How Mama Got Her Fight Back

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

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?

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?


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!

One more week down

It feels a little bit like time has slowed to a crawl. Maybe I’m just anxious to get the next 8 weeks behind us so we can meet these boys, but in general…last week lasted at least 3 months.

Time SHOULD be passing quickly. We’re certainly busy.  Last week alone we had the following tasks with regard to the twins:

Monday: Met with the day care to discuss their experience in caring for special needs children.

Tuesday: Appointment at the Northern Office to discuss MRI results, blood work, and overall discussion of recommended plans going forward. That was our last appointment at that office.

Wednesday: Phone calls with Columbus to set up the upcoming tours and meetings with various departments (neonatal, pediatric neuro, etc). Phone calls with the local office to schedule alternating appointments and NSTs to fill in between Columbus visits.

Thursday: Attempt to get back in touch with the Doctor who read the MRI for some follow-up questions we have. (It seems that’s not normal…the receptionist was confused to be hearing from a mom rather than a Doctor…) (Side note, she will continue to hear from me until he calls back. :-D)

Thursday: Our first NST at the local office, and coordinating a final records transfer from the Northern office to Columbus.

Friday: Additional phone calls for Columbus, and follow-up attempts with the Dr who read the MRI.

In between all of this, we’re also researching things like cord blood banking, brain terminology, HBOT and other types of therapy for when the boys arrive, even homeopathic ideas I can potentially implement now and for the remainder of the pregnancy, and what feels like a never-ending internet search to find families like ours who initially expected the worst, but continued on anyway.  I’ve yet to find another set of identical twins.

This is in addition to working full-time, raising a two-year old, and trying to live a “normal” life.

Some good news:

• 95% of the time when I smile or laugh it is genuine. And I do both of those things often.
• J and I are closer than we’ve ever been.
• K continues to both charm and challenge us in ways only a two-year-old can.
• Encouragement continues to pour in in the form of phone calls, messages, letters, visits, bible verses, a book, and even a special necklace.
• While we’re feeling overwhelmed sometimes, and impatient most of the time…we’re also feeling ready. Ready for October, ready for a chance to hold these boys, and ready to start our life as a family of 5.

Information Underload

One of the hardest parts of the next few weeks will be balancing our need for more and complete information, with our inability to know everything…and our desire to let go and trust God.

We went to today’s appointment with high hopes in terms of being able to learn more.  The bloodwork results came back “good”.  That wasn’t a surprise as we were not suspecting Downs or a similar trisomy, given that we’ve effectively settled on the Dandy Walker diagnosis.  Nonetheless, confirming good news is still good news.

We were looking forward to the MRI results today as well.  I’ve probably watched too much tv, but I was anticipating huge revelations, great visual images, and a much clearer explanation of what is taking place in the boys’ brains.  Instead, we had to request to see the MRI results, and even then the explanations were no more clear than what we had assumed from the ultrasounds.  Not to mention I needed a dictionary to decipher them.

“Subjectively speaking, there appears to be polyhydramnios.  On many of the sequences, this has caused artifact as minor fluid movement can therefore lead to motion artifact on sequences.”

I believe what he was saying there is the high amniotic fluid levels led to distortion so getting a clear MRI was difficult.   My redneck version might be “looks like the high fluid led to some sloshing, and messed up the pictures.”

But who knows.  I suspect Doctors are trained not to say words like “sloshing”.

However…the MRI did NOT uncover new issues.  And aside from wanting more information, hoping we didn’t learn additional bad news was also in the forefront of our minds.  So no new bad news…is still good news.

Other developments include around a 15% disparity between L and N.  (Down from 25% last week).  L is measuring 2 lb 13 oz.  N is measuring 2 lb 6 oz.

The MRI also measured lateral ventricles in the mild to moderate range.  He even used the term “mild hydrocephalus”.  That is not a surprise to us either.  We anticipate that those fluid levels will rise and fall throughout the remainder of he pregnancy, and potentially see a spike following birth.  To prepare ourselves mentally, we’re assuming hydrocephalus will be an issue and that shunts will be put in…   Hopefully that’s a bad assumption, but it seems prudent to be prepared.

All in all, we remain cautiously optimistic for the boys.  No matter what lies ahead, we love them, and can’t wait to meet them.  And who knows, maybe some day they will become pediatric neurologists so they can explain all of this to their mother.

Please, please, please keep the prayers coming.  The next few weeks are going to be long and trying for us as we fight off feelings of helplessness and fear.  We have felt inexplicably strong and at peace throughout this, and I attribute that in no small part to the droves of you who are praying for our little family.  Some of you we know well, and some of you we’ve never met.  But we are eternally grateful for each of you.

He’s still working on me

(Update as of 27 weeks)

This update will start positive, take a negative dip, then end positively again.  Hang in there.

We went to Columbus today in search of a second opinion from a different Maternal Fetal Medicine (MFM) Specialist.  We were not hoping for better news, or different news.  We were just hoping to find someone who would deliver the news with the intent of educating and empowering us, rather than discussing termination options.  Someone we could partner with going forward.  Because we ARE moving forward.

During the 6 hour appointment, we met with a genetic counselor.  No huge revelations there, but she understood our hesitation in doing an amniocentesis, and agreed we could get that information in a few weeks once the boys have safely arrived.

We then had a two-hour ultrasound where we took a much closer look at the boys’ brains.  She did an awesome job of talking us through what we were seeing, or not seeing.  Here’s where it gets interesting.  Remember that Absent CSP?  Perhaps it was just tardy, but it was there today.  In both babies.  Now…just like its absence wasn’t particularly ominous…its presence isn’t particularly promising.  But nonetheless…it was present today.

Also present today?  Signs of the corpus callosum.  We were previously told that the corpus callosum wasn’t there (also known as complete agenesis of the corpus callosum / ACC.)  Today…at least a partial presence was detected.  So we may still be dealing with an incomplete corpus callosum…but we are thrilled that there are at least SOME pathways present, even if they are incomplete or malformed.

Remember that gap in the cerebellum?  Well, it’s still there.  But when the previous doctor used a scrap piece of paper to explain it to us he made it appear as if there were two spheres that weren’t touching.  That missing connection, known as the vermis, IS partially there after all.  The top part in particular has some connectivity, although the gap was still clearly identified in both boys toward the bottom of their cerebellum.

I’ll let all that soak in.

In all three brain malformations…we received better news today than we did last time.

You can decide whether we were just led to a more prepared ultrasound tech, or if God is still at work in these little brains.  But either way…the news was slightly different this time, and there ARE communication pathways in the brain where we previously feared there were none.  In terms of potential that feels HUGE.

Now…all that said, (and that is a LOT)…the diagnosis didn’t change.  We are still looking at Dandy Walker Malformation.  And in the end, the expectation of some form of handicap or delay is still there with no real way to predict severity.  Fatality seems highly unlikely to this doctor, which is fantastic.  But she still fears some level of mental retardation to an unknown extent.  So while we’re in the same place we were, with a lot of unknowns, it feels more hopeful.

Overall, we were very pleased with this staff.  Before we had a chance to bring it up, they discussed partnering with the pediatric neuro team, and how important early intervention would be.  That’s a far cry from “there’s not much I can do for you now” or “I’m sorry the news isn’t better” which was the message last Tuesday.  We appreciate their interest in looking forward and upward, and have decided to shift our comprehensive care there going forward.

In other news, L is 25% bigger than N.  And there was a bit of a jump in that gap since last week.  I will return to this doctor in two weeks, and if that gap is the same, or larger, they will keep me overnight for observation and consider intervention.

In other other news, 36 weeks will be the max they will allow us to go.  However, given the increased amniotic fluids in both sacs, I am likely to go in to labor earlier.  She said not to worry about bed rest at this time.  In fact she preferred I stay active, mentally busy, and hydrated.  Just…not to overdo it.

Shew!  What an update!

The overall message from today’s update is…God is at work here.  And we can feel it.  When I pictured their little brains still fighting to form some of these missing parts or to make their presence known, an old song from early Sunday School days started to roll through my head…”He’s still working on me…”   If this God can make the moon and the stars in a week, just imagine what he can do in a couple of tiny brains in a couple of months.

Why Am I Telling You This?

There are a number of reasons.

1) Writing helps me cope.  So maybe that’s a selfish one, but it’s a reason nonetheless.

2) I feel led to.  I can’t explain that one further, it’s just true.

3) I picture another family somewhere out there getting similar news and having the same trouble we did finding information, finding someone who understood.  Finding a story of hope.  And I hope that if they land here, they will know they are not alone.

4) It’s easier to appreciate the height of a mountain when you have experienced the depth of a valley.  We are experiencing the valley, and will treasure any climb upward we can get.  I want those who care about L and N to understand their valley as well, so that we can fully rejoice on the hills and mountain tops together.

I realize many of you are interested in less detail.  Maybe you would prefer we left some of the sadder more ominous parts out and focused on the good news.  It’s easier to read about a nursery update, or see a belly pic than to hear technical terms, survival rates, or medical updates.

But then I wouldn’t be telling the whole story.  And the way I see it…God is the author of this story, I’m just the one telling it.

The scariest part about telling you a story I’m not writing is…I don’t know how this ends.  Even worse…I’m not sure what this story is about.  I hope it is about a miracle.  I hope it is about the strength of two young boys who science had counted out.  Maybe it is about a mom and dad who were warned of the worst but hoped for the best.  Maybe it is about the strength of prayer, or the importance of love and support in the face adversity.  And in that way, each of you are part of this story as well.

So while the ending is unknown, and the plot line isn’t clear to me.  This chapter is about hope and faith.   And we thank you for reading it along with us.