Tuesday, May 29, 2012

Tube is coming out!

YAY! so our CHLA trip went GREAT! with the exception of "someone" leaving Ella's formula ( that we get for free from insurance, due to it being a special formula) AT HOME!! So we had to buy the 30 dollar formula bottle when we got to CHLA even though we have 30 of them at home! HA!
 Now to the good stuff! Thank you all so much for your thoughts and prayers, they worked! Ella's general surgery apt for her G tube and gall stone went AMAZING!! In fact our Dr tried to take our her G tube today! she said it looks amazing and we are ready! But I told her I needed just a bit more time, due to us still giving her meds twice a day through it....and she agreed. So we have one month from today and G tube is out!! that means my baby in COMPLETELY tube free for the first time in her life! And the hightlight of Surgery apt was NO SURGERY for her gall stone! they are not worried one bit after her X ray and said she may just pass it on her own! and since its not bothering her we will let it be!! How amazing is that!?!?
We were then off too Cardio, where we had an X ray that she hated for the first time ever, she has had about 25+ and they have never bothered her until now. Ella is weighing in at a massive 17.14 pounds and 27 inches long!! needless to say they are not concerned about her growing ;) Her sats were at 85- 91 the entire time and when our card came in he said she didnt even need an echo this time, cause she looks and sounds  amazing!! Everyone kept saying they couldnt even believe she is a hypoplast ;) Card said X ray looks amazing, lungs are clear, no heart murmur. He was shocked at her! I have never been more proud ;) He was not even awear that we had already took her off her Lasix  four months ago. He said I think we can start weening her off her lasix, X ray looks great! lol we told him she had been off it since her glenn four and a half months ago and, he glanced at assistant and said "damn" she really is doing great!" :) So end of story is we got the ok to travel!!! he told us to live a "normal" life ( with our obvious precautions with her immune system. just be careful) he also said.....this is a big one for me, its time to put her in her own room. :/ That will be REALLY hard for me but he thinks that will help her sleep better. ( as well as me and Brady) ;) So lots of wonderful things today. On top of seeing some fellow heart mommas and Ells Bells hanging with her boyfriend Bodie man (Amy Gerrish Bennett!)  We are also not back until the week before Ella's first birthday in September!!! HA!! thats so crazy to say that! Her first birthday is in 3.5 months!?!?!?!?  That is surreal to me.........and after that we are only at cardio every six months!!! <3

Made it home safe and sound, with a very angry, tired, feisty one in the car, and Ella didnt do so well either ;) Thanks again everyone SO much for your thoughts and prayers, they mean EVERYTHING to us!!!
 Love the Beckstead 3 <3

Wednesday, May 9, 2012

A friend is one who walks in when others walk out

I find myself writing about my "friends" alot these days. As once again I have been put to another frienship challenge.
About four years ago I was faced with a loss of a close friend, not due to death ( thank the lord) but just due to differences. And at that time in my life I was so bitter and angry and I wanted no one I knew to have anything to do with that friend. I am ashamed to admit that is not the first time I have done that. I  can chalk it up to I was young...but really is that an excuse....!?!? Since then I have learned my lession ( i believe) that you can never ask another to simply disonnect or heaven forbid "hate" someone that you dislike, just due to your own differences. We all have the right  to be friends with whomever we choose. I am so glad I learned that early on in life as it had made me a VERY unhappy person. People come into your life for a reason or maybe a season.....
My point of this post is no one should tell you whom you can and can not be friends with. If they have to ask you to choose than I believe they were never truly a friend to begin with.
Forgiviness is crucial. I am choosing to forgive and forget. I choose to be happy and surround myself with people that do and feel the same. I believe today president Obama just said in a nut shell we should all have the right to love whom ever who choose and not be judged. That to me has many meanings and really hits home for me today. As I would like the right as well to love/ care/ or communicate with whomever I like. That is my right. Just as it is yours.
 A little different post today, but it has been in my head for a while.

Wednesday, May 2, 2012

A year ago today..... I became a heart mom,  a year ago today WE began the  fight,  I learned the words CHD, HLHS,  Infant mortality,  "your childs life expectancy" and that my unborn baby girl would be born with half heart and may not live to see her first birthday. Right then and there my life changed forever. A year ago today we found out our unborn daughter would be diagnosed with hypolastic left heart syndrome. Today has been a difficult day for me. I cant believe how long it has been already. I am proud to say my daughter that some said would never live has made it to almost 8 months old. Its amazing! We have been through ALOT, but today I was also faced with the realization that  we are SO not alone and we are quite" lucky" in fact, hard for me to say, but true.  There is a family that lost there baby yesterday due to  spinal muscular atrophy. She was just 5 and a half months old. They were told she would maybe live to be a year and a half. She didnt make it that long. She was GIVEN a" life expectancy"...of less than 2 years. I realize I dont know how long we will have with Ella but to know she would NOT live past 2 years old..... no matter what?!!?!!? These two parents are THE strongest parents I know! To bring a seemingly healthy baby into this world and later find out that  she will NOT live past 2 years old and continue on with life.... how do you handle that!!?? They did the most amazing things with her! they gave her a bucket list and really let her LIVE her life! I have always stood by the fact that I will never take a day forgranted with Ella, I will not shelter her even though some might think I should. I wont because the song "live like you were dying" rings in my ears on a daily basis.  Ella is not Dying, she is infact LIVING and living a great life EVERYDAY!! I do  live in fear everyday that Ella may not wake up in the morning, but I also have the hope and  proof that it is  possible for her, at least she has the chance!! If I knew it was not even a possibility for her to live  im not sure how I would do.... I guess you just DO IT just like I tell people who dont understand how we do it.... you just DO! 
Today has been a bit much. And my plan for this blog was to tell you all about our weekend at the American Heart Association Heart Ball, that plan has change I will tell that story later. This blog is for me to realize a few things. Life can always be worse. We are so lucky we STILL have our baby girl, and she still has a chance to survive. And as tough as our life now is for us, so many have it so much worse. I just pray that all of us that have it" so luck"y truly realize and remember how lucky we actually are.  <3