4th Birthday and New Challenges

Yesterday was a very special day in our lives... Ari turned 4.  I vividly remember the two weeks on the high-risk perinatal floor, the hours of labor... and then then panic.

Ari's heart rate rapidly dropped in utero.  Larry noticed... 170, 120, 80, 50... As he ran to get the nurse, she was already on her way in with a team of nurses behind her.  Ari's umbilical cord had prolapsed, or pinched, from the extra fluid and was cutting off his oxygen.  The results of this can be fatal and quick.  The nurses were running.  One, Two, Three- they rocked me back and forth by the blanket beneath me and lifted me onto a stretcher as the IV ripped out of my arm.  As we passed the doctor, she was yelling "I said STAT!!!" holding up her hands for the nurses to glove her.

As the nurses ran out of the room with the stretcher, my bed slammed into the nurses station like a scene from a movie.  In seconds, I was in the OR and masked.  The medicine made me lose my vision.  I counted 20 shadows in the room, the most important one by my head.  Larry managed to gown up quick enough to make it in time for Ari's birth.

The baby was out, but he wasn't crying.  "Save my baby!  I don't hear him!" I cried over and over again.  There were so many people in the small OR, their voices merged together in a loud buzz.  Larry insisted he heard a cry, but I didn't hear him.  Finally, I heard his meek cry and I joined him, overwrought with emotion and so grateful for his life.  Another shadow approached me- it was a nurse from the NICU team.  She got close to my face and said loudly, "He has imperforate anus.  DO you know what that means?"

"Yes," I answered, "I do."

Ari was brought to me for less than a second, then whisked away to the NICU.

We are amazed at what he has endured over the past 4 years.  Through it all, he smiles and has the best attitude.  I am proud to say that this weekend, Ari is having his first real birthday party... the kind where you invite the whole class, go to a place that specializes in kid parties and eat cupcakes.  It's a big moment in normalcy for us.

BUT...

I would be dishonest to you, my readers, if I keep one very big, very new part of Ari's journey a secret.  I can't get my arms around it... can't form the words to describe the heartache and dread this musters within us.

I brought Ari to see his GI yesterday, on his birthday.  Ari loves this doctor and it is always a treat for them to see each other, they've grown close over the past 4 years.  I had no idea that we'd be there for an hour and a half, no idea that we would once again be making life changing decisions in this office.

The "egg shaped" area I described in my last post was a bit of an understatement.  The truth is, this stretched out area is about the size of his stomach.  His peristalsis is not working at all in this area.  Food is storing in it, randomly moving down to block the esophagus when it becomes loose, causing choking, regurgitating and the worst case scenario, aspiration.

He is now a severe aspiration risk and has been taken off solid foods.  His diet is purees only and he doesn't understand at all, though he does know he's been choking more.  He's angry, acting out, and sad.  He's starting to "get it" and knows this isn't good.  We are going to have to insert a G-tube again.  This was our measure of success!   Oh, the steps back we're taking.

He has started choking in his sleep, so he's now sleeping with us.  We can keep an eye on him and re-adjust his position as needed, getting up often to make sure he's ok.

Please hear me loud an clear when I tell you there is no medical solution for this.  I don't want my baby cut open front to back, all the way around his side- he's already had this done on both sides.  I don't want to have to cut another section out of his esophagus out when he worked so hard to get to this point.  And what for?!?  So the same thing can happen again?  There is no solution and I'm scared.  I'm scared that he looks like he's getting worn out, that he'll give up.  I am so scared that I can barely swallow past the knot in my throat.  I feel paralyzed... unable to think about anything else.

As Larry and I try to go about our daily lives, the sadness in the air is noticeable.  I see it in our faces and our posture.  Someone asked me today what's next and I'm having trouble seeing past tomorrow, when we go to the endoscopy clinic to change out the faulty cecostomy button.  Can you believe that he is going to have a button to assist with stooling, one for catching urine, and one for feeding?  We will control his 3 primary bodily functions.  That's a lot of responsibility for any of his caregivers.

I will get a grasp on this situation.  We'll develop a plan and it will be our new normal.  In the meantime, my wall is down, exposing the fragility that I try to hide with self-confidence and a smile.  I have to get over this, and quick.  I cannot expect Ari to be strong if I do not show strength myself.  I cannot expect him to smile and be brave if I am showing sadness and fear.

Please pray for my Little Lion to gather his strength and be brave, and for us to lead by example, rising above the fear and doubt and focusing on the positive and finding the right course of treatment.