I'm thinking of you. I can't imagine what you're going through... the uncertainty, the stress, the worry. It sounds so awful. But I'm also glad to hear that you (and your dear daughter!) have the very best care, and that you'll be able to keep track of her progress as she grows. Wishing nothing but the best outcome for all three of you. You are so strong! You can get through this, I just know it.

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  18. Sadie, love you girl and love your little girl growing inside you. It's such a scary place to be. The not knowing. The facing of each ultrasound from here on. You and H are incredibly brave. And little baby is such a fighter. I am thinking of you and hoping for the best for you.

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  19. I'm sorry this is so stressful for you. All the waiting must be so hard. You are so strong, and we're all thinking good thoughts for you and your little girl!

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  20. The stress never ends, does it? I'm sorry you're dealing with this. But so, so happy that you have a thriving little girl in there! I did a little Googling, and it seems like this could be something that clears itself up before birth. I know I've read a lot of stories like that-- I'm hoping yours is one too. Whatever happens, she will be beautiful and very, very loved. Thinking of you & hoping all goes well with the MRI.

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  21. This post is so bittersweet! However, I want to focus on the sweet first. A little girl! How wonderful. This girl is a fighter for certain. As for the bitter, at least you have a diagnosis and an action plan. I can only imagine the torture, the sleepless nights before an U/S. The very idea that you have to suffer even one more day makes me weepy over the cruel nature of life. But, in order to be a good friend to you, I want to say-You can do this! I believe in you and I believe in your little girl. It's going to suck and have its beautiful moments, but you got this, girlfriend!

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  22. Sadie, my love, I hope so very much that you get some good news soon. And, a girl! No wonder, she is sassy and smart and a survivor, just like her mama. Love you both x

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  23. Visiting from LFCA. I can't imagine how scary this all is for you. I can relate to the ultrasound PTSD and felt that way before every ultrasound as well. Hoping your little girl has he mildest form of this condition.

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  24. Here from LFCA. I'm so sorry for the hard diagnosis, although happy to hear of a little sweet girl. Hoping for the best possible outcome for you all this time. Sending you big hugs in this time when so much is uncertain.

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  25. Here from LFCA. My heart is full for you. I too am a cancer survivor (ovarian), went tthrough multiple IVFs before becoming pregnant and then learned at our 20 week anatomy scan that our son had a potentially fatal heart defect that would require open heart surgery within days of his birth as well as ongoing medical treatment. Four years later, I can still remember the alternating shock, numbness, despair, and even at times slivers of hope in the days and months after we first heard those words. There are no perfect words in this situation, so I offer a Swedish phrase Kraft och Omtanke which loosely translated means strength and consideration.

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  26. I am in love with your description of your little seedling. You are carrying an amazing strong girl! XO

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