Friday, November 1, 2013

Tipping point,

I despise the saying when it rains it pours. Sick baby. Took her into the ER last night when she woke up with all most no voice, and a cough that too me sounded like RSV and sats in the high 60's. Just two hours before when we put her to bed she was fine! We did not trick or treat or take her to swim yesterday cause she had a slight fever the day before but otherwise no symptoms. Took her into the ER at around midnight. I HATE our local hospital ER. There is absolutely nothing like a children's Hospital. I love CHLA. Here the ER is dirty, I mean pea tree dish dirty. I want to burn my shoes that I wore. Plus the drs and nurses treat me like I am just some young naive girl who has no clue what my babies saturation should be and precedes to tell me that if she has RSV they would do nothing differently so there is no need to test her!?!? EXCUSE ME??? At that point I put my foot down and said umm, if my daughter has RSV we will be on the road to CHLA before you get a chance to discharge us. His response is " we will do a test then"( clearly annoyed with me) and darts out of the room without another word. Did I mention how much I miss CHLA? Oh and lets not forget to mention our RN comes in with a mask on telling us all how sick he is and then coughing right at me ( yes he was wearing a mask but turn your head or please DON'T come to work in an ER sick) As we wait two extremely drunk underage kids come in and proceed to throw up for an hour in our shared not so private bathroom. That was lovely to listen to laying there with my sick baby for. Just when I thought things could not get worse dispatch calls and says they have a trauma coming in, what you ask...a multiple gun shot wound.  We do not live in a large town, this is not a typical night in the ER, gun shot wounds that is. They finally come in do her X ray, do an RVS swab and notify us that her RSV swab came back negative ( best part of the night) The Dr comes in says she might have a slight ear infection and that he is going to put her on amoxicillian.......really!? I had JUST got done telling them her medication list. She has been on amox twice daily since she was born! He says " oh right, okay well continue that"- ( yes thank you, cause if you said otherwise we might have stopped it????) Why must we be so far from CHLA!?!?  Discharged, with no answer home by 4am. Ella up at 6, Brady off to work at 8 and now here we are. Tired, worried, annoyed, sick and oh did I forget to mention Ella broke my phone yesterday? Yes I am having a full blown pity party for myself right now. I try to stay positive most of the time ( try being the key word) but I need a pause button. I am still trying to get used to this damn diabetes crap and that alone is making me a grouch and this is just adding fuel to my already large fire. Rant over, for now. Happy Halloween!

Saturday, March 16, 2013

It has been a while...

     For the last couple weeks I have been having a harder time then normal. While Ella is doing great, I am finding myself more sad than scared lately. The other day while Ella and I walked to the grocery store we passed the elementary school down the street from us. All the kids were out playing on the playground and in true Ella fashion she waved to ALL of them, telling them "hi!" and then proceeded to just stare at them and smile. This happened for a good five minutes as we traveled around the entire school. It was so sweet but at the same time completely made me burst into tears. It was as if she was wishing that could be her, she was in Awe. At one point she just laid her head on the tray of her stroller and gazed and smiled, watching them all play. It broke my heart. I do have very high hopes for my daughters future and want to believe she will live a VERY long life, but sometimes things like that just get to us heart moms. Things like, will my daughter ever go to school, have friends, swing on the monkey bars, or sit on a swing  talking with her first best friend at recess? For instance tonight when I laid her into her crib with her bottle and she waved to me as I left the room. It made me not want to leave. I know she was just saying bye because she was going to bed. I always go back in and tell her "no baby it is not bye bye, just goodnight" The problem is I still have that fear of every time I leave her that it could be the last, it really messed me up.... blah  However  today was a special day and reminded me of how strong and determined our HLHSers are.
   Today Ella and I drove down to Ventura, about two hours from us to celebrate one of her heart brothers 2nd Birthday!! Lucas is HLHS as well. To top off this day there were also six other HLHSers at the party. One of them was Jeni Busta, being one of the oldest HLHS survivors at 28 years old. Many of you may know her she and her husband have stayed with us many times as well as been to many of our events. Today our 5 HLHSers under the age of five, celebrated one of their own at a park. ;) They ran ALL around, chased bubbles, laughed, swung on the swings, fell in the dirt, ate way too much candy and did everything a "normal" healthy toddler would do. It was amazing to be amongst so many others that knew exactly what we have gone through and too just see how well they are all doing..... that is priceless. There were five heart moms, five heart kids and one heart adult ;) all thriving, all LOVING life, wearing their moms out and eating lots of candy! HA! Not one stood out amongst the MANY other kids playing on that playground. ( okay maybe a few of them were a little blue from the cold, but hell we'll take that!) So my point was today was an awesome day, a typical day that any mom would spend with her kids celebrating their friends birthday. Taking pictures, singing happy birthday, and eating cake. This bunch just happens to be extra special, and damn I am so proud of all of these miracles and their families<3
        Thank you for sharing your special day with all of us sweet Lucas!
 Here are a few picture of our warriors<3

                                                        On our way to Lucas' 2nd birthday!                              

Trying to get a good shot of all our warriors! lol  Jeni Busta ( HLHS as well) you sure did try!! ;)


                                                                  LOL I have no idea!

                                 Ella and Townes swinging ( Townes is HLHS post Fontan)

                                                             On our way home<3
                                                         Amazing day, so grateful! <3

Tuesday, September 11, 2012

Birthday approaching....

So many emotions, so many tears and still so many fears. My sweet baby girl is about to turn ONE in two days. Here are a few facts....

  • Congenital Heart Defects are the #1 birth defect worldwide
  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
  • Each year worldwide 100,000 babies (under one year old) will not live to celebrate their FIRST birthday
  • Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their FIRST birthday
 So as you read that and take that in. Understand  this is what we( as heart moms ) FEAR EVERYDAY this is what we LIVE for every day as well. We go to sleep each night not knowing if our babies will wake up the next morning. Hoping and praying we are blessed with another day with our babies.  One year ago today I was not sure  what my future held as Ella was just about to be born , would she live or die would she survive her first open hear surgery??...  today I still don't know. But TODAY I do know she is still here, she is living life, thriving and beating the odds!!!  My daughter does have a uncertain life expectancy, but that does not change how any of us feel about our heart babies. We choose to live life to the fullest, we choose to give them every chance in the world to live a "normal" life,  a full life! These babies WILL surprise you all, they are FIGHTERS they are WARRIORS! The have shocked us all! Anyone that ever tells you these babies have no "quality of life" are full of SHIT!  sorry ;) but its true. Ella May is AMAZING and doing much more than I had ever expected even a heart healthy baby could do!  She is a miracle, she is our miracle. 
     That being said, there is still not a night that goes by that I don't fear my daughter may not wake up. Infact nighttime's in general scare me still . I hate to be alone. I cry a lot . My mind still goes to bad places. I very rarely relax at night, I have not slept in quite some time... but every bit of it it 100 percent worth it!! So THIS is ALL why this 1st birthday is SOOOO huge for us!! This is a day we were never sure would come! But how lucky are we?!?!? how Blessed are WE!??! She is still here, she is still thriving, she beating ALL odds and we are so than full to all of you for being apart of this journey with us!! Here is too MANY MANY more years with our miracle! THANK you ALL from the bottom of our 2 1/2 hearts!!  I have a feeling this blog will continue a lot thought the next few days... my emotions are running crazy!!  Thank you to all our supporters for everything!! <3 The Beckstead Three!! <3

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

Wednesday, April 25, 2012

Speech for the American heart assocaition Heart Ball

Thank you to my momma for all you help writting this <3:
Back in February of last year, my husband, Brady, and I were your typical newly expectant parents.  We talked colors for the nursery and names for our unborn son or daughter.  We sailed through our prenatal appointments with little thought to any dangers lurking for our unborn child.  It was in the 12th week of our pregnancy that our world began to spin out of control. 

The doctor’s word rang in our ears; “We’re concerned about your baby.  It may have a chromosomal abnormality.” Within hours we were seated across from a genetic counselor who gently explained all the devastating possibilities; the majority of which never really registered with either of us because we were simply in shock . For a moment I think time literally stood still. Our minds immediately jumped to was this our fault, could our baby survive, would I even  be able to make it full term, we felt so incredibly helpless, lost, and terrified.

She shared with us that based on this measurement; it’s likely our child will have either Down syndrome or Turners, and if not those then there was always the chance that there was a heart defect.  We spent the next ten agonizing days waiting for the results of our CVS; a painful procedure that was risky to our unborn child but was necessary to provide more information.  In the end we were rewarded with the results that all her needed chromosomes were intact!  Her?  We were having a girl!  The tears started again but this time tears of joy.  We laughed and cried and called our daughter by the name we had been keeping for her all these weeks; Ella May Beckstead.  We enjoyed the news for a few hours before we were thrust into what’s next, as there  was still an indicator that something could be terribly wrong, and there was that lingering comment about the possibility of a heart defect.

We were then told we’d need to wait another unbearable six weeks before our baby’s heart was even big enough for the ultrasound to reveal anything so we were left to wait with only our thoughts and fears, and the painfully slow calendar inching by.   Finally, in the beginning of our 20th week, we were able to have our follow up ultrasound.   Clearly, this visit wasn’t met with the same joyous anticipation that our previous ones were but we were resolved that no matter what the outcome that we were going to do everything in our power to give Ella a fighting chance.  However, we were never fully prepared to hear the words that our precious baby had only half of a heart.  Ella was diagnosed with a severe congenital heart defect known as “Hypoplastic Left Heart Syndrome” ( hlhs)
Thirty years ago that was a certain death sentence because there was no known medical procedures, short of an infant heart transplant, which many children didn’t survive even when they were lucky enough to get one.  We were given hope when we were told about the three stage surgery known as the Norwood Procedure, which would give Ella a fighting chance to survive.  You hear these kinds of words and you think you’re digesting them but there was so much we didn’t know.  So, we found ourselves drawn to the internet to begin our education but that proved to be a dangerous place to start our journey.   As anyone with any illness will tell you;  there are beautiful, encouraging success stories that will renew your faith in the possibilities but there are also dark and heart wrenching stories that will paralyze you with fear. We worried would our baby even be a candidate for the 3 surgeries, if so  would she be strong enough to make it through, would we ever hold her or bring her home? And if  she did make it out of the hospital alive, would she be able to eat by herself, breath on her own or ever leave our house, without fear of her getting sick, would we ever get to celebrate her 1st birthday? Germs can be life threatening for these kids, and could immediately land them in the hospital with even a small cold. The future for Ella could not be promised and never will be. She will always have half a heart and while they can try and help her they can never FIX her. And even if she does make it through the 3 stage surgeries a transplant is always a possibility for her. Although we had our share of dark days, we chose to believe in Ella and her future, no matter how scary it was.
That future began on a beautiful Tuesday morning, September 13th, 2011 when she was delivered by C-section with a team of about dozen medical professionals standing by.  Her grand entrance was stage worthy, ensuring her place in the family productions somewhere down the road, as her powerful cries filled the operating room and her color bloomed a beautiful rosy red!  To look at her one would never guess what lied beneath her perfect chest.  This is not an uncommon beginning for these HLHS’ers, as their challenges begin a few short days after their birth when their hearts are unable to maintain the blood flow to and from the lungs.  – My first thought upon seeing her was she “well she looks perfect to me” and maybe I could just sneak her out the door and take her home and save her from what was to come. Maybe they would take one more look at her heart and realize they had made a huge mistake and that her heart in fact was whole. Unfortunately none of the above would prove to be the case. 

Ella’s first open heart surgery was scheduled  for a mere 48 hours after her birth so we spent the night before holding her, praying for her, and committing to memory the look of her unscarred chest.   The medical team wheeled her away at 8:30am with promises that they would take good care of her, and they did just that. Hardest thing im sure I will ever have to do is hand my daughter over knowing this could be the last time I might see her alive. They took time to prepare us for how she would look post op so we would not be alarmed but honestly there is little that can prepare you to see your two day old daughter fully intubated, with her chest still open from the surgery, her tiny body swollen from the excess fluids, and connected to more monitors than we thought possible.   But you know what?  She was alive and that was the answer to our prayers.  There were numerous hiccups along her road to recovery but none that were insurmountable and 50 days after her entrance into this world we got to bring her home!

The idea of home was the ultimate joy and fear rolled into one, as home meant 9 separate medications a day, a pulse/oxygen machine 3 times a day, physical therapy, limitless phone calls to the hospital and her cardiologist, and an endless supply of hand sanitizer but she was home!  Each day had its own challenges but Ella had done all the hard work up till now and now it was our turn to keep her safe .  A sanitary environment was critical to her recovery, because a simple cold could prove deadly to these fragile babies and because Ella had the nerve to be born at the start of flu season, it now meant we had our work cut out for us.  She barely left the house; it was terrifying if we did take her in public as we were constantly in fear that she would catch something that could be life threatening to her weak heart. We had to severely limit all visitors, that is until she let us know it was time for surgery number two.

Ella is now a vibrant 7 1/2 month old baby weighing in at an impressive 17 pounds.  She laughs.  She touches/scratches our faces. She tries to roll over. She drinks from a bottle, which is not a small feat for these babies who have trouble learning to suck because of the intubation, but most importantly she has stolen our hearts.  You may have heard of the quote by Ellen Cantarow which states “Making the decision to have a child-its momentous.  It is to decide forever to have your heart go walking around outside your body.”  Well, now we know what that means . 
 Ella will still need at least one more open heart surgery in the next 2-3 years. She will have constant cardio visits for the rest of her life and major restrictions as far as her how much physical activity she can endure, as well as a weak immune.  And even all that does not promise that she may not need a transplant down the road. I worry every day for Ella. I pray every night that we will be blessed with one more day with her. I pray that when the day comeskignhgjm that she is old enough to realizes she has a questionable life expectancy we know how to handle it. The reality is we don’t know how long we will have with Ella but we will do everything we can to make every day we have together the better than the last.   So needless to say we don’t really live what you call a typical “normal” life anymore, we never will,  but we have a new kind of “normal” and its our “normal “
You clearly had it in your hearts to have joined us here tonight and I can only pray that you’ll continue to support the American Heart Association, as it not only supports research and provides education but its very existence gives hope to the many of us who have decided to let our hearts go walking around outside our bodies.