Two Years Alive

Two years ago tonight, I was on the ride of my life.
I understood that I had a serious, life threatening condition that could advance at any moment.
I understood that my unborn daughter, who had reached 33 weeks of gestation, was also at risk.
I heard them tell me that they were planning a possible c-section for the morning.
I was on a fast to prepare.
I understood all of this,
Though these facts are things that I understand with much more clarity today.

Today I understand that the picture was much more severe than I grasped then.
My worries should have all paled to the fact that my life was on the line.
The health of my kidneys and liver in question.
The possibility of stroke high.
And the impact that any of the related complications could have had on my children and husband.
I get it, today.

I slept for about two hours on this night two years ago.
The emotions that surrounded me were too intense to calm.
This was not new to me.
I had been in the hospital on bed rest for eight days,
After bed rest at home did not stop my aggressive pre-eclampsia.
And my pregnancy had been at risk for months.
The emotions just kept growing… and there were as many positive as there were negative.
Creating a storm too fiery to give way to sleep.

The next morning, I woke up to blood draws and an ultrasound.
NST's and a long visit from a dear friend.
The kitchen sent a breakfast for me,
And this is how I knew that we'd been given more time.

But before my lunch arrived, I had to give in to the severe headache I'd been trying to suppress.
My doctor happened to come in with the nurse when I called her,
And I saw the look pass between them before they stepped in the hall.
I have no idea how much time passed from that moment until
My doctor told me that my baby girl, only 33 weeks and 1 day inside of me, would be born
Soon.
Those seconds, or minutes, passed in a storm of intense emotions that made them fast and slow at once.

I called Andy, I called my Dad and asked him to book a flight for my mom.
I listened numbly to the stream of specialists that came in and out of my room.
I can't tell you much of what they said,
But I do remember being told I was the highest priority to get into the OR and she'd be coming soon.

Less than four hours later she was alive.

Her life started in the midst of a storm,
And she was the brightest sunshine.
It wasn't a smooth start.
We could have lost her in the first day,
And the second and the third were extremely scary.
On the eighth day, my miracle was free of two chest tubes,
Free of her nitric oxide,
Free of the bilirubin lights,
Free of her ventilator,
And the biggest miracle that day was that she was completely free of oxygen support.
No cannula - first day off of the vent.
And I, I got to hold my baby for the very first time.



There were so many moments in that NICU.
Yes, some were scary and saw puddles of tears flowing from my eyes.
But mostly, it was the other way around.
Mostly I saw one miracle after another.
At home, we were surrounded by a support system I hadn't known was there.
Our lives were filled with so much life.

And on her 27th day, she came home.



The first month of her life remains the most intense of mine.
I wish I could share what it was like.
How even in desperation I was always sure there would be reason.
How I felt hundreds of hands lifting me up,
How I knew I was witnessing miracles,
How every moment of each day was so big.
I could spend hours,
Paragraphs,
Trying to explain it.
And still not do it justice.

But I know that those of you that have dealt with life and death,
Those of you that have witnessed miracles,
Have been in moments just like the ones I remember.

So much has happened in two years.
My little girl is perfect.
She has two little scars where her chest tubes once were.
I see them every day when I dress her.
And they remind me that we've seen a miracle.
They remind me that she is strong.
And they make me conscious of how lucky we are that she is "just" a little girl today.

Our story is so happy.
I understand that my experience was not terrible.
For me it is the hardest, most intense, thing I have endured in my 38 years.
Everything is relative.
People often back pedal on their own stories of intense births when they learn ours.
But I tell them to go ahead, because that is their truth - and my story does not diminish theirs.
I hope anyone reading this will give me the same liberty.
And realize that I know we are lucky.
I know there are many, many stories of greater hardship.

In a week and a half, we'll revisit the NICU that saved her life.
We'll be there to see her picture hanging on a wall as part of a project to help current NICU families.
I know that I'm going to feel a lot of emotion that day.
I've felt those emotions, that have faded in the past two years, grow again as we approach her birthday.
The biggest of all, gratitude.

In many ways, I feel like my life started with hers.
This is not to say that everything that happened before her was less.
But since her, I'm just so much more aware of everything.
I'm more open to see the miracles that surround us.
I work harder to make every day mean something.

Tonight I remember.
I cry.
I rejoice.
I write about it all. 

Tomorrow I'll greet my Macie Drew with a Happy Birthday.
I'll make the day as special as I can for her.
And I'll offer my own prayer of gratitude for every day we've had together.

Macie at One Year

That's my beautiful little, one year old girl.  Man, what a year.  Really, what a year and a couple of months.  The rollercoaster we shared really left the gate a month and a half before she was born, and went through some incredible drops in the beginning.  But our highs have far surpassed those lows.  I know that I have written about it endlessly, and I beg pardon for anyone who feels I may have taken it too far.  Here's why I've spent so much time writing about it on my blog:

• I am proud of what we've done and I want to remember it, and I want my daughter to know it too.
• For my own medical documentation, I want to have a record of everything I can remember.  In case I'm crazy enough to go down this road again post-HELLP.
• Because it's been amazingly therapeutic for me.  I feel that my writing, and the occasion it has given me for frequent reflection has saved me from the level of postpartum depression I could have reached.
• For others.  When I was in this situation, I searched exhaustively for tales from others.  There were very few to find.  Now I've added one more to be found.  And if we could help one other person to get through their ordeal, to not feel alone, to have hope in positive outcomes... everything will be worth it.

I did a lot of reliving of this journey in the months before her birthday.  If you haven't read our story before, or if you want to reread it in parts, here are links to the different pieces.

• My Stay in Bed
• Delivering Macie Drew
• Macie's First Day
• Macie in the NICU: Days 3-7
• Macie in the NICU: Day 8 Magic
• Macie in the NICU: Week 2
• Macie in the NICU: Week 3
• Macie in the NICU: The Final Week
• Macie at One Month
• Macie at Two Months
• Macie at Three Months
• Macie at Four Months
• Macie at Five Months
• Macie at Six Months
• Macie at Seven Months
• Macie at Eight Months
• Macie at Nine Months
• Macie at Ten Months
• Macie at Eleven Months

Also, I think it needs to be said that the emotions that followed Macie's homecoming surprised me both in their intensity and their duration.  I never realized in considering the potential of having a premature baby, the fact that most of the emotional work would be done after everything was alright.  I've also tried to document much of this emotional journey:

• Remember This
• My Little Princess
• Six Months Past
• Unexpected
• Fierce
• Memories Unstoppable
• March, The Third Week

And I promise not to share any more links.  Whew, I've written a lot about this little girl and about how we got to the special One Year milestone!

My little girl at a year was just as she should be.  Practically perfect in every way.  And I'm so lucky to have her in my life.

Stats:

Chronological Age - 12 Months

Adjusted Age - 10 Months

Weight: 19.5 pounds, 16% normal charts/75% preemie charts

Length: 28.5 inches, 19% normal charts/50% preemie charts

Head Circumference: 18.9 inches, 98% normal charts/100%+ preemie charts

*I waited until 13 months to take Macie in for her one year appointment, so these stats are from her 13 month visit, however all percentages compare her to other 13 month old babies.

Milestones:

• Army crawl - 49 weeks
• Takes practice steps while holding someone's hands - 49 weeks
• Says "Dada" and "Mama" - 50 weeks
• Starts rocking on all fours - 52 weeks
• First all fours crawl - 52 weeks
• Pulls to a stand - 52 weeks
• First zoo trip - 52 weeks

At 12 months, Macie was wearing 6-9 month clothes and size 3 diapers.  We did wear the occasional 12 month outfit.

Feeding:

This month Macie finished her transition to formula for milk.  She continued to have some choking issues, so we continued to take food introduction slowly.  

Solid foods introduced this month included:

• Beef
• Pasta
• Bread
• Goldfish crackers
• Chocolate
• Cake

Sleeping:

Except for teething nights, Macie continued to be a fantastic nighttime sleeper.  She went to bed between 8:30pm - 9pm and slept until 7-8am in the morning.  Most mornings, Macie and I would get 30-60 minutes of alone time before Ephram woke up to join us.  It was nice, quiet time for us!

She played around with her naps during the day, thinking about dropping her morning nap and going down to just one daily nap.  In the end she stuck to two naps, with the morning one decreasing to 30-60 minutes in length and the afternoon nap usually around 3 hours.

Macie slept in her crib.  When she woke, she usually went back to sleep on her own in a minute or two.  During the day she slept in her swing for naps.

Teething:

Macie cut teeth 9 and 10 just before she celebrated her first birthday.  (Tooth 10 came through the day before!)  She had six teeth on top and four teeth on bottom at the end of the month.

Communicating:

Macie loves to talk!  She quickly added beginning-sound words for:

• Block
• Book
• Mama
• Dada
• Brick (Legos)

She also continued to use a lot of gestures and a few official signs to communicate.  Her best communication tool was her smile.

Favorites:

• Playing with musical toys
• Moving around the house on her own
• Playing with Legos
• Collecting cheerios on the counter
• Getting her brothers to do things for her
• Reading magazines
• Sticking out her tongue
• Smiling
• Toy: Alphabet house blocks
• Song: The Wheels on the Bus
• Book: Pajama Time

Happy One Year Macie Drew!  We made it!!!

Her Castle

On March 29th, my not-so-little preemie of a girl found something in our piano room.
It was so exciting that it caused her to move like this for the first time.

What was it?

Her very own castle, complete with a couple of princesses.
Macie's already quite familiar with my favorite, Cinderella.
She grabbed for her, shooting a little arm through the front doors, super fast.
And then decided to grab Snow White, too.

This toy is not recommended for 12 month olds,
Certainly not those that are actually 10 months developmentally.
We weren't sure if she'd know how to play with it.

She had no trouble finding joy from this toy.
We have done this discovery present approach with each of our children in their first year here.
It's the best.

A year prior, Macie entered the world in uncertain circumstances.
My emotions at our first meeting were high, in every way.
I was so overwhelmed with the whole thing.
I'd never felt such compounding fear and sorrow all while experiencing equal hope and joy.
And that conflict of emotions continued well after that meeting,
Strongly during the first month that is pressed in my mind with NICU scenery,
And in sometimes overwhelming and unanticipated spurts throughout our entire year.

And here we were, one full year later.
And all I wanted to do was celebrate our joy.
Did I cry?
Yes.
I mean, look at this perfect baby toddler girl.

March, The Third Week

This third week of March
Has sure been a doozy.
It started with part of my tooth breaking off.
Ephram is having a hard time adjusting to the time change.
And I was up with him past 5am two nights this week.
Another two nights this week, I was up until just before 5am with my baby girl.
Who has (at least) three molars pushing through her gums.
Poor baby.
A trip to the dentist revealed a very bad cavity in the tooth behind my broken one.
So I spent two hours in a dentist's chair.
And hope that I avoided what would be my first root canal by the narrowest of margins.
1/8 of a millimeter, the dentist said.
I also had a cold,
That packed a fever,
And some lovely aches and pains.
My Charlie, who's been making some wonderful progress,
Experienced a complete behavior regression this week.
You don't want to know what that involves.
Trust me.
I don't either, to tell you the truth.
My bed was puked on and then peed on this week,
On back-back days necessitating sheets and quilt washed when I was running a fever.
And I threw out my neck somehow.
Leaving me incapable of turning my head to the left for a day,
And twinges when I did for another two days.

There's a lot that I could complain about.
But I don't feel like it.
Because I can't help but remember
My last third week of March.

31 weeks pregnant with my baby girl.
Every day spent at a doctor's office,
Sometimes two doctors, back-back.
Hooked up to machines to monitor my unborn baby,
My blood pressure,
My heart rate.
Blood drawn every day.
The knowledge,
Terrifying,
That it was bad.
I just knew it.
My luck was running out.
Desperation to save my baby,
Tortured by a body that refused to be normal,
Heartache from a need to be with my boys...
And knowing our separation was imminent.

Tomorrow marks one year from my hospital admittance.
It was the first night ever in his life that I did not put Ephram to sleep.
That fact crushed me more than anything else that night.

I wasn't told just how bad things got for me until well after the fact.
My platelets crashed, my renal activity declining,
I was told later that my doctor met with her colleagues
To discuss the very real possibility of a stroke,
Or worse.

I'll admit it now -
I was a total basket case.
I was so paranoid, of everything really.
They were smart not to key me in.
I tried very hard to focus on the positive,
But it was often too hard for me to do.
Which is not the face that I put on for most,
And definitely not the side I chose to show my friends and family.
Because I try to hold myself to a policy to not accentuate the negative in my relationships,
Of trying to focus on the positive.

In many ways that tactic left me very alone in this case.
And put the burden of my anguish on a select few
That I owe everything to.

Even then, through my despair and anxiety, I was aware of my luck.
I am so grateful that this greatest trial of mine also
Gave me a very real, tangible and beautiful reward.
And taught me so very much about
What I can do,
What I can face,
What I have been given,
And humility in knowing that I need help to do the most important things in life.

At first I could not help but to keep a list of
The Things That Pre-Eclampsia and HELLP Took Away From Me
When I discussed it with my select few,
I tried to make it a joke.
But really it wasn't.
It was a great coping mechanism.
No matter the unhealthy aspect of keeping such a list,
It was that list that finally allowed me to
Let go of my guilt over a situation that was truly out of my control.

You don't know how it feels...
Or if you do,
I'm sorry.
To see your baby lying somewhere,
Helpless,
And to know that the only reason
She is in pain
Is because I failed her.
Finally now, I can say that I know it wasn't my fault.
And believe it.

They say I should not have any more babies.
I don't know.
I feel like I'm missing another.
And I can say, now, a year away from that time
I would live through that six months of pain in a heart beat all over again
To be blessed by a lifetime with a beautiful baby.

Still,
When I had a pregnancy scare a month ago,
My only thoughts were terrified.
So clearly, I'm not there yet.
And maybe I never will be.

If there's one thing I've learned
Through my struggles with fertility
And trials faced through pregnancy
And parenting
It is that, His will be done.
And I trust His wisdom.
Because now, with distance,
I see all of the miracles brought by the way this came to pass.
And I know that it was meant to happen.

Lately the question I have been posed,
Over and over,
Is have I fully recovered?
Will I ever be recovered completely?
I have closed a cycle of coping,
Very recently accepting this ordeal for what it was.
I've let go of most of the anger that I held,
Much of it misdirected.
I let go of my list.
Sometimes I can tell people that
Her name is Macie Drew and she's 11 months old
And leave out the part about how she was 2 months early.
(Although I always think it to myself, even if it is not spoken.)

Overwhelmingly, I feel like I am supposed to have moved on.
Be grateful for what I have.
A beautiful, healthy, thriving daughter.
A family that is complete and together.
A body that is still ticking away,
And capable of sitting in that dentist's chair for two hours,
Of taking care of her little ones' needs.
Of pushing through the annoyance of a minor cold and a stiff neck.

Oh, am I grateful.
I don't know words that better express the feeling.
But I also have a very hard time not talking about what we survived.
And I know that it's expected that I let go of it.
But letting go of it almost feels like abandoning the struggle.
And forgetting the journey
That I'm so proud of,
That is one of my most defining accomplishments.

And I haven't been able to do that yet.
So I decided,
I'll write it down.
In the most honest and raw form that I can.
And though you can't see the tears that I cried as I typed this tonight,
They're here.
And they mean the world to me.
They aren't all sad.
They are happy,
They are grateful,
They are proud,
They are fulfilled.
They are in love for my daughter,
And my sons.
And in hope for the continued journey our family will take.

And now I'm making a promise to myself.
I'm going to leave these words here.
And do my best to leave the sorrow and self pity here, too.
Not abandoned, because they're recorded.
Because I understand that those emotions are an important part of the learning, too.

Lately I have been given, and seen, the opportunity to pay it forward.

To give to people the gift that meant more to me than all else last March and April.
The gift of hope.
Sharing our story, offering support to others,
Relating and listening.
That's where I'm focusing this energy now.


I'll continue to funnel my energy on the good that came from our crisis.
My daughter.
She'll celebrate her first birthday one week from today.
And I'll remember the struggle for her.
And because it defines me
And our family.
The worst of this past year will still be there,
But I'll share it only when it can help someone else.
I'm going to accent the best of this past year.
Because that's the legacy that I really want her to own.

So this March, this third week
It's been a doozy.
But definitely better than last year.
This week I escaped a root canal by 1/8 of a millimeter,
But last year my family escaped a worse fate by such a narrow margin.
And I am so grateful to be here to experience life.

Memories Unstoppable

I have a slideshow that plays in my head.
It's personal,
Intense,
Drives sadness,
Incites triumph,
But mostly, it's just mine.
I suppose that this is probably normal.
I hope it is, at least.
That trauma survivors replay events.
And I assume that it is normal for it to intensify as anniversaries approach.

Anniversaries are approaching.
And I feel in some ways like I am on a train.
The course is chosen,
The tickets bought.
I can't get off,
Even if I feel we are going too fast,
Or not fast enough.
The control of this journey is not mine.
I know I'm going to pass every stop,
See every sight,
And eventually get to some destination.
I hope that destination is fulfilling and peaceful.

Don't get me wrong.
I am grateful.
Tremendously so.
I had some terrifying months.
Yet those months also brought great joy.
And I know that I am blessed.
That a few months are but a blip on the radar for the lifetime I get to spend with my daughter.

But still,
The train goes on,
Passes through many emotions.
Often unexpected,
Unstoppable.

This week last year we had a significant snowstorm.
I also turned 36.
And though we were stuck in the house for a week,
I remember it as a magical time.
I had just learned my baby was to be my first daughter.
Ephram and Charlie were so excited about the snow.
I felt that all was perfect.
I was secure in my marriage, my health and my family.
I was safe.
I also remember that it was at my appointment a week later that it all started to change.

Tonight as I rocked Macie to sleep,
I watched the snow fall outside.
And again the pictures cascaded in my head.
Memories so dear,
Intense,
Mine.

One year past... this is where it starts.
The stream of anniversaries will soon hit.
First appointment that resulted in modified bed rest.
First hospital stint with a husband half a world away.
Restrictive bed rest while caring for an autistic son and a toddler.
Warning of hospitalization.
The hospitalization itself
The day I got the headache to end all headaches.
The day that ended with a beautiful girl.
The heartbreak in learning of her double collapsed lungs,
The pain of seeing my baby suffering.
The triumph of her speedy turnaround.
The day that she started to eat.
The day that she was tube- and wire-free.
Her homecoming.
Watching the bond develop with her brothers.
The night we had to call 911.
The day that she first completed a feeding without any supplements.
The day she finally hit the growth charts.

I hope I can live through these months remembering all that I have,
And not dwelling on all that could have been.

So, my apologies if I wax nostalgic too much in the next few months,
If I seem teary,
Or if I talk too much about something that doesn't seem as huge to everyone else as it is to me.
This is a glimpse of the pictures that play in my head.
They fly by when I'm falling asleep,
Getting ready for the day,
Watching my sleeping daughter,
Or just at a random moment of no extraordinary consequence.
This, the unstoppable stream.

 

CA '12: Giving Macie Drew a Name and a Blessing

Out of all of the things that we did in our whirlwind of a trip to California, nothing touched me more than a Sunday morning in church when my father, brother-in-law, and Andy's high school friend (among others) put their hands on my baby's head and gave her a name and a blessing.

Sure, I had a beautiful dress.  (Thank you Zulily.)  But I'd seen the dress before we left for California.  I'd put it on her and taken the token pictures when I saw just how beautiful she was.  I took the time to crochet some booties for her to wear, and put those on her as well.

 But there was just something special about that morning.  My sister's family had stayed for the blessing and my grandma had driven up from Vista.  I handed my baby girl to my dad and watched him walk with her to the front of the chapel.

And she was there, she was healthy, she was happy.  She cried not one peep during the blessing.  My dad said that she just stared at him all the way through.

Sometimes I think that I live with an angel.  I know for sure that she is very special.  Sure, all parents say that.  But there's something about my Macie Drew.  Something about the way she has changed me, my family and touched so many just by surviving and thriving.

And then my dad started talking.  There's something you should know about my dad, too.  He can talk.  He is gifted with words, and though he's not much of a talker, when he speaks it is usually moving.  And he spoke about her start, and her fight, and her spirit.  There was something about that moment and hearing my dad speak about what we'd been through that made it soak in, in a way that it never had before.  She is a miracle.  She is so special.  And I know that she is going to continue to touch others.  I just have a feeling that this will be her gift, to help and to impact the lives of those around her.

To be honest, I don't remember the words of the blessing.  I just remember that overwhelming feeling.  I know that she is supposed to be here.  She's my Macie Drew.

A special girl and a special day.