30 week ultrasound

Sometimes I forget how things are actually going but then we have ultrasounds and I remember! We had no real changes in our last ultrasound. He was head down at our last one but now he is head up, so I guess that is proof he has moved, I don't think they are counting that though... They also couldn't see the outflow tract with his heart, I think that is the term... and his chest looked smaller than his stomach, they arent sure if it was just how he was sitting or if that is actually how he is growing, which isn't good, and wouldn't 100% surprise me because Lua's chest was a bit sunken in as well after she was about 2 to 3 months old. He still have very little movement, but I think there was more movement this time around but it still isn't how they want.. They want stretching and kicking and jabbing all over the place, and he just isnt doing that. He is breathing and having hiccups, but so did Lua. His growth is about 52% so technically growing well. We will go back in 2 weeks to see how he is doing then, they aren't sure what the rate of still birth would be with a situation like ours, probably not very common since he isn't moving, less chances of him doing much with his cord I'm thinking, but who knows. He does take some great pictures though! The kid is photogenic! It is like we totally can tell what he will look like now, like we took a straight up black and white picture of him.

Most of the time I have to go around not thinking that we are going to have a baby with a type of muscular dystrophy, if I think about it for too long it insanely breaks me down and I can't handle it. Then sometimes I catch myself making up this fairy tale life that I have to then bring myself back to reality. No you won't get to go to the local hospital and deliver a normal healthy baby, no you won't be able to come home 2 days after giving birth, no we probably wont be able to use certain clothes that I have already bought for him because he may come with extra equipment. If I don't remind myself every now and then that this isn't going to be like how it was with our oldest daughter, then I will have a very hard reality when he is born, and I need to be prepared for the worst to happen. But I dislike this feeling of being a virus for a child to live and grow in... I hate that I have to be different than normal people and how they carry their children. I really hate how everyone around me, that know our situation, act like everything will be okay and because they are praying for us and they have asked for his healing, then that'ts it and I'm wrong for thinking our child will be born with disabilities. That isn't how genetics work, and I'm carrying him everyday, I'm keeping count of all his kicks and movements and I know they aren't normal. I appreciate all the prayers and I know they can help the situation, but to believe that he will be 100% healthy is not the way it is going to go, and it is hard for anyone else to truly care when they are not the ones who will have to deal with it. If you pray and my baby comes out not breathing just like Lua, what loss is there for you? None. You don't have to live the life we will then be having to live. You wont be making the difficult decisions we will have to make. It will be a situation like, "Oh shoot...I was really hoping things would turn out better.." and then you move on. Like everyone did when Lua died... Aww we are really sorry.. but we have our own life to live and we can easily move on, unlike the parents who get to live every single day thinking about it, seeing the missing link in their family. I'm really talking about one specific person who does this to me so maybe this comes off pretty harsh, but I'm just so tired of living like this. The mother who lost her child... the mother who has another child with complications... I don't know. I wish I would have realized that 1 in 4 chances of having a child with the same condition was a lot higher risk than I originally thought. I believed because we had one healthy child it had to be less than that. Oh well, living in a pity party for sure won't fix anything.

My husband brought up something that I haven't thought about doing really... the fact that we have something special that we can share with people that find themselves in similar situations, and that is all the good moments we had with Lua. Those are the stories that should be written down, that should be told, because although we lost her we had almost 7 months with her and she made us so very happy. We were very blessed with every month we had, even if many many many moments of every day were spent being scared and overwhelmed, her face made it all better.

I think one of my favorite days with her was the day Thiago took his mom back to the airport and May spent the night with my parents. It was just me and her all afternoon into the evening until daddy got home. We played on the floor.. that is when I thought about doing the balls on her legs to help her move them with ease. She Soo got a kick out of that. And that was the day I had to sing lollipop to her over and over and over and over. Every time I would sing it to her she would just smile and smile! I don't know why but she just Loved that song!!! If she started getting upset that was the only thing I could do to make her happy. I had to take her all over the house with me since I was the only one home that could keep an eye on her, and it was actually really fun doing that. She didn't need to be suctioned every 2 mins that day, and she was just the giggliest funny little baby, well as long as I kept singing lollipop.
Thinking of these days really help me to try to relax over what happens with our baby boy because I know we will love him so much and he will give us joy just like Lua did, and we will have some great times with him just like her. But sometimes I think it was irresponsible to thin about having another child, especially so soon after losing Lua, knowing what we know we will have to face. Our oldest daughter has come down with a sickness today and just that hurts seeing the little ones sick like that, well we had to watch Lua suffer every time she got suctioned, just breathing was difficult for her because of having to go into the trach to get secretions out. Watching her try to move really really hard but not able to move more than a few inches, was devastating to watch... how could we do this to another baby. That is my daily struggle, only wish some things could be different. 

Some pictures from the day Lua and I had that I mentioned earlier. The top is her reaction to me singing lollipop.. she couldnt smile of course because the phone was up and she has to make sure to stare when the phone is in her face ;)

Little Mr and his adorable little face

parenting after a loss

It is amazing at what all changes in life with different situations. I guess it is obvious that every new experience changes each individual, but I am a little surprised at how parenting changes after a loss. Well, I think the way we parent changes many times as children grow, I think that it comes with different set of challenges after a losing a child.
Let me just get into it...
Wow are the threes, and fours so far! difficult!!! why again do they say terrible twos? threes were insane and now fours are coming off as equally challenging. I know every parent can relate, and if you can't, let me know what you did with your child to make them not have bad threes and fours! But the issues with dealing with their tantrums in this age is the fact that you still want to throw a tantrum about how life has changed. At least this is the case for me. There is so much anxiety already built up that it is hard to deal with the crying and complaining and throwing fits. I have to try very hard to try to stay understanding and calm, because that is what ALLLLLL the "great parenting" articles say to do! Clearly those who write this stuff don't spend 24/7 with children, because they would see how impossible that becomes to stay calm and collective while you have a little person screaming and throwing fits. Anyway... With everything going on and that has gone on, I personally find it hard to not get stressed out. 4k really has not been helping either, now we have new bad habits and fits over having to go to 4k but now she has started this stage of where she is afraid of absolutely everything. The other day we were in the bathroom at a store and she was freaking out that their were monsters in the bathroom. Why can't you just tell them No monsters arent real! and that would be okay and they would get over it! Man it is so hard to remember kids are kids when you are an adult and have been harden by this dark world.
Well, anyway, our 4 year old has not been able to really stay in her room since Lua passed away, I think I have mentioned this before... We have had literally 5 times that she has been able to stay in her room over night in a year! And I don't blame her, especially at first, wow I wouldn't expect her to... I did think after the move that that would help some, but not really. I know some people say they let their kids sleep with them or in their room until they are 6! But the last week or so, what has started to happen is that she isnt sleeping at all... she would come into our room and lay awake for 4 hours or so. I just found out this was happening this week when we caught her doing it (which meant we were staying up for 4 hours during the night!) Sleep in my opinion is very important and I can see it in her when she hasnt rested well, we get more tantrums. So our options are to keep up naps religiously, which is ridiculously hard when she gets home late and then trying to put her to bed at a routine time. We still do it, but it becomes very difficult and sometimes it just doesn't happen. SO, when the time changed, that night we had a very rough night, and decided we were going to attempt to keep her in her room and reassure her that things were okay. That night was the worst night ever, I think we all got maybe 2 hours of sleep. The worst part is, now the next night we couldn't give in or else we would have to start all over again! The next night came and after reading article after article on how to keep kids in bed and get better sleep.. I decided to keep her in her room and it was another very difficult night, but it was a tad better! Then the next night she got up 1 time!!! Which was great! Then last night she slept the entire night! Ahhh! it was great! she woke up pretty early but hey it is a great start!
I do feel for her though, because if she had her sister, and they were sharing a room, this probably wouldn't be that much of a struggle for her... Or we would have caught this awhile ago and found easier or better ways for her to deal with this instead of making two terrible nights out of it. At times it really makes you feel like a failure of a parent. First, we have the ultimate fail... we lost a child.. You see those memes that say something, "all these parents are over here making colored spaghetti and crafts, I had a shower today and kept my kids alive"  Yeah I didn't do that. If this was a game it would be game over for me. But now add the stress of feeling like you are a failure to your surviving child for not knowing how to handle new issues that come up, that is when I feel like parenting after a loss becomes totally different from regular parenting. Insanely stressful. Anyway, I'm very proud of her though, and me a little! That she was able to accomplish staying in bed a whole night, even if tonight isnt a success, we had one night that was and that is a great start! She has a lot going on right now (Ha, that kinda sounds funny.... yeah my 4 year old has a lot going on in her life right now... she's so busy.. ) But no really, a lot of changes for 4 year olds, new emotions, going to school and learning more and more every day, so much to be confused about and understand. Plus she really wants this baby out, and i really want this baby to be healthy for her! I'm sure she is filled with a lot of different emotions that I can't relate to because I'm not 4! I think over all she is doing well, I think we could all be doing better, but at least we are hanging on and that I think we can be grateful for!

We have an ultrasound tomorrow.. so I am preparing myself to be depressed for the next month until our NEXT ultrasound, or actually at this point we probably wont be having an ultrasound next month but in a few weeks. I keep wishing for an ultrasound that would change something, but then again I just need to accept what is is. His movements are off and on, never a constant big amount of movements. I really hate that we had to pass down such a crappy condition to our babies, but I am trying to prepare myself that we may lose another baby at some point. We may have another baby with a trach and gtube, we may have a baby with a lot of weakness, or we may possibly have a healthy baby.. I am trying to prepare for it all and it is a weird position to be in. I understand that May might be our only child we have living. I know that we might be back into the medical world struggling every day to let our child live. Thoughts I never would have guessed I would have to be going through. You never really know where life will take you I suppose.

His room is coming together though. I said we werent going to put the crib up, but daddy decided he was going to anyway, apparently he doesnt want to do it later I guess. :) 

I seriously can't wait to put these on him!!!

 

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.