May I introduce....

I feel the best place to start is from the beginning, or maybe I should say "Once upon a time"  because sometimes our life does seem a bit like a fairy tale...if by fairy tale you mean a "disconnected from reality" sort of feeling.  I hear other parents describe their struggles with their little ones and am constantly reminded about how different our struggles are.  Sometimes I forget for a little while that this is not the way "normal" families do things, then some toddler younger than my own will walk up and have a whole conversation with me and I remember.  But, that is not the beginning.  The beginning would be our sweet, third child's birth.  She came into the world not crying and kicking up a fuss but wide eyed and in an untroubled hush.  She just seemed to be taking it all in.  I remember being immediately worried because she was silent, but my husband, who hadn't left his new princess' side, was reassuring that everything was more than okay.  Our beautiful, new daughter couldn't be more perfect!  We continued to revel in the euphoric atmosphere that you can only experience after a healthy birth.  Smiles and congratulations all around!  Siblings waiting in anticipation to hold their new baby sister.  Her baby nurse was the first to discover something troubling about our perfect new addition.  She was born with a cleft soft palate.  Of course, as any new mother with access to the internet I immediately searched the condition and then quickly abandoned it all because I had found that knowing so little about it but being faced with so much information was actually scarier than just not knowing.  We made immediate appointments with our local cleft clinic and pediatrician and continued to enjoy our new bouncing baby.  Breastfeeding was immediately a challenge.  I still didn't know enough about her condition to actually understand yet how much her cleft played into this role but continued to try and try again.  She would get it, of course she would, my other children had no trouble latching once we got comfortable with each other.  We just had to be consistent.  Of course we soon learned that she was not going to get it.  Feelings of failure abounded.  I couldn't feed my child, such a basic need and I couldn't fulfill it.   Her first night I wanted her with me.  In her little clear bassinet provided by the hospital, in the middle of the night she stopped breathing.  Everything was so terrifying and we didn't know what was going on or why.  She stayed in the nursery and they learned that she was aspirating and it would cause her airway to be blocked.  So we propped her when ever we would lay her down and kept chugging forward.  I was too afraid to sleep with her in the room so we kept her in the nursery both nights.  On night two she still hadn't been able to latch on to eat anything.  A well meaning, but afraid I would reprimand her, nurse told me she was able to get her to take some of a bottle with formula in the middle of the night.  This calmed me to know she was not going to starve.  Then came the time to bring this amazing new life home...and we had absolutely no idea what we were doing!  We had two kids already and didn't ever imagine that a third would bring so many surprises and we were working with a whole new learning curve.  Her first night home I lay her in her basinet and before I could shut my eyes she had aspirated and needed her airway to be sucked out.  From then on, she slept with me.  We were not strangers to the family bed but usually not with an infant.  I just couldn't leave her.  Every car trip by our selves was a nightmare.  What if she aspirated while we were on the interstate?  Needless to say we invested in mirrors for the car and I really rarely drove anywhere just the two of us for a while.  We had to teach our older children (9 and 11 at the time) how to clear her airway in the car.  We had bulb syringes EVERYWHERE!  She would sit in her carseat in the bathroom while I showered so she was always just outside the curtain.   Hurrying to wash the shampoo out of my hair because I didn't want to have my head under the shower head too long.  Combating her aspirating was just one hurdle, we also went through a lot of trial and error with feeding.  We

wound up with multiple trips and tests to different doctors and clinics to find the right fit for our perfect girl to be able to eat.  Different tests to find out if she was just having trouble physically eating or was it something more serious.  Eating tired her out so much it would take an hour to just drink a bottle.  After so much heartache and sleeplessness we finally found a rhythm.  We found a bottle that worked for her and she began to thrive.  After weeks of losing weight we were finally thriving!  I believe she was 4 weeks old before she finally got back up to birth weight.  What a milestone that was!  Now if you are still reading along you should know that this was only the first stumbling block we came across.  We had no idea of the road ahead...  Through testing and doctor's visits we found that she was actually born with a genetic abnormality.  She has a microduplication called 16p13.11.  That is it.. it doesn't have a fancy name or an awareness month and ribbon.  Just 16p13.11.  What the hell does that mean?  We still don't exactly know.  There are any number of behavioral concerns we may have to face.  I can tell you we have already faced a few.  But this microduplication was not the top concern for us at the time.  At 10 months old she underwent cleft repair surgery.  The surgery went wonderful and her repair is beautiful.  You really cannot tell any longer by looking at it that it is all that different from anyone else's mouth.  Her recovery was rough going in the beginning but children are so resilient and she mastered it wonderfully.  We were a bit of a mess at times but I adapted the mantra that "I can only do what I can do right now"  I decided not to borrow tomorrow's problems and only focus on what we had going that day.   We have come so far since then and I have so many stories to tell.  I think I should end my intro here and I can focus more on the specifics of events up to our current point but to suffice it to say.  It continues to be a wild ride full of surprises!