The longest walk home.

I saw this at a glance on pinterest and it completely stopped me in my scrolling rage, and made me think of our walk home after losing our baby. This image/wording is so so true, it is such a painfully long walk home, it is a memory I don't think about often but this post made me remember that walk as if it was yesterday. After Lua got to the hospital, I was bagging for them to shock her heart, do anything to get her to have a heart beat again, and after 20 some mins. they then called it. I didn't think I would be able to hold her lifeless body but after they got her all situated we came in and I couldn't even stop my body from grabbing her and holding her and crying out her name wishing so badly that maybe, MAYBE, if she could hear my heart beat I could get her back. But I couldn't of course, and after me and my husband and mom and dad held her for a long time we went back and told May that her sister had passed away. Her reaction was hard to see, she was playing some what before I got to her and she stopped suddenly and had a very serious face and said, nuh huh you are kidding, you are joking me. How a 3 year old can stop and think that it was all a joke too that there was no way her little sister could be gone, really surprises me. After having to tell her again that we were not kidding and it wasn't a joke, she crawled under a chair and said she didn't want to see anyone. I think that was her moment to try to figure out what had just happened.  After that my parents took May and we had to go back to the house to go over the investigation with the police. Neither of us took a vehicle there, my husband was on the ambulance and a police officer took me and May, we were offered rides but I didn't want to sit.. we only live maybe 2 miles away from the hospital so I started walking and my husband did too. It was october and it was pretty brisk out. The whole walk I had to try to imagine that she was actually gone, I would be going back to our house and she wouldn't be there... I didn't even know if I could actually step foot inside our house. We walked and cried and I held my heart like I did when Lua was born and we weren't sure she would make it. She had more than made up for that feeling the first time with giving us 7 months of love but now I knew that this pain my heart was feeling wouldn't be able to go away any time soon. We walked almost all the way home before the police officer saw us and offered to give us a ride the rest of the way, but that was the worst walk of my life, spending it going through everything that had just happened and trying to make sense of it all. I'm a little surprised my feet were able to take me as far as they did that day...

finding strength

whenever I think of good things to write down about this new journey of life with out my baby, I am never really able to stop what I'm doing and write it down, so then, when I am able to write what I was thinking before, it all sounds too cheesy or out of the moment to actually put the words put there ... Oh well.

Last night was an interesting night for a handful of us, my older daughter May, got a fever while she was at grandmas and grandpas house so grandpa ended up driving all the way to our house to get some Tylenol to help her fever. Usually I wouldn't treat the fever but let it run its course but just for everyone's sanity sake, she got some meds. It is so different now when she gets sick than before Lua... One, she has been sick a ton in a row, every week for the past month, with one hospital stay! I'm starting to think we have a mold problem. Second, we can't take any chances any more. We have to be those insane over protective people because we are scared of it happening again... But so far today all has been fine and we will do as we are always told, to keep watch. (because it worked so well for us last time. >:|   )

Earlier today I took our dog to the dog park before picking up my sick kiddo. Everyone has so kindly passed down the cold to me yet again for the 3rd time in 2 months :( Anyway, it is good to have a dog to make sure you get out and about and get some exercise, that is when I was doing all my best thinking, you know all those nice endorphin's kicking in. I'm glad my dog is forcing me to be outside, today was my favorite type of day, a touch of gloomy but yet warm enough to enjoy the outdoors. While we were there I decided to jog around the park, while my dog flew by running circles around me :-\ but it got me thinking, jogging is something I dont typically do, it is good that I haven't totally given up on life to the point where I avoid doing anything new or different form the norm. I figure that should be what I try to start doing... try to get stronger physically, and add to that mentally, emotionally, spiritually. Whatever each of those mean to me and whatever it takes I am not exactly sure, but hopefully I will be able to find out and not give up. It really isn't fair to Lua, or May, to sit back and just wait for life to pass by, even though I wish Lua could be in my life, I need to start moving forward. That isn't saying I'll never have a bad day and break down, I simply need to work on strengthening one thing that day and include the break downs ;) Maybe those are the days I work on emotions, Well I don't know, this cold has altered my thinking ability so this is probably all rubbish!

Balloon release pictures

I have some pictures from our day that friends and family took so I thought I would share those!

A nice amount of people showed up with their Lua tshirts on, and a couple posted them wearing their shits on facebook! Which was awesome to see!! Love how many supporters we have had through all of this, it means so much to me to have all the help and support from so many people. Before this all happened I never would have guessed that we would have so many people there for us, so many genuine, true, kind, friends and family having our backs. It really blows me away. I wish I would have been able to make a speech at Lua's birthday, there were a lot of people and I doubt everyone would be able to have heard me and plus there is just no words that I could say to express my deepest feelings over everything so instead we played the song I sang to Lua every night as the balloons lifted away and it felt perfect. I wish Lua could have seen it. Miss that little girl every second!

birthday celebration and dreams!

Yesterday Lua's birthday celebration went very well! I don't have many pictures of our event but we had a photographer there and I can't wait to see the pictures, she is really good so I'm very excited to see what she got! When I get the pictures ill for sure post them! It was beautiful out and most of the snow is all gone, except for where Lua was buried of course, she is still making us work never a day off with her! We tried to get everything together as much ahead of time as possible so we filled the balloons the day before like I had mentioned and when I woke up in the morning, they were all flat!!! Ahh! So thankfully we had a lot of helpful hands and a friend who was willing to watch our 3 year old so we could start all over. Anyway after that whole issue, everything else came together very nicely. We had 7 lanterns for each month, those were beautiful to watch float away. Then 34 balloons for each week, and 212 flower petals for each day. Many people brought flowers and wore their Lua tshirts and it all looked amazing! We had a lunch afterwards and a nice relaxing day. Man I can't even believe she wasn't here for her birthday, she would have loved it.

speaking of her, I dont dream of her often, in fact I didn't have a dream about her at all until maybe a month ago! I thought I would dream about her all the time! But I dont usually :( anyway last night I did! It was weird and I'm simply writing it down so I dont forget it.
So I was looking at a photo album of her and I saw I had left her in the photo album!! And she was breathing! I quickly pulled her out and started yelling for someone to get me the suctioner, what we usually had to do with her when she was alive, and I began to suction and get her to breathe more, then she started talking and asking if I was able to get any secretions out at all, and I was but not enough to bring her stats up. I asked for the bag to give her breaths and she refused it.... Then turned into a man and it got really weird..... But I just can't believe I got to see and hold her, even if a dream... Sad that those are the moments I live for now....

year ago today...

A year ago today I was in labor with our second baby girl. I can't even believe a year has gone by. Honestly it still seems like I just had my first baby yesterday and now my second daughter would be turning 1, that is insane to me! My girls certainly have done their best to traumatize me with never wanting to go through labor again with my first not wanting to come out at all to my second who everyone had to fight to get her to survive. But anyway, I will never forget the first time I saw Lua... It was about 6 hours after I had her and I knew already they didn't think she would survive the next 24 hours. I was nervous to see her, honestly I was afraid of how she would look since they said she had so many problems. But when I walked in there and looked at her, she was perfect. That was so hard, to see this perfect baby and think I wouldn't have her tomorrow. I don't even know how I was able to keep standing from the pain of knowing I would soon lose her. Everything about her was just so perfect, she was so adorable, and as she grew she became so funny with her facial expressions, but early on I knew i wouldn't let her go for anything unless her heart or other organs that were totally necessary, weren't functioning and even then I dont know if I could have taken her off any type of support. Maybe in a sense she knew that and I guess I would like to think that is why we missed any signs that she was having problems because if she would have ended up at the hospital and they kept her on support I never would have made the decision to take her off of it. Either way, I think back to that first moment I saw her and it is painfully beautiful. I see now that was the start of our relationship. I might as well have walked in and said, hi I'm your mommy, we are going to fight through this crazy journey together, nice to meet you Lua, you will be giving me plenty of mini heart attacks but welcome to your family!
Well maybe not exactly that but anyway.

We just finished filling balloons up for the balloon release, I painted cement blocks that were made by my aunts and mom, and everything is seeming to come along. I hope for the best day possible tomorrow and that I am some how able to keep it all together.


 

Dear Lua

Since I will never get a chance to read my entry's I wrote for Lua, I guess I might as well post a few here... One reason, I'd like to have some saved somewhere I can get to if the file on my computer ever accidentally gets deleted or something! Second, sometimes it is nice to reminisce over the past, she isn't here now and I like thinking back to the days and memories we had together. I did write these posts on my phone so the writing is terrible and the wording too, but oh well.
Anything that is ever written in this blog is never meant to offend anyone! These are strictly my thoughts and feelings through the whole process...
 
March 16 2014
Dear baby Lua. In an hour you will be 3 days old!!! And what a 3 days we have had. It feels more like about 2 weeks considering everything that has happened. I would like to write it all down now but it is 4:45am and I should probably get back to sleep. I just needed to start writing to you, it may help the process in the long run for me.
I remember the day I found out I was pregnant... It was in July and I had made a comment earlier that if God wanted us to have more kids I would have to be pregnant now or else I wouldn’t be able to ever do it.... And there you were! When we found out we took a walk with your sister around town... Daddy wanted to name you Tessa from the start.. While we were walking we saw the moon.... Daddy said Lua is moon in Portugese and our hearts melted.. Tessa Lua. That was it. We didn’t even know if we would have a boy or girl but this name came to us right away, before I was even 2 months pregnant. Well the more we thought about Lua the more we fell in love with that name so we dropped the Tessa and stuck with Lua.... Lua March. And we love you to the moon and back a million times our baby Lua.

May 20 2014
This evening I spent the rest of my birthday with you, rocking you, sitting you upright, and holding you against my chest. You were so awake until I laid you against my chest, then you were out pretty fast! I stayed with you until almost one am, everytime I tried to leave you started smiling at me... Melted my heart to bits! You bad hiccups and you would smile at them. I guess you thought they were funny!

June 20 2014
Today me and your daddy have been married for 4 years!!! Sometimes during my life I thought I had it difficult... But I have never had anything more difficult than this and I keep thinking I have it the worse than anyone else, but that isn’t true at all... In fact im lucky I have you. I’m lucky I didn’t lose you. I could be a mom who lost their baby at birth and how tragic would that be.... We are finally home! After 3 long months... We are home! Came home June 16 and the drive home was horrendous!!! You were de satting constantly! Needing to be suction a ton.. I was scared to death! Then we had to stop to charge the pulse ox cus it died.. Ugh stopped at a gas station and took your brace off and just messy messy... We lost grandma, grandpa and may on the way back but met up at the gas station when we stopped.... Other wise we have been busy! Taking care of you and may. We have a nurse.... I’m not a fan and currently trying to figure out what to do about this situation. Today we took you to the local doctor to get checked and meet him.. You did okay. One lady asked me what was wrong with you and if you were going to be okay. It is weird trying to explain to people but everyone should know your story! You are moving your legs a lot and bobbing your head :)

Aug 26
Today you had a good long day. We had speech and ot today and we told the speech therapist that we caught you aspirating some milk that I gave you in a bottle. She is going to measure some milk out and then give it to you and see exactly how much you are aspirating. It might be something that happens occasionally instead of all the time, we aren’t sure. But you are working hard and trying to swallow, we just need it to be going to the right tube!
I really should be sleeping now.. I have to get up early with you. Anyway. Then for ot we swaddled you and put you in a baby carrier on me! You went in some positions that you never have been in before. Like face down with the only support being from my lips holding your head up! And rolling you onto my stomach then having your head tilted back with me supporting it. It was interesting.. I had to suction you a bit. Maybe 4 times? And it was a little complicated but if I had this extra part that supported your head and left me hands free then it would be perfect. Very interesting stuff for sure.
I also got some more doner milk today. I’ve been struggling with not being able to produce enough for you and im so mad at myself for letting my nice supply go to waste. Ah I could just kick myself. I have a hard time deciding what is more important though... Spending all my time pumping and providing you milk, which is free, or spending time with you, exercising you, teaching you and showing you things, taking you to therapies, and doing all I can for you. Such a hard decision because both are so very very very important. Anyway.
Vovó will be leaving Thursday, it is sad to see her go. She has spent a lot of hours snuggling you and helping us so much. It will be hard. But now to figure everything out wih just ourselves.. I think im crazy to not have a nurse but I just can’t feel comfortable with it :\
 
Aug 27
Well... Last night monitoring did not go as well as I hoped it would.. Your stats were low and then in the morning they were as well.. You were crying and upset and none of that helped. Only after the 12 hours were up did you decide to get better and start running high again like 97 to 96. I was very frustrate but what can I do?? Hopefully pulmonary doesn’t think the worse, but we will see.
Today we went shopping one last time with vovó to Wausau. We went to gordmans... I bought a bunch of stuff... A little retail therapy never hurts, remember that! Vovó will be going home tomorrow... I can’t believe how fast time went. It was like just yesterday that she got here and was making a stroganoff for us and showing me how.. She told me to taste it and the way she did it was to put a dab from the hot spoon onto her hand, so I did the same thing... Hoooooottttttt!!!! Not the way for me to taste test! It was wonderful having her here, I feel very emotional about her leaving.

November 1st 2014
Dear Lua,
Today is the first day that i am writing to you and you are not here. I thought i would not ever write to you again because this was suppose to be something i would give to you when you grew up and could read on your own. But, now that you are gone, i have no reason to continue writing to you. Except i feel as if there are a few things that were left unsaid and by me writing them here, maybe some how, some way, you will get to read this all and hear the final thoughts i have.
    At this moment i cannot even describe how i feel, the loss in my heart, my torn ripped apart heart. Im not okay, im lonely with out you, i miss everything about you. I miss your eyes that could tell me stories for hours, i miss your smerks, i miss your tongue, i miss your legs kicking as much as you can, i miss our night time snuggles where i would snatch you up from the changing table when daddy left the room, it would make him have to spend more time getting you to bed but i loved grabbing you and holding you to my chest and singing our song... i know you could feel my heart beating as i sang that song to you and i could feel your breaths against my chest. I miss going in and seeing you in your crib before bed time, i simply just miss everything about you. Im drained and lost and think about you all the time. I feel like i let you down. I didnt fight hard enough for you. I dont think you were meant to be trapped in such a body, you should have not have had to live the life you did the way you did. You should have been able to play and move and eat and roll and whatever you wanted. I honestly dont know what happened. So many nights i would spend researching and researching what might have caused you to have been born this way or what i could possibly do to make everything better. I dont think people understand what a beautiful gem you were. You were such a light in this dark world, you changed my life. I never knew anyone could love another person so much until i had you, and baby girl i loved you so much. My greatest fear is that you didnt know how much i loved you....
    I wish i knew where to go from here. i wish i knew what the correct steps were. I wish anything that someone would let me know what the right thing to do was. I look at your pictures and videos whenever I can and i ache for you. When everything first happened there was a sense of freedom for you, knowing you were no longer trapped in such a complicated body, made me feel so happy for you. As time goes on, i only ache and in pain to have you back. No one can understand the way im feeling, no one could understand our situation to begin with, it was such a very unique situation so in that i feel utterly alone. Daddy is hard to talk to because there is no good in bringing both of us down and he basically cant talk about it very well. I know at this point we need to just start remembering the good times we had together, but 7 months is such a short time i dont think there is enough to make us feel better. Yes it was great we got to have you for 7 months when we could have lost you in the first hour... Yes i am glad i got to know you, hold you, love you, im glad i got to show you the little world i did get to show you. But it isnt enough, mostly because i am selfish i suppose.
    Tomorrow morning it will be 3 weeks since you have been gone and i still fight every, Every, night to get the image of your lifeless body laying on the couch out of my head. I want so much to look back at that moment and see your eyes full of life, but i can only remember the eyes that were faded and a spirit that was gone. I never got to say good bye, it should have been me with you that morning, but instead i was selfish and made daddy go when he was already exhausted. The worst part of it all is we still dont know what is your cause of death, and if we find the cause will it even make anything better or will it make it worse? I only wish i could still feel you around me, I wish i knew that you were there. I miss you.

Thinking of you, Lua, on your birthday

Lua's 1st birthday is approaching quickly, and I keep trying to sort out how I feel about this day. It seems like she was born only yesterday, and everything that happened is still so fresh. The day she was born felt like the worst day of my life since we were told she wasn't going to survive the next 24 hours. She quickly started to turn things around and we were given so much hope that things were going to be okay. I was looking forward for her having her first birthday so badly, then we would have new memories of her birthday with her turning 1! instead of only remembering how difficult it was bringing her into this world. But at least now the day she was born is no longer the scariest day of our lives, it was a very rough day, but the day she passed is of course much more painful. So as I sit here thinking of her birthday I know there are so many things that I wish I could say to her, hold her, let her taste cake! Although none of that will happen, I hope I will still be able to write something to her and read it at her grave site the day of her birthday.
I need to work on something that i would like to say to her. Before she passed, I started a journal for her and my older daughter as well, telling them about how the days went, what we did, any special things that happened, or just talked about whatever! It is called Dear Lua/ Dear May, not the most creative title but oh well. Which is why I will start what I have to say as this...

Dear Lua,
I have so many things I wish I could say to you today. I wish I could be holding you tight in my arms wishing you the happiest birthday ever. Even though I can't do these things, in my heart, I'm holding you as close as possible. I want to thank you for all the things you have given to me while you were here. You took me out of my comfort zone and made me stand up for what needed to be done. You made our whole family experience new things and opened a whole new world to us. You are the one who brought us to meet wonderful families and amazing babies all around the country that share similarities to you. We learned a whole new way of living and we learned a whole new type of love. With you, although we had many difficulties, there was a feeling of completeness and total happiness in our whole family. Your big sister has loved you so much since the day you were here and even still today. She is so proud of her baby sister, and she thinks and talks about you every day. You helped her become the great big sister that she was and I know she loved every second she had with you. Of course you changed my life and your daddys life forever. You meant the world to both of us and not a day goes by that I dont think about your beautiful smile and how you would make me laugh with all your silliness. I know in my heart that you were made for me and I was made for you, which is why losing you hurts so much. The day you were born and I heard all that was wrong with you, but had not seen you yet, I was of course terrified but I had no clue how much I would love you until I set my eyes on you. It was like I already knew you and I had made up my mind that I was not going to lose you that day. I'm thankful for every month, day, second that we had with you, some of my favorite memories are the very early mornings we sat in your room during your feeds and I got to hold you so close to my heart, which was never easy because of all the equipment needed but we made it work! Our bed time sing and dance moments where I could feel your heart beating against mine, and my favorite times was watching you and May sit together or her playing with the toys with you. I wouldnt trade those moments for anything. My dear sweet Lua, oh how I love you and miss you and struggle with losing you every day, the only thing that helps the pain is to know I will never forget you and I will keep you in my heart forever and remember how much life I saw in your beautiful little face, I can't even picture you actually being gone because you were the baby who had so much life beaming through your eyes. You are truly my heart and soul, the brightest light in my life and I'm so thankful you picked us as your family and me as your mommy. Happy 1st birthday my wonderful, precious, sweet baby girl!  

Rambling...

Warning: Bunch of rambling nonsense of trying to make sense of nothing that can make sense.

I won't sugar coat it, today has been a pretty crappy day. My daughter spent the night with grandma and grandpa, and time alone for me turns out to be not so relaxing. May definitely keeps me grounded and forces me to keep going on days I don't think I can, and with her not here, well I spent my morning watching tons of friends episodes, playing sims, basically trying to wish I was living a different life. I mean, seriously, how can you look at her sweet face and imagine that she is just gone?! She can't be gone, when I was with her, when she was here, I saw so much life in her. She was so sparky and could melt anyone's heart in seconds! It Just doesn't make sense!!! The more sense I try to make of it, the more I drive myself crazy. Obviously the logical answer would be to let it be, it doesn't and wont make sense... but it hurts. 

I have found a new hatred for facebook too... a love hate relationship I suppose. That is why it is nice to just vent and complain here, as annoying as it is how depressing and sad my posts are, it does help to get it out somewhere though, so sorry to anyone who finds this the most depressing blog ever. Anyway, to continue on with the rambling... losing her feels like my heart has literally, i mean Seriously, ripped in half. I wish it wasn't so painful, but then again if it didn't hurt so much that would only mean the love I have for her wasn't very strong. With it being March I am constantly thinking about how things were last year... remembering her in my tummy, and thinking about how life will be having 2 kid! So exciting! So much to get done! Set up the crib, go through the clothes, decorate the room, everything general neutral because our baby wouldn't let us see the gender. Everything was so exciting this time a year ago. If only I would have known what was about to happen, maybe would have been able to prepare more. AHh the if only's, how annoying are they?! I hate it. I just simply hate it. This. I miss her.