THE DAY HE GAVE ME LIFE

September 23 will always hold a special place in my heart.  It will be a day that I will NEVER forget, for 2 reasons....

Sunday, September 23, living in all the glory of single girl - sunday funday on west 6th in Austin, my life was soon about to change.  While quickly playing a game of skee ball at a local spot, by myself, waiting for my friend to pay the tab, he walked up to me and challenged me to a game.  I laughed and quickly accepted.  I won.  He challenged me again, this time for lunch.  I won...again.  At that moment, my girlfriend - Amanda, ran up to me and shouted that "we needed to leave NOW", we were going to be late for our skee ball league game, at a different bar. (don't judge me for being in a skee ball league, it was fun, and yes, there really is a skee ball league)  I almost ran out of there with out speaking another word to him, but was stopped, and he asked for my number to take me to the lunch I had won.   "Here's my number, call me, maybe".  After 2 weeks of texting/talking while he was away on a work trip, we finally met up for another sunday funday and lunch.  The rest is history.   On that day, September 23, God knew that placing us both in the same spot, our lives would never be the same.  He gave me a life that I could never dream of.  He knew that one day, we would be the parents to this special angel that he was creating.  Only he knew what he was doing on that Sunday - by the way, I thought God rested on Sundays.... however, that mans work is NEVER done.
(weird that as I write this, one of Gabes favorite songs comes on my pandora...YES God, I am listening)

Fast forward....

Monday, September 23, my child lays in the NICU at Dell Childrens, waiting for the MOST important surgery of his short little 2 weeks of life.  He lays there peacefully sleeping, intubated to help him breath.  I have never seen his whole face.  He has been tubbed and taped and wired since the first minutes of life.  Today would be the day that I tried to talk the doctors out of. It wasn't the normal - go to the hospital and hold him all day, kind of day.  I got there 3 hours earlier than usual to get my cuddle time in, knowing I wouldn't be able to for 7 days.  "I know there is a different way to get him to breath, he doesn't need a trach" I said.  For 2 weeks, I selfishly fought with the doctors about a trach.  I couldn't wrap my head around the fact that our lives would not be "normal"  "NO, I don't want to see what a trach looks like on a DOLL"  this is my child...he is not a doll!! "NO, I don't want to talk to other parents who have been through this"  this is us, not them.  Finally, the doctors said I was making it worse by not doing this.  The tubes could potentially harm him.  He needs this.  Our families all came in.  We all prayed.  We all cried.  I was sobbing... like the ugly "Kim Kardashian"crying.  I couldn't contain my emotions.  I couldn't understand why this was happening. My child. My 2 weeks old baby was being wheeled away in a tiny little incubator.  Wrapped up so innocently. His big peaceful eyes staring at me through the window.  Not knowing what was happening.

We waited for about 2 hours for his cranial facial dr to come out of surgery and tell us that our option of carving out his nose holes (his little nose holes are closed) was not going to happen, and he in fact was getting a trach today.  The ENT was about to start.  My world was closing in.  I cried for another 2 hours.  I was so hopeful that there was another option. But this was it.  Our fate was a trach baby.  God knew what he was doing.  He was giving us life.

After about 5 hours of surgery, we were finally able to see B.  They warned us about what we would see.  He was going to be COMPLETELY sedated and paralyzed for 7 days.  There was to be NO movement from him so the trach could stay in place.  I walked in to see his face.  No tape, no tubes, no wires.  His cute little chin, his perfect lips.  His cute little face.  He was free.  I walked in to a life less child.  He lay there still as can be.  He was pale.  It was the most horrific sight.  I just wanted to hold him and cuddle him, but all I could do was stare at his amazing beautiful face.  It was at that moment, between the tears, that I realized "God gave me life".  He gave me a life that I could never imagine I would have as a parent.  It was at that moment, staring at him, that I knew this was what I was meant for.  My life started that day. Knowing that my child was going to soon breath on his own, my life started. I was all in.

After 7 days of being on meds, they started weaning him off.  He was breathing over the oxygen machine, and they were slowly weaning him off of that.  He was breathing from his trach.  His life was starting.  Soon after that, we were able to hold him.  We were a trach pfamily.  We all had to learn the ins and outs of caring for a trach baby.  Trach care, trach change, trach cpr, trach supplies, trach machines... everything you thought you would NEVER need to know, well, we know it all now.

It was on this day, September 23, God gave ME life.  

Its been a year of living with a trach.  Its been one hell of a ride, and its not stopping us.  We are a normal trach pfamily.

Happy 1 year of trach life my little bear.  You have been such a joy!  We love watching your every move.  You keep us all smiling and laughing.  Your little "squeaks" that you make light up our lives.  I can't imagine life any other way.  This is it, and this is us.

http://www.gofundme.com/58c7p4


- S

Every course has an obstacle

Its been such a long, almost year of a journey...speaking of Journey, who doesn't love the song "Don't Stop Believing"...its such a great song.  It also happens to be the song of our life for the past 2 days.

It's no surprise that when you have a medically dependent child, that you will run into problems. Problems with everything.  But when you do run into a problem, it seems to hit you straight in the heart, when you least expect it.

Our newest problem came from a phone call that I received yesterday, and then another one today.

Cincinnati Children's Clinic - Airway Specialist has been on our radar for quite some time. Back in June, we were finally able to get in contact with them and Brody's case was presented to the board there.  They presented 120 cases that day.  This is the trachea mecca of the world.  If you have an airway issue, this is who you want to go see.  I was so excited when we got the phone call letting us know that the "board" accepted us.  It was such a blessing, and at that moment I felt a rush come over me.  Like, I knew it was all going to be ok, and we were going to find a way to get Brody through this.

Yesterday I got a phone call from the Cincinnati clinic letting us know that Medicaid has denied the visit because it isn't medically necessary by their standards to go see them.  WHAT?? You have got to be kidding me.  I was told to hold tight, because we still had Tri Care to approve it.  Today, I got the phone call that Tri Care also denied it for medical necessity.  D.E.N.I.E.D.... I have never felt so heart broken.  What do you mean NOT MEDICALLY NECESSARY.  He is number 13 in the WORLD  with this.  He is currently only the 3rd person still alive with this issue.  I have the research.  This is necessary!  His life is my life.  I'm heart broken.  I'm back at square one.  Back at the beginning of our Pfight.  I'm sad... period.  It is not NECESSARY?? I'm sorry, but if it was their kid, it would be necessary!!! That's all I have to say about that.  I WILL get B to Cincinnati if its the last thing I do.  How? I'm not sure yet.  But I WILL!!   I have gotten in contact with Dr's for letters so that I can start the appeal process, but if you know anything about insurance, you know its going to be a battle.

But if there is anything that I have learned from Bear in this last year, its to pfight, and not to stop pfighting and having faith!

Hoping that the appeals work.

Right now I'm sad, lost, and confused, but every course has an obstacle.... I will beat this one.

http://www.gofundme.com/58c7p4

Keeping the faith,
-S