frienship loss

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

ER trip on a sat night anyone?!

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

heart broken.....for my heart mommies

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

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

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.

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.

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