Sunday, 6 April 2014

An update, more scans and a change of plans


Well, insofar as we ever had a plan anyway, and if you consider a ‘plan’ to be: having gotten pregnant, hope and pray to all the gods of fertility that baby grows and stays; deliver baby on or near due date.

For us, June 4th was meant to be the magic number. I had even fully convinced myself – in flagrant disregard of just how many unforeseen loops this whole journey has thrown us – that we had something like eight weeks still to plan and prepare and freak out a little at the massive, mind-bending, life altering change-in-the-form-of-tiny-human that is about to befall us.

We won’t be making it that far, it seems, or anywhere near, unless we’re very lucky.

But let me backtrack a bit.

This week has been a big one for us, full of important milestones passed and happy news in the world of little seedling’s development. First and foremost, her ventricles seem to have stabilised at their slightly reduced measurements, and after 30 weeks they tend to feel that those measurements are likely to hold steady. So we’ve kind of allowed ourselves to exhale on that one. Then, at our request (because our medical team is thoughtful and awesome and takes our concerns seriously), we were sent to another city and another clinic to undergo a fetal echocardiogram. Strictly as a precaution; 40% of Down syndrome babes experience some kind of heart abnormality, and this is by far the scariest and most sever complication that comes with a diagnosis. I can happily report that the cardiologist saw what looks like a normal heart and no cause for concern, though further tests will be carried out on little seedling’s arrival. Yay for happy news on scans!

But because this is life, and ours never seems to want to sail a straight course, opting instead for the adventure and uncertainty (and because, well, every baby comes when it damned well pleases and isn’t that just a part of the crazy euphoric, terrifying adventure?) that comes with really being alive, there are some new logistical issues to navigate.

My amniotic fluid levels are stable for the moment, but it’s something they want to keep a close eye on, given the risk of preterm labour. And on our u/s, we learned that the diastolic flow through the umbilicus is reducing. This is not entirely a surprise, as we know that with a Down syndrome pregnancy, the placenta carries the same trisomy, and therefore a likelihood of placental insufficiency at some point. We were kind of prepared. And yet, we were spectacularly unprepared, in the sense that I hadn’t thought, not seriously, about what it might mean. As in, like, delivery only weeks away.

We’re at 31w4d now, and the new goal is to make it to 36 weeks. June 4th will certainly not be our magic number, but as long as she gets here safe and grows healthy, everything else is frills, really. There will be an upsurge in the monitoring from here on in, probably every other day, just to keep a close eye on the flow within the umbilical cord and make sure she’s getting all the nutrients she needs. She’s always been a tiny one, measuring on the bottom end of normal range since about 22weeks, (while I’ve had trouble gaining weight myself) and I so want her to be in the best possible shape to face and overcome all the challenges she has in store. Our medical team don’t seem worried about the possible medical implications of a delivery in the coming weeks, since her progression in terms of weight gain has been steady, and I have a lot of trust in them, so I’m trying not to panic either.

Still, suddenly it feels there is a lot to do and arrange (the practicalities of which are also huge, and warrant a post of their own, soon to follow). I think we just lost approximately four weeks of processing time, and as anxious as we are to meet her, our heads are spinning as we try to take in yet more new twists and turns. A month from now...I can’t even finish that sentence, not yet. The possibilities are scary and exciting and unknowable. And I'm trying my best to trust in the process, to trust in our caregivers, trust in her, in my own body. Deep breathes.


The technicolour, lighting speed future awaits

15 comments:

  1. So glad that your medical team is increasing the monitoring to make sure that everyone involved stays safe!!! As for losing 4 weeks of prep time, just take one breath at a time. No matter how prepared you feel you are before she gets here, it will still feel overwhelming, so as long as she has clothes, a place to sleep and a safe way to get her home, you're all good.

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  2. I'm glad they are monitoring everything so closely and can do what's best for seedling. I'm sorry that the good news is always paired with some bad though. Take a deep breath (*hugs*) You're doing great, and there is still plenty of time to prepare- they don't need much in the beginning.

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  3. Agree with above comment, it sounds like they are keeping a close eye on things and that's awesome...rooting for you, and for your sweet baby girl, as always.

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  4. Yay for a normal heart. :) It sounds like you're in good hands. I will be thinking of you for these up coming weeks.

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  5. Well if it's of any relief, our Yu was always on the lower weight side of the "normal" growth sides, and now she is growing fast and steady. With her corrected-age weight (that is, considering her due date as her birth date), she is even above the average right now.

    As you know Yu was born at 33 wk 4 days, with my waters breaking at exactly 33 wk, if you have any questions do let me know. The first month was hard (still have to find the time to write the full story), with pumping that made me as tired as I'd never been before (only comparable to constant jetlag), and being apart from our baby. But time passed so fast. And medical professionals are really angels.

    I am so glad to hear about her scan! Thinking of you.

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  6. Happy for a normal heart and so glad you are being monitored closely! It's time to get ready for baby! Eek!!

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  7. So glad you and seedling continue to be in such good hands! I don't know at what point you start to feel ready for little one's arrival. I'm still not there yet!

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  8. It sounds scary, but I know you can do this. I am so glad to hear that you are getting so much attention from doctors, techs, etc. I cannot believe your daughter will be here in a month! Take good care and know I am thinking of you. Thanks for the update too.

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  9. You amaze me in your wise and centered approach to all of the news that keeps getting thrown at you. But, in the long run, when she gets here, her life will start and yours will change, whether you're ready or not. So much better to be wise and accepting about it! So glad you have a good team and so happy to hear the good news about her heart. Keep posting!

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  10. I'm sure it was scary to feel like you just lost a month of time you were planning on having to prepare pre-baby, but such good news on her little heart! Keeping taking it a day at a time. Thinking of you!

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  11. Great news about her heart! It's amazing (and I'm sure terrifying) to think that she will be here so soon. Thinking of you and hoping for a safe delivery and healthy little girl.

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  12. Way to go, heart! That's wonderful. But I can't imagine having the rug pulled out, so to speak, and suddenly everything is wooshing toward you faster. Sending you strength.

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  13. So, so happy to hear about a healthy looking heart. That has to be such a relief, yea for good news! Sorry that little girl is coming sooner than you hoped, but sounds like your medical team is on top of things. Sending good energy your way

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  14. I don't know if you ever can be fully prepared for meeting your baby and all that follows! I'm really glad you are in such good hands with close monitoring. Thinking of you xx

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  15. just wanted to say "hello" from a past-ICLW-er (found your blog on StirrupQueens).
    I have read from the beginning (or from this blog's beginning - I'm so very sorry for the loss of Baby S).
    I love your style of writing, and all the things you have to write about. I wish you strength, happiness & peace in (what may be tumultuous) upcoming weeks and months!

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