BIG, BIG, SIGH.

So we had our meeting with the feeding team at Children's last week.  The feeding team is comprised of speech pathologists who intently stare at your child while they eat/drink.  Olivia decided she would give them something to stare at and continuously said "my mum" while pointing at me, and saying "NO" when they told her to take a drink.   My daughter for sure.    

We had reduced the thickness of her drinks by 50% when Olivia started showing signs of aspiration again.  At that point, it seemed even at 50% was too thin, So here we are again, at "nectar thick" liquids, which to me, look disgusting and I can't imagine ever drinking them, but Olivia doesn't really know much better.

My heart is broken for Olivia.  She begs me for water.   And if I give her even the smallest sip, she starts coughing and choking.  Yet she continues to try again and again, because she doesn't give up.  She is determined.  She's been through hell and back in 20 months and not once has she stopped smiling.  Not once has she slowed down.  And when the whole world seemed to crash around me, I saw the sparkle in my little girl's eyes that told me she would be OK.  I just never had any idea it would take this long.     You won't meet a happier child than Olivia.  There is just something about her that lights up a room.  

I'm not sure where people get the idea that they should try to diagnose Olivia or suggest treatment for her.   In the past 20 months, I've done more research on laryngeal clefts and their repairs as well as dysphagia and aspiration than I probably did in my 4 years of college.  And because of it's rarity there isn't all that much research, but I found what there is!  To argue with me incenses me, and by the way, it's rude.

This is what my past 20 months has been about:

Now, do you want to try to tell me I don't know what I'm talking about? 

If I could go through all of this for Olivia, I would in a second.  It literally hurts my heart to have to put her through all that she has gone through.  I know it could be much worse, and I'm thankful that it isn't.  It doesn't make it any easier though.  It doesn't take away the sting that there is something wrong with your baby.   I think back to when I was pregnant, I did everything I was supposed to.  I took my vitamins every day. I didn't drink, I didn't smoke, I didn't even take Motrin.  I can't help but wonder, what did I do to cause this? Maybe nothing.  But it will always be in the back of my mind. 

So now I wait to hear what Dr. Rahbar wants to do next.  It's been mentioned another surgery is possible.  I can't even describe the anxiety I felt the last time she had this surgery, but if it will fix her, so be it.  Ill go to the ends of the Earth for this little angel, I just want her to be healthy!

As always, the support I have received from friends  is overwhelming. I can't say thank you enough to those who have called, texted, facebooked, or sent a card  or gift.  I would lie and say I'm fine, but I don't like to lie.  I can't ever thank everyone enough, except maybe by treating others as compassionatelyy as my friends have treated me.   :)

Babies

It seems quite a few of my friends are having babies lately.  As I see their precious photos on Facebook, I just can't help but miss the days of when mine were so little.   And then, the harsh reality of Olivia's whole newborn life, even her pregnancy gives me a stabbing feeling in my heart.   I can only imagine what it felt like to be her.  To not be able to breathe, to not be able to eat, to be put under the countless tests she was.  I know what it felt like to be me.  An emotional pain so strong I still feel it when I think of it.   I can't even fathom what it felt like to be her.  So, sometimes, when I just want to sit and relax, and Olivia just wants to climb all over me, and hug me, and kiss me and say "love you",  I remember that I'm lucky Olivia is even here.  I remember that she is SO attached to me because I was the one constant in her life throughout her traumatic experiences.

Over the past few weeks, there have been some signs that Olivia isn't doing so great with the thinned out drinks.  As a matter of fact, she kept stealing drinks from Christian and Julia yesterday and last night her breathing sounded awful.  :(.    Just a little overwhelming.  I had these high expectations that by September she would be "all fixed".   Unfortunately it's October and we aren't even close.  Seems to me we may have even stepped backwards a bit.    In all the research I've done, I've read some cases where the cleft needs to be repaired TWICE for the procedure to work.  I can't even explain how much I hope this DOES not happen.

Next week we visit the feeding team at Children's.  Hopefully they can provide some insight on what it's going to take to get Olivia better.  Here's to positive thinking!