Heart Beat picture

Although I have already post this on facebook, here it is again. Finally got her heartbeat framed, although I will probably re-make it because this is suppose to be purple!!! A good time to find out you have on color ink in your printer is when you are printing something out, I suppose. So after me spending 3 hours on trying to get the heartbeat how I wanted it, I go to print it and find this surprise. Oh well, I do like the color even still but still think I will print it to get rid of those stupid lines. Anyway! Here it is and I'm glad to have it framed and hanging with all our other pictures.

I had another dream about Lua a few nights back! I'm not really sure where we were suppose to be, but it looked like the basement to our church and she was laying in a box. I was worried that she didn't have her bedding changed in awhile so I picked her up and started holding her. Then she brought her hand to her mouth to suck on her finger, that blew me away! Then she started moving around and I laid her down and she started to try to get up and walk! It was amazing. I guess if I didn't get to see her do this in real life, at least I did get to see it in a dream I suppose.

The last few days have been kinda hard for May :( poor girl. The other day she pulled out her (as in May) baby book. She was looking at all the ultra sound pictures, I was in the other room, and she came in crying saying she missed Lua. I saw all her ultrasound pictures on the couch then, so she must have thought they were Lua's. Then yesterday she was standing on her slide looking at some pictures of Lua on the wall, when I walked in I asked her what she was doing and she said she wanted to talk to Lua, so I told her to go ahead and talk to her! I am still surprised at how much she has struggled with this just because she is so young but Lua was apart of her life too for 7 months so I suppose it is hard for her. She is even getting turned off to seeing babies. :( Poor girl. That is why we decided to take a trip to Disney and hopefully she will enjoy herself and we will all come back refreshed and still with a little empty space in our hearts.

leaving her mark

Oh, I'm so excited! I was looking through Lua's ultra sound pictures and I found one that had her heart beat! It was about 160s which she normally ran anyway! Sooo now I can take her heartbeat and frame it! So exciting! I was going to put that as a tattoo but I figured I actually have her prints I should do that. Man did that hurt! And Lua's foot hurt more than May's did, which figures I suppose. Anyway now I need to go out and get a frame and edit the heart beat, when it is all done of course I will post it, I hope I can get to it soon! But for now here is the picture of the tattoos me and my husband got for our babies! 

And also her grave site for Easter... I forgot a few decorations, grrr, oh well. My 3 year old went there later with grandma and put the rest of the decorations there.
The bottle balloon was picked out by May, because Lua is a baby ;) 

The many updates on trying to diagnose Lua

Ok this is for all the people who have read our caring bridge and want to stay updated on where we are with diagnosing Lua's condition. To recap everything, Lua had many tests while she was in the hospital, she had all the common ones and obvious ones that looked for muscular dystrophy, SMA, myotonic dystrophy, and also a gene panel done on arthrogryposis. She also had MRI's and an EMG, every one of these tests came back negative, normal, or inconclusive. We did refuse the muscle biopsy at the time we were in the hospital because if they had ruled out SMA and the other severe diseases, we felt the need for her to keep every inch of muscle possible. But since she passed away we did request a muscle biopsy be completed. We received the results of the test along with her final cause of death on December 23rd (2014) [a wonderful way to celebrate the eve of Christmas eve..] The findings we were told that the cause of death was due to pneumonia, I had talked to the pathologist earlier and he described her lungs to have had some inflammation so they are considering it pneumonia along with her undiagnosed condition. For the muscle biopsy this is what I was told by our genetic counselor. (copied from caring bridge)
 
The muscle biopsy didn't give a diagnosis, and it didn't give them a lot of information because there was very little muscle to it, most of the biopsy was fatty tissue and underdeveloped muscle. What it looked like to the pathologist is that of what you would see in a baby with SMA (spinal muscular atrophy) [[[In the spine, there is a particular gene (SMN1) that produces a particular type of protein. That protein is essential to the healthy development of motor neurons, which people need in order to do many things: breathe, swallow, walk, run. In SMA patients, the SMN1 gene is defected and either doesn’t produce the necessary proteins at all or doesn’t produce enough of them. So the motor neurons are weak or die off, leaving the body’s muscles to atrophy without use.]]]] 

I wasn't 100% happy with this answer because she was found to be 98% negative for SMA, I know there is still the 2% which in long could maybe be a different type of SMA that she had giving her the 98% negative results. I understand she had very little to no muscle tone but I am surprised that they didn't have any other idea as to what disease she could have that would be similar to her symptoms, unless it truly is only SMA that could be possible. I decided to push the genetic counselor to do more testing if they have her DNA available, which they did. So we decided to look into how much it would be to do the gene sequencing and also to have me and my husband checked to see if we were carriers of any diseases that could be passed down to a baby. Well it would be over $8,000 to get the genetic sequencing done, with her not being alive of course insurance won't cover it and there is a charge to go through the hospital and yadda yadda... we also looked in to doing an SMA gene sequencing instead, but that also would be about $1700 and that is limiting us to SMA only which at that price is a waste in case she didn't have SMA at all. We were set up to do genetic counseling to go through our history, but then that got cancelled because it would be better to gather more information up from Lua's DNA, other wise it would be like trying to find a needle in a haystack using us. Although we can still go through and have blood work done to check for, I believe, 100 different types of the most common diseases found in babies, which is $100 for each of us but a lot cheaper than $8,000! We have yet to do this but working on it. Here is the good news! The genetic counselor came back and told me that they have money set aside to do researches on certain cases, she only had to get it approved but she believes they would be able to do the research on Lua's DNA for us and at no cost! Since it is a research! Last friday I received all our paper work to get everything started! It may take a long time since it is being done on research time and when there is time, but hopefully we will be able to find something out with this, and it would be free!! So this is great news and hopefully the ball will get rolling very soon here and I'm hoping it won't take longer than a year to get some answers!

So just a long update on where we are and the possibility that we may find out what happened to Lua. I think this would help me, at least, to be able to know what it was so I can stop wondering what it was that caused this. I wish I could have only been able to protect her from it. 

Regrets

Some days I so incredibly miss her... And that leads me to think how people don't understand it. I feel like some people looked at her as a handful, intimidating, and overwhelming or as a burden. She wasn't any of those things to me. I won't make it seem like we had glorious days all the time, but our hard days were not because of my being overwhelmed, our bad days were when I had to watch her be uncomfortable and hate being suctioned or seeing her cry or try to move but couldn't, that is what made our situation so difficult. She was a lot of work of course and a lot of maintenance which could become overwhelming but truth is if I had to suction out a doll every minute of the day but was allowed to keep her I would be doing it! My comfort was so put on the back burner as long as she was happy. I really hope I'm wrong about people thinking she was simply a burden because if we are going down that route you can say any child is a burden, whether they are an infant or 26 years old, you will always have to do something for them most likely your whole life and I bet no one else would appreciate if I said to you your child is a burden. That is the least thing I ever want Lua to be remembered for, is she was a handful or too intimidating. She wasn't! She was funny, smart, stubborn and could light up a room with her eyes in seconds.

Going back to the hard days for me, watching her struggle, that is so hard to think back on now. It makes me wonder if she was so unhappy here part of her gave up and wanted to go, she had fought so much in her little life I have a hard time believing it was pneumonia that took her. I find it more possible it was an SMA like disease that expired her body with possibility of her choosing to go with it. Makes me wonder if I didn't make her happy enough, if I wallowed in our pity of why did this happen to her too much instead of focusing on how to make her as happy as possible. I don't know, I just know I miss her and our lives are very empty with out her... And I hate regrets.




    

One year trach anniversary for Lua

A year ago today Lua went in to get her trach and gtube. She was a month old! We were super nervous but a little excited because that meant we would be closer to taking her home. She did just fine during her surgery and it went really fast!!! I remember when they brought her back, I was in the pumping room so I didnt see her right away but when I came out my husband said, "you should go see her." That kind of scared me! But he said, No! She looks sooo different! I was scared to walk in and see her, I didnt know how different she would look, good or bad? But she was beautiful of course! and she did look so different! It was really nice to see her pretty little face behind that breathing tube. The funniest part was I noticed she was starting to open her eyes and it had only been maybe 30mins or some after her surgery and I asked the nurse how long she would be out and she's like, oh she will be out for a long time! I'm like, really? because it looks like she is waking up.. and yep sure enough she woke up! She didn't want to miss anything I suppose.

Now a year later, I am sending in the blue prints for her head stone. I just cant believe it. How did we go from that to this in under a year? I realized the worst part for me is how much her death took me by surprise... and I think anyone who I talk to when i say this they dont believe me, I mean she was born with a lot of difficulties but that is why we went and did all these things, the trach, gtube, staying in the hospital and learning everything we had to. We were preparing for the long haul! Not only for 7 months. So I thought with all this preparation and with no diagnosis, I didn't have to worry about losing her. But I was wrong, I should have been better prepared I suppose.

I miss her little life, all of her, the life she was, the person she was, the person she made me... I miss all of that. Sometimes I feel like I am so close to having her by me again but I just can't quite make that last stretch that I need to grab her... That doesnt make sense but it does some what in my head. And right now in our lives we are just a mess... My husband was offered a job in a different town and ended up not going with it. A change would be really good for us, but apparently we cant find the change that will work for both of us, so part of me feels like I'm suffocating in this house where we lost our baby. We arent really going forward, we dwelling in our sorrows which is only making it harder to move on. I simply wish something would change that would be for the better... we just are not there yet. 

First picture of her with her trach

 

Lua's Birthday Pictures!

Here are the pictures from Lua's first birthday!!! Felt like you were there baby doll! Wish you would have been! 

Thank you to our amazing photographer Hailey! These pictures are amazing, they make this day we had look so great even if it was terribly difficult.
Feel free to check out her work.
https://www.facebook.com/HaileyLundborgPhotography?fref=ts

A tribute to holidays, when they didnt suck so much

In tribute to my holidays suck post, I thought I would share some pictures of holidays that we actually enjoyed with our girls together! There was nothing better than having our girls together and celebrating each special day with both of them! Love my girls!

Easter 2014

Mothers Day 2014 

Mine and my Husbands Birthday 2014

Fathers Day 2014

And in memory of our guinea pig who recently passed away, Piggie Blackie 5 years old, This was shortly after we returned home from the hospital, he was enjoying some fresh grass and we were all together for the first time! 

Holidays suck

Happy Easter to all.... It is a lot easier to have a good holiday when you arent constantly being reminded that someone in your family is missing. It is days like today that facebook becomes a monster, not like I wouldn't do the same if it wasn't for our situation, but all the family and kid pictures of the happy families in all their Easter outfits is just blehhhhhhh. I think this year is especially hard because it was only a year ago we were celebrating with our bundle of joy and we were so thankful that we had her with us and we were waiting to go home and start our lives together and now it is all gone, that life I pictured is gone, and now I get to sit back and watch other families living the life I feel like I should have had. Especially holidays simply suck. I don't like to be or mean to be this huge downer and make anyone else feel bad that they may be doing insensitive things, but these are honest feelings that I am sure every parent who has lost a child feels. It is very unfair that instead of getting to dress my baby, I get to decorate her grave side, can you picture what that is like? It isn't fun, at least not for me, it is heartbreaking and painful. I have to say I am surprised at how difficult this Easter has been, I didn't expect it to be difficult, but many times today I had to push back the tears and suck it up. But never the less, we had a fine day with family, good food, and nice enough weather to be outside and walk! At least we had that.