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.

Sunday, April 22, 2012

frienship loss

I never thought that in my greatest time of need the ones I always thought I could count on would be the ones to let me down or would do the most damage, but thats seeming to be the case. Im sad about this loss but I was made awear tonight by a wonderful friend that as many frienships as I feel I may have lost thorought this journey with my daughter, I have either ganied an amazing new one or made stronger one I already had. And I should/ will treasure that and try and stay focused on how blessed I am. It has also taught me that I will ALWAYS be there for the ones I love, no matter what we may have gone through in the past. We all go through tough times but I will never abandon you when the going gets tough. "Friendship is one of the main things that makes life worthwhile. When you have a friend to confide in, suffering seems more bearable, and pleasures are more intense. Everything is better when you have a friend to share it with. When a friendship breaks, whether or not it is for the best, there is a degree of pain and mourning," I can at least leave this friendship knowing I did all that I could to try and make it work, it was their choice to end this and that I did nothing wrong. I can compleatly leave confident in that. They do not what its like to have a child let alone a child with a CHD and how lucky they are for that.....So my absence in my old life may be a dissapointment to some, but it you choose to understand me and stay with us we would love it but if not its your loss. That being said........ My daugher is a blessing, and I love her just the way she is and this new life I lead may not be "ideal" for everyone, heck its not how I planned it either but its my life, so if you choose to bow out at some point.... I understand and I forgive you. But dont you ever think for one second that I wouldnt do it 100 times over for this baby girl. She is worth it All! And im just sorry you will never get the chance to know her, cause she is EVERYTHING she is chalked up to be!!! <3

Sunday, February 12, 2012

ER trip on a sat night anyone?!

oh vey! Nothing like an ER trip on a saturday night to end the weekend! ;( After putting Ella to sleep last night I noticed it seemed like she was breathing a little "louder" than normal and I could physically see her chest going up and down which is also not typical for her. Normally I have to go over to her at night and put my ear by mouth to hear and feel her chest. So i watched it closely until brady got home from work and after him telling me I was not crazy we decided it best to just give CHLA a call. The on call doc asked how she looked, was acting, eating, fever, abnormal activity, everything was fine other than what seemed like occational loud breathing. But considering Ella just had open heart suregery and she did have chest tubes in for a bit they wanted to make sure there was no infusion, and that her lungs looked ok so they suggested we go in to the ER and get a chest Xray. So we pack her up sound asleep and take her to the only hosptial that we thought could remotely help us, Sierra Vista. The hospital was dead and when you walk in with a 5 month old baby saying she has a heart condition they get you in pretty fast, so that was nice. But damn are we spoiled at CHLA! the ER here is nasty, dirty, scary! I didnt even want to put her carseat on the floor in there! Anyways they checked her out once again in complete AWE and shock of her condition. I mean jaws on the floor. They looked at us like we were crazy and then proceeded to ask us how it seemed we were in such good spirits! haha this is nothing! lol anyways after ALOT of talking and explaning and a chest x ray, they came back and said everything looked great, no fluid, lungs sound great, sats were always great, no fever and of couse Ella's breathing was fine by then. Ella was great the whole time, smiles, laughing sitting quitely through her chest x ray. ( its her normal too! )So after alot of waiting and i think alot of nerves on their part as far as discharging us. They finally let us go home around 5:30 this morning. We got home just in time for Ella to decide it was time to be up for the day. So I called my mom and she came over to watch Ella for us so we could try and get some rest before Brady had to head to work. But as soon as we climb into bed my phone rings, its the ER dr saying that they went back over the chest X ray and did see some fluid around the lungs and they thought she might have an infection in her right lung, which of course could lead to pneumonia. ;( FUN! so they asked us to call CHLA and have them call Sierra vista to go over the results. We talked to our Cardio at CHLA and before him even talking to the ER doc at Sierra he said how is she acting? perfect. normal Ella. He says he does not think anything is wrong and that he does not believe she has pneumonia, and this coming from a usualy pretty cautious cardio. He said she is showing no signs of pneumonia and after talking to the ER doc said there is definatly no pneumonia as they compared last nights chest x rays to the one they took last month and its identical......Our cardio actually said that coming from one dr to another he had no clue what the concern was. So that is that, we are going keep an eye on her this week and get in with our cardio here this week as well. We will be heading back to CHLA on feb 28th for a re check which was already on the books before this. My thoughts were that since she just started eating recently and sometimes she gets so excited to eat she drinks super fast and chokes a little and possibly that got into her lungs?!?!? but they do not think that is the case. Anyways now Brady is at work and we are both running off of maybe an hour of sleep. Hoping she does better tonight, cause this paranoid momma will not sleep one bit even if no one else seems concerned! and all though im currently not concerned the night always seems worse...;( Still waiting for the "post Glenn feeling of a bit more normalcy" part to kick in. Im still on damn pins and needles it seems!

Tuesday, January 17, 2012

heart broken.....for my heart mommies

im not sure if this post will be long or short, im just running with this. My heart is so incredibly torn tonight. While I am on cloud nine that my baby girl is out of the hospital, and doing wonderfully I am HEAT BROKEN that my fellow heart mom friend has lost her baby boy tonight to this Fing CHD!!!This yo yo, and this mind F&%*&! that this disease plays with our hearts and minds is just not fair! I left the hospital today prasing God that he saved my baby girl again! She survived! how lucky are we! and then less than three hours later I find out my fellow heart sister lost her baby boy and im cursing everyone and everything! I know is this not the way to handle my anger, but i dont really care right now. I am so sick and tired of hearing that, "another angel earned their wings" or "god has another beautiful angel" " they are in no more pain now" Screw that! Dont get me wrong I know all these statments are true but you can only hear them so much in one week. Why cant these angels stay with their mommies and daddys and family, why cant they be painless here with US, and why cant they be angels on EARTH!?!?!?
I have been really blessed in life, although i have lost my grandfather and one of my bestfriends at an early age. I can not even fathom the pain of loosing my child. And the fact that, it could actually be my reality pulls at my heart, and is in my thoughts EVERYDAY. One of my sweetest friends lost her baby girl to HLHS just a few days after Ella was born..... It killed me, just joining the HLHS journey it hit me hard, and she has grown to be one of my best and most wonderful friends I have ever had, and I have never even met her in person yet,( I love my sweet Brookie Cookie, and she will forever be Ellas heart sissy!) I also had a friend lose her baby unrelated to HLHS the night after Ella was born, this too shattered my heart<3 Naya will always hold a place in my heart. My heart is aching so incredibly bad for all these innocent babies that are never given a chance. Tonight as i tuck my sweet baby into bed, I feel so much love,pain, sorrow, anger,and frustration. I am so greatful and blessed to have my baby laying next to me, breathing, laughing, smiling. Its just not fair, everyone deserves that. I pleed and pray that god never takes her from me. My sisters that have lost their babies, you are all amazing, every single one of you, i know i did not name everyone. Unfortunatly there are so many. My heart aches for you every night and when i look at Ella I think of yours. I dont know why god chose to save my daughter right now, but I Pray that he continues, because im not sure i could EVER be as strong as most of you are.<3