getaway

This last weekend we headed to Minnesota, we were planning on going to a muscular dystrophy event for families, and we were going to meet up with some cousins. Unfortunately, my cousin's daughter was sick :( so we change our plans a little bit. I had thought about not going and trying to plan a little better and go again another weekend when we would have more time and be able to visit more people. But I don't know how much free time we have left and if we didn't go this weekend, we might have not been able to have a nice little get-away for awhile. My parents and us headed over there for just over night Saturday and left earlier on Sunday. It was a pretty good time though. And it Was nice to getaway! A refresher. That always helps! And walking a lot, always makes baby kick a lot! By the time we got home, I felt like I had a little tap dancer in my stomach because he was going at it for awhile!
It was also nice for May to be able to spend some time with grandma and grandpa and for us all to hang out for awhile. It is great when she is able to make memories with her grandparents, some of my favorite memories are with my grandparents too!

On a side note, I think we have gotten to some conclusions on delivery. We met with the neonatologist in Neenah, and hopefully if things don't look to be getting any worse, we will be able to deliver there. Next we have to meet with a new OB for the rest of my doctor appointments. We will also meet with Madison for a consultation in case we were to have to be transferred there. In the next few weeks we will have to do that then, take a trip over there and see the hospital and all that fun stuff. We have our next ultra sound November 5th, my moms birthday, and we will hopefully know more and get the okay from my specialist doctor to deliver in Neenah. If he feels it is too severe, we will just have to go right to Madison. I'm really really hoping that things will fall into place to go to Neenah. It is a nice NICU and we are familiar with it and it is close to home, that would be so great! It would be even better if baby came out breathing like a rock star and had no issues at all! But realistically I just want to shoot for a NICU stay at Neenah.

One year out.

Yesterday was one year since our baby passed away. On Sunday we went to her grave and dropped some fall items off and spent a little time there. It seems unreal that it has been a year yet it seems like it has been forever since I've held that little baby in my arms. I tried to ignore the day over all. I guess her birthday is a more significant moment for me than remembering the day she died. That day she passed was the most painful day of my life, I like to not go back there if I don't have to. To be fair the day she was born was Really painful as well, but at least she gave us so much joy seeing her and her beauty and watching her get stronger. Everything is harder when she isn't with us. I really haven't spent too much time reflecting on how it has been a year and all the feelings that come with it. I did go back and read many things people wrote to me the day she passed. I am still blown away with all the encouraging words people sent to us and how they supported us. The situation could have been a whole lot harder if it wasn't for the family and friends we had during that time. And even this year, I had a lot of people send me messages saying they were thinking of us. That really means a lot to me that so many people are keeping us in their thoughts during such a difficult time!
Me and my husband went on a walk around town for his lunch break after dropping May off at 4k, it was nice to have some time together. But the only thing I could remember is the walk that we took a year ago yesterday back to our empty house after learning our daughter had just died. I didn't want to bring it up though, and this walk was much better than last years walk, but honestly I am surprised by how many things change in a year. Not that taking a walk around waupaca is a huge change, but it is a change in itself, it is a new town, we own a house, and we have baby #3 working on growing but yet we only have one child at home. Definitely not what I pictured we would be doing a year later.
I miss her tons. So many things I wish that would be different.
But I know now I have to focus on this new little baby and helping him be the best he can be. I thank Lua for laying down the pavement for us, and showing the directions we need to take, the doctors we need to find, experiments we need to try. I am also a little mad that this had to happen to her at all and him, but since I apparently can't change anything, we will just roll with it.  
Today we met with the NICU that is near to us, about 45mins away, to see if they would agree to let us deliver our baby there, and everything seems like a go for now. Unless they see in ultrasounds that he is getting a strong contracture in his jaw or if his jaw is being pushed back too much to cause his air way to be closed off. If that is the case then we will have to go to a bigger hospital that can intubate in a different way than their NICU can. So if the baby could at least give me this, be easily intubated, that would be a great step! So we don't have to move to a bigger hospital for months again. But we will see what the next ultrasound will say. It was great news to hear though, that they are willing to take us in and they will transfer to the hospital that we want even though it isnt usually the hospital they transfer to. So all of that looks like good news.

Still thinking of you my little baby angel!

fall

Today I am feeling a little more hopeful, not for any reason in specific and I almost don't want to admit that I'm feeling this way because it might just be a distraction or something? But I think you can only stay down for so long before you have no choice but to start to go back up. And we have another ultrasound appointment in November so I will always have another chance to feel really upset about the situation. I think it was because May went to 4k really well today! She didn't cry on the way to school, or when we walked in, or when she hung her backpack up. She got a little nervous but she even let me walk in with her with NO TEARS! Gave me a hug good bye and just did So Well!! It was a really nice break! I did bribe her with going to the mall after school so that might have been the trick! Or maybe I'm feeling a little better because after eating some cookies yesterday little Mr. got Very active for awhile and has been on the move since, or what I am assuming is moving? Moving and hiccups anyway. But hey whatever gives you hope right? I also finished a very large order of tshirts, so I am glad that has been completed. Anyway today feels good so I figure I should relish in it!
Went on a lunch date with this guy I've been seeing for awhile ;) (my husband!) So I have been caffeinated which can explain some of it as well.. I haven't had caffeine for awhile, so this could have been a shock to my system as well. And it is also hard to be really depressed when you see all the pretty trees and fall scene all around.
Other wise there really isn't much else to update on.. I have an appointment set up to meet with the Neenah hospital next week to see if we can deliver there, I am really hoping they will agree to it and transfer to Madison if we need to because that would be so much closer than any other hospital choice we have. One thing at a time!

Our little tree is looking pretty beautiful, and there is this HUGE pumpkin at May's school so we were able to take some pictures with it! May enjoyed that a lot.

 

trying...

I dislike having so many posts that are unhappy... But I'm finding it hard to be happy recently.
As a side note, I realized I should stop writing on my phone because of all the mistakes I've seen in my posts, and I can't make corrections off my phone.. Oops!
Anyway, I wish I was that happy positive person and could take this situation and handle it with grace, but lately I just get so mad at the situation. I'm mad I have to find a new dr. Now when a huge part of the reason we moved was to be close to my Dr. For delivery, but that isn't happening at all now. I'm mad at God for allowing this to happen, or not I guess, mad that he isn't more involved (?) in the situation. I feel like I'm just being punished over and over. Maybe I shouldn't have questioned Him for Lua passing. Maybe if I wouldn't have done that this baby would be ok. I'm mad at our genetics and for being such a lethal mix for a baby. I'm jealous of how so many people can have kid after kid after kid with no issues at all. If lua would have been healthy we wouldn't have had another. Im not asking for 10 kids! A sibling for May, something we so badly want and we can't make it happen. I see parents who so dont deserve to have kids everyday, and I can't for the life of me understand why they can have kids and we can't have 2 healthy ones. Everything just makes me mad. Im never going to be able to sleep well ever again because before this I couldn't sleep because of the loss of lua.. And now I spend my nights angry that this is happening again. And if he has the same progression Lua had, he will too probably pass away, or become paralyzed at an early age.
I understand why parents who have kids with needs would be annoyed with me and my negativity on this. I think it can sort of be like undermining them and their situation. They wish too for healthy kids but they are accepting of what their lives are now. I just feel like I've done this already. I accepted what life would be and I did my best to make the most of it. But I lost! Ultimate fail. Why should I be trusted again to have a child with any extra needs? If anything I think we proved we are not the couple who can handle this situation, so the saying you dont get more than you can handle is a flat out lie.
But I know I can't keep feeling these things because it will just give me bad karma... Im already on fates hit list so I dont need to bring in any more negativity. I need a better hobby, stress reducer, something to take my mind off of it since there is nothing I can do to help the situation what so ever. And this is hard because I'm the one carrying the baby. Im keeping track of his movements, I have a constant reminder that my DNA is poison to a child and I hate it. And lately I feel less movement, so makes me think he is possibly getting worse and losing more movement already. My hopes of him being better than Lua ks quickly fading away because the movement is slowing down, and I dont even want to talk about that with my husband... Because if he can keep up hope then he should and I dont want to take that away from him. After one of our first ultrasounds that they told us there are some concern, we went to the mall after and I asked him straight up, do you think he has the condition? And he said, yes. I was shocked and told him No! He doesn't! How could you say that he does? I never thought it would be possible for him to get the condition, I didn't think it was possible for it to happen to us again and besides he was so active in our first ultrasound. I was so disappointed that he would think there was something wrong. And I should have left him be. I should have given that to him instead of giving him false hope because now I'm the one who is really down about our situation. But how do you get it off your mind when you are consumed with it?
the only silver lining here, is with all this devastating news, I haven't felt much pain over the loss of lua, and haven't been thinking too much about how it will be a year in a couple days that she passed away. Now I'm scared to death we are going to live out our worst nightmare for a second time.
I have a busy week, we need to find the hospital we want to deliver at. Madison, Neenah, or Marshfield. Milwaukee is very much so out of the running, although they have great nurses and other doctors there, I dont want to be treated the way we were again. Maybe we can have a better shot at another hospital to get the best care possible.

another ultrasound

We didn't leave the appointment in total disappointment, not a whole lot has changed. And since the only time I said anything on facebook, everyone was beyond annoying, I will not be posting any updates for friends and family anymore on there.
His position was still the same. I really thought going in the morning would change something, and I used music to try to get him moving too, but no luck. Same position as always. Still fluid on his head because his head is flexed and when it is flexed like that he isnt able to drain properly. They also have never seen his jaw but it does seem to be too small, which means it may be very difficult to intubate at birth and cause breathing issues. We did see him practice to breathe quite a bit, but that really means nothing to me because Lua could breathe too she just didnt have an air way to breathe out of. His feet still look pretty clubbed and his hand is still flexed. So again, no changes, the only thing we are left waiting for is to see what happens when he is born I guess. And working on deciding where we will go for that. I would really appreciate if we could stay closer to home, so the childrens in the next town from us, but if his chin is too small they may not want me to deliver there because they will need a different type of intubation and I would be required to go to a larger hospital in that case. I'm pretty certain I wont be going to milwaukee so my only option is to go to madison to deliver. We will be meeting with the doctors at our local childrens to see if they will let me deliver there and I guess go from there.
We were able to see his face a little better this time though.