Monday, January 30, 2012


Music is powerful.   A few strains of a melody have the magic to transport us back to another time in our lives.

My soundtrack is as vast and varied as the emotions the tunes evoke.  From Bye Bye Bye which takes me to a silly concert with an old friend while Don't Blink has me driving away from the hospital after watching my dad slip away.  Dave Matthews and Crash sends me to my in-laws' living room, with Nick, my then boyfriend, pulling out his guitar and playing the song he learned for me, then to our first dance together as we started our new life.  The miraculous melody of Good Morning Beautiful will always give me a sigh of relief, just like it did when it stopped our colicky baby from screaming and Toby Keith's Red Solo Cup will forever remind me of my little wild child belting it out in the kitchen as she was preparing "to party."

No matter what the song is, sometimes you hear it right when you need it.

I was recently visiting in the hospital when I heard the tinkling strains of a lullaby.  It had been quiet in the room while my mom slept, and without the boisterous rhapsody of my usual evening, my mind was wandering.  Instantly a smile crept across my face while I recalled the euphoria of seeing my babies for the first time after the months of waiting and hours of labor.

Then, I thought about the proud parents, one floor down, holding their precious son or daughter.  Gazing into the eyes of absolute innocence, a new beginning, a story yet to unfold.

The first few moments of life are magical.  In the peaceful minutes when time seems to hold its breath, and the world does not intrude, you find both an end and a start.  It's the end of a mystery, finally meeting someone you have loved long before you even knew they existed.   It's the beginning for this miracle, breathing new life into your world and theirs.

No matter what amazing moments I have experienced in life, nothing has been more breathtaking and inspiring than these beginnings, the start of each child's new adventure.

As the strains softly subsided, I thought about how much my own children have grown since their birth days.  The years have flown by faster than I had ever expected.  Even though my oldest is beginning trade in her "babyish toys" for nail polish and fashion, I love that she still asks me to sing her lullabies at night, that for now, she too still cherishes the music of her beginning and I can't help but wonder where it is that the tune takes her while I sing her to sleep.

Friday, January 27, 2012

Concoctions and Diversions

As I work on my next post, I've been toying with the blog and creating a Facebook page to make it easier for you to follow.  Please visit my other pages on the blog; one shares some tasty treats from our kitchen, the other  a smidgen of my dream to be a children's author.

Enjoy my little diversions and concoctions - both season my days.

Monday, January 23, 2012


I selected this post to be featured on my blog’s page at Top Mommy Blogs.

As I look at this week's schedule, I'm glad we are seeing a familiar specialist.  Every time we go to a new doctor we have to retrace our steps, recreate Cole's journey from the beginning even though records and results have been shared before we've stepped foot in the office.  While I realize it's necessary, it is also draining.

Reflecting on the past year, whether in a doctor's office or in my head, leaves me needing to take a deep breath and slowly exhale. Lately, I've been tackling the triumphs and challenges of each day as they come instead of looking backwards or looking too far ahead.

I've learned that there's no controlling certain situations, that they themselves force you to suspend plans, as if you've pressed the pause button on the future.  Instead, at least for me, the best way to cope is to live life purely in the moment and for the day.

That being said, when I think about everything that has led to today, I am almost overwhelmed. Not in an "I can't handle this" sense, but more of an "I can't believe Cole has been through all of this already."

At the same time, I'm thankful. I think of some of the families I've talked to in waiting rooms and how much harder their journeys have been! So while it does break my heart to watch my son go through each needle prick or to listen helplessly while he screams from the inside of an imagining machine, I know it could be much worse on so many different levels.

Many of you have been with me every step of the way, following the saga as it began to unfold, whether it be hearing from me or getting updates from other very close family or friends.  The more appointments and tests we were hustled to, the harder it became to update everyone waiting for a call.  I didn't feel these rundowns were appropriate Facebook status messages, especially since most of the time we were left with more questions than when we walked into each consultation.  Without answers, I didn't feel I had much to share about how our little guy was doing.  In fact, that's where I am right now.

Still, I feel compelled to reflect and share our timeline, since I know many of you are curious as to where the updates are and there are some of you who are just starting to follow our plight, and in order to make sense of where we are now, I believe it helps to know where we've been.

Here it is, as short and sweet as I can make it.

Cole was born full term after a very fast, difficult labor.  Initially, my husband and I were able to hold him but while he was under routine evaluations nurses noted that he could not maintain his body temperature.

As a precaution, our baby was rushed to the NICU.  For the first 24 hours, each visit to the unit seemed to bring more unexpected news; suspected sepsis, continued low blood sugar readings, and the need for a feeding tube.

Slowly, our son began to recover and learn to eat, so we were able to bring him home but were told to be cautious, that we should not expose him to anyone who might be sick.

So we came home, had very quiet holidays with just our kids and brief visits from the grandparents.  It was an odd winter.  After a fall of taking it easy, I was ready to be social, but in Cole's best interests we lived in a cocoon for the winter, waiting for spring when we could push ourselves out and spread our wings.

Things seemed to be going well until Cole was just about three months old.

At the end of February we were finding ourselves in a better groove as parents of three kids.  Our five year old was such a little mom, helping with anything she could.  On the other hand, whatever bucket of trouble was around, our three year old would not only stumble upon, but dive into, doing her best to become the center of attention.  She loved her brother and would try to help, but at the same time she missed being the baby and had no problems making this fact known.

About this time, we started noticing blood in Cole's diapers.  At first it was a few streaks here and there, then it turned into giant globs.  Something was wrong.

Our pediatrician sent us to Women and Children's hospital for an evaluation.  After an ultrasound to rule out telescoping of his intestines they determined he was most likely allergic or sensitive to dairy and soy.  Since Cole was exclusively breastfeeding, this meant no more soy or dairy for me.  The doctors told me once I eliminated both elements from my diet it wouldn't be long before we saw an improvement and in the end, most kids outgrow these protein allergies by their first birthdays.

After a few weeks passed, there was no improvement, Cole continued to bleed.  In addition, after his four month immunizations he began to have a very odd fever pattern.  In the end, it was determined that he must have had a shot reaction.  His next round would be split up, one shot at a time.

Spring turned to summer, the symptoms continued, yet we were told to keep up with the elimination diet and to try feeding Cole different foods.  Initially, he ate a little, then he refused to eat anything, just wailed and pushed all food away.  The screeching went on throughout meal times as well as the rest of the day while his "output" declined.  No matter what we tried to feed him, if he ate two baby spoonfuls we were lucky.

In August my husband and I were at a loss with what to do.  For me, I felt like I must be doing something wrong - but what?  This wasn't our first baby and while I had many questions and was often unsure of what I was doing with Paige, our first, I was very confident with Gwyneth, our second.  Being our third, I was sure we were in for smooth sailing.

At our appointment this month we were assured the allergy should disappear by his birthday.  However, I still had a nagging in my gut that something was not right.  After all, at this point he was eight months old and besides all the medical issues, he was barely trying to roll over, sit up, or crawl.  Instead, he would remain in the middle of whatever blanket I would lay him on.

We were sent for blood work and told we could do a colonoscopy to see what was happening.  When the blood results were in, we learned Cole was severely anemic, which could account for his low activity level.  To treat his anemia, he was placed on iron supplements.  Doctors also decided he would undergo a few other less invasive tests to rule out other conditions before scheduling his colonoscopy.

Both tests showed nothing so the colonoscopy was scheduled in October.  We had to wait a bit because Cole would need to be in an operating room just in case.  The hour in the waiting room after he was taken from me was excruciating!  I watched doctor after doctor come out and talk to parents in the waiting room.  When Cole's physicians appeared they asked me to follow them.

Once in the consultation room the resident began to show me pictures of what they had found.  As he moved from image to image he tried to describe the hundreds of nodules they had discovered.  Before long, the more experienced physician took over, gently explaining the abnormality of what they observed, but assured us that before  we worried too much about what could be we should wait for the biopsy results.  She handed me pictures, an appointment date and led me to my son in recovery.

Wires and tubes wrapped their slender coils around my baby like ivy.  Seeing him asleep, yet so pale and so helpless made me sad that we had to put him through the whole thing.  As I sat in the rocking chair and reached for his tiny hand, the nurse told me she was so sorry.  Through our conversation I learned she saw the pictures from Cole's test and from her experience had not seen anything so extensive in such a little one.  While we waited for our appointment day her comment lodged itself in my head, adding to my nervousness.

With our appointment still a week away, the phone rang.  It was the g.i. practice.  While they could not share results over the phone, they wanted us to come in first thing in the morning instead of the following week.  Once we were there, they did an exam, which I thought was odd because he had just had one prior to his procedure.  My husband reminded the doctor that we were there for test results, not an exam, and the resident smiled, said this was routine and that he needed to go get another doctor.

The two doctors walked in and sat down.  Now, I know from past experiences that when multiple doctors ask you to sit down, what they may share with you may not be good.  Both physicians explained how the practice sat down to discuss Cole and look at similar case studies since they had not experienced anything quite like this in someone so young.  They told us as a group they had different thoughts on how to progress.  It could be a number of things, Crohns disease, ulcerative colitis, or something else.  They just weren't sure.  For now, they would treat Cole as if he had Crohns and would order IBD panels to see if these nodules were the likely result of one of these irritable bowel diseases.  We asked questions and at the end of the appointment both doctors wished us luck and sent us home.

Our ride home was quiet.  I know my head was reeling.  How could doctors not know?  How could a baby have something like this?  How could I stand by and do nothing but give him meds and wait?

When I shared what the doctors had to say with my sister, she gave me some advice, as she often does whether I want it or not.  She and her husband had once experienced some bad news about one of their kids.  She said, let myself be upset, cry if I needed to, but limit the wallowing, it wouldn't do any good, I couldn't change what was happening by being upset.  Just take a night, be upset, then move forward with whatever needed to be done.  Be strong and happy, for it would be best for not only me but all our kids.

It is this advice I come back to when I'm tempted to feel sorry for Cole or our situation.  Really, it could be worse.  And while I would give anything to take it away from him and go through it all myself, I can't.  Accepting what is out of my hands has been tough for me, but has also made me realize just how strong I can be.

It is from this point that our journey took off like the speed of light.  Stay around for the ride, it starts to get wilder than I ever would have imagined.

Tuesday, January 17, 2012


As a kid, I found it hard to be patient. Christmas morning just couldn't come fast enough! Like any other child, I was bursting with excitement, like a kernel of corn ready to pop, anticipating Santa's arrival. That all changed the year I stumbled upon "Santa's" secret storage spot.

I had won the kids' lottery! Quickly, I rifled through all the boxes and bags in the back of my parents' closet, searching for the treasures that would soon be mine. With stealth I stalked new arrivals to the closet and cataloged the contents in my head.

That year, Christmas morning wasn't quite the same. I knew needed to act excited when I revealed what I had been anxiously awaiting, but with the surprise missing, the magic of the morning just wasn't the same.

From then on, I learned that sometimes waiting was better than the instant "now" gratification.

Which brings us to today. Today begins another day of waiting. Unfortunately it is not for Christmas morning.

Today could be the day, a fork in the road we are on, or it might not. You see we are expecting a phone call at any point now that could alter our course as a family even more than it's already been altered.

About a month ago Cole underwent genetic testing for NEMOS disease, which is a primary immunodeficiency. This is not the first test Cole has had by a long shot, yet with  the stakes seem to be higher with every test that is ordered.  After all, initially we were under the impression that he just had allergies. Now, I'd give just about anything for that to be the case.

On Friday the phone rang, and the hospital's number popped up on our caller id. My stomach dropped and I swore my heart was going to jump out of my chest as the moment of truth had arrived.

In the end, it was another specialist with just a question for me about Cole. I caught my breath while my pulse slowed back to normal and wondered if I was really ready for the phone call to come.

Now, a few days later here we are, still waiting.

While we wait, our days go on as usual, filled with work and school schedules, books and play, homework, cooking and cleaning, meals and baths. The busy music composed by the kids drowns out the questions resonating in the back of my mind that bubble to the surface when the house is quiet. All the what ifs. What if he really has NEMOS? What if he doesn't? Then what? What else could it be? When will we know? What will we be able to do?

As crazy as this sounds, as much as I want the answers to these questions as soon as possible, I'm OK with waiting just for today. While we are stuck in the holding pattern, our days are not punctuated by appointments and blood work, just our home routine with a few prescriptions sprinkled throughout the day reminding us of Cole's continuous challenge.

While I'm frustrated that we can't move on, there is nothing else I can do while I wait but enjoy the good moments with all the kids. After all, it's been nice to have had a few weeks where Cole has not been poked or prodded but is babbling and bouncing. I cherish these days of normalcy, and at a glance, I'd never believe my son could have anything wrong with him.

I know the rush for more blood work and appointments is coming, but for today, I'm going to read a few more stories to my kids, watch the big ones play in the snow, and snuggle them each a little longer.

Sure, it's easier to be patient when you are waiting for news you're not so sure of but even if I knew these results were an unexpected gift, I'd still be OK with waiting today. And I know whenever the call does come, I am ready to tackle whatever comes our way, even if it is more waiting.

Monday, January 16, 2012

A New Beginning

I've finally started!  After keeping a journal for a while, I decided it was time to blog.  In fact, I had wanted to do this a while ago, I just needed to get the nerve to actually do it!

So why now?  For those of you that know me, you know the past year has been one of change.  In many ways it has been rather humbling.

My husband and I were blessed to add a third child to our family last December.  How hard could a third baby be?  I mean, we've been through this twice before, we were set and so excited to have a new son or daughter to share in our family adventures.

Once our son Cole was born, all our well laid plans seemed to fly out the window.  From his entrance and unexpected NICU stay to where we are today, waiting for results, his first year was nothing like we had anticipated or experienced with our daughters.

You see, as we all were testing the waters of the new family dynamics, our precious baby boy was struggling and we really had no clue for a while.  In fact, while we currently have some ideas from all his doctors, we still have no definitive answers.

Throughout the sibling adjustments, the appointments, and the waiting, we have had to change so much of how we live, some ways for the better, some not so much.  Friends have asked how we are doing it and just in general how we are doing and to be honest, we take everything one day at a time and are doing alright.  Some days are better and easier than others, but in a home filled with happy kids, laughter, and love there is always some sweetness or comic relief to any situation.

OK, so what is this blog about then?  This is me, stopping for a few moments in all of this, to catch my breath.  What can you expect?  For the most part, a look into our latest adventures and maybe random thoughts I just can't help but comment upon and well, this will be my forum.  And, to be honest, I love to write, especially for an audience, even though this will be the first time I have shared anything so close to my heart in such a public way before.  If you follow, thank you for choosing to be a part of this journey with all its twists and turns as I catch each breath, one at a time.