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.