One

There are times lately when I really think I've got it all together, then I realize I happened to miss a beat somewhere.

This week is a one appointment week.  It was however supposed to be a three appointment week, yet I wrote the girls' dentist appointments on the wrong date of the calendar.  I honestly have no idea why!  Luckily the dentist knows our situation and just rescheduled us for the cancellation he had next week.

As I painted our hallway yesterday, I was downright proud of myself for having laundry done, dinner cooking, and everything else in order.  Then the office called to see if things were ok here since we don't miss appointments.  Like the office, I guess I should laugh at my mistake - I know I am far from perfect!

Tomorrow we see the g.i. doctors again, not just to follow up, but to discuss in further detail the latest colonoscopy findings.  Since Cole has been flaring for the past few days, this appointment couldn't come fast enough.  We know they are going to outline the path ahead in more detail, even though we have a pretty good grasp on where we are headed.  Keep your fingers crossed we are not in for any more surprises!

In the meantime, we will settle in for one of our many pre-prepped freezer meals I made last week.  One day of prep, lots of meals for when you don't have the time to cook.  It was nice to change beds, play, and get in a workout during Cole's nap instead of prepping dinner.  I'm feeling energized and looking forward to practicing math facts with the girls tonight!

Comfort

After last week's flurry of phone calls, tests, and anticipation, my insomnia made sense.  As I exhaustedly settled the kids in for the night I was certain I would sleep well.  Even when I fell asleep during the one show I watch religiously, I was sure the night was bound to be a restful one, finally.

Here is it, 3:20 a.m. and I am wide awake, seriously contemplating coffee.  I'd like to work out but do not want to break the silent spell cast over the house.  Instead I will write.

Yesterday was a divide and conquer sort of day.  Even though it would have been great for both of us to be at the hospital, Nick and I are trying our hardest to keep some sort of normalacy for the girls as often as possible.  We decided he would stay home to take care of them while I went to the hospital with Cole.

After our typical morning routine, the girls went off to school with Daddy and Cole and I headed to Children's.  Once we arrived, we were shuffled from admissions to pre-op, then from waiting room to waiting room.  Luckily there was plenty of activity throughout each stop to observe.  I cannot believe the way some people treat the nurses there to help their kids.  I was embarrassed for the couple scolding and swearing at every nurse they saw because their doctor had an emergency surgery which pushed back their son's scheduled time.  Yes, I am sure it was frustrating, I wasn't thrilled to wait two hours for Cole's procedure as he clung to me for dear life in between his crying, but yelling at people who genuinely care isn't productive either.

Needless to say, I was pretty happy to move from the pre/post op floor to the surgical floor.  I met with Cole's g.i. doctor and her fellow, then the anesthesiologist before my handing over my sleeping angel to the nurse.  Anesthesia assured me they'd take good care of him then told me to get a cup of coffee, it was going to be a long afternoon.

As my baby's cry faded the further the nurse walked down the hall, I folded his blankie and made my way to the cafeteria as if I were on autopilot.  I grabbed my drink, then settled back into my chair to wait.

This was the only time that flying solo was tough.  I was texting Nick the whole time, so I didn't feel alone, but I was so nervous I just couldn't sit still.  It wasn't even the procedure itself,  it was the drug induced sleep that scared me more than anything.

Finally, the doctors came out.  Together they led me to the consultation room.  Explanation was swift as we moved through the pictures.  The good news, the number of nodules did not appear to increase and the inflammation seemed to decrease.  The bad news, the number of nodules did not appear to decrease and they still lacked any other doctors who had ever seen this before, so they still could not say what they believed these nodules to be.  Once again they took a number of biopsies.  After the results come in, their plan is now to sit as a practice to discuss the findings, then consult with other physicians if necessary before moving forward with any different courses of treatment.  The hope is that the new biopsies and the various function tests sent to Cincinnati would hold a key to unlocking this mystery and giving us a treasure, the path to a healthy boy.

The minutes moved like molasses between meeting with the doctors and being called into recovery.

To turn a corner and see your baby helplessly strapped down, hooked to monitors and ivs, yet tranquil is strange.  He looked like a doll in the giant bed.  The nurse informed me they did in fact have to insert a breathing tube during the procedure, so in addition to his other discomforts his throat would likely be sore as well.

As I waited for my little guy to stir, I couldn't help but think about how precious life is, not to mention just how fragile it can be.  As I held his tiny hand, I was thankful he was safe, and wished this was the last time he would have to endure this for a while, even though in reality, I know it is not.

When he awoke he went right for my hair, his favorite lovey.  I didn't mind as he grasped my locks like they were gold.  The rest of the afternoon he faded in and out of his slumber on my chest.  I just closed my eyes and rocked him, enjoying the peacefulness.  You know, no matter how hard this can be at times, it is these quiet moments I will cling to, like Cole does to my hair, for they bring me comfort.  Just like coming home to my girls running to greet me at the door with their giant hugs and my husband, waiting for me with a big kiss.  They are the best medicine to melt away a trying day.   

Waiting Room

Tell me this-why isn't there a place where you can pace in a hospital? Better yet, where you can run? Maybe a track? The last thing I want or even need is to just sit. And I bet the couple yelling at the nurse who didn't do anything wrong could have used a place to burn off some steam.

I do appreciate the drink voucher and had sense enough to make it a decaf, otherwise I don't think I'd manage holding this iPod in my hands, let alone be able to type!

Anyway, here it is so far, Cole's currently in the operating room for his colonoscopy. The doctor said it would be and hour to an hour and a half. I will share what I can as soon as I can.

Take Two

Today is colonoscopy number two.  After two days of prep and a morning without anything I am wishing Cole's OR time was earlier than it is.

At first I thought this time would be easier, especially since he will drink from a cup now and then, but he refused after the first two cups so we had to go back to the syringe.  Poor kid is so used to medicine plungers he drinks better from that than a cup!  At least when he was thirsty.  I hope he's clean enough, after he regurgitated the last of the prep all over the two of us Nick declared his prep done while I whisked the baby to the tub.

Little guy is still sleeping peacefully.  I hate to wake him, but he can drink this morning for another half hour and I want him to have something since he refused pretty much everything he could have yesterday.  At least the girls were good with not eating near him or attempting to give him anything.  Before dinner last night they left the pantry door open so Cole grabbed two sleeves of Ritz crackers, whining as he waddled over to me with them. When he handed them to me I thanked him and he gave me the most puzzled look I have ever seen!  At least he can have some today.

Here's hoping today goes smoothly, I will update here briefly if I have a chance while I am at Children's.  Once again, I cannot thank all of you enough for your love and support, as our road stretches longer than I would have imagined knowing you are all there brings me calm.

Oh, and for those of you that know about take one, I did remember to pack extra clothes for myself.

Walking Outside

Every day is a new adventure it seems.  Once we got the phone calls from both genetics and immunology informing us about Cole's results we were also instructed on the next series of steps we needed to take, immediately.

Now that Cole tested negative for NEMOS, there was still the mystery as to what was the root cause of his NK cell dysfunction.  Our immunologist explained not only the case studies she had been comparing him to, but her contact with a leading physician and researcher at Cincinnati Children's Hospital.  They stated we would need to take Cole for additional function tests as soon as possible.  Besides the repeat NK cell test they would also be looking at his perforin/granzyme B functions as well as his IL-2 receptors.  Just like the last time, the blood would be drawn here, then shipped to Cincinnati for evaluation.


In addition to the function tests, now that the genetic results were in, the gastrointestinal doctors wanted Cole's colonoscopy scheduled as quickly as possible.  With a few calls, OR time was found and the procedure was scheduled for next week.


As I drove to our blood work appointment, I dreaded the draw.  Not the screaming I knew was coming, but his face. The absolute look of betrayal when I have to hold him down, then the sheer terror in his eyes as he is pierced while tube after tube is filled with his blood just shatters my heart in a million pieces every single time!  Luckily, today's phlebotomist was the best we've had up to this point.  Unlike others, the first time was a charm and she was easily able to fill the seven tubes she needed without utilizing the syringes to suck additional blood from Cole's veins.  Within a few minutes my baby was back in my arms, twirling my ponytail in his hand, his head lying on my shoulder.


It is truly incredible just how forgiving a little one can be.  Here I struggled from the moment I knew he needed more blood work and in an instant it was like he had forgotten that I assisted the woman who had caused him such pain.  Immediately I thought about the quote that "having children is to decide forever to have your heart go walking outside of your body." 


Initially I realized what this meant not long after our first daughter, Paige, was born.  She was colicky and I just had no idea what to do to soothe her.  After a few days when nothing was working I felt like I was doing something wrong.  Unless we were hiking it seemed like she cried 24/7.  My heart ached terribly when I saw my friends with happy babies while mine was so sad.  Fortunately, as she grew, she also grew out of her colic.  About that time, I needed to return to work and leave her which caused me a worry like I had never experienced.  After a few weeks, I knew she would be ok, after all, she was home with her dad.  Still, the idea that as her mom, I could not always be there each and every second she might need me broke my heart.  I wanted to be able to keep her safe from anything that could cause her pain, like when she was safely growing in my belly.  In the end I knew I could not shelter her from the world, that in order for her to grow and learn she would have successes and failures, and in both, joy and pain.  So while I would worry and share in her disappointments, I would also be proud of her achievements as she grew into an independent child, one learning to make choices and live with the consequences, with and without my help as the situations would allow.  


While more of my heart left my chest with babies two and three, I realized this feeling would not subside and was a natural one for any parent.  There is nothing like the love a parent has for a child not to mention the lengths we parents will go to keep our children safe and free from pain.  


While I still ache when I can't stop Cole's agony or afflictions, I know he is surrounded by love and in good hands, which is the most I can ask for, not just for him, but for all my kids.  No matter what they may endure in their lives, whether I am with them physically or not, a piece of my heart will always be with each of them wherever they may roam.  For this week, it means mine will be walking around a few classrooms and in a hospital operating room while I sit nervously in the waiting room, anxiously hoping for answers. 

Reflecting

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.