Tragedy

Campbell's brain bleed was considered Grade 1, which is the lowest on the scale.  I was still scared out of my mind, but my nurse explained that many full term babies probably have grade 1 brain bleeds as a result of labor and delivery, but no one can be sure because they don't routinely do head ultrasounds on them, like they do preemies.  That made me feel a little better.  Our neo explained that they would watch it, and probably no intervention would be needed.

I finally got to kangaroo Campbell when she was 7 days old.  It was different than holding her sister.  She was a little chunkier.  I know you are thinking:  A 3 pound baby is chunky?  Compared to her sister, yes!  She was less bird like.  A few ounces on a tiny baby makes quite a difference.  She was still on cpap, and that tube looked so uncomfortable anyway, so I was extra careful when I was cuddling her not to pull it or put any pressure on her little face.

From day one, I always felt that Campbell was suffering.  The pained expression on her face brought tears to my eyes every day.  And who could blame her?  She had been through so much in her little life already.

As we kangarooed, I felt her relax.  I think she had been wondering where the heck I was all this time.  Even though I had whispered encouragement and held her hand daily, there is nothing like cuddling with your mama. 

One of the saddest days in the NICU had nothing to do with our babies.

Campbell remained in Room 1, which was the most critical room.  She shared space with 7 other critical babies.  Babies this small and sick sometimes need surgery.  And when they need surgery, they don't go to an operating room like everyone else.  Transporting these babies can be very dangerous.  So as a result, their NICU room becomes the OR.  The surgeons perform surgery right at the bedside.  And in order to keep the field sterile, no extra people are allowed in the room.

Our nurse had approached us one night and told us that we would not be able to come and visit Campbell the next morning because one of her roommates would be having surgery. 

We came up the next morning for rounds, and spent some time with Lenay, who was now in Room 3.  After lunch, we checked to see if we could go in to see Campbell yet. 

Big, yellow caution tape formed an X in the doorway.  I asked at the nurses' station and was told it would be a little longer because several other emergency surgeries came up.

Yikes I thought.

Afternoon and early evening rolled around.

The big yellow X remained.

My mom was with me, and she and I paced the hallway.

We didn't want to seem impatient, but we went to the desk again. 

My mom asked politely, Excuse me ma'am.  Any idea when we'll be able to get in there?

The nurse looked up with tears in her eyes.

They are finishing up and you'll be able to go in soon.

She paused, and then said, Please count your blessings.

We were puzzled.  What did she mean?  Right then, the door opened, the X came down, and we filed in.  My eyes were focused on Campbell.  She was awake and kicking her little feet. 

At first I didn't notice.  But then I looked around. 

I counted the babies. 

One.  Two.  Three.  Four.  Five.  Six. 

Only six. 

Then I noticed the doctors and nurses.  They all had the same look on their faces.  Tears were being wiped away as they went about their work.  Of course confidentiality prevents them from sharing anything with us, but they didn't have to.

We knew.

A baby had died.

I'm a Kangaroo

It was the day I was to be discharged from the hospital, and I had yet to know what it was like to hold my babies. 

They were four days old.

During rounds, I asked our neo if I could hold one of the babies. I asked him this same question every day.  And everyday he said no.  Except for today.  Today he said yes.  He said I could hold Lenay.

He said YES!

I learned later that the fact that I was going home was the only reason I was allowed to hold her.  She was still severely jaundiced, and needed to be under the light at all times.  But the doctors and nurses really try to help bond the moms to their babies before they leave if at all possible.

The reason I could hold Lenay and not Campbell was that Lenay was much more stable.  She came off her cpap after just one day, and was now only on a nasal cannula.  Lenay had also been moved out of the most critical room that same day.  Campbell remained in the critical room, still on cpap, and under the light.  She was also low on platelets so she was receiving a transfusion.  All of that plus still watching her brain bleed situation made her much less holdable than her sister.

So on Friday August 21, 2009, I learned how to kangaroo.

{ For those not familiar, kangarooing is a way to hold all newborns, but is especially important for premature babies.  The mom (or the dad) takes off her shirt, puts on a gown, and her baby is placed directly on her chest, inside the gown.  The nurses then place warm blankets over mom and baby, recline them in a comfortable position, and you just snuggle in!  This is very beneficial to both mom and baby.  The skin to skin contact has been proven to help babies grow and thrive.  It can also lessen pain.   Not to mention help moms and babies to bond!  Also, holding the baby in this way is known to boost milk production, which is very important for pumping moms who are unable to breastfeed.  For more reading on Kangaroo Care, please visit http://children.webmd.com/news/20080424/cuddline-cuts-preemie-pain


Sidenote: I saw a piece on The Today Show where they said that Kangaroo Care was invented in Australia.  I guess I can see why one would think that, but the concept was actually brought about in Colombia.  Somebody didn't do their research! }

As I got ready to hold my tiny 2 1/2 lb baby for the first time, I remember being scared.  She was so tiny!  I was afraid I would hurt her.  Our nurse was very reassuring.  She won't break I promise, she said as she scooped up my tiny bird like daughter, careful not to pull any of her lines, tubes, or cords, and gently placed her on my chest.

Talk about the MOST amazing feeling.

She was light as a feather.

And warm as toast.

She wiggled a little and then snuggled right into me.

I had been so afraid that she wouldn't know me.

But at this moment I knew she did.

It was like she was saying, Oh Mom, there you are.  I've missed you.

We cuddled and I told her all about our house and her big brother and our puppy and how I couldn't wait for her to come home.  I told her that her sister was doing okay in the other room, in case she was wondering.

When it was time to put her back, I was sad, but I was so glad I had this opportunity.  It meant so very much to me.

Saying goodbye to the babies was very hard.  Even though we only live twelve minutes away. 

When we left the hospital shortly after, it was strange. I had been there for two and a half weeks. 

I had gone in with my babies.  And now I was leaving them behind.

As we drove away, I looked back at the hospital. 

They are in a Level 3 NICU. 
Thats the highest level. 
With top-notch doctors and nurses.
My babies are getting the best care in the country.

As hard as it was to leave them, I knew it was where they needed to be.

The Other Shoe

Both girls were immediately placed on cpap to give their lungs a bit of pressure to help them breathe.  We counted ourselves very lucky to avoid the ventilator.

The next few days were a blur of pumping, sleeping, and staring at my babies in their little plastic houses.

Then the diagnoses started coming down.

Both girls had whats called a PDA, or patent ductus arteriosis.  Basically, its an extra artery in the heart that all unborn babies have.  Its function is to allow blood to bypass the lungs in utero, since the baby doesn't need to breathe yet.  In full term babies, this ductus usually closes when the baby takes her first breath.  Our girls both had wide open PDAs, which had the potential to cause major breathing and digestive problems.

Both girls developed severe jaundice, which is very common in premature babies, and needed bili lights.  They wore masks that resembled sunglasses which covered much of their faces.

Between the cpap and the sunglasses, we couldn't really get a good look our babies, other than those first moments when they were born.

Both of my babies were very bruised from my violent contractions.  In utero, the babies were sort of in a ying yang position: Campbell head up, Lenay head down.  Now as they lay in their isolettes, Lenay's face and Campbell's feet were swollen black and blue.

Both were on IVs for nutrition.

And Campbell had a brain bleed.

The only contact I could have with them was holding their hands for short periods of time.  Having the isolette doors open for very long could drop their temperature.

I longed to hold them.  I yearned to look each of them over from top to bottom.  Hold their little heads in my hands.  Stare into their beautiful eyes.  Count their tiny fingers and toes.

Irrational as it may seem, I felt so much guilt.  I did this to them.

I remember sitting by Campbell's bedside, and the nurse was explaining a priming schedule for feeding and she said, You know.  Because they shouldn't have to be doing this yet.  They should still be inside you.

She didn't mean anything by it. 
I'm sure she had no idea what affect those words had on me.

But as she walked away, I broke down sobbing.

She was right.

They shouldn't have to be doing this yet.
They should still be inside me.

But they aren't.

Instead, they are out in this cruel world, fighting for themselves, and they don't even know what its like to be held by their mom and dad.

My one job was to keep them safe. And I didn't.

I failed them.

Freight Train

We made it 12 more days.

During those of which I was on and off of magnesium sulfate, which is a very nasty but very necessary drug.

We also celebrated Noah's fifth birthday.

And Eric and my ninth anniversary.

Not our most romantic anniversary, but definitely one of the most memorable.



The night the babies arrived was frightening.  My labor was lightning fast.  No one told me that premature labor bears down on you like a freight train.  I dilated from 0-10 in about 2 1/2 hours.  My contractions were hard and fast and stacked right on top of each other.  I had no pain meds.

I repeat.  No pain meds.

I was whisked from antepartum to labor and delivery to the operating room within minutes.

We didn't think my doc was going to make it in time.

I was literally complete and feeling the pushing pains as they were administering my spinal.  On the operating table. 

I was never so happy to see my doctor as he arrived just in time to perform my c-section. 

Lenay Isabella White was born first at 12:05 AM on Tuesday August 18, 2009.  She weighed 2 lbs 9 oz.  She was tiny and beautiful, and I heard her cry right away.  The most beautiful sound. 

Campbell Elisabeth White was born two minutes later. 
She weighed 3 lbs even. 

She did not cry.

Oh God, why isn't she crying?

I craned my neck so I could see her.

She was blue. 

They were working on her.

She had to be resusitated. 

The scariest seconds of my life. 

She cried.  It was much softer than her sister but I heard her.  It was beautiful.

I cried.

They were both whisked off to the NICU and Eric followed, while they finished putting me back together.

Our babies were born at 29 weeks and 5 days. 

And 5 minutes and 7 minutes. 

Every minute counts.

 

Deep Breaths

A short while later we were visited by one of the neonatologists. 

I liked her right away.  She was very kind, and she started off by telling us that her own son was born premature and was a patient in this NICU. 

Wow, I thought.  She's been here.  She knows what this experience is like from the parent perspective.

She explained where our babies were developmentally at 28 weeks. 

She went on to tell me what would happen if I were to deliver today. 

They would have a 96% chance of survival.

They won't be able to breathe on their own so they will need assistance from cpap or a ventilator. 

They won't be able to eat.  Their little stomachs are not yet ready to accept food so they will need IV nutrition until we can start them on a priming schedule.

They won't be able to maintain their temperatures so they will live in a heated, humidified environment until they can.

Wow.  Okay.

I had a lot of questions.

Will we be able to hold them?

Eventually.  Probably not right away.

Will I ever be able to nurse them?

In time you can try.

When will they be able to come home?

Probably around their due date or a few weeks before.  A common misconception is that they must be five pounds.  Not true.  Simply, they must be able to eat well, maintain their temperature, and pass their car seat test.  We send three pound babies home all the time.

Oh.  Okay.

She explained that preemies grow slower because of all the outside stresses on their little bodies.  Not only do they have to continue to grow just like any unborn baby at their gestation, but they also have to learn to breathe, eat, and do all sorts of other things they wouldn't otherwise have to do for a couple more months.

She gave us a lot of good information, and it was important for us to hear it. 

But it was so overwhelming. 

I started to cry.  She knew I was losing it, and she tried to reassure me. 

28 weekers make it all the time.  They have a very high survival rate.  And you know what?  Every day, even every hour they stay inside the womb, they have that much better of a chance.  They are developing at a very rapid rate right now, and every minute makes a difference.  Just while we've been sitting here talking, each of those babies has developed hundreds of alveoli in the bronchioles of each lung. 

I wiped my tears.

Deep breath.

God is in control. 

I am not in control.

Deep breath.

Thank God that God is in control. 

Because I don't think I can do this.

1000 Grams of Hope

Okay.  So where do we go from here?  The whole thing seemed surreal.  Dr. R, the perinatologist, calmly explained that she would do two things for me.

1)  I will arrange a NICU tour.  Take a look around.  Get acquainted.  You can see what a 2 lb, 28 week gestation baby looks like. 

2)  I will arrange a neonatologist consult.  The doctor will come to your room and will be able to address any questions or concerns you may have.

Yes thank you.  I have a billion concerns. 

We toured the NICU, which we had visited before when we had friends with premature babies and more recently, when we took the Twins Class at the hospital. 

But now it was different. 

It was sort of like walking through a house that you are going to buy.  But you don't really want to buy it.  In fact, you want nothing to do with it.  But you don't really have a choice in the matter.  This will be your new home.

Whether you like it or not.

I was traveling by wheelchair, and the nurse wheeled me up to the window so I could get a good look.  A tiny little baby with all kinds of tubes and wires was sleeping in an isolette on the other side of the glass. 

This little guy weighs about 1000 grams, or a little over 2 lbs, she said.

Wow.  Okay.  It really wasn't as bad as I thought.  I had pictured a baby much, much smaller.  I had built it up so much in my head that this actual 2 lb baby looked big!  And considering he was practically naked and hooked up to several machines, he did not appear to be suffering. 

He actually looked comfy.  Warm.  Safe. 

This little 2 lb guy warmed my heart, and somehow I felt a small wave of relief.  I didn't even know him.  Or his family.  But he was providing me with a window into my future.  And giving us some much needed hope.

My first lesson that these little babies are tiny but mighty.

The Beginning

Where to start?  How about the beginning :)

When is the beginning?  To make things simple (for this blog's sake) I'm starting at the beginning of when we became a family of five.  Indeed, a very scary time for us.

The Beginning:

I had a fairly uncomplicated twin pregnancy until about 27 weeks, when I was placed on full bedrest at home due to hypertension.  A few days later, my doc put me in the hospital due to hypertension (which was continuing to go up, despite my bedrest) and elevated protein levels in my urine.  This was enough to diagnose me with pre-eclampsia (or toxemia, as it is more commonly known.)  I was prepared for the long haul: staying in the hospital until the babies were born in about 8-10 weeks.  However when I was admitted, the perinatologist immediately informed me that my rapidly rising protein levels meant that my liver was not functioning right, and it was becoming increasingly unsafe for the babies to stay inside me.  She told me that I would be monitored closely, and that I could deliver any day. 

I Could Deliver Any Day.

Shock.  We were in shock.

I looked down at the ultrasound pictures on my lap.  My babies weighed just 2 lbs and 2 1/2 lbs each.  I looked back up at the doctor and stammered,

"...but I'm only 28 weeks." 

She reassured me that I was in the best place possible, given their pending premature birth.  The Children's Hospital of Illinois NICU is a level 3.  That is the highest level.  Our neonatologists and nurses are top-notch.  Your babies will have the best care in the country.

I could not wrap my mind around her words: the babies would not be safe inside me any longer.  How is that even possible?  Isn't the mother's womb the safest place for a growing baby (or two?)  Why was my body betraying me now, when I needed it the most? 

We felt so hopelessly out of control.  So incredibly helpless.

Clean White

Makes me think of sheets.  Or snow.  Or a fresh new Magic Eraser.

Campbell
Lenay
Eric
Andrea
Noah

Or our family :)  It started out as a joke when I was up on antepartum.  Eric was trying to name our blog and couldn't come up with anything.  I said how about CLEAN (jokingly!) since it is a acronym for the names in our family, including our then unborn baby girls...and to my surprise, he ran with it! 

It now graces our to/from tags at Christmastime. 
Turns out its a real timesaver :)

New Blog!

Welcome to our new blog!  Nothing against our old blog.  Its just that A) Eric's updates were too few and far between for my liking and B) It had been so long since his last post that he actually forgot his password (plus our connecting email has ceased to exist so therefore we have no way of changing said password) so C) Hence the new blog :)

My goal is to update often.  I've been journaling the girls' progress on paper over the past 17 months, but there are several large gaps in my writing.  So I'm hoping this blog keeps me accountable!

Enjoy :)