Monday, March 28, 2011

The Flux Capacitor

We are going. 

Back to the future.

Which is actually the present.  :)

So here's where we are with the girls.  In real time. 

Campbell is off of her cardiac medicine.  (Yay!)  And she is currently being weaned off her prevacid.  (Yayy!!)  She is very close to being med free for the first time since birth.  That is an awesome feeling my friends.

Campbell is still being followed by her cardiologist.  She goes back to see him in April.

Campbell is also still being followed by her gastroenterologist.  Our last appointment was a couple weeks ago, and he told me at that time that he would like to see her on the growth chart for weight by the time she is 2 years old.  (Me too man!)  We go back to see him in May, and at that time we may possibly be able to switch from pediasure to regular old milk.  Our wallets would like that very much.

Campbell is also seeing her physical therapist and her speech pathologist for feeding therapy once a month.  She is also scheduled to see her occupational therapist for another evaluation in April.  Her PT has been very happy with her progress and said he would continue to see her until she starts walking.

Lenay is still on both daily aspirin and cardiac medicine for her PDA closure issue.  She goes back in for a sedated echocardiogram in April, and we are praying for some good news.

And we also have another child.  :)  His name is Noah, in case you haven't heard of him.  He has sort of been in the background on this blog so far, but he is actually quite an important player.  He is such a big help with the babies and he absolutely loves being their big brother and protector.  Eric and I try to do fun things with just him on a regular basis to remind him just how important and special he is to us.  Whenever we are out in public as a family, people have a hard time seeing past the twins.  As parents of twins, we've learned to expect random strangers to stop and ooh and ahh over the babies, and I'm always sure to point out the big brother, and what a good job he does being just that.

This blog is very therapeutic for me.  :)  It has helped me to count our blessings.  When I think back over these last 19 months, and how much our lives have changed, I can't help but smile.  God has given us so much to be thankful for.

Roads?  Where we're going we don't need...roads.

Wednesday, March 23, 2011

The Big One

August is the craziest month at our house. 

Eric and I got married in August. 

Then Noah was born in August. 

Then Lenay and Campbell were born (unexpectedly) in August.  (We wanted an October birthday, darn it!) 

School starts in August.  Can we cram anything else into August?

Turning one year old was kind of a big deal.  :)  It was such an important milestone for the girls!  They had come so far in those twelve months.

They had a Baby Einstein theme :)

I had taken pictures of the girls together every month of their life, and we displayed those pictures on a Baby Einstein Caterpillar for everyone to see.

I made a picture collage for each of the girls on large canvases.

I put together a tribute to the NICU, complete with one of the tiny sleepers Lenay wore when she was still under three pounds.

We had invited our primary nurse from the NICU, Tracy.  She had emailed me ahead of time to tell me that she would be unable to make it, because she had to work.  We were disappointed that she couldn't make it, but we understood she had other tiny babies to take care of too.  :)

Amid the chaos of the party, I was in the kitchen, getting the girls' cakes ready for them to mess, when Eric walked in the back door and said:

Look who's here!

I turned around.  It was Tracy!  I screamed.  :)

She was still in her scrubs.  She had convinced her charge nurse that she just had to get off early so she could go to her babies' birthday party!  <3

Words could not describe how excited I was that she made it!  She had been with us from the beginning.  So it was only right that she be there for their birthday.  And she had helped us through so much.  She took excellent care of our babies.  And us. :)  We love you Tracy!

The babies had a great day of celebration. 
What a year it had been!

Sunday, March 20, 2011


One of the biggest moments of the year for us was the opening of the Milestone building for the Children's Hospital of Illinois in August 2010.  This was a project that had been in the works for many years, and we were able to watch much of its development over the previous year, during all of our trips to and from the hospital.  And when the work was finally completed, we were able to take a couple tours of the new facility, and then we were there to help transition the NICU families from the old unit to the new unit on the day of the big move.

A lot of work and planning goes into moving the hospital's tiniest and most fragile patients, and everyone involved did a fabulous job.  Our job, as NICU graduate parents, was to provide support for the NICU parents as their babies were transported through the many halls and elevators to their new home.

We were very excited to show these families all of the perks of the new NICU, and these families that made the transition were for the most part also very excited to make the move.

The old NICU was basically 5 large rooms, containing anywhere from 4-8 babies or more in each.  They were referred to as Room 1, Room 2, Room 3, Room 4, and 1218, which was on a different floor.  There was no such thing as privacy.  The new NICU is set up completely different, with "neighborhoods" and each baby has his or her own room.  That's right.  Private rooms for every baby!  And they have twin rooms also, so parents don't have to divide their time between rooms anymore. 


The new unit is state of the art, and it is beautiful.  :)  We were so excited to be a part of the transition.

But I have to say that participating in this monumentous event stirred some feelings in me that I did not expect.

As the babies were paraded out of the rooms, I felt surprisingly sad.

Seeing Room 1, the most critical room, where both Lenay and Campbell spent their first days of life, empty?

It made me feel empty too.

And Eric and I walked the very last family out of 1218, where Campbell spent her last few weeks before being discharged about a year before.  As we did, I glanced back at the now vacant space, and the memories came flooding back.  We had been there for so many weeks.  So many emotions. 

Finally taking Campbell home to join her sister and brother after 10 weeks in the hospital so we could finally be a family.  It happened right here.  In this room.

And now it was empty.

It can be compared to buying a new home.  You are really excited about your new home.  It is nicer.  It is bigger.  It has so many things that you didn't have in your old house. 

But you have so many memories in that old house.  Maybe you got married or started your family there.  And it can be hard to leave it!

Like I said, it really took me by surprise.  I didn't expect to feel that way about the old NICU.  Part of me felt sad that when the girls get bigger and we take them back to visit, they won't be able to see where they got their start.  Where their mom and dad sat at their bedsides and stared at them in their little plastic houses.  And held their tiny hands through the open isolette doors.

But I am so happy for the current and future NICU families.  They will never know the old NICU and will probably never know how good they have it in the new facility, but thats okay :)  They are making their own memories with their sweet babies and thats what is important.

Wednesday, March 16, 2011

To You, My Sisters

My good friend introduced me to this beautiful poem.  Thank you, Tanya.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my sisters.

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs and “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox or ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “Welcome to Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbor’s front doors on Halloween, and we have found ways to help our deaf children form the words “Trick or Treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began, wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we always keep the faith. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and homeruns. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Monday, March 14, 2011

As Long As Its Healthy

How many times in your life have you had this conversation:

"Congratulations I hear you are expecting!  Do you want a boy or a girl?"

"It doesn't matter. As long as its healthy!"

Its sort of cliche, I suppose.

I've had this same conversation many times in my life.  From both sides.  I was the pregnant mom.  And I was the one talking to the pregnant mom.

It wasn't until after the twins were born that I really sat and thought about those words.

As long as its healthy. 

What do you mean by that?  Do you mean that you don't really want the baby if she's not healthy?

Send her back please.  I'd like a healthy one.

If you've ever experienced a hardship of any kind in your life, and I'm quite sure you have, then you know that sometimes we take things for granted.

Unfortunately most often, until we've experienced such a hardship, we don't realize it.

For example, your heart is beating.  Your lungs are breathing.  You might have traveled this far through the pages of your life and you've never given a second thought to your beating heart and your breathing lungs.

Me neither.

Until I was blessed with babies with heart and lung problems.

What a blessing.

God's reminder that, oh yeah, this is what He is doing for me.  Every second.  Of every day.  Of my entire life.

See how much I love you?

How many people go through their entire life and never realize the power of the gift of a beating heart.  Of breathing lungs.

How blessed I am that I do.

My friend Kelley and I have discussed this in detail.

The blessings of preemies.

See, her daughter was born premature around the same time as our girls. 

And we have walked this road together.  The rollercoaster of the NICU.  The ups and downs of life with a preemie (or 2) at home.  The feelings of helplessness when taking your baby back to the hospital after working so hard to get her out.  The gripping fear when hearing a baby's diagnosis.  The unknown.  The trust that we must place in God. 

The amazing education we have been given on account of these tiny, beautiful beings. 

This education is two-fold:

It is medical.

And it is spiritual.

Early on in her daughter's precious life, Kelley's pediatrician spoke to her about the future.

He said, "By the time you get through this, you will be a cardiologist, a neurologist, and a pediatrician all rolled into one." 

Boy was he was right.  Just ask Kelley about their amazing journey.  You can read her blog at Fairy Tale Endings.

And what the heck is a PDA anyway?  I thought it was a phone.

Turns out its a tiny yet very important vessel that keeps babies alive in utero.  And amazingly, it is engineered to close as soon as the baby takes her first breath so she can stay alive. 


This is just one of the many examples of the miracle of life.

I've never questioned the idea of humans being created by God, but taking this journey with our daughters has put an exclamation point on it.

So while its easy to see that healthy children are always blessings, please remember that children with diagnoses are incredible blessings too.  They open up many eyes to a whole new world.

How blessed are we :)

Tuesday, March 8, 2011

Developmental Delays

Its funny how people assume that twins are the same.  They should grow at the same rate.  They should be doing the same things.  Because they are twins right?

Its okay.  Sometimes I am one of those people.  :)

Sometimes I have to remind myself that its okay if they aren't the same.  Just because they shared a womb doesn't mean they will share everything after they vacate it.  They are different people.  They are not the same.  Its okay!

Well my twins have consistently been about a pound and an inch apart for most of their lives.  It might not sound like much, but on little ones a pound and an inch looks like a lot!

Lenay has pretty much done everything first.  First to roll, sit, crawl, stand, walk, and talk.  Again, very typical of Baby A. 

Campbell has consistently been later to do all of these things.  And some of these things she still has yet to do.

But that's okay.  It took me a while to come to terms with this.  Its okay!  Like I said before, this child is teaching her mother some much needed patience.  :)

But last summer, when the girls were about 10 months old, it was becoming apparent that the gap was widening greatly between the two.  Lenay was sitting and transitioning to crawling with no problems.  She was standing and cruising.  She was eating all kinds of food.

Campbell was rolling a little.  And that was about it.  She did not sit up.  She would not bear weight through her legs.  She had no interest in food. 

I was scared.

I talked with our pediatrician about a developmental screening.  If a baby has a 30% delay in some aspect of development, then she qualifies for early intervention services.

At 10 months old with an adjusted age of 8 months, Campbell had a 30% delay in gross motor skills, and 100% delay in personal care, which included eating.  She was referred to a developmental therapist, a physical therapist, a speech pathologist for feeding therapy, and later an occupational therapist.

As I've said before, these therapists have been a wonderful addition to Campbell's medical care team.  Its mostly home program therapy, but we do go in and see the therapists once a month.

When she was first evaluated, her therapist told me she was at a 0 months level for feeding.

8 months have passed since her therapy began, and during that time she has made tremendous strides.  She now sits and transitions to crawling, which is mostly commando crawling, but recently she has been doing some "real" crawling which honestly brings tears to my eyes. 

She bears weight and cruises along the couch!  No steps on her own yet, but I believe it will come.  There was a time when it didn't seem like she would ever walk, but now I can see it coming. 

Let me tell you, that will be a big day. 

And most importantly I think, she is eating!  And even more importantly, she enjoys her food :) 

Who ever knew this would be such an accomplishment?!

She is now at a 13 months level for feeding.  That is great, considering her adjusted age is 16 months. 

She's catching up.  :)

Monday, March 7, 2011

Frightening Little Puzzle

Campbell.  Her name has become synonymous with the word: puzzle.

As I said before, this goes back to her NICU days when we were trying to figure her out.

She's a puzzle, the doctors would say between chest xrays and blood cultures.

See, we were scared to death that she had NEC.  She was presenting with all the symptoms of this deadly infection.

Thank God the tests always came back negative, but the waiting was always nerve wracking.  Time and time again.

She was having trouble digesting, and just needed a specialized formula to help her along.

Crisis averted.

Later on down the road, she didn't want to eat and was fighting through her bottles, and was also struggling to keep her blood oxygen saturation levels up despite the home oxygen she was on.  We were once again puzzled and working with her doctors when we came across another very scary possibility. 

Her PDA could have reopened. 

That would explain her continued digestive problems.  And also her continued breathing problems.  See, digestive and breathing issues are classic symptoms of an open PDA due to the heart not pumping enough blood to the gut and lungs.  And even though her PDA was closed with medicine in the NICU, there is a possibility that it popped back open.  Our pediatrician and cardiologist worked together and did another echo to throroughly examine her little heart.

Nope.  Her PDA is closed.

Reflux is the culprit.  And her lungs are still healing from the Chronic Lung Disease.

She just needs time.

Crisis averted.

Still later, during her routine weight and height checks, it was pointed out to me that she has a big head.


Have you seen my husband?!  Or my son?!  Big heads run in our family, doc.

He chuckled. 

Then he got serious and presented me with her growth charts, plotting the points for her height, weight, and head circumference measurements since she was born.  Her height and weight was moving ever so slowly up the curve, pausing and stagnating at times, but moving up nonetheless.

Her head circumference was going along the same curve.  Until our last 3 checks.  Those three were going vertical.  Skyrocketing in fact, compared to her height and weight.

I swallowed.



I looked up at our doctor.

I'd like to rule out hydrocephalus, he said.

Hydrocephalus.  The word was echoing in my brain.

I knew about hydrocephalus.  And the idea that my daughter could have it was frightening.  Were surgeries and shunts in her future?  Precautions and contraindications for the rest of her life?

He then explained that it could possibly just be the way she is growing.  Sometimes when kids start taking in more calories, the head is the first thing to grow.  And then the body catches up.

Please God let it be that.

She had a CAT scan that week, which was a piece of cake.  There was talk of sedating her because she needed to lay completely still for the scan, but the Child Life Specialist did such a great job entertaining her that sedation was unnecessary.  Yay Child Life!  She was a bright spot in a very scary moment.  Those people are very good at what they do.

Later that night I was at Noah's baseball practice when my phone rang.  I looked at the number - it was our pediatrician. 

Part of me was afraid to answer.





Her cat is clear.


Thank you doc.

Thank you God.

Crisis averted.

Campbell loves to scare us.  She's good at it.

But through prayers and good doctors, we've called her bluff.

And like I said in my post about Lenay's heart, these girls are opposite in this way: Campbell has had big symptoms, but has never had any major problems.  While Lenay never has any symptoms, yet she has had some pretty scary problems underneath it all.

Between the two of them, they sure keep us hopping.

Wednesday, March 2, 2011

Still Broken

One thing about these girls: they keep us on our toes.

Lenay had another concerning echo a couple months after her surgery.  In very basic terms, the occlusial device is doing its job and then some.  It is plugged in her PDA but also sticking far enough up in her pulmonary artery to restrict her blood flow.  This was known at the time of surgery, but it was not a concern because she would get bigger and as a result her heart and more specifically her pulmonary artery would get also get bigger, making the device a non-issue.

Well.  That didn't happen.  Meaning: while she IS bigger, she's just hasn't grown enough to make it a non-issue.

The doc was fairly concerned at that follow-up echo.  Another surgery could be in her future, he said.  What they would need to do is go back in, remove the device (which can be tricky) and then do a ligation procedure to close the PDA.

Sidenote: I do not like it when our doctor uses the word "tricky."

Especially when he is talking about fixing my baby's heart.

I had a million questions.

The device was in perfect placement.  Meaning, there was no mistake in surgery.  It just has to do with Lenay being so tiny, and not growing quite as fast as we would like her to.

The doc explained that as long as she remained asymptomatic, we could hold off on the surgery and just wait for her to grow.

She is followed very closely, with EKGs and echos on a regular basis.

In the meantime, she remains on the daily aspirin dose, as well as a cardiac medicine called digoxin, which helps her heart to pump harder.

Eric and I always talk about how opposite Lenay and Campbell are in this way: Lenay is the one who never presents with any symptoms, but in reality she has some pretty scary problems.  Yet Campbell has all the scary symptoms, but no major problems so far.  More details on Campbell to come.

Our next cardiologist appointment is in April, at which Lenay will have her first sedated echocardiogram.  Sounds fun right? 

Oh how we've been praying for her little heart.

She is now 18 months.  She is 12 months post surgery.  She weighs over 19 pounds. 

What.  19 pounds doesn't sound like very much for an 18 month old?  Well I will have you know that she has just graced the growth chart for the first time at 18 months!

She's been doing a good job growing.

Let's just pray that little heart has been growing too.