Sunday, 24 July 2011

Axton's Story 4 - Baby's Have Strokes Too

I have always known where the NICU is at Mac.  You walk right past it everytime you're on the 4th floor, red section.  I just never imagined I'd be on the other side.  As I made my way through the hallways of the NICU I was taken a back at how huge it was.  This first time through, with of the emotional state I was in, I wondered how I'd ever find my way back again.  This walk would become very familiar to me over the next 9 days.

Finally we made it to Axton's little corner.  I was desparately relieved to see that he was still fact he was sleeping very peacefully.  Despite this, I could not hold back the tears as I saw my little man in the isolette, hooked up to moniters and IV's.  It was so much for me to handle at that time!  Immediatly I was comforted by the most incredible nurses.  They totally understood my "state" and they began to lay everything out for me in the kindess manner imaginable.

When they had wisked Axton away a couple hours previously they found that he was having a seizure.  He had another seizure since then and they were treating him with an anti-seizure medication called Phenobarb.  The plan now was to find out the cause of the seizures, the possibilities for "why" seeming endless.  Some of these reasons were very scarey, others not so much.  And so the testing began - bloodwork, spinal fluid sample, (these first 2 took place IMMEDIATLEY - so quick, in fact, that they had the results back from some of the bloodwork already by the time I got to go see Axton for the first time.  The spinal fluid would take a few days.) an eye exam, several EEG's, 2 head ultrasounds, and an MRI would take place over the next several days.

The following day I was joined by Reg and we began to more fully understand NICU life.  Parents are still very much encouraged to participate in the care of their babies.  Feeding, diaper changes, taking temperatures are all the parents responsibility when you are there.  Nurses keep you as up to date as possible on test results.  (I just need to say...NICU nurses are the absolute best!  I have experience in the healthcare system and I have met my own fair share of doctors, nurses and medical students.  The NICU at Mac has, by far the most compassionate, loving, professional group of people you can imagine.  My emotions were still uncontrollable by that first full day and my tears came easily to say the least - I think I cried more because I was amazed at the staff than I did because of the situation.  I always thought the NICU was a bad place, but I was completely wrong!  There are no stressed out nurses, they are all very much in control and smiling and loving on all the little babies they take care of and the doctors have the most incredible bed side manor! I cannot say enough good things about them.)

Our time in the NICU was mostly a waiting game - waiting for this test or to talk to that person.  Once all of the test results were in we had what is called a "Family Meeting".  We had waited so anxioulsy for this day to come - we would finally have the results of what was going on with Axton and the reason behind his seizures.  The meeting consisted of a Neonatologist, a Neurologist a Social Worker and Reg & I.  This meeting was great and laid out in detail what they think happened.  Basically, his diagnosis was that he had a stroke sometime around the time of birth.  It happened on the right side of his brain in the area that effects fine motor skills.  They expected to see some delay on his left side but nothing too extreme, although he was far to young to tell yet.  They made no promises! The reason for the stroke will always remain a mystery, but they believe it "may be" related to his traumatic delivery - but they'll never say that for sure.

Reg & I left the family meeting relieved.  I'm sure it's hard to imagine that we were happy to hear that our infant son had experienced a stroke but we were so happy to have an answer to what was going on.  We now knew a little bit better of what Axton's future held.  We would know much more about prognosis once Axton's developement progressed, likely around 4 months.

On the 9th day Axton was discharged.  We had a long list full of followup appointments but we were free to take our baby home. As we left the NICU carrying Axton in his carseat I felt as if we had just robbed a bank!  I wanted to get out of there as fast as I could before they said "Get back here!"  :)  We brought our precious little boy home and he finally got to meet his big brother.  A new chapter in this journey was beginning.

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