June 30th Is AMC Awareness day!

June 30th is Arthrogryposis multiplex congenita awareness day! 
Do you know what Arthrogryposis is? Because I had never heard of this until I had my baby. The simple basic way to say it is that it means curved joint which implies the joint is fixed in a curved position.
Arthrogryposis multiplex congenita (AMC) means a baby has to have 3 contracted joints in 2 different body parts.
Lua was contracted everywhere, her fingers, her hands, her elbows, her knees, her feet, even her jaw. And every doctor will tel you babies get this many contractures by not moving hardly at all while in the womb. I swear Lua did move, she moved enough for me to not really question anything. Her movements were very different from my first, but I thought that each pregnancy was different. In her ultra sound, we saw her bring her hand up to her mouth and put her finger in her mouth and suck on her finger! I get the feeling a lot that doctors dont believe me, but we have the video and showed it to all her therapists.
AMC is Not Lua's diagnosis, but a symptom of what her diagnosis is. Her body showed signs of a more severe disease like Spinal Muscual Atrophy, but when she was tested for this, it came back negative. She was the biggest mystery! Right now they are in the process of going over her DNA to see if they can find what caused her to be born this way.
Anyway back to AMC. 
Lua fell in the statistic of the 20% to 30% of infants that will pass away before they are 1 year old.
AMC occurs 1 in 3,000 live births! That is a lot if you think about it! 3,000 is not much at all! Club foot is a type of arthrogryposis. 
There is no cure for AMC, but some people with AMC aren't as effected as severely and with therapies can go on to live a very normal and happy life!

I remember my pretty much first time getting support from the AMC family. We were sitting in the waiting room in the childrens hospital after Lua had been transferred there and waiting to go in and see her. My husband and I were of course frantically searching the internet for information on this thing call arthrogryposis. He had messages sent out on boards on the AMC support site, and he finally heard back. I remember how positive they sounded to the fact our baby had never moved yet. They were all so very encouraging when the doctors were so very not. It is a very special community, those apart of the AMC group, and the kiddos are nothing more than amazing! I think each and every kid that is effected with AMC just has something a little extra special about them. Just like the babies with SMA, it is an extra sparkle in their eyes that captivate our hearts. And each of these kids hold a special place in my heart and always will!!!
I do ask to please don't ever think that something like this could never happen to your family, because it can! Diseases and disorders don't discriminate, they go after anyone and everyone. Look up these conditions, read about them, ask questions! Having more information never hurt anyone! I wish I wouldnt have been so ignorant to never think anything tragic could ever happen to me. Before Lua, I would see all the sad stories about babies and feel for those parents, but after a few days it goes away and you forget and move on. Those parents don't get to move on so quickly, and the fact that someone reads their story, or looks up the condition their child has, well I think that means a lot. 

Today we wear blue to spread awareness for AMC. Today I wear blue for my angel. 

Her progress... first picture is one day old, the next is 3 weeks old and then 5 months old. She did make some great progress. She could even tolerate being sat up, which was a pretty big accomplishment for her! 

Wishing for normal

Sometimes I feel like there is something wrong with me, why can't everything just come back together and I can feel normal again. Although, I know I will never fully feel normal ever again, I do wish that I didn't feel so strange with life. I don't know the exact words to describe what it is unfortunately. If anyone who is reading this has ever lost a baby, I highly recommend you read the book, Empty Cradle, Broken Heart. The book is so spot on with the different feelings you will endure and experience, and it helps me to feel like I am not a total nut case because they are talking about the feelings I am having to a T! And tonight I read a section about spiritual aspects, how some people will cling to their beliefs and use it as a comfort, and others will struggle and question their faith and beliefs. I would happen to be the second one. I never thought I would have any difficulties especially since I never really did before, and that is counting going through high school! This is why I feel like there is something wrong with me. While so many other mothers, parents, and family members cling to their relationship with God and rely fully on their faith, I struggle to do this. I also feel like there is no one in the world that I can talk to about this because, well the one time I did I only hear, well you better figure it out soon! (This wasn't apart of that conversation but I basically felt like they were saying) Do you want to go to hell!?!! I feel like I would get the same response from pastors too. I want people who are devoted Christians and look down on those who have struggles to know that it isn't that easy!!! I can't just switch a flip and have this new rejuvenated faith and relationship with God, because if I could do that, I would do that! Of course I would choose to do that, and I am sorry to everyone who thinks that I need to 'figure it out', or the fact that because they are going through struggles and giving everything they have up to God doesn't mean that is how everyone else works. I think part of it is I have extreme fear in giving it all up. I prayed for this little baby Lua since the second I found out I was pregnant with her. My prayer was always the same, a healthy baby and a safe delivery. Ok well, she wasn't healthy, and her heart almost stopped after she was born, so I didn't get anything I had been praying for for the last 9 months. I am not dissing all the miracles that happened with Lua, but my fear of asking for anything ever again is real. What if I pray to keep a friend safe from this and that and it doesn't happen?! I prayed so many times after Lua was born that she would meet her full potential here on earth. She improved and then she declined and now she is gone. It is all so very hard for me to understand.
Some days I simply cannot fathom that this happened to us. I am not talking about her complications she was born with, I do not think I am too good to be given a child with extra needs, after the initial shock of it all, you learn to live with it, and then you learn to make the best of it. I thought that would be my worst struggle, having to learn all the new cares for the rest of my life that I would have to do for my child. I knew some day I would lose her, I understood God may eventually take her, but I never expected it to happen, especially so soon. 
Right now I am trying my best, but I am disappointed, hurt, confused, and of course sad and all of these things have just made me view the world and life differently than I did before. I know this isn't the 'right' thing to do, but I am honestly waiting for some explanation or extra help from God. I know, I know, everyone is thinking that is so stupid, you should be out there trying and trying and trying. I just wish people knew how hard I had prayed for our baby, tears and break downs every day bagging all for nothing??? I love the go to's as well, she is free from her struggles, she is healed, and God has another angel. But I still needed her! I know that is selfish, but if you knew you had to let go of one of your children, how easy would it be for you? Would you not be selfish as well? Why do people assume that parents who have lost a child won't still want to be selfish? I guess I am not like Abraham at all, I couldn't do what he was committed to doing, but to be fair in the end he didn't have to kill his son. . .
I am serious, though, I am jealous of those who have gone through difficulties in their lives and they were so easily able to connect to their faith and only make it stronger. The point of me mentioning the book, (now paragraphs way too late) was because they talk about how it is normal to have these struggles and that sometimes it just takes time. I wish more people understood that and could be more supportive. is it kind of odd how I had so many great supporters with Lua and everything, but when it comes to religion, I feel like I have none. There isn't anyone who could listen to my struggles and understand with out judging me. Ugh, sometimes I wish there was someone who was in the exact situation as me so I wouldn't have to feel so alone. 

Goodbyes

This week has been a very sad week. A wonderful lady who has been coming to me for tshirts for 2 1/2 years now, passed away day after fathers day. She had a long battle with cancer, and she sure fought so hard every day! I didn't work with her, or knew her as well as others, but I am so glad to have known her at all! She was so kind! And after Lua passed away she wrote to me such encouraging things when she was having struggles of her own! Anyone could see that she loved her family so much and how important they were to her! She was such a wonderful person, and it is really sad to see all the amazing people leave this earth, when the world really needs every decent person it can get! To her family that is left behind, I am so sorry for your loss! I am hoping for peace to fill your hearts as you start your new journey with out her. 

Also this week, a baby I had been following since joining a trach group, passed away At 6 months old. It always gets so hard for me to see trach babies go, mostly because I can feel the exact pain the families are going through, and I don't wish that pain on anyone. He was a pretty amazing baby too, you can see more of their story by following Team Drew on facebook, the link here 

https://www.facebook.com/TeamDrewKramer?fref=ts

For his parents too, I am hoping they are able to have peace during this very difficult time that they will be going through. So sorry for their loss. 

I would love to write more but my 3 year old has a case of the chatties today and cannot stop talking for more than 5 seconds right now, making it super hard to concentrate on anything! Guess it is time to get outside and make her run her energy off! 

Fathers Day

Happy Fathers Day to all the dads out there! I feel that often fathers don't get the credit they deserve, and or all the recognition they deserve! Especially my husband, I know I don't brag him up enough and he very much should be bragged on. I hear from soooo many people what a wonderful daddy he is! And it is very true, I think I like to not throw it in anyone's face how good of a dad is to his girls. I thought of saying was there because one of his girls is no longer here, but you never stop parenting even when you child isn't here, and it is even harder to go on parenting a child who is gone. Anyway!

My husband is an incredible for so many reasons. He spends so much of his time home playing with his daughter, and the first thing he would do when he got home when Lua was here was give her kisses and hold her! He use to put Lua to bed every night, doing all her trach cares by himself, and now we take turns reading to May at night, when he could totally be resting from working all day. When we go to parks, he is he dad playing with not only his daughter, but all the other kids! I can't even count how many times there is a huge group of kids playing hide and seek in the park with him, while all the other dads are either not there or sitting watching. But I'm not saying this to put down any other dads!!! Not at all!!! I understand most dads are working or need a break to sit, and honestly, I'm that parent who sits and watches their kid instead of playing. I strictly want to brag up my husband because he has done something not many fathers have or will ever do! He held his baby girl as she passed away in his arms. 
I know this will sound weird, but many days I think how grateful I am that it was him and not me, I could never have the strength to go on if that would have been me. I like to think Lua knew this, in some sense, because she could have passed at any point while I was holding her, since I had spent all night long holding her. I couldn't, I simply couldn't have done it. I know this has been the hardest thing for my husband to deal with, but because he is the most amazing, strongest, father I know, he will be able to see the blessing it was to be with his baby during that time. No parent can ever imagine what it was like for us that morning, the pain and horror we had to go through. That morning will always be the worst day of my life that gets to replay in my head over and over and over, yet amazingly my husband has been the strength in this family to hold us all together. 
He is the best, strongest father I know, and his girls are so lucky to have him. I am so lucky to have him, I really couldn't picture a better father to my kids. 

We recently celebrated our 5th year anniversary, actually yesterday. When we got married it was actually on fathers day! I never thought 5 years ago that we would have moved 4 times, had 7 different jobs between the two of us, live in two different towns, have 2 babies, then lose a baby, and now have one on the way. I thought after how hard we fought to be together and how long it took for us to finally be together! I really thought we would kind of just have a boring life once we finally settled down. I realize now that, that will never happen for us! We will never have a boring life, and I really should have known this. I should have expected our kids to be anything but normal and boring! May is nothing more than a spit fire who mesmerizes everyone she meets! And Lua was extraordinary! The smartest baby I have ever seen! I say this not just because I am her mother but because after her being gone and seeing healthy babies, I realized what everyone was saying when they told me how much she could talk with her eyes! The girl didn't need a voice because she spoke in conversations just by looking at you! It was truly amazing, she could captivate anyone who came to see her. One time she was being wheeled down to get a scan on her belly after her gtube, and she totally captivated her respiratory therapist. She looked into his eyes and he was done for, they had a conversation the whole way there! He talked to her and she answered back, and he was just a goner for her ;) And yep those are my kiddos! Me and my husband started out in a very unique situation and I think that will be the pattern of our lives from here on out. I'm really almost afraid of what will be next, but I'm sure it will be extraordinary in one way or another.

And fathers day... I wouldn't know what a good father was if it wasn't for my dad! My parents are both amazing, And my In laws too! Maybe we have unique lives because our parents were so amazing for us! Both our dads are insanely hard working parents, who love their kids to the moon and back and would do anything for us! It is definitely something we should never take for granted. I feel very blessed to have such a strong father figure in my life, and when Lua was born, I saw his vulnerable side. I know that this sounds ironic, but in his vulnerability I also saw how much more strength he was capable of. I'm glad he has always been into medical stuff, because he took on Lua's trach like a champ! No problems with his first time changing her trach, when it totally freaked me out!!!! I don't think there are many more grandpas out there that would take on the task like he did.

Amazing men in my life and I am so so so grateful for each and every one of you!
Happy Fathers Day! 

Baby C

Yesterday we were able to see our new little kidney bean, aka baby c. At our first doctor appointment we weren't able to catch a heart beat, so the doctor thought it would put me more at ease if we got an ultra sound and an idea of how far along the baby is. Measuring at 10 weeks 2 days, so pretty accurate to what was originally thought. It was good to have this ultra sound, even though the tech didn't spend much time looking at the baby, he just kept saying, 
"well I don't even know why you are having an ultra sound so early, there isn't anything to see." 
I tried explaining to him that our last baby had complications and we wanted to be on top of things this time around, I don't think he really cared and kept repeating, yeah well there just isn't much to see.... But we did see the baby bouncing around and kicking and moving and that was super important for me to see!!! And he would only spend a little time looking at the baby, so weird, oh well. Anyway I feel a little more relaxed now about this baby after seeing it move so much. When we did an ultra sound at 16 weeks, it was like Lua was sleeping during the whole thing, she hardly moved. All the doctors say that arthrogryposis happens around 14 weeks (? I believe) This could explain why she was so quiet in there. 
Around 18 weeks I will start routine ultra sounds and they will look very closely at the baby to make sure it is very active, the more active the better! And this will go on until 32 weeks about, we will be keeping a close eye on this little bean here this time around. 

Some moments I feel so insanely guilty that we are having another baby, that I feel some what happy and excited about it. It seems like I don't deserve this life, go from having all this hard work keeping our baby alive to back to normal every day same ol' same ol' thing?? I mean we failed at keeping her alive so it feels like maybe we shouldn't get a second chance??? It is a very complex arrangement of emotions that is going on. I am glad that going through this will help to heal us and all that has happened, but I still struggle with all the guilt that comes with it, it is really hard to explain.

A lot is about to change for our little family as well. We are finalizing all the details for the house we are working on purchasing, and then hopefully we will be moving mid July. It is exciting to be going to a new town and a new house! It is also hard leaving here, all our friends and family and our routine we have here, but I think this move is pretty important for us to finally get a fresh start... and again with that comes guilt. Living here is where we had Lua and unfortunately where we are living is where she passed away and I don't want it to be like we are leaving her far behind. But what can you do? She has to stay close to our hearts and move with us. I also know she has to start moving towards the back of my mind more, something I really don't want and don't even know if I can do. I spent so much time thinking about her and remembering all our moment with her, but I know at some point that will get less and we have to move forward. I hate that! If I could have a wish, I would wish for her and her medical problems, with the new house, new town, and new baby, all together! That would be the best option we could have ever had!

Little peanut. Heart beat 175.  

Going home.

I can't believe a year ago today our baby Lua went home from the NICU. While we were there I never thought that day would come. Now looking back at it 3 months went by so quickly, and if it would have let her live longer than 7 months, I would have kept her there longer! I wish I would have known! Well there are a lot of "I wishes" with that whole situation, but unfortunately it is what it is now. 

The day we brought her home was insanely stressful!!!! We had her in a neck guard and body brace because she was pretty weak and we all felt she needed the support to make it back home. When we finally were able to get on the road, it wasn't but maybe 15 mins. that her monitor started going off saying she was dipping into the 85s for her oxygen level... I made my husband pull over and check her out, and she looked fine but the monitor was not saying the same thing. She was constantly in the lower 90s and me suctioning her a lot because I was scared to death she wasn't able to breathe. I think she was able to get a nap in there for a little while, but then about half way through our trip, our stupid monitor died!!!! We werent use to just looking at her and being able to tell if she was struggling or not yet, so we needed to have that monitor!!! we had to pull over at a gas station and charge it up. It was nice for Lua though anyway because then she got to take off all that extra stuff on her for awhile. When it was finally charged enough we finished our trip by me still freaking out, the monitor still going off constantly, suctioning her all the time in the fears she was struggling, and trying to finish her feed. It was terrible and I said I would never go anywhere with her again!!!!! And actually I pretty much avoided sitting in the back with her if i could and only did it a few times after that terrible ride home. 
It was soooo overwhelming when we did get home! We had a wonderful banner and balloons in our driveway! So awesome to see when we got back! But we also had our medical supplier at home waiting for us as well, and while we were trying to get Lua adjusted in our house, there she was sitting and waiting and waiting, because she had to go over all the medical equipment with us. It was insanely stressful and pointless because she talked to me for over an hour on all the crap that would happen, and I forgot everything she said by the next day and she totally just overwhelmed me!!!! we already knew how to use the basic and most important things, it was really pointless to go over this huge order form just seconds after we got home from the hospital. If I could give them any advice, it would be they really need to wait and let the parents at least settle in the house before they try explaining everything to a person. It is really just stupid. I'm not even sure what they are thinking?? But I didn't really like this medical supplier anyway, not sure if I had any other options but if I did I would have left them for sure!
I don't really remember how she did overnight, I think she did rather well. We did have to do a feed during the middle of the night but other than that, the girl could sleep like a champ! There was really only one night that she didn't sleep at all for us and was really fussy, and that was the last night we were with her.

I think when everyone is in their young days, they picture their adult life in a certain way or have an idea of how their life will be. I know most of the time no ones life turns out the way we plan, the smallest bump in the road can change the whole outcome. I honestly can say I never pictured my life going this way. After we had Lua, all the adjusting we did and getting use to have a baby who will need a lot of help most her life! I grew into it and got use to it! No parent imagines they will have a child with special needs, but once you are in that life there you do have to learn to give up your former life and adjust to this new one. I think it is simply a matter of fact. Your old life is gone when you have a healthy kid, your life is totally different with a child with needs! I'm not saying you have to give up everything that makes you happy or give up yourself, but you have to learn to adjust to it and make the best of it. It is a huge task, and it is insanely difficult! I felt like I was getting into a good routine with our new life. Balancing both girls, making our life as normal as possible, and I was enjoying it as much as I could. Of course it was hard and I would feel bad for myself every now and then wondering why she had to have so many complications, but you have to move on from it or your child won't improve. Now though, now, I look at my life and wonder how it became this??? No one ever pictures a life where they lose a child. It is the worst thing that can happen to a parent, and sometimes I am still in shock that this is my new life. I would rather give up every second of freedom I have if it meant I could have Lua back.

And the point to all of that, eventually we all have to let go of what we thought our lives would be and move on from all of our expectations. As hard as it is, eventually we all have to just move on.

Her going home contraptions 

Her progress

(14 weeks she is at home)

Being at home. Sleeping in her own crib!! Sunggles with her sister!

^ My favorite site was seeing her sleeping in her own crib! <3

Support Network and insensitive remarks

I have been reading Empty Cradle, Broken Heart, a book that a sweet friend mailed to me after losing Lua, and I came across a section that I felt was so perfect and should be shared with others! A section about unsettling remarks is a spot on section that talks about what 'friends' or people in general say that they think is helpful but it really is not! And in the book they give replies to the statements that, I'm guessing almost all, grieving people hear! I wanted to share this section because I hope that if anyone else goes through a difficult time, friends and family could think twice before saying the go to statements most people say. The replies on here are SPOT ON! Exactly the thoughts I have had when I've heard these statements! Since some of these are directed towards miscarriage, I can admit that I have said some of these things in the past too... I know it is really hard to know what to say in hard situations, that is why I loved when someone at Lua's funeral came up to me and said, "I'm so sorry.. my daughter told me that is the only thing I can say!" And she was very very right!

Here is a small sampling of insensitive rationalistic statements from well-meaning people trying to ease the pain, and here is how it can feel to hear these remarks. 

"You're healthy, young. You can always have another baby."
But you want this baby.

"Be thankful that you already have a healthy child."   --- I hear this one A LOT
But children can't replace each other. 

"I know just how you feel. My dog died last summer."
They presume to know how you feel or belittle your grief by making comparisons.

"Your baby is a little angel in heaven."
But you don't want a little angel. You want a baby in your arms.

"This is nature's way of weeding out the defective ones."
But why did this have to happen to you and your baby?

"You're lucky it happened now instead of six months from now."
How on earth can your baby's death be "lucky"?!

"At least you know you are fertile."
It is hardly a comfort to know you can conceive but can't keep the baby.

"At least your loss was final. When our house burned down, for months we kept remembering more things we were missing."
But you too will always miss your baby and remember what might have been as the years go by!

It is during the darkest times that you truly understand those who want to support you and be there for you, and I feel like I have been very lucky to have a very good support system. I have only heard these things from people who were not very close to me and the situation we were/are in, which is further proof of the friends you want to keep close in your life. There were many people who really stood up to the task and be there for us when Lua was in the hospital and when we first got home. It blew me away! I also feel like a special case because I know many other mothers in similar situations who have very little help. I could never thank the friends and family of mine who did anything that was asked of them during this really hard time! And I'm so thankful that none of them said these comments to me on a regular basis! I remember when I was younger my dad told me that the friends you make in high school won't stay your friends, the friends you make in college will be more of the friends you keep for life. The truth is, the friends you make or have during really difficult times in your life, those are the friends that you will keep for life! 


Thanks again my great support system! 

Baby Onesies

My 3 year old really wanted to make a shirt while painting one day... so we put together a little onesie for the hopefully new baby soon to come. Also saw an idea from one of the support groups for a little onesie and made that as well. Here are the onesies we made!

Love.

Anxious time for all.

Eventually I will post the announcement made on facebook about our expecting. I really didn't want to say anything at all on facebook because facebook is terrible annoying sometimes! But we are attending a birthday party on Sunday and May has been so so so excited that she tells people all the time and I started panicking that she may say something and then it would feel like being singled out and overwhelmed by questions and awkwardness so I figured better to say it now and people can do all their gossiping or thinking or whatever they want to and I dont have to be overwhelmed with everything!
I am surprised at how excited May is. She really loved her baby sister, everything about her! And she is looking forward to the new baby tons. She asks me almost every day if the baby can come out now. But she shares her fears with the new baby just as me and her daddy have the same fears. The other day we were talking about how may will be a big sister again and Lua will be a big sister and Lua probably hand picked this baby just for us! She always surprises me as to what she retains when we talk because a couple days later she asked me, "mommy will Lua give us another baby if this baby dies?"
yikes! Kinda took me back, I have to say I wasn't really expecting her to have the same fears as we do with this pregnancy. I did try to explain to her that Lua was a very special baby and her body didn't work correctly but that is a very rare situation. And later today she asked me what do we have to do to make sure this baby is very healthy? I guess the only thing I could think of is to tell the baby to move a lot! So she walked to my belly and said, move a lot baby!!! It hurts a lot to see her have struggles with all of this. I think part of me thought she wouldn't take the loss so hard being that she is so young. There are a lot of things that she does that I am seeing is a result of grief. She slept in her own bed all night long pretty much every night when lua was with us, she doesn't sleep well at all anymore and started right after we lost Lua. She also started doing this humming noise after Lua passed away but she eventually stopped doing that, but recently has started up again and I think it may have to do with having this extra anxiety. I truly didn't expect her to have so many struggles, but I think that only goes to show what a strong bond they had developed in such a short amount of time that they had together and I'm very proud about that! It is comforting to know that May will be an outstanding big sister again!

Moving time

Things have gotten busy around here. We are trying to work on moving, but with not having any where to go in the new town, it is hard to really get into the full swing of moving. We were suppose to move the first of June, but again we have no place to go yet so we have to figure that out first unless we want to live on a bench or something. Half the house is packed and now when I need something that is packed I have to decided really hard if it is worth unpacking or not, I'm trying to get creative instead of pulling things out. We found a house we like enough to put an offer on and the counter offer came back and was not close to what we were asking, so another offer in but time is getting super close now and it may look like apartment living is in our future again. Lots and lots of stuff going on! 

I don't remember if I mentioned or not but they started Lua's DNA sequencing in the end of April and waiting for the results on that now, should take anywhere form 3 to 8 months. I am now meeting with a specialist for high risk pregnancy, and he feels like the test should be done pretty soon here so maybe he will get things rolling for us. Finding the results, what that would mean for us, is since I am currently 8 weeks along, there are some tests that can be done at 11 weeks to see if the new baby has the same condition Lua had. Also can test at 20 weeks as well. This is IF they find the reason or gene or whatever that caused Lua to be in her condition, I think there is still only a 20% chance they will find a result or something around there. So besides knowing what it was to be able to find for the new baby, I think this would help give us some closure altogether which is why I pushed for it to be done, just to know would be really nice for me. I have spent hours and hours looking and researching different diseases that may be what Lua had and I think if I could understand it, it would help a lot. But then again maybe I would still feel a sense of guilt for having what happened to her, happen to her. I think I always will feel that actually! Especially if the new baby is healthy, how fair is that to Lua that we can have 2 healthy babies but couldn't have her healthy! And truth be told, if Lua was healthy or even just here, we probably wouldn't have had any more kids. Although we did feel like we may want to have another when Lua was a little bit older so we could have that new born that we missed with Lua, but that is all in the past now. I shouldn't even get started on the guilt of having another baby while we are still missing our baby we lost! But it really wasn't planned and maybe Lua picked this soul especially for us? I guess that is what I have to tell myself to get through all this!

Sweet Pea