Nine months ago today my baby boy was born!

 People say it goes by so fast and it does… but for us, WOW, what a long nine months it has been.

This may be my longest post ever but I guess I should start at the beginning: September 5, 2010 2:59 am 8 lbs 11oz. 22 inches long and head circumference 37.5 cm.  He was a big boy, and his especially large sized head made for an interesting delivery.  But as nature intended the minute he was in my arms all the pain of labor began to fade away.   After a whirlwind few days in the hospital Mark and I could not wait to get home.  We were ready, or so we thought, to start our new life as a family.

And so it began, eating , pooping, crying, and sleepless nights just like every other newborn baby.  We could handle this, right?  Babies are born every day,  people do it all the time.

As the sleepless nights turned into sleepless weeks, people just kept welcoming us to parenthood.  As the weeks turned into months, we were counting the days till Kai would be three months when ‘colic’ was supposed to subside.   As month three turned into months four and five the crying was getting worse.  This was beginning to feel like torture.  Kai was never happy.  His naps never lasted more than 20min. and he woke ever hour or two all night.  He was screaming and miserable all the time.  We couldn’t go anywhere or do anything and I was becoming so sleep deprived I was really starting to loose my mind.   There was just no way I could be this bad at dealing with a baby.  I consider myself to be a pretty patient person and i had worked as a professional caregiver for years!  I knew this was not normal.  There had to be something else going on.

And so the list of diagnosis began.  First we had thrush.  Surely that is what was making him so unhappy.  Once that passed we moved onto reflux.  He was spitting up all the time and hated laying flat on his back.  The symptoms seemed to fit.  I couldn’t wait to get those meds in him, ‘this has to be the answer’ I thought.  But after trying several different medications I was starting to loose hope that we would ever have a happy baby.  He may just be a ‘high needs’ baby, we were told.  Really??  I wasn’t buying it.

I did some research and next thought he may have a food sensitivity.  I stopped eating dairy, which helped, but he was still exhibiting signs of an allergy.  We eventually saw a GI specialist who did some tests and suggested I eliminate dairy and soy from my diet.  It took about a week, but it seemed to be working!!  While he was still not sleeping well, he was no longer screaming all day and night!  Maybe this is the answer!

Kai was around 5 months now and was starting to make some progress.  He was finally starting to smile, and reach for things and be interested in the world.  He even began sitting on his own.  While I knew he was developmentally behind, things seemed to be looking up.  But  even this solution was short lived.

Sure we would have bouts of sleep for a day or two here or there and the screaming wasn’t as constant anymore,  overall not much had changed.  I still hadn’t slept for more than 3 hours in a row for over 6 months now.  I still couldn’t go out with Kai for more than an hour or two and I still too ‘high needs’ for me to ever feel comfortable  leaving him with someone else for any length of time.  We left every party, playgroup, dinner, and holiday early because Kai was always miserable….. it was wearing me down.  I actually began to morn the life I had imagined with my new baby…could this really be what it’s like?  Why can’t I handle this?  How am I going to get through this day?

The next few months I tried everything to break out of this cycle of sleeplessness.  We tried sleep books, cry it out, feeding more at night, eliminating night feeds, nothing was working.  We began to notice that he was really not using his right hand at all at this point and he was falling behind developmentally.  I was starting to realize that something serious was going on.

This time I went to the pediatrician armed with sleep logs, food logs, and even video of Kai.  I was not leaving that office without a plan to figure this out.  Our ped. agreed and we were referred to a neurologist at Childrens hospital in Boston.   I couldn’t wait.  That week between those two appointments was the longest week of my life. I spent so long trying to figure this out, trying to help Kai feel better and now I finally felt like we were going to get some answers.

The neurologist did a thorough assessment of Kai and predicted Hydrocephalus.  She suggested we have his eyes checked and get an MRI.  I was ready to stay there all day, but then I was told the MRI would be done in 4 weeks!  I told her I could not keep living like this.  That Kai could not keep living like this.  Our family was not going to survive another whole month of this.  He  was already falling behind, he was clearly in discomfort and if it really was hydrocephalus, how could we just let it get worse waiting a month for a test? I couldn’t do it.  I began calling every hospital in Ma that does pediatric MRI to see who could get us in fastest. I called our ped. I called on every friend and family member to help, and little by little we were getting earlier and earlier appointments.

Friday My uncle called and said we could get in at Umass Medical Center right now, and so we went…