Tag Archives: dandy walker

How Mama Got Her Fight Back

15 Thursday Aug 2013

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In the hopes of boosting the twins’ lung development I had my second dose of steroids today.  Side Effects of Steroids so far?

1) Hot Flashes

2) Insomnia (I literally can’t even relax) (and therefore have far more time to “think” than I would like)

3) Some new fight in my veins

Well, I’m doing it again.  Inch by inch I’m climbing my way back up a hopeful ladder.  Part of me knows I shouldn’t.  I know we have concerns about Nolan even surviving until birth.  I know we have concerns about how their little bodies will respond when I’m no longer keeping them going.  I know we have concerns about their brains being able to communicate to their organs effectively, about motor function and cognitive ability, about visual and hearing impairments.  About life.  I know.  Trust me, I…know…

And I’ve spent far more time the last 36 hours thinking about what we would do if we lost one or both boys than I ever wanted to.

But I’ve also been searching hard for someone who had Dandy Walker AND Lissencephaly.  And I found him.  He may be an exception, but he exists.  His a beautiful little boy with a bright smile.  His journey hasn’t been easy, but he’s now four months old.  He’s little, he’s behind, but he’s a fighter, and he’s making progress.  And he’s bringing unending joy to his family.

Someone else out there shouldn’t be…but is.

I know I may be setting myself up for devastation again, but are you ever really mentally prepared for worst case scenarios?  And if the answer is no, is there ever a good reason to accept them early?  I think for now, it is more important that I have some authentic hope left in me.  That I pump that hopeful blood through these boys.  That they feel that their mama hasn’t given up, and that they take a little bit of that hope and fight and keep it with them even after we’re separated.

Keep fighting boys…mama’s got your back.

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A Kick While We’re Down

14 Wednesday Aug 2013

Posted by in pregnant, twins

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We had another appointment today in Columbus. Key items to look at were Nolan’s growth, signs of early labor, and a re-check of the brains.

 
Despite having BH contractions, I haven’t shown any signs of progression. No dilation or thinning. So that’s good news. But the good news mostly ends there.

 
I mentioned in a recent post that we discovered both babies DID appear to have part of a vermis, part of a corpus callosum, and signs of a cavum septum. Those things were no less true today, and their lateral ventricle measurements were still in the 13 mm range. No change on the items with which we are most familiar.  Dandy Walker…and some unknown outcomes.

The new bad news has to do with the smoothness of their brains. She mentioned that as being a concern last appointment, but also said she wanted to watch for (late) progress at this appointment. And I think we were so distracted by what we felt was remotely good news that we didn’t HEAR the seriousness of what this can mean. Today, there was no progress. And the new term we’re dealing with is lissencephaly.

 
The outcome for their Dandy Walker diagnosis was wide and impossible to predict. But the addition of this issue is a bad combination. The ceiling of our “high” expectations has dropped significantly, and the floor for our worst case scenarios…has dropped as well.

 
In short, we still don’t know what these boys will be battling when they arrive, but the prognosis is more grim than we’ve been hoping. And our hope for any shot at a reasonable quality of life has lessened.

 
Hope in general…feels like it is fleeting.

 
Speaking of their arrival…it will be soon. Due to the fact Nolan isn’t growing sufficiently, and the gap between he and Landon has grown, we have an increased risk for still birth. With that in mind…she doesn’t want to wait any longer than we need to, so 32 weeks is our new max. I will return on August 28th for an appointment, and I’ll be admitted. Based on how that day goes, we will determine if we need to move quickly (deliver by 29th or 30th) or if we can wait until as late as Sept 4th.

Either way, the next time we head that direction, I won’t return home until I have held these boys in my arms. And until they arrive and we can make some assessments…I won’t know how long we will be there in the NICU, or if they will ever get to see their nursery.

 
The mixed emotions about knowing they will finally be here cannot possibly be put into words. While we can’t wait to hold them, and try to get moving on whatever help can be offered…the mommy in me is afraid saying hello may also be the start of saying goodbye. And even though it isn’t true…I feel like while they are with me, they are a little bit protected from what is to come.

 
Our request for prayer has never been more desperate. And we hope your response to that request has never been more diligent.

 
I warned you earlier this wasn’t my story, and I didn’t know where it was headed. Unfortunately, it seems today’s chapter is about heartache. But we still thank you for reading it along with us.

Who puts the “Stress” in non stress test?

13 Tuesday Aug 2013

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Who puts the STRESS in Non Stress Test?

This girl.

The MFM we’re working with has asked that I get a non stress test (NST) performed twice a week.

I’m a little early for the typical use of them, but given the complications, she wants to keep a watchful eye on these boys, which I appreciate.

The first one was last Thursday at our local office.  They had to monitor one baby at a time, so it took twice the normal time.  And L had the hiccups.  And L kept running away.  So it took MORE than double the normal time.  With a lot of manual intervention and some tricks by an experienced nurse, we passed and were in and out within about an hour.  But they suggested I get the future ones done at the local hospital, where they are better equipped for twins.  “It will be faster”, they said.

Fast forward to yesterday when I went in for an NST at the local hospital.  We had trouble keeping the heart rates due to the boys’ constant movements.  And part of me wonders if these high fluid levels will continue to give us problems in getting accurate readings.  Nonetheless, I was hooked up and we kept letting the strips run…and run…and run.  The nurse popped in occasionally and commented about the boys being difficult, moved things, exited. The midwife stopped in to check on me, and asked if I was feeling those contractions.

Those what?

Contractions. 

Great.  Technically I was, but I honestly had been attributing them to two boys fighting over space.  I have a two year old and until yesterday I still wasn’t sure what a Braxton Hicks felt like.   But yes, as it turns out, I feel those contractions.

Back to the task at hand. Technically the boys were failing by normal standards, but since they are younger (28 weeks trying to pass a 32 week test) the nurse said it would probably be fine, but they needed a doctor to sign off.  So I waited.

Strips kept running.

There was loud static noise every time the boys moved.  Which was fairly non-stop.

The clock on the wall kept ticking.

My phone was dying so I couldn’t even use a game to distract me.

More strips.  More static.  More ticking.  No distractions.

This went on for FIVE AND A HALF HOURS.

Finally, a new nurse popped in and said “good news, you can go home!”  It seems the Doctor summoned her Oz like powers and made the call from behind some curtain.  Nonetheless, she agreed the boys did fine for 28 week babies, and apparently wasn’t worried about the mild contractions.

I was told I could keep the complimentary water cup and box of tissues.  I grabbed both and bolted out maniacally.  Well…as much as a 28 week pregnant gal carrying twins can bolt.

Some takeaways here…

Words like “faster” “easier” “it won’t take long” etc all make me giggle and buckle down for the long haul.

I’m anxious to let Columbus do the NST on Wednesday.  I’d like to get a better feel for what their expectations are for our young babes.  See how they administer the test.   See if it takes them FIVE AND A HALF HOURS.    (That must always be yelled).  AND…I’ve been having those newly understood BH contractions from time to time for a few days.  I’m curious to see if anything has changed in a week in terms of cervix, dilation, etc.  Hopefully not…we need to let these boys keep cooking for a while.   So…I have a lot to learn tomorrow!