Tuesday, December 6, 2011

its 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
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.
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
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??!!
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!
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!
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.
Lots of love The Beckstead 3 <3

Thursday, September 15, 2011

calling 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.

Thursday, September 8, 2011

emotions on high

Today 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.
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!
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.

Thursday, September 1, 2011

Ella'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.
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! <3

Tuesday, August 30, 2011

Trip 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.
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 xoxo

"Umbrella" Ella's song

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!