birthday and blues

 Can you believe Alexa Belle is now two?  I can still remember perfectly the anticipation of her. Knowing I was going to have a c-section and meeting our beautiful girl.  I couldnt wait... It had seemed like we had waited a lifetime to meet her.  I remember Kevin and I saying that she really must be the most wanted baby ever.  Not that each and every baby isnt amazing in their own way.  It was just we had waited for her for over five years.  Having countless losses and hoping each month that our amazing baby would be realized that month.   Sometimes I wonder if that time helped prepare us for Alexa?  I loved every moment of being pregnant even the bad times because that just proved to me more that this was a reality, and we were going to have our baby.  Dont get me wrong, losing her twin was a terrible experience, so bittersweet knowing one of our babies wasnt going to make it, but still knowing I had to be strong to keep our other wonder strong. 

Alexa came to us and all I can say is that it almost felt unreal.  She was a dream realized.  I know that I wanted everything to be special.  Every moment every breath means something.  I think that the mindset I had has made everything else a bit easier.  The day she was born I was in complete awe.  How did I deserve her, this perfect little baby?  Yet here she was so amazing and perfect.  We didnt know there was anything wrong with her.  I mean we did know about her heart defect, but that seemed manageable.  I remember thinking that I have to remember and cherish each and every moment beacause this may be my last baby and she was so precious.  So thats what I did.   I'm so thankful for those 6 weeks of worry free perfectness.  I can truly say that this time was pure bliss for our family.

It's so hard to put into words how we feel about Alexa, but can I just say how unbelievably blessed we are to have her in our lives.  No this isnt the life I would have chosen nor expected for her.  However Alexa is perfect I couldnt ask for a better kid.  Yes. I wish she was never sick and I would die if it would mean she would never have to experience pain again, but I wouldnt change anything else about her.  We have this perfect little girl and we were prepared to cherish every moment of her life.  So thats what we are doing.  To think the doctors think she may be done with a third of her life.  I feel like it's just begun...

We had Alexa's birthday party last week.  I wanted to make it great.  I did all the decorations myself and even made the cake.  I think it came out pretty good...  We played our DVD of Alexa's last year, had everyone do Happy Birthday to you in sign, and attempted to play party games with a bunch of two year olds.  It couldnt of been better.  Thank you to everyone who came out to make Alexa's day special.  We loved seeing you all there. 

Also a special call out to all my December mommies and babies.  You guys have been with us through our entire journey and we are so thankful to have you in our lives.  I hope to be able to meet up with all of you at some point in our babies lives, you guys mean so much to us.  Happy birthday to all those special babies too.  I hope to get all the kids on facebook when their birthdays come, but I havent been going on much these days and dont want to miss anyone. 

The last couple of weeks have been so jammed packed with activities and appoinments.  Being closer to family has allowed us to do so much more.  It's been great.  We saw my cousin Nate's band play (Old Hundred) what a talented bunch of guys, they are so good!  If you get a chance you should check them out.  We had my cousin Jennifer's 2 children spend the night with us after Ali's party the kids had a blast!  The next day we all got together and went to the zoo to visit with santa.  This weekend we had a family reunion and Kaylie was in her glory because there were other kids, dancing, games and santa!! 

It hasnt all been fun and games those are just the highlights.  We've had a couple of important appointments with Alexa.  We saw her GI specialist.  Her dysmotility appears to be getting worse.  She seems like she is in constant pain especially at night.  It is so hard to find a balance with her meds, because if I give her too much fiber she has diarrhea, not enough and she's painfully constipated which means we have to give her more of her stool softener.  Meanwhile she hasnt been eating much at all, and is waking up most nights in excrutiating pain.  Meaning many sleepless nights for all.  Often times her belly gets so distended that her tube starts leaking bile at the site.  This burns her skin and makes it break down causing a lot of pain as well.    We're trying to find something to help ease her pain at night better than the tylenol and Ibuprofin we've been using.  

We also saw her neuromuscular doctor.  Her reflexes are almost non existent now ( i dont know exactly what this means)  I think it means that she is becomming weaker and her muscular disease is progresssing.  Also they noticed that her pupils werent dilating properly.  This means she may not be processing light properly...  We have to get her vision checked out again.  I just wish there would be one thing that worked perfectly.    The doctor wanted to schedule her lumber puncture, but we're trying to get everything scheduled together.  Her tubes snipping her frenulum, and another GI test. 

Most of this was written a few weeks ago.  I havent felt much like writing.  

Alexa had another ruptured ear drum.  Poor baby.  Meaning another trip to the ER just to get antibiotics.  We really need to get a new local pediatrician...  This pushes her tube placement back, as they need to wait until she heals before placing her tubes.  It seems like when she gets an infection or has anything more than her now baseline cold her body starts declining.  She's been so fatigued lately not doing much of anything.  Her nights have become a series of suctioning, vomitting, pain, and alarming (alarms going off every couple of minutes).   It makes me so sad to see her this way.  We do get blessed with some extra bursts of energy once in a while.  I love when we get those.  It seems like when she sees her cousins or family and friends she's able to do a bit better.  Although, not so much for her early intervention therapy appointments.  Although she has those nearly everyday. 

Things have been a bit tough lately.  I wish I could say that I'm able to brush everything off and stay positive, but I think I'm failing at that.  I try not to let Alexa see... Some days are a big fail.  I wish I could be strong all the time.

I'm having a hard time writing about whats going on so for now I'm going to just post what I have.  I did plan to write a bit more but words seem to be escaping me right now.  I hope you all had a wonderful Christmas.