Monday, 17 March 2014

What happened in between


Thank you for all your beautiful comments on my last post; many brought tears to my eyes, and all gave me courage and strength and further insight into just how much I have to be appreciative of in these surreal and magical days in which we find ourselves. 28w5d here; so much is going on around us that I have to make an effort to focus on what’s going on inside me (both physically and philosophically), and to stay in this place of quiet bliss that is the third trimester of pregnancy and the wondrous growth of our little seedling. And on that score, things may even be settling a bit.

I know I have always been a staunch resistor of that normative trope that is the chronological timeline so beloved of infertility blogs, but in the interest of filling you in on some of the chaotic, complicated background to the here and now, it seems the least strenuous option...

Week 20 – Doctors rule out the possibility of Down syndrome after discovering in little seedling’s brain that the lateral ventricles are enlarged, an amorphous condition known as ventriculomegaly, which can be linked to a range of developmental delays and medical needs. Totally left field. We are confused and terrified. We’d happily take the knowable issue of Down syndrome over this vague diagnosis.

Week 21 – We are sent to the big city hospital for a fetal MRI with one of the country’s top specialists (who will later, for reasons to become apparent, become known as the Dickhead Doctor). This test shows a rapid increase in the levels of fluid accumulating in little seedlings ventricles, suggesting ‘a dynamic process of the condition I have never come across’. Dickhead doctor also says there are indicators of hydrops fetalis. Both conditions possibly fatal. The possibility of (need for?) termination is raised. Total devastation, rage, more terror.

Back home that weekend, we rush to the hospital after I wake up gushing red blood. Sure she is dying. Examinations reveal placental hematoma; not in any way life threatening. Unless you count the further palpitations that my already over-stretched heart cannot really take right now. Return home to a week of bedrest.     

Week 22 – The fetal medicine radiologist we’ve been seeing up until now (and who we’ve come to love) reviews the report sent by Dickhead Doctor and disagrees with his findings. Firstly, no evidence of hydrops fetalis, but rather a mild thickening of the nuchal fold which she sees as no cause for serious concern. Secondly and more importantly, although the ventricles remain enlarged, she doesn’t think there is anything to support the idea of a rapid increase; MRI and u/s will always have discrepancies in measurement, and in this instance, each method used a different side of the brain to reach their findings, reflecting not increase but asymmetry in the measurement of each ventricle. Obviously a fact that Dickhead Doctor, with all his years of expertise, should have also know and offered, instead of regaling us with horror stories.

But relief if momentary; u/s with Lovely Doctor finds that the connective tissue at the centre of the corpus callosum (joining the two hemispheres of the brain) is not altogether absent but far too thin to support normal brain function. Her liver is also slightly enlarged. Nothing for it but – yes, again – to wait.

Week 24 – Our next bi-weekly monitoring appointment is a mixed bag. Firstly, it appears that the enlargement of the ventricles and issues with her liver have stabilised; YAY! Then, Lovely Doctor finds another, newer anomaly; little seedling is diagnosed with duodenal atresia, a blockage of the intestine that will require corrective surgery at birth. BOO! This discovery leads our team to reconsider the initial probably-not-Down-syndrome-but-something-else prognosis. Now we’re at probably-Down-syndrome-and-something-else. This brings with it a strange kind of relief, since Down as an explanation for any of these other anomalies is far less scary (or potentially life threatening) than idiopathic diagnoses would have been.

In happier news, we also learn at this u/s that little seedling has ‘a mop of hair’, and get all the more excited thinking about who she is, what she’ll look like and who she'll become. One thing's for sure, life will never be dull with her along for the ride. On the train ride home, she fortuitously kicks me several times vigorously, allowing H his first real feel of her presence. He melts.

Week 25 – Nothing in particular happens. Normal week! No problems! Heady days!

Week 26 – Our little seedling is making miraculous progress in leaps and bounds. Not only are no new anomalies discovered (what feels like a first for us in this whole process), but there are astonishing findings in her neurodevelopment: the ventricles are not only stable this time, but have slightly reduced in size, and the connective tissue of the corpus callosum has thickened to the point where they think it probably won’t be an issue. Lovely Doctor says she is impressed by little seedling’s fighting spirit and ability to turn these conditions around, the likes of which she has never seen. Amazement, relief and pride in our courageous daughter. We feel positively jubilant.

We are also told that my amniotic fluid levels are slightly high, a common side effect of the duodenal atresia, since babies with this condition can’t make the swallowing movements required that normally keep fluid levels in check. Higher fluid levels carry a risk of preterm labour, and we may need to consider an amniotic reduction procedure at some point. Super close monitoring is not likely to end any time soon. Sigh.

Week 28 – Status quo! No changes, everything continues to look good. We get to see up close that huge crop of fluffy duckling hair she’s sporting. Lovely Doctor makes the rather obvious comment that ‘12 weeks is the longest now you’ll be waiting for this little girl’, and I am suddenly, inexplicably stunned. It’s really real.

OK, because I am overly verbose and apparently incapable of abandoning narrative style when I write that wasn’t actually the most effective use of bullet-point-style chronology, was it? So for anyone with blog reading ADHD, here’s the summary: we still don’t have an official diagnosis because we refused the invasive testing, but expect little seedling to be born with Down syndrome, and are grateful and excited to start the adventure of life with this amazing, unique baby girl. We know because of her duodenal atresia she’ll require surgical intervention in the hours after birth, and will have a NICU stay of (hopefully not more than) 3-4 weeks to get her healed and feeding normally. It now (fingers crossed) looks as though the issues with ventriculomegaly and corpus callosum will probably not require any intervention beyond occasional monitoring. <Phew!> Somehow abdominal surgery sounds so much less scary and overwhelming than neurosurgery.

Basically, we’re just rolling with the punches and taking things one day at a time.  It's been an insane amount to process. At the same time, we have so many reasons to be optimistic about little seedling’s future, not least her evidently badass baby nature. H’s words really were prophetic: she's a little barricade stormer.

With all this monitoring, (and because it seems Lovely Doctor is a sucker for a photogenic fetus) I am also pretty sure she may already be one of THE most photographed children in the history of the British Isles. To that effect, I leave you with one of my favourite recent images, highlighting her already chubby cheeks and pouty lips at just 24 weeks.

One beautiful baby. Not that I'm biased or anything.

How could you not love that face?


26 comments:

  1. She's beautiful, Sadie. And one heck of a fighter! I'm so relieved for you that it now looks like neurosurgery will not be required. You guys have been through a rough few weeks, and you deserve to finally catch a break on something!

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  2. Oh my gosh she does have chubby cheeks and perfect little lips! So precious! Have you been having heartburn? I mean, is the old wives tale true about lots of hair and heartburn?

    There was a girl on my dance team that had to have intestinal surgery right after birth and she has absolutely no complications now. I'm sure everything will go smoothly for your girl too :)

    Enjoy this last trimester, it's so great to hear from you. I know your little girl is going to be a fighter and that she will fill your home with so much joy and laughter :)

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  3. She is so adorable :) It's good to have more answers and a plan. I'm continuing to send positive thoughts.

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  4. Aw, look at that face, how lovely. She is a strong one indeed! What an emotional and scary journey you have been through already. I'm sorry to hear she still needs surgery at birth, that must be scary (even though less so with abdominal surgery as you write, but still). I was wondering the other day how far along you were now, and almost 29 weeks already! wow, she will be here before you know it!!

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  5. Thanks for the updates xo. Sending you lots of love.

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  6. Wow what a fighter before she is even born!! I'm sorry that she needs surgery right after birth but abdominal surgery does sound much better than neurosurgery!

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  7. she is cute and she is a badass! we know who she takes after!! thanks for the update!! always look forward to hearing from you!

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  8. Oh I am so relieved, and she is such a fighter.
    A very close friend of mine had a child with duodenal atresia, (and no other anomalies). He had intestinal surgery and was very closely monitored those first few months, but if you could see him now, such a happy kid, jumping around. Of course it was hard and I do not want to minimise it, I just want to give you hope, like you say she is such a strong fighter.
    Our Yu stayed 3 weeks at the pediatric department, it was scary, hectic, I had panic attacks (still have to write about that, because at the time I did not even know those were panic attacks, I thought I was getting sick) ., but it all went well.
    There is also a blog that I love, Cooking with girls, it is a cooking blog, as the name says, but written and started when a mom had a child with Down's syndrome, and it is such a joyful place. It is in Spanish but I think you can understand it or translate it a bit?

    http://www.cookingwithgirls.com/anna-sindrome-de-down

    Also, the dad of this girl keeps a blog about her life with lots of resources. It is done with so much care. and really as cliche and cheesy as it is going to sound, in life what all beings need is love.

    http://www.elblogdeanna.es/

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  9. She's lovely Sadie!

    One thing I will add about NICUs: the love feisty babies. And your little girl is clearly very feisty. Let me know if you want to talk about NICU experience. It is a rollercoaster experience, but I'm happy to share with you wha it was like.

    Thinking of you guys. And come on seedling! We're rooting for you!!!!

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  10. You certainly are growing an amazing daughter, that's for sure.

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  11. She is fighting so hard to meet you guys--which I suppose is appropriate for how hard you worked to create her! Abdominal surgery for such a little one does sound scary, but you're right, less scary than neurosurgery. Enjoy these last few weeks!

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  12. I am so very in awe of your strength and your little seedling's fighting spirit. You are already an incredible, INCREDIBLE parent. Enjoy every moment of your pregnancy, and feeling her swim inside you. It is such magic.

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  13. She is 100% perfect and a fighter just like her mama! I can't wait to see how much hair she has once she's on the outside. But hopefully not for 12 more weeks!

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  14. Oh my goodness, what a cute face- and you are so right, those cheeks are just waiting to be kissed. That pout? This is one feisty little girl for sure. Sorry about the surgery/NICU challenges ahead, but that spirit you see in her picture tells you she is coming through whatever comes up. Sending hugs and love to all your family-

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  15. What a roller coaster ride you have been on. Sounds like things are getting more stable now and that is great news. She is a fighter, indeed!

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  16. What a scary 8 weeks! I will keep you and your little fighter in my thoughts.

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  17. I was on pins and needles reading this post! Oh it must have been so terrifying, but it sounds like you are in such a good place now. I know how reassuring those strong kicks can be!

    She is amazingly precious. I'm sure you cannot wait to kiss those little cheeks. I can't wait to see more photos.

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  18. What a journey, Sadie. You and your husband have been true warriors--not to mention that little girl, who is obviously one heck of a fighter :) Her face is so beautiful! I am glad you posted the update because I've been wondering how you're doing. So thankful to hear about baby girl's amazing growth and development--and that hair sounds adorable! Here's hoping for smooth sailing these last 12 weeks.

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  19. You have been through so much this entire pregnancy, but the last eight weeks have been torturous. I send my good thoughts and best wishes your way. Your baby girl is quite the fighter, just like her parents! She's pretty cute, too!

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  20. What a crazy ride you've been on over the past couple of months! You've done an amazing job rolling with the punches. Thanks for the update and thanks for sharing the pic too. Such a cutie!

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  21. Wow, what a journey you have been on. I love what a fighter little seedling is. And she is gorgeous. Those cheeks and lips! This pregnancy has been so full of fear and worry, I'm glad that you have also had the amazing moments of kicks and good news at doctors appointments. I'm so, so glad that the corpus callosum is there and nice and thick and that the fluid level is no longer concerning. I know the surgery will be scary and it will be awful to see her in pain, but like you said, so much better than neurosurgery.

    A friend of mine went through something similar last summer. They were told their baby girl had dandy walker syndrome and might have huge issues with motor control...or not. She might have a mild version or she might be unable to do much on her own...ever. Her ventricles were enlarged and the vermis in her brain was missing, so they said. The doctors were talking termination. An MRI and too many ultrasounds to count, they discovered the fluid in her brain was decreasing. They still didn't see the vermis. Within an hour of birth, they did an MRI on the baby and lo and behold, the vermis was there. The baby is 3 months old now and no signs of any trouble.

    Also, my cousin has down syndrome. She is 30. She volunteers at a daycare, she is an amazing artist and an avid reader.

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  22. Your baby girl is gorgeous! I felt such relief seeing her photo. She's perfect, regardless of the diagnosis. I love duckling hair on babies! You are such an amazing mum. That's how you spell it over there, right? ;)

    I feel so privileged to have witnessed your journey. Please know I am thinking of you. I continue to send you so much love and good energy from afar.

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  23. So much that you guys have gone through. I really admire your strength. You guys are all fighters. Keeping you in my thoughts.

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  24. A video to a Future Mother xx

    https://www.youtube.com/watch?v=Ju-q4OnBtNU

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  25. My comment just completely vanished - argh!

    Sadie - she is beautiful. This picture takes my breath away and brings tears to my eyes. Wow. And only 12 MORE WEEKS???!!! Oh my goodness, time is flying by so quickly.

    Thank you for keeping us updated - you are in my thoughts often and I'm glad to hear that some of the scarier diagnoses were ruled out.

    You are a wonderful mom and have so much wonderfulness around the corner. We are here when you need us - it's a lot to process, but man are you guys ever going to do great. This kid of yours is incredible. Barricade stormer - she learns quick and has picked up a ton from her mama already. Hugs.

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