Monday, November 19, 2012

"Bee's" Journey: Preemie Babies and Developmental Delays


Tiny and sweet.

That pretty much sums up what I knew about having a preemie baby before I had my little Bee. 

Bee was born at 33 weeks.  I had severe preeclamsia and my body was showing signs of developing HEELP syndrome. I had also developed bilateral kidney infections at 2 months pregnancy that could not be cleared up.  I was on constant antibiotics during my pregnancy. I had a scheduled C-section once my urine protein and blood pressure were on the rise. Our little one came out perfect.  Honestly, he was not even tiny.  He was a  seven pound whopper of a preemie.  He had obviously been stressed in the womb as there was meconium in the amniotic fluid.  The umbilical cord was wrapped around his head three times.  He screamed loudly upon arrival, music to all parents ears. Honestly, he was perfect. No time in the NICU. He latched right on the breast with no problem.  Let me say it again, my preemie baby was perfect.  I felt so blessed.  Three days later, I went home with my beautiful preemie baby. 

I honestly had no idea at that time how very blessed we had been.  It has taken me until recently to accept the fact that I almost died during both of my pregnancies.  It has taken me until now to read more about preemies to understand how blessed we are.   I am very slow to emotionally process things- it is part of my coping skills. I had no idea when deciding to have children, just how many risks are involved for the life of the mother and infant.


Our busy "Bee" came out crying and screaming and it seemed he did not stop.  We just assumed he had colic and it was clear from day one that he has severe reflux as he would spit up breast milk through his nose and mouth.  At seven weeks however, he had a little tiny white spot on his mouth.  We noticed it around 4:00 in the afternoon.  We thought it was the beginning of thrush.  I called the doctor and got the first appointment for the next day.  But later that night this tiny white spec was a large bump that looked like it was growing every second.  I rushed him to the hospital.  By the time I arrived it was ready to burst.  They took him right in and did a spinal tap and blood draw.  I held him and waited for the news.  After much time, several doctors, more tests, an MRI, etc we were told he a small tumor or cyst that had been an open pocket and it had gotten infected with MRSA.  Three days later the infection had tunneled onto the roof of his mouth and we were told he had to have surgery to drill into the bone.  His lab results for the cyst/tumor had come back inconclusive it actually was that allowed the infection to take place.  But all we cared about were the words "benign".  Due to the MRSA infection going into the bone, he had to be on antibiotics for 4 straight months.  We were told to keep him in a bubble as much as possible due to his compromised immune system.  So he took medication until he was six months old, we went home with our beautiful little man in our arms, and happily stayed in our bubble.  He seemed like a different baby.  He was so very calm now.  I honestly suspect he had been in pain from the moment he left my womb.

This is actually a few days after the infection had burst open.

My little sweetheart with his face so swollen.

A rare moment indeed!  He actually spent every waking moment laying on me in a little kangaroo pouch.  There were several days that I was only able to eat the crackers my husband had brought me from the day before.  I would not leave him without mommy or daddy's supervision at all times! 

Bee began doing everything about 3 to 4 months later than most babies.  We were told not to worry.  That was "normal" for preemie babies.  So, I trusted the doctors.  He could not sit up off the changing table and needed help still around 10 months.  Again, we were told "normal for a preemie". And we were quoted the good old fashioned advice, "don't worry, he will catch up by the time he is two."   Drooling, walking, clumsiness... just wait and he will be fine.

So we waited....

In the meantime, at 11 months Bee began to loose weight.  Drastically falling off the charts.  He went from the 50th percentile to the 3rd in a month.  Then to 0%, then off the charts.  He was vomiting often and had ear infections so often that he could not be off antibiotics for more than 2 days without getting an infection again.  We were told the vomiting was from the ear infections and antibiotics.  We were told to add supplemental formula feedings.  We even bought soy milk and added soy formula... only to see the cycle continue and the weight loss get worse.

I came home one afternoon and heard him babbling in his room.  I walked in the door and saw that he was facing the opposite wall of the door I had entered.  He was in that sweet little baby position where they are laying on their tummy and their butts are high in the air with their legs tucked tightly underneath them- womb style.  Such a sweet reminder that they were just safely tucked inside me.  I softly said his name.  I called to him again and again.  I got louder and louder.  I literally yelled.  He did not turn to look at me.  I put my hand on his back and he stared at me with wide eyes and a bright smile.  I knew my baby was deaf.

I know this has been a very long post.  Thank you for reading.  I will continue Bee's Journey tomorrow night.  

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