A Tough Lesson

04 Sep 2010 10 Comments

by Sassy Mcknockers in Family, Randomness

Most people on Twitter or reading this blog know little to nothing about me, but one thing remains true about me in all circumstances…  I’m not someone who stresses very much.  I get a lot thrown at me daily, and people around me comment about how I never seem to let things bother me.  There’s a very good reason for this… which involves the very long story below!

The Lady (my daughter) was born in 2005.  I remember being pregnant and endlessly hearing “do you want a boy or girl?” to which my reply was always “I want a healthy baby.”  The Lady was born a healthy 8lbs 11oz and 21.5 inches long.  Everything seemed perfectly normal until she was 3 months old.  I started noticing spots all over her body.  We went for her 3mo checked and the doctor never even noticed the spots.  Of course, I asked about them since they hadn’t been there at birth.  I was told they were Cafe au Lait spots, which could be a sign of Neurofibromatosis, but not to worry about that until she got to the age of 3.  As any first-time mom would do, I Googled Neurofibromatosis.  Oh. My.

I ended up switching pediatric offices (unrelated) and the new doctor immediately asked me about the spots and if I had been spoken to about them.  ”Well, funny you should ask, doc.  Yes, I brought it up to the last pediatrician and was told to not worry until she’s 3.”  This doctor gave me the most confused look I’ve seen for most of my life and said he wouldn’t do that for his own child and couldn’t imagine recommending that to any parent.  And so began a journey of specialists.  We went to a Geneticist first.  And often.  My ex-husband and I were tested to see if we carried the gene.  The Lady was charted and looked at regularly to see if there were any new developments.  She regularly developed new spots, but was growing normally and was healthy.  At 15 months she had developed freckling in her armpits (who cares, right?) and the “bump” that was on her left ring-finger since birth had grown in proportion to her hand.  Now with this bump having grown, it was obvious that it was a plexiform neurofibroma.  So.  At 15 months she was diagnosed with NF1.

By this time, I was pregnant with The Man of The House.  I had read enough about NF1 during those 12 months that I didn’t freak out completely.  Once diagnosed it was determined she needed a brain MRI and would begin seeing a bunch of specialists.  The day came for the MRI.  When it came time for her to go back, I couldn’t go with her because I was pregnant.  That had to be the most traumatizing part of the entire process.  She had 2 nurses (who were amazing with her) putting her to sleep.  All she knew was 2 strangers were putting a mask over her face.  All I could see is her kicking and screaming to try to get away.  We began the journey with a neurologist, ophthalmologist, and audiologist at this time, too.

During the entire pregnancy with my second child… again… all I heard was “Do you want a boy or a girl?”  Good gracious.  I want a healthy baby, people!!!

In 2007, The Man was born.  He was 9lbs 14oz and 20 inches long.  He looked healthy as could be.  Dr. Fun (the pediatrician whom I completely love) told me The Man had a heart murmur.  No worries, that is common in the first day of life.  Usually, it goes away.  Day 2 came and it was still there so Dr. Fun called in a cardiologist just to be on the safe side.  I’m sitting in bed chatting with one of my best friends and holding The Man.  My ex-husband is nowhere to be found.  Enter Cardiologist without a personality>  She tells me he has FOUR defects with his heart and will require open-heart surgery by the time he’s 4 months old.  <Enter tears>  Now, I’m not a particularly emotional person so most of my friends never see me cry.  There was no controlling the tears at that moment.  This cardiologist happened to have no personality or bedside manner, which only increased the tension.  Oh.  And again.  My now ex-husband wasn’t there.  I’ve never felt more alone.  Meanwhile Doc without a Personality is drawing a picture of a heart on a random piece of paper.  Listen, lady.  I’m not going to retain anything you’re saying right now.  You could probably knock me over with a feather, but my ability to comprehend further is gone.  My friend was sitting there just stunned.  Not sure that she could comprehend anything at that point, either.  After Dr. Personality left we sat there in stunned silence.  What could be said?  The wind was completely taken out of my sails.  In 24 hours time, I had gone from the birth of this wonderful baby and being on Cloud 9 to “Oh by the way, if your baby cries a lot and turns blue, he’ll require immediate surgery.  No need to call 911, just drive him to the ER.”

Two weeks after The Man’s birth began an amazing number of doctor appointments.  I told Dr. Fun that I would be getting a second opinion and taking The Man to Children’s Hospital.  He was completely supportive and encouraging.  I started taking him to a great cardiologist we’ll call Colonel Sanders (yes, as in from KFC).  Colonel Sanders found the original diagnosis to be incorrect (Happy Dance!) and there were actually only 2 defects.  Two holes in his heart.  The Colonel completely disagreed with performing surgery by 4 months and instead took the approach of letting The Man grow and his organs mature so he would be strong come surgery time.  I felt so much better dealing with The Colonel… and it’s a good thing because over the next 9 months, I would see him more often than I see my extended family.  Though, in fairness, I rather see him.

I visited CH with the baby boy regularly and he had an EKG and echo-cardiogram every visit.  As he got older, the tests got harder.  Trying to get a new baby who is learning to move around to stay still for these tests was hard.  Harder on me than it ever was on him.  Every trip to CH, I was a nervous wreck until it was over.  Just waiting for the other shoe to drop.  One hole had closed, but the other was far too large to close on its own.  Every time I left with the Colonel saying he didn’t need surgery at this point, I breathed a sigh of relief.  Sure, I knew the day would come, but I just wasn’t ready for those words.

When The Man was 8 months we went for another appointment at CH.  The Colonel came in and sat down.  He told me The Man’s heart had gotten worse.  A bundle of muscle had started growing, blocking off a valve.  He would see him again in a month and make a decision on how to proceed.  I thought to myself, “OK, I have a month to get ready for that shoe to drop.”  I could deal with this.  I’d have a month to think it through and be prepared.  Two days later I was at work.  I was sitting quietly at my desk making customers happy one invoice at a time.  The phone rang.  I saw who it was on the caller ID.  Though, I couldn’t fathom why this number would be appearing on my work caller ID.  I answered.  It was the Colonel.  He had met with the cardiac team and together they all came to the conclusion they wouldn’t be waiting another month.  The Man needed surgery.  And he needed it sooner rather than later.  I can’t tell you how much I appreciated the fact that he wasn’t trigger happy and did take the time to meet with the whole team and come to a conclusion they all felt was in the best interest of my son.  I also can’t tell you how blindsided I was at that moment.  I just hung up the phone and cried at my desk.  And… I work with all guys.  I have for years.  They, too, never see me cry.  So when one of them walked in my office afterwards, he wasn’t at all sure how to deal with this situation.

The appointments leading up to it his surgery were stressful.

The pre-op was an all day event.  He needed a blood transfusion.  My coworkers and friends donated all the blood for my son.  Customers called to ask if I wanted them to donate.  It was really an incredible experience seeing how much everyone cared.  At 9 months, he had his surgery.  We left at 4:00am to get him to the hospital.  I was amazingly strong during that time.  I needed to just get past the next few hours.  Seeing him after surgery was possibly the hardest time during the entire 9 months of his life and 2 years of my daughter’s.  Seeing him with all the tubes and wires coming out of every little inch of his body was terrible.  But it was a huge relief.  He was doing well.  And it would end all the worries I had for the previous 9 months.

Children’s Hospital is an amazing place and the experience with my son couldn’t have been better (unless, of course, we just didn’t go through it).  I transferred my daughter’s NF care to CH NF Clinic.  She’ll be seen there for the rest of her life, but I know that she’ll have the best doctors and they will always do the right thing.

Dealing with these medical issues… I learned several things about myself and life in general.  There are so many important things in life.  So much more important than if the dishes are dirty or there’s work to be done.  Crying doesn’t solve the problem.  Stressing doesn’t solve the problem.  But, it does make everything so much worse.  My mother stressed and cried for 9 months straight.  The end result was always everyone else being upset.  It never fixed the problem.  I cried when the shoes were dropped, but then I’d realize I had to be strong and get through this and I wanted my kids to be happy.  I didn’t want my daughter to cry because I was crying.  So at the end of the day… if you didn’t get all your dishes washed, grass mowed, work done… no worries… it’ll still be there tomorrow.  Enjoy the time you have and let those worries go!

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