Tuesday, March 15, 2016

9 Months Later

I'm purposefully posting this last installment of the series today.

A few days after IUGR Awareness Day. 

Because long after the 5k Walk ends and the spotlight on the diagnosis dims once again, the reality of IUGR continues for so many families.  



So where are we today, almost 10 months later?

I am so happy to share that today N is thriving, thank Gd. 

He has had quite the year, including one surgery, a surgical procedure and a working diagnosis. 

N has an endocrinologist, a bone health nurse, an occupational therapist, a general surgeon, an orthopedic surgeon, a dietitian/ nutritionist, developmentalist,  neonatologist and a fantastic family doctor, all who closely monitor and follow him. 

A week doesn't go by where he doesn't have an appointment. 

When we were given the diagnosis we weren't given a prognosis. All we were told is he'll be little. Today, for sure, tomorrow, who knows? Besides that there was nothing.

And that's not good enough.

Today, IUGR is still an unknown. I've actually had a doctor roll their eyes when I've brought it up. When I clarified that my full-term baby was 1774g, he had nothing to say. It isn't taken seriously. Until you're standing in the ER clutching your baby, terrified and listening to doctors trying to decide if surgery should take place tonight or can wait, it's ignored. 

There's no preparation. There's no consideration. Maybe I was just naive, but throughout my pregnancy and all the talk of our baby being, "too small," not once was the NICU mentioned. Not once did someone offer to show me what the NICU looked like or even where it was in the hospital. Not once did someone explain to me that babies born at a low birth weight were at increased risk for so many issues that N has had to face. 

As per the advice of our incredible cousin, who I mentioned a post back, I joined an IUGR Support group. While there is something incredibly comforting about finding a community in this chaos, there is also something so frustrating and infuriating; that we aren't taken seriously. That we're seen as parents who just have small kids.

And then there's this fear. This fear that lives in the back of our minds, that few say aloud and no one can ignore.

Will it happen again?

We've been told (& to a degree we know, as hard as it is to digest) that we were incredibly lucky with N. That our 13 days in the NICU and the fact that he was born at full-term, are amazing feats. But what about next time? If we have another baby, will it be as "lucky"? Is it at an increased risk for IUGR? Is there anything we can do to prevent it?

I insisted on a placenta pathology work-up and follow-up. I underwent voluntary tests, appointments and reached out to others who have experience, to find out if there was anything else I could do. In Hebrew there's a term, "hishtadlus," which essentially means putting in your maximum effort. I'm doing my hishtadlus and I know at the end of the day it's in Hashem's hands, but I need to know. I need to know I've done what I can.

And the results? 

Just like during our pregnancy and just like N's first few months, it's all inconclusive. It seems, "placental insufficiency," is what we're going with now. 

40-60% of IUGR cases go unexplained. So the questions I whispered when I walked into the NICU...

"Why did this happen?"

"Why did my body fail him?"

They never get answered.

And it could happen again.

If they can't find answers they at least need to find a way to support families. Say the word NICU during pregnancy, because having it thrown at you as a possibility 5 minutes before you deliver is not right. Explain to us what having a low birth weight baby means. Don't roll your eyes when we ask about milestones or if his IUGR diagnosis could be related to the reason he needs surgery. 

Spoiler alert: it was. 

Both times.

Like I said in my first post, I wrote this as the series I would have wanted to read. I wrote this from the parents' perspective, from my perspective first sitting in the OB's office, and then through delivery and finally the NICU. There's a lot that hasn't been said and so much that I haven't accepted enough yet to share. 

But at the end of the day it isn't about me.

It's about N.

We need these awareness days and these spotlights, so as parents we can find answers and help our children.

N is remarkable. He's a bundle of energy and noise and chaos and love and was so obviously always meant to be a part of our family. He amazes me at how he really, really believes he can do things. He believes he can stand and crawl and push past any obstacle in his way. And he has! Today N is 5 times his birth weight. FIVE times. He's conquered surgery, surgical procedures, reflux and more. He's meeting milestones. He's succeeding and making us all smile ear to ear (& exhausted...) while at it. His personality is approximately a million times his size. 

So this is it. The end of the series. Thank you, to everyone who's commented, emailed, messaged and been in touch one way or another. Thank you for reading about our experience and sharing in the emotion and chaos of it all.

And to those who can relate. I'm sorry. I'm so sorry. And I won't say that I understand, because I don't have your baby and I'm not in your shoes. But I offer you my story and my experience. I want to give you hope and possibility when I tell you that my now 15lb, 9 month old, says Mama and Dada and crawls faster than I can catch him. That your baby is so strong. 

And so are you. 

And above all, you're not alone. It doesn't matter how many people don't understand your diagnosis or how many doctors roll their eyes, there are people and doctors out there that do understand! And you'll find them! They're out there! 

And there's this tiny baby, your baby, who's stronger than you can even imagine right now, who's ready for whatever comes their way and needs to know you are too. 

You CAN do this.

You WILL do it.

You both will.



If you'd like to read the full series, you can find the links below!

 



3 comments:

  1. Thank you so much for sharing your important story. It is so generous of you and I'm sure you will be helping many people. I wish you and your beautiful family only clear and obvious good

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  2. Thank you so much for sharing your important story. It is so generous of you and I'm sure you will be helping many people. I wish you and your beautiful family only clear and obvious good

    ReplyDelete
  3. Both of our babies have been born with iugr. I didn't even know what that meant until my second child was born. They didn't really explain it with our first born. Our daughter was a month early and weighed 1580g. While our son was born 10wks early at 750g. Because our first was small when she was born, I was watched closely during our second pregnancy. A few things caused my son to be born so early. Thankfully we were being watched so much, otherwise we may not have him with us today, as I didn't feel anything different inside me. I didn't show much for either pregnancy. Thankfully, neither our son or daughter had too many complications. IUGR isn't a term heard too often, I think a lot of these types of things should be brought up in pre-natal classes so that people can be aware that these types of things do happen. Thank you for sharing your experience

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