Losing a sister

Every day after losing our baby seems like a battle to simply make it to the end of the day. Some days are worse than others and lately there have been more hard days than easy days. There are so many things that we do now that can only be called 'the new normal.' I know many people talk about that, learning to live with a new normal, but it is very hard to understand until you are apart of it, living that new normal. A few things that drastically changed after losing Lua effects mostly May, big sister. May was always a rough sleeper, woke up a lot during the night, very hard to get her to sleep and we worked really hard on getting her better at sleeping in her own room before the new baby would come. Once Lua was here and after 3 months of living in the Ronald house, when we finally got home, May totally surprised me at how good she did with staying in her room, going to bed with ease, not waking up a bunch of times during the night. It was really nice to have her be easy while we had so much to do with Lua and we were all pretty use to our schedule this way. Well after Lua passed away May stopped sleeping through the night, became a little more difficult to get her to go to sleep, and frequently comes into our room over night. I'm already exhausted from dealing with everything else that has changed, I don't even feel like trying to figure out how to get her to stay in her own room, I basically just gave up on it and figured when she is older she will get better. Thankfully this last week she has been sleeping through the night and staying in her own room and being more content on going to bed with out us having to convince her to go to bed. It has been 4 months that the bad sleeping started, I hope this week isnt a fluke thing and she keeps it up. 
Except with this better sleeping thing, her emotions towards losing her sister has gotten worse. She has now started crying saying she misses Lua and wants her to come back. "But why can't we raise her, why can't she live with us?" She will ask me all the time. And a few days ago she looked up into the sky and told her daddy that she wished on a star!!! later she told him, she wished for Lua to come back to us. Ugh. Heartbreaking. At first after losing her, May was positive about it. She would say things like "It's okay, she is with the angels now. I hope she teaches me to fly with the angels!" But now she has been taking it much harder. Maybe she is realizing that Lua isn't coming back now. Maybe seeing other babies around makes her a little sad too. I don't know, It is so hard to try to help your 3 year old understand when you, an adult! can hardly understand any of it either.

They had a really strong bond, I hope they both remember it forever... 

Blast from the past

Last year we spent 92 days in the NICU with our baby, living in the Ronald house next to the hospital. We did spend a few nights in the hospital with Lua, and stayed there late into the evenings/early mornings and OH how I long for those days back!!! But Friday, we had a great reminder of those days.... We ended up taking our 3 year old into the doctor. She has had this cold for a few days with a temp off and on and friday I noticed she was breathing fast and with her belly, which is how Lua would breathe, so I knew it wasnt good! Anyway she ended up having such a low O2 stats that the doctor felt we should keep her overnight to keep watch on her. Typically our 3 year old goes to a different town for her doctor, but that is about an hour and 15 mins away and I didnt know how serious her condition was going to end up being. But thankfully, because of Lua, we were able to see Lua's old doctor to get her in as quick as possible and not have to go through the trouble of going to the ER. So thank Lua! We only had to stay the night, not eve 24 hours, and May cried and cried and cried!!! until she finally got settled and then it was the most uncomfortable sleep ever!! I also started getting sick friday morning, it was just a mess! If Lua saw us, she would be shaking her head thinking, I was in a hospital for 3 months and you guys can't make it 24 hours! She was a strong little girl and proving that all the time.

So I have come to the conclusion that if something very devastating happens in your life, like losing your baby, there are still no free rides! I thought this year would be easier than last year, but it is starting off with a bang already.

Thank you to Lua for still helping us out even though you aren't here anymore :)

missing her...

Usually when I terribly miss her I go through and purge all the pictures I have of her onto my facebook account... people are probably really tired of me posting pictures all the time. I even got a comment of, why dont you post pictures of your other daughter? I do, but it makes me feel better to have her face all over my facebook. It is easy to get to and easy for me to see quick if I am missing her too badly... So now that facebook is dominated I can post pictures all over the blog 

Grief, the silent killer

The funny thing about grief is, when you are trying to cope with it the smallest things can set you off. Literally the smallest things! It is so unfair, I feel like I'm not a normal person anymore. Well not that I would say I was "normal" before, but I guess the better word would be sane! Stupid grief sits there inside and doesn't go away. You think you have tackled it when you aren't thinking of it, you think it has gone away and only certain times you will be sad. Nope, not so true. It always sit there in your soul until you learn to live with it, at least I'm guessing that is what you have to do is learn to live with it.
It was the dishwasher today... The dumbest, smallest, thing that shouldn't effect anyone, but for me and today it broke me! We have been having problems with it cleaning our dishes, it wont do it! I've tried all these stupid methods to cleaning it and it is just a piece of crap, probably super old and it pushed me over the edge! Why is life still screwing with me? Isn't taking my baby enough? Now really im going to be forced to wash and dry all the dishes by hand when i already have enough crap to do around this stupid house? Apparently life is just content at screwing with me and I should get use to it! See how silly this blow up is? It is a dishwasher, it is washing dishes, simplest thing ever.. but having all this added stress and pain, makes it ridiculous. Or maybe it is because I have this sick 3 year old who doesn't want anything to help her get better but to sit and cry for seriously 24 hours straight because it is too difficult to blow her nose... yikes. One thing that this all has done is make me certain that having any more kids in the future should be out of the picture!!! Some people were made for this parenting business, some just were not! 

11 month old baby

Today Lua would be 11 months old. The closer we get to her 1 year birthday, the harder the days seem to get. Before she passed away I had already started to plan her birthday. I already pictured us throwing a party for her and now we can have a party for her but we wont have our baby there for it.

I have started planning a celebration for her on her birthday though, and at first I wanted a big party with tons of decoration of a candy land theme since she loved the song lollipop so much! A grand balloon release, a big cake, having a photographer, and invite anyone who can come... But as the days get closer, there is no way I can bring myself to doing this type of party. I planned on still doing the balloon release until I found out that is somewhat frowned upon for the environment sake. So a work still in progress I suppose.

And today I shall spend the day away from facebook and everyone's happy little families with all the babies plastered all over facebook, to help save my heart from breaking.

thoughts...

when I finally have time to write, all alone, no kid, no dog, no distractions at all, that is when I find it the hardest to write anything. Maybe the pressure of knowing anyone could read this even though I had tried journaling before, not publically, and alone is when I find that I don't know what I'm thinking or how to put my thoughts together.

one thing I think about is how there have been so many parents/mothers who have lost babies. Healthy babies, babies with diseases, babies in accidents, all have been taken too early. I know I'm not the first to lose a child, but it is crazy how you still feel like you are the only one who has. Each situation is different, I think that is one reason why it is easy to feel alone in your situation. Yet every mother who has lost a child feels the same way regardless of what situation it was that they lost them. I sometimes think, I have never had anyone say this to me or any proof of this, but I feel sometimes people think it is somewhat a blessing of our baby passing. She had many challenges and we had a lot of work to do for her. One thing everyone should know is, while maybe she was uncomfortable or if this was a blessing for her, it will never be a blessing for me or for our family. We love her to the moon and back and yes we had a lot of challenges I was so happy to have her in our lives. I would give up every free second I have now to have her back with me. It will never be a blessing to me to have lost her. Never. I know someone told my mom that they felt bad for us for being so young and having a child with disabilities, but I never did feel bad for us. I did feel for her and worry about her, but for me she was just another reason to keep my heart beating. This pain of losing her is way more difficult than taking care of a trach and gtube.

projects

Having a 3 year old apparently doesn't keep me busy enough, between doing projects to keep Lua's memory alive, my side at home business design and printing tees, and recently adding a puppy to the mix that we decided to get to see if it would help the healing process, I feel like I have my hands full, yet I don't still don't feel satisfied. About the puppy, I'm not going to say it was a the best idea, I mean puppies are fun and our dog Mallo cup has a good personality, easy to train, comical, barks at everyone and everything, but it is still stressful and needless to say I have been having high blood pressure lately... possibly the constant battle between puppy and a toddler??? Either way, I have been working hard to find ways to honor Lua and her short life. One of my biggest fears is forgetting her. Slowly everyone else who knows our story will unfortunately forget her or push her back in their mind. A baby who was on this Earth for only 7 months, and especially when you didn't live the life day in and day out, I find it to be hard to leave a lasting impression. But please don't get me wrong, I believe she touched many peoples lives while she was here which makes me so happy to know about. I have read a lot of stories before having Lua, of children who passed away from cancer, SMA, and other things and while I felt for the families so very deeply, as time goes on it does slip in the back of your mind because it isn't directly impacting your life. Well, that is how it seems anyway, who knows.

Here are some things I have done to try to surround us with memories of our baby.

Lock of hair in a small glass bottle
Framed some of her shirts
A friend had a blanket made for me of all of Lua's receiving blankets that we used every day!
Lua tees, her actual feet print on them, working on getting everyone in our town to have one!

Life today

It has been almost 4 months since my baby has passed away. We all have been going through the 'motions' of grief, I suppose. I have reached out to other mothers who have lost babies and it seems to be the same thing, you never really recover but learn how to deal with the pain. At first I didn't understand exactly what that meant, how can you not recover? Of course a few months into missing her, I know why you don't recover. When a piece of your heart has literally been broken into thousands of pieces, that is something that will never be healed, you could never find all those missing pieces again to put back together. I have learned that I can't expect to heal from this, I literally have to learn how to live a new life. Unfortunately this new life is with out someone who gave me such a great purpose, you can see how this can be so difficult to move on from.

Something that is so terribly annoying to me, is how life seemed to go back to 'normal'. It is almost like she was never here. I mean for 3 months we lived at a ronald house, spent all my days in the hospital NICU, and trying to juggle my almost 3 year old and my new baby with all these difficulties. It was a huge task and I put so much of everything I had into this. I feel like I went from being 25 to 45 in under 7 months. Now today, it is the same 'ol same 'ol. I see and talk to pregnant mommies or moms who just had their babies, and I'm not qualified to relate to them because I don't have a baby to show. I feel slightly like no one really wants to hear my experiences with Lua, I'm not sure if it is because they think it will make me sad, or if it makes them sad and who wants to feel sad when you have a newborn in your arms? I went to see a grief counselor, one time, back in november. While I was telling her everything she stops me and says, "I just want to let you know, I just came back from maternity leave".... I didn't know what to say, I told her I was sorry, she said she just wanted to let me know she can relate, I guess (?) but honestly that was kinda weird for me but I still planned on going to it because hopefully it would be some place to talk about Lua with out feeling like I'm making people sad. But the next meeting I was sick and then I never rescheduled, maybe it just wasn't the right fit.

Besides that me and my oldest daughter are back to our same routine and it is so annoying. There should be a baby here, we should be planning her first birthday party, we should be doing a lot of different things, but, saying should wont fix anything. Oh well. These are just a few of the struggles after losing my baby...

Meet Lua

Here are a few pictures of my baby girl. She was such a fun, silly, beautiful little girl!
Top pictures are from being in the hospital, and bottom pictures are from when she was at home. 

The hard good bye.

We ended up staying in the NICU for 3 months. Lua had very little muscle strength, like close to none. When she was born she didn't move anything until she was 2 weeks old, and then she moved her foot just a little, but enough to make even the NIUC doctors impressed. I hope if you are really wanting full details on her story you have visited the caring bridge site, because there is so much that happened since the day she was born, and I could talk about it over and over because that helps me feel like we are in some way still living it, but this is suppose to be life after losing her so I suppose I should start getting to that part, I just feel like I should fill in some before I get there. So back tracking, once she was transferred to Milwaukee children's hospital we were told she most likely had SMA and they gave us the option to either get a trach and a gtube, or let her go. She was 2 weeks old when we got these options. We had no clue what to expect but there was no way I could let my baby go. She got a trach and a gtube and we stayed until she was able to be off a vent. Her test results came back and she did end up testing negative for SMA and everything else that they tested her for. She was getting stronger. She could move her legs and had been starting to move her thumbs and wrists. She loved being in the water, she looked like a normal baby when she didn't have gravity holding her down. With her limited movement, she made up for it with her facial expressions. Oh those eyes...i could tell what she was saying all the time with those big brown eyes that look just like her daddy's. And her sister.... May, my oldest, loved Lua to pieces. One day a boy was staring at Lua, now may is 3, and she went over by lua, stood up to that boy and gave him the meanest face I have ever seen! She did not want him looking or touching her sister! She demanded to hold Lua all the time! And the night before Lua passed away her and May spent probably close to 2 hours snuggled up with May holding her. My 3 year old never had and probably never will again sit so still for 2 hours. I'm so glad they had that moment. Today my daughter talks about Lua all the time, how she is with the angels and she hopes Lua teaches her to fly some day. And whenever may sees the moon she always says "hi Lua! We miss you! We love you!" You see Lua means moon in Portugese, she was named after the moon because when we had found out we were expecting, we took a long walk around our neighborhood and the most beautiful moon was out that night, we quickly came up with Tessa Lua, but the more we thought about it the more we loved Lua! And she lived up to that name. The day she was born was on a full moon, and the day she passed was also a full moon.

She had been fighting and fighting this sickness that my 3 year old got and so kindly shared. She never needed oxygen before but once she got sick, she ended up needing some. She would get so congested her oxygen level would drop terribly until we could break it up for her, she wasnt able to cough or move around to break it up. After requesting a machine to help her cough, we were told no she couldn't have it.. Thanks doc... And had to do cupping and suctioning her trach like crazy. I called the hospital every other day and got a "lets just keep an eye on her" until finally I got a doctor to get us an antibiotic to treat for Pseudomonas. Before she got this medicine she was sleeping all the time, after the first dose she started perking up already. She seemed to be getting better and better so I decided to take her in to out local hospital to make sure everything was okay. After 4 hours there, all results came back normal so we assumed she was on the mend.
this was in October and we had been stuck inside for 2 weeks, lua loves going out and seeing things so I thought it would be a good idea to go to a pumpkin patch. We spent the day there, came home, and Lua had a hard time taking naps all day. Not one nap. We got her and my daughter ready for bed and after her trach cares, I snatched her up, held her to my heart, sang our normal song I sang to her every night, prayed for her, kissed her and told her if she wants to walk someday, then she will do it! My husband then finished putting her to bed.
I woke up at 3am and saw her heart rate was up so i knew she was awake. She was always a good sleeper so I had to check on her. This breaks my heart to write all over again, but I stayed with her, holding her, walking with her, suctioning her, but she wouldn't sleep. I was exhausted and asked my husband to try.
next thing I knew I woke up to screaming and ran downstairs to find her not breathing, she was gone, but I started CPR anyway and changed her trach incase she had a plug, and had my husband call 911. But it was all too late, doctors worked on her for about 20 minutes then told us she had gone into cardiac arrest.
we later found out from the autopsy they claim she died from pneumonia. I had just had her in to see a doctor not 6 days before this. And no one found anything. I feel like the biggest fool to not have seen she was suffering and sick. Instead of going to the hospital I took her to a stupid pumpkin patch all the while my poor baby was in trouble. I think a lot of my struggles are having to deal with missing the signs, and allowing her to be suffering for so long before she just passed away. I can't stand it. She fought so hard for her life, she counted on me and I let her down. I hope she knows how sorry I am that I couldn't help her, I hope she knows how much I miss her. Turns out I need her as much as she needed me.

Lua March

Summarizing her story is turning out to be harder than I thought it would be. It is insane to know where to begin, I suppose at the beginning would help... sorry this may be long

This may be a little tooo much TMI, and I know everyone who knows our story already knows all of this, but for anyone else who is interested... 

I was due with her at the end of March, I was guessing it would be more April, but to my surprise March 14th I went into labor, her at 38 weeks. Which isn't that strange, but with my first she had to get an eviction notice. While I wasn't sure if it was true labor or not, I hung out in our house waiting around for contractions to either stop or get worse. Of course my doctor told me months before hand she would be gone this day I went into labor, so I was hoping that it was just false labor. But at 5pm on the 14th things started to really move along and we started our 1 hour and 15 min. drive to our hospital. Everything was moving well I was pretty far along and everyone was expecting this baby to come pretty quickly. But once I hit 8 cm everything seemed to stop and we waited and waited and waited for three hours before I finally made it to 9cm. So the decision was to start pitocin to see if we could move along, this was almost 5am the next morning and my contractions started at 3 am or so the morning before! Once that started it was with in 5 mins water was everywhere, with the signs of the baby being in distress. And soon our baby literally popped out and landed on the bed. She was white, purple, blue, all the shades of a baby who was not able to breathe. I tried to look down at her and only saw this white ball and I thought i heard the doctor say, he needs the cord cut now. I was shocked that it was a boy! I asked in confirmation, "Oh it's a boy?!" and my husband said "No, it is a girl!!!" He cut the cord and they took her to work on her, right next to me but I couldn't see her at all. So many people showed up. The doctor did an amazing job trying to get her to breathe and then resuscitating her, he worked really really hard on her but it just was a complicated situation ... They called for help from the children's hospital which got there 30mins later and intubated her then took off. My husband left to follow her to the hospital and left me and my sister at the hospital, my sister had been with us for most of the time we were at the hospital. So honestly at this point, I didn't really understand what was wrong with my baby, I didn't think it was SO bad, the one nurse did tell me she didnt know if everything was going to be okay, but I still couldnt comprehend what had happened to her, especially since I didnt really see her. Then my husband called. The worst phone call I have ever received. He told me the doctor told him they would have to turn off the support in 24 hours and that she probably wouldn't make it. So, crying, I got up and got ready then went out to the hall and told the nurse, I'm ready to be discharged now. She hesitantly said, "Oh, okay, I will get the papers ready" and just 6 hours after having my baby I was discharged and heading over to the childrens hospital to see my baby.

When I got to the hospital I was able to go right to my baby. OH how that hurt. My poor little girl. I'll admit, I heard she had some stiffness problem and was contracted in her joints, I was a little scared of how she was going to look, but when I saw her, uuugh, it was wonderful and painful all at the same time. It hurt so bad because she was so beautiful, her beauty literally blew me away. Seeing her in that situation broke my heart to pieces, my stomach dropped to the ground, I couldn't breathe, and I felt like my heart was going to stop. The doctor then told us they thought her leg was dead or not working because it was so blue and limp, her jaw was too small, they couldn't be sure if her brain was ok from the amount of time she went with out oxygen, or how her heart was, they didnt know if her kidneys were working, they said she was missing a rib and had two fused together on one side, she had a cleft palate, club feet, and skeletal dysplasia. The hardest thing ever to finally see my baby and I can't hold her and I find out they think she isn't going to live. 

This is all that same day of me just giving birth to her, so they gave us a room and let me take a nap for a bit. They started doing tests on her that day and week and we started getting results back. Her heart was good, her brain showed nothing abnormal, they found the missing rib, and the other two were not fused together, she didnt have skeletal dysplasia, her leg wasn't dead but bruised from having blood taken, and later when she was transferred to a larger hospital, they found she didn't have a cleft palate. What she was diagnosed with was having arthrogryposis where most her joints were contracted and stuck in position. She was stuck like a froggy and her wrists were pretty bent inward. Arthrogryposis isn't actually a diagnoses though, it is just part of another condition that caused it. Unfortunately to this day we still do not know what her condition is, or what caused it.  

Though later that week I found out from the doctor in the first childrens hospital we were at, that it should have been impossible to deliver her naturally because of her condition, it doesn't allow her to lengthen her body out like normal babies do when being delivered. She seemed very amazed with the delivery and i was wondering why she kept telling my husband that he needed to make sure i was resting! Although it would have been better for Lua if I had gotten a csection, but we had no clue anything was wrong with her before she was born.

I realize this is very long, so if you would like to know more about her story I will add the caring bridge site to the bottom of this. The start of her life was rough, but each day she seemed to get stronger and stronger, when she ended up catching a cold from her big sister we were blown away that she wasnt able to beat it. 

http://www.caringbridge.org/visit/luasouza

How to start...

A year ago today, me and my husband were preparing for our second baby. And with not being able to find out the gender of our baby, we were going through things we already had from our first daughter and looking for as many gender neutral things as possible. I can't believe that use to be my biggest problem, wow, I wish so bad that that was still my biggest problem. Instead I now have to figure out how to have a life after losing her, my precious baby girl.

So in hopes of being able to figure out what the point is in life these days, I've decided to try blogging. I had a caring bridge site for my baby, but it doesn't feel like it is still fit to put my thoughts and feelings into it, it was to update on my baby, not for anything else, although I'm sure it could be I simply don't want it to be a blog for me but to keep her story there instead. Regardless, I have been having difficulties learning how to live after losing her. For anyone who knows me and the situation, I know what you are thinking. You have your other daughter and husband and should be happy, and lucky to have them. And don't get me wrong, of course I am. But for the 7 months that I had my baby, with her medical issues, she gave me a great purpose, she kept me busy, and having her and her sister I felt complete. Now she is missing and I am not complete, I'm broken, lonely, sad. so on and so on. So lets give this a shot and see if writing these crappy feelings, thoughts, or ideas all down will maybe help some or any.
Well we will see.