I dreamed a dream in times gone by

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Jun 11, 2013
I dreamed a dream Williams Syndrome

I dreamed a dream williams syndrome

When you learn you’re having a baby girl, regardless of the misgiving you have about the day-to-day ups and downs in the pregnancy, your mind wanders to what the future might be like if it all works out. You get to have a baby girl, a daughter. You get to have tea parties and dance classes. You get to help pick out prom dresses and wedding dresses. You imagine grand babies. You have a dream for her, and for you and her. You have a dream for yourself as a mother and a mentor and a friend.

You have a dream your life would be so different from the one that you find yourself in when you get the call that your followup from genetics has been scheduled for months down the road and you’ll be seeing a different doctor and be followed by a different clinic.

In that life, the one you find yourself in, you freak the fuck out because followups and clinic switches must mean there are results and if there are results, then why the hell do you have to wait 2.5 months to hear them. And then you go all momma bear and ‘make some calls’ which can be loosely translated to “lose your shit” on a number of people.

At the end of these “calls” – which take place over 3 long days, you find there is suddenly an opening for Tuesday, 5 short days away, with the original doc you saw to discuss results, that are, as you suspected, in. And, after that gets arranged, you find your phone is ringing, again. This time it’s the doc himself, with apologies for the mix up and the offer to give you the results over the phone – something, he tells you, they don’t usually do – but given your level of stress over the situation, (ie – because you seem to be losing your shit), he is willing to do in this instance. Of course, you say “yes, thank you” and he asks if this is a good time and if you’re sitting down and you say “yes” and “yes” and then as he speaks, the dream you dreamed of your future, the dream of your charmed life with your charmed daughter (the dream you knew in your gut and your heart was a long shot but you chose to dream just the same) ends. It dies. And a little piece of your heart dies. And a piece of you, as a mother, dies right along with it.

Just like Fantine in Les Mis says, now life has killed the dream I dreamed.

Genetic Testing – A needle in a hay stack

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Jun 11, 2013

When you set the ball in motion to look to genetics for answers, you learn the answers you seek are like finding a needle in a hay stack.

I posted about our meeting with genetics here.

We knew they had suspicions as I mentioned in the post I linked to, and I started to live as though their suspicions were true.

Still I waited for the follow up with bated breath. I am one of those people who needs to know once and for all.

In her own time

by , on
Jun 11, 2013

When you have a preemie, the one thing you hear a lot is “in her own time.” As in “she’ll start nursing in her own time.”, or “she’ll smile in her own time”, or “she’ll make I contact in her own time”, or “she’ll have alert periods in her own time”…you see where this is going.

Obi wasn’t acting like a ‘typical’ newborn. She was slow to gain weight, could latch to nurse, but couldn’t transfer enough milk to make a meal. You had to wake her up to feed her at term, 2 weeks past term, two months past term. She wasn’t smiling at 4 weeks corrected, 8 weeks corrected, 12 weeks corrected. She didn’t make eye contact. She didn’t follow sounds. She wasn’t doing things in her own time (own time my ASS I wanted to tell everyone who tried to convince me to just wait it out)…she wasn’t progressing at all.

So, like every crazed sleep deprived woman who spends hours on her own watching a sleeping baby willing her to wake up, I turned to Dr. Google. Now, I am not suggesting this is an activity which is good for your health or your sanity. There is some crazy scary shit out there. But I needed to find some sort of explanation, however unlikely. However crazy sounding. However unpleasant for me.

I came up with a short list of conditions that fit with her behaviour and, on March 26 went to doc to discuss the possibility that “In her own time” was not the whole story. I believed there was more to it and at that appointment, the doc agreed. She felt that Obi had some ‘soft markers’ and perhaps digging a little deeper would be a wise course of action. She didn’t necessarily agree with the top idea on my list, but marked it down and suggested casting a wider net. We were referred to genetics and were sent for a few other tests as well.

Finally, I thought, we’ll get some answers. I am the kind of person who believes knowing is better than not knowing. Even when knowing changes everything.

In My Gut – Something wasn’t right with my preemie

by , on
Jun 11, 2013
preemie in NICU

preemie baby in NICU williams syndromeAll through my pregnancy with Obi (dubbed Obi because she was the result of a single remaining embryo from an IVF cycle, and that embryo at the time, made me think of Princess Leia’s plea to Kenobi in holograph form in Star Wars – “Help me Obi Wan Kenobi, you’re my only hope.”) I had a gut feeling something wasn’t right.

At every turn there were people telling me it was ‘just this’ or ‘just that’ but the pregnancy just wasn’t the same as the 39 weeks I spent brewing my boy.

She arrived at 34 weeks 4 days, remarkably growth restricted, in distress, via emergency c-section for being breech. As they were prepping me, my water broke, which reinforced the idea that she needed to come out – NOW.

My tiny 1690g girl entered the world with a team of specialists standing by but surprised all by letting out a tiny shriek and breathing room air from the start.

She headed off to the NICU where all preemie babies go and I headed off to recovery and there was lots of discussion about symmetrical IUGR and placental problems and best case and so on. She was tiny and I was in love and she was healthy and all that, but I couldn’t shake the feeling that she just wasn’t like the boy.

I asked a million questions but everyone had a logical answer.

Everybody who cared for her saw each of my misgivings as a ‘good sign’. And I started to hush my gut and chalk it up to the trauma. And she got a little bigger. And I put a little more distance between myself and the unpleasant pregnancy and the 25 day NICU stay and life as a preemie mom. I started to let my guard down. I told my gut to shut the fuck up. And I just loved my itty bitty baby girl. As it should be.

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