tag:blogger.com,1999:blog-89453812692026377412024-03-13T03:18:16.205-07:00Hearts 4 EllaOur Journey with our precious half hearted angellissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-8945381269202637741.post-29390390306840944372013-11-01T12:07:00.001-07:002013-11-01T12:07:10.616-07:00Tipping 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! lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-60812210349232140432013-03-16T20:08:00.001-07:002013-03-16T21:44:02.862-07:00It has been a while...<blockquote class="tr_bq">
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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.<br />
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<br />
Thank you for sharing your special day with all of us sweet Lucas!<br />
Here are a few picture of our warriors<3<br />
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On our way to Lucas' 2nd birthday! <br />
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Trying to get a good shot of all our warriors! lol Jeni Busta ( HLHS as well) you sure did try!! ;)<br />
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FINALLY!</div>
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LOL I have no idea!<br />
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Ella and Townes swinging ( Townes is HLHS post Fontan)<br />
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On our way home<3<br />
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Amazing day, so grateful! <3<br />
<br />lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-826343011868474512012-09-11T20:16:00.002-07:002012-09-11T20:22:26.570-07:00Birthday 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....<br />
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<li style="margin: 7px 0px 8px 10px;">Congenital Heart Defects are the #1 birth defect worldwide</li>
<li style="margin: 7px 0px 8px 10px;">Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide</li>
<li style="margin: 7px 0px 8px 10px;">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)</li>
<li style="margin: 7px 0px 8px 10px;">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</li>
<li style="margin: 7px 0px 8px 10px;">Each year worldwide 100,000 babies (under one year old) will not live to celebrate their FIRST birthday</li>
<li style="margin: 7px 0px 8px 10px;">Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their FIRST birthday</li>
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<span style="color: #292929; font-family: Arial;"><span style="font-size: 12px; line-height: 17px;"> 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. </span></span></div>
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<span style="color: #292929; font-family: Arial;"><span style="font-size: 12px; line-height: 17px;"> 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</span></span></div>
lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-38206912159609916152012-05-29T21:47:00.001-07:002013-03-16T21:46:51.254-07:00Tube is coming out!<br />
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!<br />
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!?!?<br />
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<br />
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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!!!<br />
Love the Beckstead 3 <3lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com3tag:blogger.com,1999:blog-8945381269202637741.post-55817803956913509202012-05-09T14:53:00.002-07:002012-05-09T14:53:47.321-07:00A friend is one who walks in when others walk outI find myself writing about my "friends" alot these days. As once again I have been put to another frienship challenge. <br />
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..... <br />
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. <br />
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. <br />
A little different post today, but it has been in my head for a while. <br />lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com2tag:blogger.com,1999:blog-8945381269202637741.post-14132410962989017482012-05-02T22:33:00.003-07:002012-05-02T22:33:47.047-07:00A 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 <span style="background-color: white; font-family: 'Lucida Grande', Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 16px;"> </span><span style="background-color: white; font-family: 'Lucida Grande', Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 16px;">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 </span><span style="background-color: white; font-family: 'Lucida Grande', Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 16px;"> 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! </span><br />
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<span style="background-color: white; font-family: 'Lucida Grande', Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 16px;">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</span>lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-14292048879564169112012-04-25T20:50:00.000-07:002012-04-25T20:50:30.746-07:00Speech for the American heart assocaition Heart BallThank you to my momma for all you help writting this <3:<br />
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. <br />
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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. <br />
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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.<br />
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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) <br />
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.<br />
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. <br />
<br />
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!<br />
<br />
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.<br />
<br />
<br />
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 . <br />
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 “ <br />
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.lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com4tag:blogger.com,1999:blog-8945381269202637741.post-9241342972043805692012-04-22T23:41:00.003-07:002012-04-22T23:41:47.981-07:00frienship lossI 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!!! <3lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-3177792378722246902012-02-12T16:25:00.000-08:002012-02-12T16:25:16.847-08:00ER 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!lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com1tag:blogger.com,1999:blog-8945381269202637741.post-28246311387717171702012-01-17T23:55:00.000-08:002012-01-17T23:55:09.561-08:00heart broken.....for my heart mommiesim 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!?!?!? <br />
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.<3lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-48405772583971309232011-12-06T23:10:00.000-08:002011-12-06T23:10:59.867-08:00its been a while!So my plan was always to continue this blog, heck I had just started it not long before I had her! lol But I had no idea what was instore for me and I completly lost interest in this while in the hospital. Although day while in the hospital I would say tonight is the night I will update our blog! haha that never happend. The stress while in that hospital was OVERWHELMING beyond belie. I still dont think that at the time I realized just how stressed I was until we got home and I finally took one breath upon walking back into my parents house, let my guard down and poof,I was sick! lol<br />
Most of you were also able to follow alot of our "hospital journey" by my sisters blog, which really did help and make me feel better that I was not doing so hot on updating. <br />
Well we are Home now! Whew! four words I was not ever sure I would be able to say. We have been home for just a little over 1 month now. Once again like when we were in the hospital I kept telling myself tonight is the night i would update my blog! lol but again I never did. I think our start here at home was WAY more stressful than I ever anticipated as well. First of Brady and I both got sick the SECOND we got home and as most of you know its one thing to be sick upon bringing your newborn baby home and its another to be sick, while bringing your newborn heart baby home. The sickness although sucked was not the worst part the thought that we could possibly pass it to Ella and end up right back in that dreadful hospital just days after we left was I think actually making me sicker! Then we were also moving. HA! yeah two days after we get home we move, sick ,with a newborn heart baby! dont even ask me what we were thinking. I guess we just really wanted our own place back and to try and get baack some type of normalcy in our lives, something framiliar. Somehow I think that backfired on me. While we LOVE our new place, I still can not find that normalcy, or comfort that I have been longing for since we left for LA some four months ago. Dont get me wrong I/We are LOVING having Ella home with us! Its the most amazing thing EVER! She the biggest light in our lives and I know how blessed we are to have her home with us. But with all that wonderfulness comes a CRAP load of worries and more stress than i ever thought I would be able to handle. Im like a hawk now. Nothing gets past me. She coughs, she sneezes, looks at me wierd and if I dont call the hospital its a miracle! lol We sleep with her pulse ox on her all night and since she always desats while she sleeps the monitor is always beeping. I use to call the hospital everynight until after the 1000th call I had to get it in my head that this was just normal for her and that they are awear of her desats at night and allowed us to leave the hospital with that being the case. Then there is her G tube, that has taken some getting use to as well. At first it was very overwhelming and scary. Now its just the norm for us! Although I still am pushing her and hoping for the day that she will be able to take a bottle, the day will come, it just cant come soon enough! Taking a normal newborn baby out anywhere as moms know is a process, but Ella is a whole different story, she had nine medications a day and eats on her G tube every two hours for one hour, and spits up if you move her too much durnig feeds or for about a half hour after. Which leaves us with about an hour and a half if we need to get something done or go anywhere before we start over again. And feeding in the car is out of the question, as it makes her get sick everytime we have tried!! lol <br />
I know all my heart moms friends say it will get easier. I believe it I do! I know with each surgery it will get better. And although I would give anything to not go to bed everynight worried that we may end up in the hospital or that something will happen to her in the middle of the night, ill do it, and I will do it everynight for the rest of my life. She is worth every, tear, worry, stress, that we will have to go though, because with all of that comes so much Joy, and happyness. I have never cried happy tears more in my life that in have these past three months. Every little thing she does means SO much more now, im not sure if i might have taken thing more forgranted if she had been a healthy baby. Now sucking a pacifire for just 10 seconds and we cheer, she does tummy time for a minute and we cry, she allows us to stick a Q tip with medicine on it in her mouth and doesnt gag and its just so amazing to us! I just look at it like this. I have been a nanny for the past 11 years right, it was too easy to just give me another baby! God gave me this baby cause he wanted to challenge me. ;) I know the worrying will never stop, but what mom does not worry about their baby??!! <br />
We are so lucky and so blessed and so what we'er a little stressed. She is here with us still, she is hear today. Not a single one of us is promised tomorrow. So my plan is to try and make the best of everyday we are given with her. That may be a little easier said than done, and i know we will have good days and bad days, but they ARE DAYS! <br />
Now i cant promise anyone that as I continue this blog ( as often as I can) it will always be rainbow and butterflies but I can promise you that I will always to my best to look for it! <br />
This will be it for tonight because my hubby just got home from work and its time to take ourselves and our love to bed. Thanks for all the support my wonderful friends and family, and thank you for continuing to support us throught our journey. <br />
Lots of love The Beckstead 3 <3
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<a href="http://2.bp.blogspot.com/-M6BhInFlhYQ/Tt8RXP2cocI/AAAAAAAAAB4/Gs2i_s3MHI0/s1600/ellaphotoshoot4.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="214" width="320" src="http://2.bp.blogspot.com/-M6BhInFlhYQ/Tt8RXP2cocI/AAAAAAAAAB4/Gs2i_s3MHI0/s320/ellaphotoshoot4.jpg" /></a></div>lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com1tag:blogger.com,1999:blog-8945381269202637741.post-91565675622330526492011-09-15T07:25:00.000-07:002011-09-15T07:25:19.772-07:00calling all angels...I write this as I lay in my hospital bed just less than an hour before my not even two day old baby girl heads into her first open heart surgery. Im so scared and im laying here feeling so incredibly helpless. This is not write that I am here and not there with her,holding her hand and telling her everythings going to be alright. Although im so happy her daddy is with her right now and so happy that I have the most amazing family ever who snuck me out if this joint last night and took me to see my baby. I was able to hold her for the first time last night. It was the most amazing moment of my entire life. My heart is so torn right now. I know she is doing so well and we are so blessed for that but the same time I so incredibly. Sad that they wont allow me to be there. My heart aches for her. Please god I need my baby to pull through this. I want to get out of this hospital tomorrow morning and be able to run over to hers andjust hold her hand and kiss her head. I thank you all for your amazing support and love you have been pouring over us especially the last couple of days. I will get back to you all eventually. Please please continue to pray for our baby today. I am forever greatful to each and everyone of you. We will keep all posted as soon as possible. They anticipate us being notified by one. Sorry this is a short post and that I have not filled you all in on the past few days since her birth, I do plan on it. In the mean time my sister Ashley has started a wonderful blog and is keeping all posted much better than me. Plus she is a beautiful writer. So feel free to friend her. Her name is Ashley moses and I forget her blog name but it is posted to her facebook. Thankyou all again from the bottom of my heart. We are so lucky to have you, each and everyone of you.lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com2tag:blogger.com,1999:blog-8945381269202637741.post-34878627918553692832011-09-08T22:58:00.000-07:002011-09-08T22:58:40.906-07:00emotions on highToday has been a rough day...I have so many emotions running on high right now im not even sure where to start this post. With the anticipation of delivery my baby girl four days from now, in what should be the most exciting time of our lives im finding it hard to stay positive. There are so many babies that are struggeling for their lives right now i cant even keep track. Its a fine line i walk down right now trying to keep myself and my family positive not only for our sake but for my babies. She needs to feel my confidence and positivness and sometimes that is SO hard to do. I am now a lifetime member of the "heart community" I am a heart mother for life and while yes that is a club nobody wants to be apart of it is also a club that is just what I need right now, inspiring, supportive, caring, and one of the most important things being they have been in my shoes and no what we are going through. Yet there are many times that it seems such a sad place and its so hard. I have met a lot of other heart familys thought this journey, and there are a few in particular that i have grown quite attached too. My friend Alexis is one, she and I met on the heart moms website about a month before her baby girl was born, in May of this year. Her baby girl Scarlet has HlHS like Ella and was born about three months ago. She unfortunatly was not a canidate for the 3 stage surgeries that Ella will undergo. And they were told after her birth that she would need a heart tranplant to surive, only they thought they had more time. Alexis her mother, and her husband have been so inspiring and strong throught this and have somewhat been my inpiration and what kept me going. Sadly now they are in a race against time for Scarlet to get her heart and reaching out to anyone that is able to help. This breaks my heart, to say my heart is heavy tonight is such an understatement, as I also have another friend of the family whos baby girl is critically ill, unrealted to HLHS. She too is at our hospital and has been there for the past 6 weeks and they are still unsure of her exact diagnosis and if they are going to be able to save her. I dont have the right words to describe my feeling right now, while i know how I feel I cant put them into words.( I have never been good at that) I want to know why, and whats crazy is I would still not change my situation for anything. Ella is my baby and I love her and will love her just the way she is and I will fight for her till the day I die if I have too. But I will always wish she were healthy and would not have to fight for her life so hard from the begining, every baby deserves a chance at a healthy life. We also had Ella's last drs apt today, ( haha last before she is born that is)and if i never stepped into another dr office again that would be just fine with me. Esp this one. Im so sick of the way drs offices treat patients. I know its there job and they see it eveyday but come one people we dont. I feel like they think im a crazy, paranoid, freak of a mother already. just beacause I ask questions and expect to get answeres that I can hold on too and that will be followed through with. Is that really so hard to ask? Im sorry this is there job, I didnt pick this for myself or my baby. So pardon me if I ask alot of questions or dont know exactly what you are doing and why, but we are scared and are trying to be as "prepared" as we possibly can for this. It also does not help to hear one of our drs tell us today, "well the easy part is coming to an end" - im sorry but how dare you. Nothing about this has been easy. Some may think that we have an advantage to knowing about Ella's condition and while thats true and yes we have had time to prepare and we are thankful for that, it DOES NOT make it any easier. We have just been dealing with it for longer, we have had more time to process it, yes. But that also means more time to over think and worry, and alot less time enjoying our pregnancy.It doesnt change the fact that our daughter is extremly sick and will fight for her life from the second she is born. A little know fact: babies are born with a Heart Defect every 15 minutes. More of our children die from CHDs than ALL of the childhood cancers COMBINED!It does not change that fact either! I have felt so cheated when it comes to our pregnacy and now with the final staw being a C section, i feel even more cheated. I know alot of people have C sections, some even choose them, but its not what we wanted. Giving birth to my baby is an experiance i have always wanted. But this CHD has taken that away from us too. <br />
Wow anyways, with all that said we have so much to be thankful for too. Ella's NST went well today ( non stress test) and although her heart sometimes diped into some rather uncomfortable numbers the drs feel she should still be ok to wait for delivery on the 13th. She is estimated weighing in at 9.14 right now ;)go Ella go! <br />
Believe it or not I AM really exicted about bringing this baby girl into the world and sharing her with all her loved ones. She already has such an amazing army of people out there cheering her on and we feel very blessed. We are looking so forward to this next week, starting with this weekend when my sissy, John and my sweet baby neice (that i know will make me happy) gets here! They will be here sat and staying here until Ella arives! If there was ever a time i need my sister its now. Her support though this has got me through some of my roughest days, she has the kindest heart and soul and I am so lucky to have her by my side. Also exicted for my brother and sister in law to get here this weekend, coming from Utah for a few days! And then the rest of our family throught the week. So this weekend will hopefully be full of much needed distraction and happy times, which is just what we need right now heading into this week, a week full of lots of unknowns, excitement, family, love, and prayers! We are all going in with our boxing gloves on and you better bet this is not a family to mess with! Gonna fight for this baby girl with all our might. ;) To end this rather long and (im sorry) somewhat depressing post. ( although i might have to add here as i was reminded by my sister tonight, these are my thougts and feeling and no one HAS to read this, right?!) I would like to just remind everyone how blessed we all really are. I know we all take life forgranted at times. We get caught up in petty things in our lives and forget what is really important. I am just as guilty for it. Most of the time we dont see how petty we can be until something horrible happens to us ourselves and we are slapped in the face with it. Just please dont take forgranted the "small" things in life, those things you never knew you needed until you dont have them anymore. I hope everyone has a great night, hug and kiss your loved ones extra tight and tell them how much you love them as we all should do everyday.lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com6tag:blogger.com,1999:blog-8945381269202637741.post-42830311772990468592011-09-01T16:10:00.000-07:002011-09-01T16:10:17.173-07:00Ella's Arrival date........Well we found out when we will be expecting Ella. Although we will no longer be inducing, I am now having a C section. The C section is schedualed for Sept 13th at 730am. We are forced to go this route now because she is too big for me to deliver naturally :( Today she measured in at an estimated weight of 9.6 pounds. Now before you all say, "but this is good", "the bigger the better"and "C sections are not all that bad" I know. I realize all this. Where my problem lies is that my reconvery time from this C section will be ALOT longer now. They expect me to be in "recovery" for at least 3 days and this means, that since Ella will be moved immidatly to her surgery hospital after delivery ( my delivery hospital and surgery hospitals are differnt, they do not deliver babies at Childrens hospital)and although the two hospitals are right next door to eachother, i will not be able to leave my hospital to see her until im fully recovered and discharged. I am super super upset about this. I feel like someone just let all the air out of me. I was so pumped to get to our apt this morning and get JUST ONE piece of good news. All i wanted is ONE drs visit througth my pregnancy where I could leave super excited. But no today once again I had to leave the damn hospital again in tears. I realise this is not the worst thing that could happen. Some may think im over reacting, but im sorry i just wanted to catch a break. Just one. The saying stick a fork in me im done is an understantment for me right now. It doesnt help that she is so big and im so incredibly uncomfortable. I know the uncomforable part is part of being pregnant but She is measuring 2.5 weeks ahead in size and my belly is meausuring 2 weeks behind in size so if you do the math, the room in there is super limited. Last week someone thought i was only 6.5 months pregnant, it just does not make since, i dont know where she is going in there. <br />
Anyways, i know all in all my news could always be worse and I need to be very thankful that she is growing so well and doing so wonderfully still. Her heart is looking the best it can, there is no fluid around it so far so there are no immediate signs of heart failure and these are are WONDERFUL things. I just wanted to see my baby when she is born, just wanted to hold her for one second, get one picture of our family without her tubes, lines, and scars. :( This is unfortunate but as i said earlier not the end of the world, that my baby pull through all that lies ahead of her is what is most important. So I will quit my complaining now. I have been upset all day, crying my eyes out and clearly that is not helping me or making anything any better. SO what do i do now, accept it and move on. It is what is best for Ella that ultimatly matters. And my being so stressed out and upset can not be helping her. A friend of my mother in laws wrote me this yesterday it was advice a friend of hers gave her when she was going though a similar situation "let her hear you laugh, let her feel your love". What better way to help her to be strong than to hear me and feel be beinging strong. She also said,"I am NOT going to stress out constantly and I am NOT going to grieve while she is still alive - I am going to let my baby hear what it sounds like when I laugh and let her know how much she is loved and wanted"- this is exactly how I have tried to go through this pregnancy. It has not been easy, but it must be working somewhat cause she is still here with us now and hey, she is 9.6 pounds so i must be doing something right! thanks for listening to my rant today everyone. If ever i get too down and out in my posts feel free to slap me around a bit or put me in my place, I dont need to pull you all down with me! <3lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com6tag:blogger.com,1999:blog-8945381269202637741.post-19111588455926702202011-08-30T17:32:00.000-07:002011-08-30T17:32:57.079-07:00Trip number two to L&D Well we had Round two in labor and deliver yesterday. I called my dr and went in around noon yesterday afternoon after having cramping all night. Got there they admitted us, hooked me up and I was having contractions pretty good ones and close together. So they moved us to a big labor room thinking we may be in for good. They hooked us up again her heart rate sounded wonderfully and she was moving like crazy, probably mostly becuase she had not eaten either all day,with the exception of the ice chips they let me have! (They wouldnt let me eat all day in case) My dr came in checked me a few hours later and I was not dialated and my water had not broke so they monitored my contractions and hooked me up to an IV thinking maybe dehydration was causeing my contractions we did that till about 730pm that was not helping. They then tried to stop my contractions again by giving me a shot of tribudaline as they appreared to not be doing much, the medication did not stop them just made me feel loopy but my pain did go away. After another couple of hours my contractions started getting further apart so they decided it would be ok to send us home for the night, since i was still not dialated. Thank goodness cause I was starving and still had not packed for the hospital yet..i know i know. I will be doing that today so still no baby but Dr apt on thursday to find out our induction day! Being there was a very anxious, nervous, sureal and scary feeling. I know that may seem silly but really i have no idea what we are in for when we get there, the posibility of C seciton is just a small piece of the equation. The head of the NICU team did however come into our room and reasure us that they are awear of little Ella and are 100 percent ready for her whenever she comes. That was nice to hear. <br />
Not sure if i will ever be able to put into words exactly how im feeling at this very moment. For my theater friends and family, it almost feels like getting ready for opening night only with no idea what character you are about to play, or what any of your lines are, or maybe ever what show you are about to be apart of! haha My nerves and emotions are at an all time high, all i want to be is excited but i know i have to be realistic. Life as we know it is about to completly change and that terrifies me. I need now more than ever to find some true strength in myself and good motivation to push me through this next week so I can be as prepared as possible for our baby girls arrival. I know we have a wonderful support group cheering us on and praying for us, I just wish they wernt all so far away :) ok im gonna go now, cause i still need to pack... ;) thanks for listening everyone. From our hearts to yours xoxolissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com5tag:blogger.com,1999:blog-8945381269202637741.post-36982520068759093012011-08-30T14:59:00.001-07:002011-08-30T14:59:36.541-07:00"Umbrella" Ella's song<iframe width="420" height="345" src="http://www.youtube.com/embed/5DMwhL62t-0?rel=0" frameborder="0" allowfullscreen></iframe>lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com0tag:blogger.com,1999:blog-8945381269202637741.post-6341261201030234152011-08-28T20:11:00.000-07:002011-08-30T14:55:23.704-07:00Well here it goes......<div><div><span style="font-family: Arial, Helvetica, sans-serif;">I have been somewhat dreading starting this blog mostly because <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">I'm</span> not a good <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">writer</span> and I know ill just be all over the place. So please be <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">for warned</span>, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">grammar</span> will not be correct, spelling may not be correct and run on sentences are most likely a given, but what the heck here we go!!!</span></div><div><span style="font-family: Arial, Helvetica, sans-serif;"></span></div><div><span style="font-family: Arial, Helvetica, sans-serif;">I will start with a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">little</span> back story, so for those of you who already know this part feel free to skip ahead! </span></div><div><span style="font-family: Arial, Helvetica, sans-serif;"></span></div><div><span style="font-family: Arial, Helvetica, sans-serif;">My husband Brady and I have been happily married now for just a little over a year. We were married in May 2010 and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">immediately</span> started trying to have a baby. We found out we were pregnant in January of 2011 just days after my little sister Ashley had my first baby niece <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Rilynne</span>. We <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">couldn't</span> be more excited and frankly for some reason very surprised, i think i had convinced myself at some point that I would never be able to have children, just because i wanted them so bad, having one to me would be just too good to be true. The first part of my pregnancy was pretty normal all the way up to around 13 weeks. We went in for our second ultrasound super excited, bringing my momma along. It was not long into this apt that we found our her NT scan or <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Nuchal</span> translucency fluid level was super high 5.7, i believe normal is 2.5 anything above 2.5 can be a sign of downs <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">syndrome</span> or other <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">chromosomal</span> abnormalities. At this time they also told us there was a chance it could be heart <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">related</span> but it would most likely be <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">chromosomal</span>. So we prepared ourselves for the worst. We had a <span class="blsp-spelling-error" id="SPELLING_ERROR_13">CVS</span> done <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">immediately</span> that day ( its similar to an <span class="blsp-spelling-error" id="SPELLING_ERROR_15">amnio</span>) This was <span class="blsp-spelling-corrected" id="SPELLING_ERROR_16">extremely</span> painful and as we waited in the waiting room for the <span class="blsp-spelling-error" id="SPELLING_ERROR_17">dr</span> to see us, it seemed like an eternity. Sitting out there with all these other pregnant woman happy and excited to get into their <span class="blsp-spelling-error" id="SPELLING_ERROR_18">apts</span> to see their babies, who i was sure were all <span class="blsp-spelling-corrected" id="SPELLING_ERROR_19">completely</span> healthy. I was sure we were the only ones. I bawled in the waiting room for about an hour and a half before we went back in for our procedure and to meet with the geneticist. Then came the hard part, waiting. We waited 2 weeks for our results to come back. I think those were two of the hardest weeks we have had to endure so far. All the thoughts running through our heads, the negatives, that fact that life as we knew it was about to change forever. We prayed and surrounded ourselves with our family and friends as best we could while we waited for the results. The results came back <span class="blsp-spelling-corrected" id="SPELLING_ERROR_20">finally</span> and they were NEGATIVE, meaning no downs, no turners and no <span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">chromosomal</span> abnormalities! All of a sudden everything in our world was a little brighter, the days had more meaning and I could start enjoying my pregnancy again! With these results also came the AMAZING news that we were having a baby GIRL! We already had names picked out for both, so Ella May <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Beckstead</span> it was!</span></div><div><span style="font-family: Arial, Helvetica, sans-serif;">Skip forward to our 20 week ultra sound my sister Ashley was with us this time. At this ultrasound we were told that her heart did not look "Well" we were sent the next day to a pediatric cardiologist at UCLA medical center in LA to find out <span class="blsp-spelling-corrected" id="SPELLING_ERROR_23">exactly</span> what was wrong. We had an echo done on her heart that day and she was diagnosed with <span class="blsp-spelling-error" id="SPELLING_ERROR_24">hypoplastic</span> left heart <span class="blsp-spelling-corrected" id="SPELLING_ERROR_25">syndrome</span> aka <span class="blsp-spelling-error" id="SPELLING_ERROR_26">HLHS</span>. <span class="blsp-spelling-error" id="SPELLING_ERROR_27">HLHS</span> is a rare congenital heart defect where the left side of the heart is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">severely</span> underdeveloped. I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_29">don't</span> think when hearing this Brady nor I had any idea of what exactly this meant. The severity of it all we were still unsure of. It was not until we got to our hotel room that night that i made the mistake of researching <span class="blsp-spelling-error" id="SPELLING_ERROR_30">HLHS</span> on the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_31">Internet</span>. BAD idea. I called my mom hysterical at one am on the floor of my hotel bathroom. I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_32">didn't</span> want my baby have to go through this especially with the chance that even with the surgeries she may not make it. I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_33">couldn't</span> fathom the thought that if she did make it through the surgeries and we were able to take her home we could still end up losing her. The statistics did not look good and the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_34">stories</span> i was reading were not <span class="blsp-spelling-corrected" id="SPELLING_ERROR_35">encouraging</span> and seemed to leave us with no hope. The next few weeks were a blur. I spent most of my time on the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_36">Internet</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_37">desperately</span> trying to find someone with a story that would give us any chance for hope. I wrote on message boards asking for any others who were in our situation to speak up, i swear i thought we were the only ones. I had so many questions and i had no idea who to ask or where to even start. I wanted to know how this happened, did Brady or I cause it, when did everything go wrong and what could we have done to prevent it. Mostly i just wanted someone to tell me this was all a mistake a horrible nightmare, or that the <span class="blsp-spelling-error" id="SPELLING_ERROR_38">drs</span> made a mistake and her whole heart was there they had just missed it! ;) In an effort to speed this incredibly long story up <span class="blsp-spelling-error" id="SPELLING_ERROR_39">im</span> going to quickly <span class="blsp-spelling-corrected" id="SPELLING_ERROR_40">summarize</span> the next few months. Not long after Ella was diagnosed I was lucky enough to meet a woman online that had not only been in our shoes but has a son with <span class="blsp-spelling-error" id="SPELLING_ERROR_41">HLHS</span> and he was 17 months old and doing wonderfully! She also just so happened to be from our little town! She helped us so much! She gave me info on what <span class="blsp-spelling-error" id="SPELLING_ERROR_42">drs</span> to look into which <span class="blsp-spelling-corrected" id="SPELLING_ERROR_43">hospitals</span> would be best what questions to ask and also got us <span class="blsp-spelling-corrected" id="SPELLING_ERROR_44">in contact</span> with <span class="blsp-spelling-error" id="SPELLING_ERROR_45">a lot</span> of wonderful support groups (including her own SISTERS BY HEART which is an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_46">organization</span> that reaches out to newly diagnosed <span class="blsp-spelling-error" id="SPELLING_ERROR_47">HLHS</span> family and sends them <span class="blsp-spelling-corrected" id="SPELLING_ERROR_48">wonderful</span> care packages with little helpful gifts for the hospital) which quickly gave me and immense sense of strength and hope! I also came to find we were FAR from alone. Over the next couple of months I got to know her better and we have since had the chance to meet up a few times and my husband, my mother and I were able to meet little <span class="blsp-spelling-error" id="SPELLING_ERROR_49">Bodie</span> (her son) who is doing so amazing, if you <span class="blsp-spelling-corrected" id="SPELLING_ERROR_50">didn't</span> know this little guy had a heart condition you never would! ;) She has been a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_51">wonderful</span> piece of hope for my family and I and Brady and I both feel so blessed to be able to call her a friend! Skipping around a bit we had <span class="blsp-spelling-corrected" id="SPELLING_ERROR_52">decide</span> to go with <span class="blsp-spelling-corrected" id="SPELLING_ERROR_53">Children's</span> Hospital LA for Ella's birth and surgeries. We went back and forth between that and UCLA before deciding the best surgeon was at <span class="blsp-spelling-error" id="SPELLING_ERROR_54">CHLA</span> and therefore there was no question of where we should go. We met with the <span class="blsp-spelling-error" id="SPELLING_ERROR_55">CHLA</span> team multiple times over the next few months, driving back and fourth to LA. During that time our amazingly wonderful family and friends made the decision to have a fundraiser for us in order to help with our commuting back and forth to LA as well as the time we would be staying in LA during Ella's surgeries and recovery. I think i missed that part of the story. Ella will be undergoing at least three open heart surgeries during the first five years of her life, the first being in the first four days of her life. Therefore <span class="blsp-spelling-error" id="SPELLING_ERROR_56">CHLA</span> has asked us to move to LA at 36 weeks and stay there until she has undergone her first surgery and recovered. Back to our fundraiser ;) My mother, sister, aunt and a few special friends put on an incredible fundraiser for little Ella, there was entertainment, silent auctions, casino tables, drinks, desserts and most importantly a room full of our biggest supporters! The love in that room that night is still <span class="blsp-spelling-corrected" id="SPELLING_ERROR_57">indescribable</span>. Overwhelming in the most wonderful way possible. It truly showed us that even when the going gets rough we have the most amazing support system ever! Everyone really just rallied together and gathered <span class="blsp-spelling-corrected" id="SPELLING_ERROR_58">auction</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_59">items</span>, made donation packages, desserts, my aunt Sky made us the most wonderful "Ella's Umbrella <span class="blsp-spelling-error" id="SPELLING_ERROR_60">HLHS</span>" bracelets to sell. My uncle Mike put together a commercial spot to get the word out. One of my best friends Megan came down for the week and painted TONS of beautiful umbrellas for decoration and to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_61">sponsor</span>. Other friends put on performances. My mom and sisters <span class="blsp-spelling-corrected" id="SPELLING_ERROR_62">surprised</span> us with a beautiful song the three of them sang <span class="blsp-spelling-error" id="SPELLING_ERROR_63">together</span> called "one voice" my husband surprised me by <span class="blsp-spelling-corrected" id="SPELLING_ERROR_64">writing</span> and preforming a song he wrote for Ella and I, it was beautiful! And one of our closest friends Randy put on a beautiful dance number to the slow version of the song "umbrella" by KC <span class="blsp-spelling-error" id="SPELLING_ERROR_65">Conception</span>(Which will now forever be so special to us and always be Ella's song) It was really a huge group effort that would not have been possible if not for many many people! There were of course lots of close friends family and even strangers that could not attend that generously donated money to Ella's fund. It really is still surreal to me how much love and support we have been given. About a month later and here we are! We have <span class="blsp-spelling-corrected" id="SPELLING_ERROR_66">since</span> moved to Hollywood for the time being and are "patiently" awaiting the arrival of our baby girl! We have been here for about two weeks and we are currently staying at a friend of the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_67">family's</span> apt that they are not using and have <span class="blsp-spelling-error" id="SPELLING_ERROR_68">soo</span> graciously offered up to us for the time before Ella <span class="blsp-spelling-corrected" id="SPELLING_ERROR_69">arrives</span>. This apartment is SUCH a blessing and we are still in disbelief that we were offered the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_70">opportunity</span> to stay here. After Ella is born we will be moving to the Ronald <span class="blsp-spelling-corrected" id="SPELLING_ERROR_71">McDonald</span> house across the street from her hospital so we can be closer to her. So although i know there is so much I am leaving out <span class="blsp-spelling-corrected" id="SPELLING_ERROR_72">I'm</span> going to sign off for now. I will be better at keeping this updated now that all (most) of our back story is out of the way! Had I started this a while back it would have been much easier. At times this blog may be updated by <span class="blsp-spelling-corrected" id="SPELLING_ERROR_73">family</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_74">members</span> to keep you all posted as best we can. Please remember that this is really just a place for us to keep those who wanted to follow our story updated and not always going to be very well written or pretty. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_75">Some days</span> it may just be a way to unleash the days thoughts or happenings and therefore lots of scribble! ;) So for all my <span class="blsp-spelling-corrected" id="SPELLING_ERROR_76">English</span> teacher friends I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_77">apologize</span> in advance. ;) <span class="blsp-spelling-corrected" id="SPELLING_ERROR_78">I'm</span> thinking of it as a story of all the things that are running through my head and are in no <span class="blsp-spelling-error" id="SPELLING_ERROR_79">practicular</span> order and sadly do not always make sense even to me! Thank you all for taking the time to keep up with us and for all who have been praying for us this whole time, you are all very special to us and could not have made it through these last few months without each and everyone of you! -in the future these post will not be as long I promise!</span> <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-YvHSf6vOuxg/Tl1byWZcj2I/AAAAAAAAABI/WMtG2mIoZGE/s1600/ella.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="http://1.bp.blogspot.com/-YvHSf6vOuxg/Tl1byWZcj2I/AAAAAAAAABI/WMtG2mIoZGE/s320/ella.jpg" width="320" /></a></div> </div></div>lissamo83http://www.blogger.com/profile/08139868360030122203noreply@blogger.com4