Sunday, February 27, 2011

Broken Heart

As expected, Lenay's PDA did not close on its own.  Her cardiologist explained to us that as long as she remained asymptomatic (which was really amazing considering how large it was) she would not require surgery until she was older.

They continued to follow her closely of course, with routine EKGs and echocardiograms every month or so. 

At her 5 month check-up and echo, I could tell something was different.  The tech of course cannot divulge any info without the doctor reading the results of the echo, but I asked anyway. 

She simply replied, The doctor will go over everything with you.

Something was wrong. 

It was taking way too long.  She left the room a couple times. 

I felt sick.

She came back in with the doctor.  This is not routine.  He took the wand and performed the echo himself.

I looked down at my tiny daughter on the big echo bed.  She was fine, acting completely normal.

I held my breath and looked back up at the screen.

I've seen dozens of echos between my two daughters, but for the life of me I cannot ever tell what exactly we are looking at.  I can make out the pulsing chambers of the heart, and blood flow when they turn on the color, but that's about it.  I'm wishing for a degree in cardiology right about now.

Our doctor then explained to me that one of Lenay's chambers was enlarged.  This meant that the PDA was taking its toll on her heart.

He sat down next to me.  She needs surgery.  And she needs it soon.

It wasn't registering with me.  I protested: But she's acting fine.  And you said as long as she is asymptomatic...

He nodded and said calmly, Yes but this is just the beginning.  Its better to act now before she becomes a very sick baby.

Deep breath.


I knew she would need surgery.  Eventually.  But see in my mind, we had dodged the baby surgery bullet. 

I just wasn't prepared for this.

Deep breath.

God is in control.

Her surgery took place February 12, 2010. 

We found it so incredibly appropriate that her heart was fixed on Valentine's weekend.  God has a sense of humor, I suppose.   

Eric is better at the technical talk, so I just copied his post regarding Lenay's PDA surgery: Eric's blog

While I had hoped to post from the hospital, the family computer needed a password that no one seemed to know, so I did not get an update on Friday.  Lenay’s surgery was a complete success.  Our day started on Friday at 3:30 am since Lenay could eat up until 4 am and we wanted to make sure she had eaten something.  She went back to surgery right on time and surgery started around 8 am.  They called us from the back with updates every 40 minutes or so and the surgery took the full three hours.  They allowed just one of us back there in recovery, so I went ahead to her room as they did want to observe her overnight.  The surgery was not too bad.  We had some visitors from our church who came and sat with us during the wait which helped to pass the time.  The device was implanted into her PDA.  Two xrays and an echo later, we know that it stayed in place and that it was successfully stopping the flow through the PDA.  Lenay spent most of Friday sleeping, but she did wake up enough to eat three times, which was good.  The only real side effects she showed were being pretty swollen on Friday, mainly from the extra fluids they pumped her full of for the surgery.  Most of that was gone by the next morning and she has shown no effects since.  She never even needed any type of tylenol or anything for pain as she never really cried at all on Friday, just mainly slept.  The worst thing that happened to her is that the Bradley Social Work Dept, at the hospital handing out Valentine cards to the kids, gave her a Valentine for a boy.  Her incision area is so small you can’t even tell where it was.  Other than not being able to take a bath for 5 days, she really has no other restrictions.  Our only real instructions were to monitor and just let them know if she seems to be doing worse than she was before the surgery.  At this point, she is basically the same, no real change at all.  I at least expected her to be more sleepy for a day or two but she hasn’t been.  So that is a huge thing to have out of the way.  She will follow up in two weeks and then then probably just a couple of appointments over the next year at which point they will set her free, as long as all goes well.  She is on a 1/4 of a low dose aspirin tablet once a day for 6 months to help reduce the small risk of a blood clot.  By 6 months, her heart wall should have grown around the device and other than on an xray would never be noticeable, even during a surgery. 

I want to say once again, how lucky and blessed we felt to have access to the wonderful doctors and surgical staff at the Children's Hospital. 

We absolutely adore our pediatric cardiologists.  And we are so very blessed.

Tuesday, February 22, 2011

Big Scare

Campbell had problems with sporadic high heart rates, so her cardiologist prescribed a medicine to help slow and regulate her heart rate.  He told me to start off giving her half a dose, watch and see how she did for a few days, and then slowly work our way up to the full dose. 

Well, I noticed a big change in her right away.  She had only been on the half dose for a day or so and her heart rate was already significantly lower according to her monitor.  And she was acting different.  Sleepier.  Less active.  In fact, I was concerned about giving her the full dose, since it was already having such an effect on her. 

I called the doctor's office to voice my concern, and the nurse asked me to read her the prescription label on the bottle.

As I read it to her, the alarm in her response frightened me.  She explained that the pharmacy had made a big mistake. 

They had doubled the strength of her medication. 

She was already getting the full dose.

Not only that, but they had also printed the incorrect dosage.

She was supposed to get .5mls 4 times a day. 

The label read 5 mls 4 times a day.

Luckily, she never received the 5 mls.  I only gave her .25 mls, what I thought was the half dose, which was actually the full dose, because I was going by what the doctor had told me and not by the label.

So not only did they double the strength, but they also printed 10 times the dosage.

10 times the dosage.

This means that if I had followed the prescription label, Campbell would have received 20 times the amount prescribed by her doctor.

20 times the dose would have killed her.

We filed an incident report. 

And immediately changed pharmacies.

As scary as this situation seemed, it ended up being okay.  By the grace of God, we had averted a major crisis. 

It was a wake-up call for me.  I was reminded: I am my child's advocate.

Thank God for helping me to pay attention, remember, observe, and for nudging me to make the call to the doc.

Our baby girl was okay.  It could have been so much worse.  Thank God for putting the necessary things in motion so that it wasn't.

Sunday, February 20, 2011

Gerd is the Word

GERD is a very common preemie problem.  Its not limited to preemies of course.  Noah had what I would now call a touch of reflux - that kid wore a bib over every outfit until he was a year old.  Whenever he got his picture taken, we would quick, take his bib off to snap the picture, and immediately replace it.  And we thought that was "bad" reflux.  Turns out he didn't even hold a candle to his baby sister.

I want to point out that I am in no way exaggerating this. 

I am being very literal here.

Campbell would spit up entire feedings with such force it would come out both her mouth and nose.

It would soak everything: outfits (hers and ours), bedding, carseat, furniture, carpet, you name it.

It would back up into her nasal cannula.  It was thick and gross, and it would clog her airway and she would desaturate.  She required suction to clear her airway most times.

It was also painful for Campbell, and even if nothing was actually coming all the way up and out, we could tell the acid was coming up far enough in her esophagus to make her grimace and hold her breath, also causing her to desat.

We did everything we could to help our little GERD baby.  Her feeds were thickened, which added weight to the contents in her stomach.  The idea is that gravity would help keep it down.  She was on reflux medication, which didn't do anything for the actual spitting up, but it would help to make it less painful.  We needed to avoid laying her laying flat on her back because that caused the acid to come up, making the reflux worse.  And sitting up put pressure on her belly, making the reflux worse. 

So what do you do with a baby who can't lay down and can't sit up? 

Well, she spent a lot of time propped up on a boppy.  And Eric's dad made a support for her bassinet mattress so she could lay at an angle. 

But putting her in her carseat was the worst.  Which was obviously a necessary evil.  The angle put just enough pressure on her belly to make her lose her lunch.  Every time.  We anticipated it, so whenever we were getting ready to leave the house and getting her in her seat, we were ready with the neccessary clean-up items. 

After a few months of this, when I didn't think I could take any more, I asked our pediatrician how long it would go on. 

He replied, If I tell you, you have to promise not to hit me.

He then explained that GERD doesn't usually get better until kids are standing up and walking. 

I did not hit him.  But I felt sick to my own stomach.

We dealt with this multiple times a day for many, many months. Once we were out of hibernation, and back out into the outside world with our babies, we grossed out many people.  Our pediatrician once described GERD as "socially unacceptable."  Yeah, I'll say.  We sent many people running away in horror after stopping to ooh and ahh over my adorable twins, only to witness the blue eyed one projectile vomit all over everything.  I heard a lot of "Thats not normal" and "You need to call your doctor" when passerbys stopped to gawk as I got her all suctioned out and cleaned up.

And her reflux caused more than just social awkwardness and boatloads of laundry.  It was so bad that it was affecting her feedings and subsequently, her weight gain.  There for a while we were making weekly trips to the pediatrician because he was very concerned about her weight.

We were referred to a pediatric gastroenterologist for more testing.  He was concerned about a possible anatomical problem, but all of her tests came back normal.  He changed her medication and put her on pediasure for extra calories, which seemed to help her gain weight.

We also started seeing a speech pathologist for feeding therapy because she was fighting through her bottles and would refuse anything on a spoon. 

She just hated eating.  It was awful.

We worked with her GI and speech path on therapies because part of her problem with eating was now a learned behavior.  See, over time she learned that eating would cause refluxing (translation: pain) and so apparently her logic was if she didn't eat, it wouldn't hurt.  I learned many tips and tricks to get her to eat, and how to sneak in extra calories.

After about a year, the reflux finally started to taper a bit.  She got down to only vomiting about once a day, which was "nice."  And now, at eighteen months, I safely say that she has not spit up in several months!  I think it is due to a combination of therapy, medicine, and slowly outgrowing the reflux. 

Thank you God!

Once again, I am reminded how lucky we are to live near Peoria, where we have access to these amazing pediatric specialists and therapists.  I know sometimes families drive hours to get access to these doctors, and here they are right in our backyard. 

Wednesday, February 16, 2011


Preemies are still preemies after they leave the NICU.

Makes sense to most people.  But honestly it took me a while to grasp this concept.  The entire time we were in the hospital, all I could think was:

Let's just get them home.  Then everything will be fine.  

For some reason, and maybe it was just my way of dealing with the stress of the hospital, I had this notion that once they came home, they would be just like any other babies who are born full-term and healthy.

It didn't take long for me to realize I was wrong.

Life with preemies at home can be complicated too.  And sometimes it can seem even more so when you don't have the security of knowing there's a doctor or a nurse within arms reach whenever you have a question or concern.

Preemies need to eat every three hours.  And not just like every full-term newborn eats every 3 hours and then if they sleep longer its okay.  Its not okay for preemies.  You set your alarm and you wake them up. 

We had one on fortified breastmilk/nursing and one on a specialized formula.  I actually made posters and taped them to the wall in the kitchen, diagraming formulas for each batch of food for each baby.

They were both on multiple medications multiple times per day.  Campbell came home on a diuretic because she retained fluid on her lungs.  And the diuretic threw off her electrolytes, so she needed sodium chloride to balance out.  Campbell was also on reflux medication.  Lenay and Campbell were both on cardiac medicines.  Some meds were given twice a day, some four times a day.  Keeping track of which baby got which medicines at which time was sometimes nerve-wracking.  I also made medicine posters for the kitchen wall to help keep everything straight. 

I kept logs in color-coordinated folders for each baby to track feedings, diapers, and meds.

Home Oxygen.  Campbell was hospitalized for a week at Thanksgiving on PIC for pneumonia.  When she was discharged, she brought home a new accessory: home O2.  We loved it, because it meant she could be home.  But we soon realized how much more complicated our lives had just become.  The medical equipment company brought us everything we needed, which included a home concentrator.  Its basically the size of a dehumidifier (thats what it looked like to me) and it plugged into the wall.  It pulled the nitrogen out of the air and somehow turned it into oxygen for my baby.  We also had big and little oxygen tanks.  The big tanks were for if we lost power.  We sent a letter to the power company explaining that we needed first priority to have our power restored in the event of an outage, since the concentrator was helping to keep our baby alive.  The little tanks were for anytime we left the house.  The oxygen prevented Campbell from traveling very far within the house.  She spent most of her time out in the living room, plugged into her concentrator and monitor.  Due to her cannula tubing only stretching so far, she did everything in that 5 foot area: feedings, diapers, naps, and baths, until bedtime when we would wheel her bassinet and concentrator into our room for the night.   

Both were on monitors.  So anytime you pick up a baby, you need to pick up the monitor too, or else you will rip the electrodes right off her very delicate skin.  Which we did many times.  Sorry babies!  Lenay was on an apnea monitor.  Campbell was on a pulse ox monitor, which was exactly like the apnea monitor except it had an oxymeter on it as well.  The pulse ox was basically like a bandaid that wrapped around her big toe and was then connected by a cord to the monitor.  It read her blood oxygen saturations.  Anytime it dropped below 82, the alarm would go off.  All I can say is: bane of my existence.  Anytime the baby kicked her foot or moved the slightest bit, the pulse ox connection would be interrupted and the alarm would sound.  Honestly I wish the monitor company would let a parent design a new pulse ox because it was so inaccurate.  I have lots of ideas about that.  The monitor would fill up after about 300 alarms (mostly false, but some real), and need to be downloaded at the equipment company, which was about 3 times a week.  Yep - thats 150 alarms a day.   

To give you an idea of how we felt about the monitor, Eric and I often fantasized about taking it and a couple baseball bats out into an empty field and going all Officespace on it.

Campbell was on the pulse ox monitor for many months.  So during that period, she could only wear sleepers with snaps, to allow the bundle of cords and tubes to come out the crotch.  She could also only have sponge baths due to all her cordage.

Both were in carbeds. Carbeds are for babies who don't fit into a carseat yet.  Not just for babies under 5 lbs, contrary to popular belief.  Campbell was well over 5 lbs by the time she left the NICU, and she was still too small for her carseat.  The bad thing about carbeds is that they are stationary.  In other words, you can't pop them in and out of the car like you can today's carseats.  This made leaving the house with two babies very interesting! 

Reflux.  Oh my goodness, reflux.  I have so much to say about it that I think it needs its own post.  All I can say is if you have a baby with GERD then you know what I am talking about!

RSV shots.  Vital for preemies because their little compromised immune systems make them very susceptible to this virus, which can be deadly.  A home health nurse would come over once a month for 5 months to administer the shots, called Synagis, which protected them by giving them the RSV antibodies.  This is very different than a flu shot, in which you are injected with the weak or dead virus.  RSV shots are simply the actual antibodies, and their protection lasts about 30 days, hence the need for a shot every month during cold and flu season.  And these shots are not cheap!  $1200 a pop.  Per baby.  Per month.  Yep - thats $12,000, which is ridiculous. Thankfully our insurance covered most of the cost.

We hibernated that first winter.  The babies didn't go anywhere except for their doctor appointments.  We were very careful to have Noah change clothes after coming home from preschool, and we bleached and sanitized everything.  We even debated about whether to attend the holidays with our families.  It might seem a little crazy to some people, but the way we looked at it was that we fought so hard to get these babies out of the hospital, we would do everything in our power to keep them out.

Tuesday, February 15, 2011

The Pump and Chain

During my pregnancy, I always wanted to nurse my twins.  I had breastfeeding experience, having nursed my son until he was 13 months old.  Breastfeeding twins would be much different though.  I read many books on the subject.  I also talked with moms who successfully nursed twins. 

It would be a challenge. 

But I was up to it.

Unfortunately when our babies were born early, things changed.

Prematurity complicates things.  Big time.

Like I said, my babies couldn't even eat when they were born.  And then even when they could, they could only take a few milliliters at a time.  And the breastmilk needed to be fortified to add extra calories to help them grow.

I started pumping 2 hours after my c-section.

I wanted my babies to have my milk. 
I mean, it was the least I could do for them.

I continued to pump around the clock.  I set my alarm to get up in the night.  I had an awesome supply.  2 days into it, the hospital informed me I needed to start taking my milk home because I had filled up their freezer. 

We bought a deep freeze.

And I literally filled it. :)

Then we started storing milk in our family members' freezers as well!

The pump went with me everywhere.  I pumped in all kinds of places.  Including the moving car.  (Man did I get some looks!)

Lets just say I definitely gained a new appreciation for dairy cows.  :)

I planned everything around the pump.  Pump as soon as I get up.  Pump before I leave the house.  Pump at the hospital, several times.  Pump before I go to bed.  Pump in the night.

Pump.  Pump.  Pump!

The NICU furnishes bottles for pumping moms.  100 to a box.  We went through 20 boxes easy. 

Thats 2000 bottles!

When it was time to start trying to nurse them, lactation provided me with preemie nipple shields.  These help to fit their tiny little mouths.  By the time we left the NICU, I was nursing Lenay a couple times a day, and we continued to do that for 3 months.  Campbell was a different story (like usual!)  She was on the specialized formula, and also needed thickened feeds due to her reflux.  I tried to nurse her anyway, but it just wasn't happening.  Nursing Lenay wasn't easy either.  Preemies sleep a lot, and keeping her awake through a feeding sometimes seemed impossible.  In order for me to keep my sanity, I ultimately decided that nursing these babies just wasn't in the cards for us. 

But I continued to pump for many months so my babies could have my breastmilk.  Campbell came off the Neocate after a few months and she was able to have breastmilk thickened with a product called Simply Thick, which can only be purchased through the hospital pharmacy.  I really recommend this product, by the way, even though it is expensive.  Rice cereal will not thicken breastmilk due to the enzymes in the milk.  I also tried a thickener called Thick-it, which was cheaper, but it made the milk lumpy.  Simply Thick was the only thickener that created a good consistency, and Campbell liked it.  It was totally worth the extra cost!

I really believe that my breastmilk helped protect my babies from sickness.  And when you are dealing with preemies, that protection can mean staying out of the hospital.

I pumped for many months.  It was tedious.  But totally worth it.

Sunday, February 13, 2011

Pay it Forward

What an inspiration that family has been to us over the last year. 

If they only knew. 

How many times we have talked about that day.  How many times we remembered them and their sweet daughters.  How much inspiration they gave us when times were tough.  Amid the craziness of life with two preemies and all that goes along with it.  Specialists and therapists and in and out of the hospital.  Remember the triplets.  Tests and illness and surgery.  The triplets.  Monitors and medicine and home oxygen.  Triplets.  The impact they had on us - it was great.  Unbeknownst to them. 

If they only knew.

Well, in October we participated in the Small Wonders Miracle Walk, a fundraiser for the NICU at the Children's Hospital of Illinois, held at the Riverplex in Peoria.

We were chosen as the ambassador family, so we had the opportunity to do some PR stuff and share our story.  We were also on the steering committee, helping with registration.  It was kind of chaotic, keeping track of the kids with all the activities going on. 

But anyway amidst the craziness, Eric comes up to me and says,
Look over there. 

I look.

Its them.

The family.

A year has gone by.  The girls are bigger.  But no mistake.  Its them.

I am instantly drawn to them.

I want to talk to them.

I have to tell them how much they have impacted our lives.

I have to!

I hesitate.

Will they think I'm crazy?

I shrug it off.  I march right over to the mom. 

You don't know me, but I know you, I say.
(yeah...that does sound a little creepy)

I'm nervous.  How can I convey to her the impact that her family has had on ours?  The words are spilling out of me so fast I just hope she can keep up. 

You guys.  Last year.  At the NICU.  Us.  Bad day. 

I tell her the whole story in a rush and I'm crying and I look up at her and I see tears streaming down her face.

We hug.

Then she tells me the most amazing thing:
they had that same experience when her babies were in!

Pay it forward.

We talked about the kids for quite a while, and she told me that even though they live a ways away from Peoria, whenever they are traveling through town, they always stop at the hospital.  If she sees someone in the waiting room at the NICU, she stops and gives a hug and a kind word.

I just want them to know: I've been there, she said.

She is an amazing mom and a very sweet person.  I was so glad we got the chance to finally meet officially and that I was able to share our story and the impact her family had on ours.

When it was time to go, I felt like we were old friends.  She told me that when she got home she was going to call her sister, who lives in India, to tell her this story. 

I was so very touched and as we were walking away Eric hugged me and said,

Well how do you like that, our story is making it halfway around the world.

Thursday, February 10, 2011

Letting in the Light

I posted this story on facebook a few months back, so if you've already heard this you have my permission to x out :)

But it is my absolute favorite story from our NICU days, and I really want to share its profound effect on our family.

Lenay left the hospital after 6 weeks, and thats when a new chapter began.

The Chapter is called Stagnation.

Up until this point, it seemed that for the most part everyone was moving forward.  Getting better.  Coming home.

Until now.

See, Campbell wasn't really getting any worse. 
But she wasn't really getting any better either. 


She had been there so long that the nurse practitioner lovingly referred to her as the "room supervisor."


Why didn't she want to get better?

Why wasn't she fighting to get home?

Weeks had gone by since Lenay went home.  And yet still here Campbell lay.

At this point in the game, having one baby at home and one in the hospital made it very difficult for Eric and I to visit Campbell together.  But on this particular night, we did. 

We had lots of questions for our little girl, and she just wasn't doling out any answers.  We were at a point where we couldn't see past today.  She wasn't coming home anytime soon.  I had lost my vision. Getting bigger, walking, talking?  It just didn't seem possible anymore.

It was a very dark moment.  A darkness that words cannot describe.

All Eric and I could do was sit in silence feeling sorry for ourselves and stare at our sweet, sleeping baby.


Miraculously, right then a family came onto the unit.

They were visiting the nurses station, which was just outside the open door to Campbell's room.

Amid the constant muted beeps of the monitors that over time we had learned to tune out, we couldn't help but overhear the conversation.

They were a nice looking family, with 3 beautiful daughters: triplets, who looked to be about 2 years old.

The mom and dad were taking turns telling the nurses their story. 

My ears perked up.

It sounded so familiar.

The mom had stayed on antepartum.

The babies were born at a similar gestation to our girls.

The babies' birthweights were about the same as ours.

They were telling our story.

I looked at this family.  Their girls.  They were big.  They were healthy. 
They were beautiful.

A window filled with light suddenly appeared in this dark place.

God knew we needed this family right now.  We needed to hear their story.

This too shall pass.

I looked up at Eric.  His eyes met mine with tears. 
We did not speak but we had the same thoughts.

Could this be our future?

Could we be this family, visiting the NICU down the road.  Telling our story. 

Opening a window and letting in the light for others.

As they walked away, we just sat back and breathed.

We're gonna be okay.

The most amazing part of this story is that the family had no idea that we were listening in.

Absolutely no idea what effect their story was having on us. 

They thought they were just sharing their story with the nurses. 

But in fact, they were providing us, a family in need, with a pivotal moment that we would never ever forget.

Tuesday, February 8, 2011


Campbell is the name that Eric and I fell in love with years ago.

As soon as we found out that one of the babies was a girl, Campbell was her name.  :)

I pictured a little girl with dark brown hair and bright eyes.  It was a glimpse of my future daughter.  And she was beautiful.

And from the moment she was born, I knew she would be different from her sister.  It was obvious that she didn't want to be born yet.  I've always felt that if she'd had it her way, she'd have stayed in a while longer.

As time went on, that same, laid back personality shone through.

Which I suppose in some ways, can be viewed as sort of refreshing. :)

At the same time, it can be maddening!  Eric and I have said many times that God is teaching us patience through this little girl.

Many times during her NICU stay, she was referred to as "a puzzle."

We were very thankful that her PDA was closed with medicine, and her brain bleed did not worsen.

She remained on cpap for 10 days.  After which, she was weaned down off her nasal cannula. 

And put back on oxygen. 

And weaned off. 



And so on.

Would this baby every be able to breathe on her own?

One of her problems was desaturations.  That means her blood oxygen levels would drop too low. 

And as a result of being on so much breathing support, she developed scarring in her lungs known as Chronic Lung Disease.  Her lungs would eventually heal, but its a very slow process.

It was explained to us that with twins, it is not unusual for Baby B to have more problems.  Being the second one out can mean a lapse in blood flow and oxygen.

Another problem of hers involved feeding.  She started on a feeding schedule, which involved giving her small amounts of fortified breastmilk through a feeding tube.  Each day, the amount was increased.  After the fourth day, her belly was distended and she had whats called green "aspirate" which meant her food was not moving out of her stomach very fast.  This can be an indication of a very scary sickness some preemies get called NEC, which can be deadly.  A chest xray showed dilated loops, another indication of NEC. 

We waited on pins and needles for test results.  (During which I developed a bad case of mastitis.) 

She did not have NEC.

Thank you God!

She was taken off her feeds, and put back on IV nutrition in order to let her premature digestive system regroup.

After a week, she restarted her feeds.  After the fourth day, she had a distended belly, green aspirate, and dilated loops.

She was taken off her feeds.  Back on IV nutrition.

No NEC.  Our neo was worried about an anatomical problem in her intestines. 

lower GI was performed.  It was normal. 

A week later, feeds were restarted.  Fourth day, distended belly, green aspirate, dilated loops.

Upper GI performed.  Normal.

Our doctors were puzzled by her.  Our resident (whom I adored) stayed up with her all night once, trying to figure her out.

It was ultimately decided that her premature digestive system was having problems digesting breastmilk.  Which at first, I had a hard time with.  Isn't breastmilk supposed to be the most digestable food?  And preemie breastmilk is specifically made for these preemies?  She was placed on a specialized (in other words: very costly) partially digested formula called Neocate.

Amazingly, that did the trick!  Problem solved.  She remained on Neocate for 3 months.

Once she started nippling (taking food by bottle), she once again struggled.  She just didn't want to eat.  She fought it.  Every bottle, every day.  It was so frustrating!

After much observation, it was decided that she was having reflux problems and therefore just wasn't comfortable eating.

Campbell ended up staying almost 4 weeks longer than her sister.

10 weeks in the NICU.

This beautiful little puzzle was teaching us a load of patience.

Sunday, February 6, 2011


Lenay was named after my dad.  Which is so appropriate, given her personality.  (My dad's name was David Len Cease.  Len was taken from his grandfather's name, Leonard, a man whom my dad cherished.  My dad died of AML at the age of 57, just 2 weeks before Noah's first birthday, and 4 years before the twins were born.  He is dearly missed.)

Dad and Noah :)

Lenay is our little fighter.  Always has been.  From minute one.

And she's always been the first to do everything.  Pretty typical for Baby A.

(Babies are labeled alphabetically in birth order.  Even after we gave the babies names, Baby A and Baby B White graced their charts and wristbands.  And even once their names were recognized by the hospital, they were still Lenay A White and Campbell B White!  They so desperately don't want to mix anything up.)

Lenay was always super active in utero - it was hard to get a good look at her on the monitor because she was always moving.  And she's always in a hurry.  She was in a hurry to be born.  And even now, she just can't ever sit still. 

Just like her namesake!

Lenay's PDA did not respond to medicine, which was bad news.  The good news was that even though her murmur was loud and her PDA moderate, she was not presenting with any breathing or digestive problems.  So as a result, our neo took the "wait and see" approach.  She was closely monitored by cardiology with routine EKGs and echocardiograms, and cardiology would continue to follow her after she left the NICU.  It was unlikely that her PDA would close on its own at this point.  But as long as she was asymptomatic, we could wait on the heart surgery until she was bigger.

Other than that, Lenay's NICU stay was fairly uneventful.  She moved up on her feeding schedule nicely, and I was able to nurse her a couple times a day by the time she was discharged.

(Sidenote: The nurses put hats on the babies to help keep them warm.  The hats are just random, from the NICU's stash of donated clothes, but we found it amusing that Lenay somehow ended up with a Caterpillar hat, the company at which my dad worked for 32 years :)

She was doing so great that our neo didn't even think she needed to be sent home on an apnea monitor. But being the neurotic mom that I am, I insisted on the monitor for our piece of mind.  :)

I mean come on, she still only weighed 3 lbs!

She did need hernia repair surgery a few days before she left the NICU.  Which she breezed right through.

Its funny.  When I was nearing the end of my shortened pregnancy and we were praying over these unborn babies, I was so much more worried about Baby A.  She was the tiny one. 

Will she make it? 

Does a 2 lb baby have what it takes to fight for her little life?

The answer:

By the grace of God, she absolutely does.

Friday, February 4, 2011

Words To Live By


One thing I've learned from talking with other NICU families is this: It doesn't matter if you are in the NICU for one day, ten days, or ten weeks.  It takes a toll on your emotions just the same, and it can seem like forever.

The NICU rollercoaster is something that almost every NICU family experiences from time to time.  The doctors and nurses refer to it often.  And I must say that it most definitely describes our NICU experience. 

Your baby can be doing great, progressing well one day.  And you come in the next day to find out she has taken two steps back.

She's back on oxygen.

Or she's been taken off her feeds.
This is normal.

To be expected.

But every single stinkin time, it took us by surprise.

It was so frustrating.


Never trust a preemie, I once heard someone say. 

Its because their little premature systems are still working everything out, so they can be unpredictable.

And when you have multiples, this rollercoaster is magnified.  There were many days when one baby would be doing great.  That same day, the other baby was backsliding. 

We felt so torn. 

Happy for the first baby, sad for the second.

Such a strange feeling:

Being split right down the middle.

Wednesday, February 2, 2011


I absolutely love this picture.

I have it in a frame on my desk right here by my computer.  I look at it often.

Its our first picture as a family.  :)

The girls were a month old.

You probably can't tell, but just getting the babies together for this picture was quite the production.  Even though Campbell had been moved over to Room 3 with Lenay, and their beds were side by side, their many wires and tubes often prevented something like this from taking place.  And Noah was only allowed to visit the NICU at certain times, so the fact that we were able to coordinate all of this was just short of a miracle. 

Our nurse made it happen.

It meant so very much to us :)

Nurses make many things like this happen for families in the NICU. 

Every day.

Many times its something simple. 

Like a pretty purple handmade card posted on the bed that says, "I have my own clothes from home.  Please dress me in them.  Thank you, Campbell." 

It might not sound like much, but its a big deal when your baby is "old enough" to wear clothes.  Its an important milestone in a preemie baby's life.  And wearing clothes from home is one step closer to actually coming home!  And knowing that our nurse took the time to cut, mat, print, and embellish that pretty card meant a lot to me.  We saved it, and will keep it forever.  :)

Other times its something more serious, like making an extra call to find out a time of an important test, just so the family can be present for the baby's transport.

No matter if its big or small, these things mean so much to families.  Speaking firsthand, there were many times when these acts of kindness were just the thing we needed at that particular moment in time. 

Nurses are the heartbeat of the NICU. 

One thing I learned from the both the nurses in the NICU and also on Antepartum, is that many of them have experienced this from the other side.  Several of my Antepartum nurses told me about their own hospital bedrest experience.  And many of the NICU nurses told me about their own preemies.  Some of them were already in nursing at the time and then switched over into that field, while others went back to nursing school as a result of that life-changing experience. 

Hearing their stories had a real impact on me.  Some had good outcomes, some had tragic outcomes.  But nonetheless, their experience changed them in a way that made them want to help others endure similar situations.  Seriously.  What a God thing :)

When you are in the NICU and considered "long-term" - you are able to choose whats called a primary nurse.  This basically means that if your primary is working on any given day, he or she will most likely be your baby's nurse.  Families like us appreciate the consistency a primary nurse provides.

Our primary nurse (Tracy) was amazing.  She was with us through thick and thin, and we have kept in touch since the NICU days. 

We think of her as family, and she will forever have a special place in our collective heart :)