Sunday, August 28, 2011

Well here it goes......

I have been somewhat dreading starting this blog mostly because I'm not a good writer and I know ill just be all over the place. So please be for warned, grammar 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!!!
I will start with a little back story, so for those of you who already know this part feel free to skip ahead!
My husband Brady and I have been happily married now for just a little over a year. We were married in May 2010 and immediately 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 Rilynne. We couldn't 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 Nuchal translucency fluid level was super high 5.7, i believe normal is 2.5 anything above 2.5 can be a sign of downs syndrome or other chromosomal abnormalities. At this time they also told us there was a chance it could be heart related but it would most likely be chromosomal. So we prepared ourselves for the worst. We had a CVS done immediately that day ( its similar to an amnio) This was extremely painful and as we waited in the waiting room for the dr to see us, it seemed like an eternity. Sitting out there with all these other pregnant woman happy and excited to get into their apts to see their babies, who i was sure were all completely 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 finally and they were NEGATIVE, meaning no downs, no turners and no chromosomal 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 Beckstead it was!
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 exactly what was wrong. We had an echo done on her heart that day and she was diagnosed with hypoplastic left heart syndrome aka HLHS. HLHS is a rare congenital heart defect where the left side of the heart is severely underdeveloped. I don't 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 HLHS on the Internet. BAD idea. I called my mom hysterical at one am on the floor of my hotel bathroom. I didn't want my baby have to go through this especially with the chance that even with the surgeries she may not make it. I couldn't 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 stories i was reading were not encouraging and seemed to leave us with no hope. The next few weeks were a blur. I spent most of my time on the Internet desperately 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 drs made a mistake and her whole heart was there they had just missed it! ;) In an effort to speed this incredibly long story up im going to quickly summarize 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 HLHS 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 drs to look into which hospitals would be best what questions to ask and also got us in contact with a lot of wonderful support groups (including her own SISTERS BY HEART which is an organization that reaches out to newly diagnosed HLHS family and sends them wonderful 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 Bodie (her son) who is doing so amazing, if you didn't know this little guy had a heart condition you never would! ;) She has been a wonderful 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 decide to go with Children's Hospital LA for Ella's birth and surgeries. We went back and forth between that and UCLA before deciding the best surgeon was at CHLA and therefore there was no question of where we should go. We met with the CHLA 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 CHLA 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 indescribable. 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 auction items, made donation packages, desserts, my aunt Sky made us the most wonderful "Ella's Umbrella HLHS" 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 sponsor. Other friends put on performances. My mom and sisters surprised us with a beautiful song the three of them sang together called "one voice" my husband surprised me by writing 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 Conception(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 since 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 family's apt that they are not using and have soo graciously offered up to us for the time before Ella arrives. This apartment is SUCH a blessing and we are still in disbelief that we were offered the opportunity to stay here. After Ella is born we will be moving to the Ronald McDonald 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 I'm 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 family members 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. Some days it may just be a way to unleash the days thoughts or happenings and therefore lots of scribble! ;) So for all my English teacher friends I apologize in advance. ;) I'm thinking of it as a story of all the things that are running through my head and are in no practicular 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!



  1. This seems like a perfect way to get your thoughts out without it needing to make sense so don't worry about the organization, grammar, spelling etc. I'm so glad you were able to find others who have been through this. I wish I knew them so I could thank them for supporting you through this and giving you the hope you deserve!

  2. Greetings from another heart baby mom....a friend of mine and yours, Sunny Hindt, shared your blog and story with me. My baby girl, Myka, was a patient of Dr. Starnes and currently with dr. Lewis (her cardiologist at CHLA). Being the parent of a heart baby, forever changes you, making you appreciate every moment, every milestone that much more. I will be routing for you are in great hands there at CHLA. Dr. Starnes is wonderful and you are with the best in the biz. Myka has a cardiologist appointment at CHLA on 9/12. If you could use a walk or a talk, with someone who understands what it's like being in that hospital, please email me... (I chronicled Myka's story too at the blogging is so therapeutic....)

  3. Thank you so much for sharing your experience with us! Just so you have a little more support, there is a lady in my church who has a little girl with a heart defect (I apologize I didn't ask what is was specifically) and she had open heart surgery and everything as well. Today Angelica is a BEAUTIFUL and vibrant 5 year old who is just a joy to be around! Laurie wants me to tell you to pray, have faith, and told me before I read this to tell you not to read stories online because they will upset you, which you know, but I'm so happy you found a wonderful and supportive friend through it all! You are all in our prayers! XOXO -Bethany Dodds