a riddle wrapped in a mystery

Today is a little blue feeling kind of day. Probably most of my posts are depressing though, I feel that it is important to share, because these must be the feelings of anyone who goes through any type of grief. The roller coaster ride. The never ending, roller coaster ride.
I am getting very anxious for the birth of our son. I know it will be nothing like I have already experienced, although he will be similar to Lua, hopefully we will be in a controlled environment and it won't be so traumatic for him as it was for Lua. I'm still very nervous of what the outcome will be, will we hear that cry that every parent longs to hear when their child is born? Or will it be silent in that room when he is born?
When Lua was born and we had a thousand and more questions going through our brains, I have one memory from that time that keeps popping up constantly lately. It was the time that I felt the most scared and yet hopeful at the same time. That was when we just arrived to milwaukee childrens hospital. Hah, me and my husband are so cute, we talked the whole drive on how we will probably be in the NICU a month and how will we ever manage that month, but hopefully we could condense it down to just a couple weeks instead (3 months later....). Anyway, we were sitting in the waiting room right out side the NICU, Lua hadn't arrived yet and once she was there all the specialist would come in to see her and analyze her first before they brought us in. So we sat in that very blue waiting room. Ugh, that waiting room is so very blue. I was so nervous, it was taking forever, I couldn't imagine what was going on that was taking them so long to come get us, I didn't like not being able to just go to her, she was my baby after all and they were keeping us apart so they could 'analyze her' away from us. Bothered me so much. But my husband was on his phone, after we had a name for her contractures, arthrogryposis, he was online finding a support group and posting questions. He had just gotten a response from someone on the question he asked. I remember he told me to read it, as we sat there in that very blue, uncomfortable, waiting room. Everyone on the AMC support group website were very uplifting and supportive. A few others had responded about how their babies were born with very little movement too but once they got bigger and the contractures were not as tight, the kiddos started moving more.
I write this now and it all makes sense... but when I was in that room waiting for Lua reading these things I couldn't understand any of it! I was so overwhelmed, I couldn't understand the simplest of words, I couldn't understand what anyone was saying. I had no clue what was going on. I think that is why this memory keeps showing up, the overwhelming amount of uncertainty that I had with Lua and what would happen, I think it is the same now. I have an overwhelming amount of uncertainty of what will happen with our baby. And I still cannot understand why it happened again, so easily.
I also think that memory, I can see me sitting in that waiting room as clear as day right now! but that memory was the calm before the storm. We left Neenah childrens hospital believing we went to Milwaukee to help her and her contractures. Once the contractures were corrected she would be fine and start moving. We had no clue that the contractures were just a symptom of something much worse. I didn't know muscle weakness was the cause of her joints stuck into position. When we were finally able to go in and see our baby, we were surrounded by doctors. All I wanted to do was hold my baby, but they all wanted to talk.

"Three things have to happen for you to take her home...." one doctor said and he listed what those were.

"Your baby is suffering from a disease that will only make her worse...." the geneticist said.

"Look how weak she is...."

I shut down so fast, I wanted to cry so badly, their words were so not what I was expecting. I stayed quiet and wished they would all shut up. But not my husband, he asked question after question, I wanted to hit him so badly! They didn't care! Didn't you hear them? They are telling us our baby is going to die, they don't care what you ask them.... I was really bitter, but I'm glad he was able to ask question after question.
He asked them... "But she is improving every day."

"No she is only improving from the birth trauma, she will never recover from her disease."
"We have a guess as to what it is, I will have someone come in and give you paper work on them"

I didn't even know she had a disease! No one told us this before this moment right now!
I left the room almost bursting in tears, we had to go check in at the ronald house, but before we left our nurse then asked me, have you held her yet? I could only shake my head no. She tells me, well we will make that happen when you come back... and then I lost it and started sobbing as we walked to our car. Thiago asked me why I was so upset. Really?! He didn't even catch that they were telling us she was going to die! I can't even know what he remembers from this moment, or what he understood from what the doctors said, or what he was thinking... all I could do was die inside.

I so very badly do not want to have another memory like this. I don't want to see doctor after doctor tell us this crap. Things are different now that they believe they know the cause, they know nothing of this disease so they cannot tell us anything of what to expect, which they found out they couldn't tell us about Lua either. She was suppose to NEVER be off the vent. They thought she was brain dead, they never thought she would move a single body part. They eventually just said, well we don't know. Yeah they didn't and they still don't. It is insanely hard to have a child with a disease that people know nothing about. I feel like they don't want to help, and I don't know where or how we will get help for our little boy if there is no one out there that has any idea on his condition.

Anyway, feeling like I got off track. Main point, I'm becoming very nervous and anxious and scared. I'm feeling like the time is getting closer and closer and while I am really anxious to know how strong he will be, what he will look like, who he will be, I am terrified that him being out in the world will slowly start to take him away from us.

I love this line from the book Call the midwife... I could read this over and over, I still don't understand it yet understand it at the same time. 

Strength & Stability

I am really not looking forward to this upcoming week... this week I will have a doctor appointment every day except for monday. I started doing some aquatic physical therapy, I had to cancel my second one last week though, and I am starting to think I need to cancel this weeks too. It is just so many days of going to the hospital and I'm not really a big fan :-/
I switched to my new OB last week, who I will see again this week. We learned very little from that appointment. He actually started off by saying to me, "Well, you have a very complicated background...." why thank you........................ -_-  
He has delivered a ton of babies and said he hasn't once had a case like ours, but promises it will be uneventful. His part maybe. We are still debating on how we want to get little Mr. out of there. Do we go c-section or not? Do they take baby earlier than 39 weeks? And if the heart still stays in issue do we just go to Madison. The ob asked, what does your specialist dr. recommend? My specialist dr. recommends whatever my ob thinks we should do, but my ob disagrees, no no, we need to know the specialist opinion. Back and forth back and forth, I feel like a ping pong ball most of the time here! I think my specialist dr. leans a little more towards doing a natural birth, while my ob leans more towards doing a csection. I'm thinking more of a natural birth if possible, I'm just worried if it is possible for baby to get stuck and then we run into big problems or something. I am hoping that the baby will make the decision for us though. If labor starts naturally and things progress than great! But he will Not stay head down! Every other appointment he is head up, head down, head up, head down, maybe if he stays head up then we will have our answer as to what we are going to do. But this week we have an ob appointment, an appointment with my specialist, and an MRI appointment, Between them all I would hope we would hope we get a better idea of what we will do. It is a little hilarious, few days ago my mom and I ran into one of my sisters old friends and she asked when I was due, "Oh you have a lot of time yet!" Huh????? 6 weeks is a long time for you? Oh that's right you aren't the one getting monitored every single week. Besides Lua came at 38 weeks, so there is potentially less time than 6 weeks left.
I'm thinking I need to make a shirt that I can wear every where that says, If you can't say anything constructive, keep your mouth shut. I don't want your opinion. (maybe that part could go on the back?)

Holidays, oh holidays... I think we overcompensated for our troubles this year during black friday or maybe I should say thursday? Really is there anything better than retail therapy though? Especially when you are being tricked into thinking you are getting things for a way better price than normal.. I mean this works every time on me! But, I found a gold mine this black friday that I am in love with! 

http://mylokai.com/shop/lokai-bracelet-clear.html

I saw these at one of our local stores during the summer, I thought they looked cool but I didn't really read into them or anything, just walked by it. But I have been seeing someone on pinterest talk about these a lot and how they have more meaning behind them, yadda yadda, so I have been meaning to go back to that store and look at them but I just have not had time yet. So while black friday shopping I found some! They arent the authentic kind though but the meaning is still the same, the ones I found were actually the link below, but some day I plan on getting one of the lokai ones. 

http://www.balanceyourlifebracelet.com/shop/

If you haven't seen them before, they are pretty cool and I found them to be so very fitting for me! I use to be really into wearing those rubber bracelets as a teenager, and that had no meaning at all, so when I read about them I knew I had to get one!

This is the one I got. I found that it was very fitting for me because it is something I lack. A reminder of strength and stability. I have caught myself glancing down at the bracelet and it continues to remind me of something more. All we have been through, even though all I have felt is weak, there has to be strength in there somewhere or else I wouldn't be at the spot that I am. I really hate when people tell me that I am strong. You don't know, and just because on the outside I seem like I have it all together, I very much so don't. But, it is okay if I tell myself to be strong, and along with this to have stability, I don't think you can get very far if you aren't stable in the current situation you are in. So if you haven't gathered, I love these! I find it so funny how such a little thing can make you feel so many different emotions and feelings. I love it!
My husband came around while I was looking at these and I convinced him to get one too! 

I love his as well! It is so so fitting for him too! But I believe this is a hit or miss kind of thing, you either really get it and love it or it is like, eh. load of crap.... which I think is totally fine. Whatever works for you, and after so long being down in the ground, any little thing that helps truly feels amazing! I can see myself wearing this bracelet while we are hoping to bring this little baby into the world and hoping this gives a reminder to what the goal is. No matter what the outcome will be, we need to stay grounded, strong and stable, using our inner energy, and get through the next step of life. Corny, but it will do for now!

Hopes. Wishes. and Rainbows

The day we went to the cardiologist we saw this rainbow over the highway. When you have a baby after a loss, they call that next baby a rainbow baby... so we were thinking maybe we would get to the appointment and he would be moving a ton and everything we have gone through was just a fluke and he was really healthy and fine! But even though that didn't really happen, his heart at least looked fine and all the tests that have come back so far have been looking good, so the doctors have decided that we will just keep monitoring it for now but no other interventions are needed at this time. Which is good! I have been monitoring his heart rate at home as well and it is usually 130s to 140s so I haven't caught him acting up yet, so maybe the heart thing was just a fluke and that is what the rainbow was for. That would still be wonderful.

Time is really going by now, we are already at 33 weeks, Lua came at 38 weeks so we could potentially have only 5 weeks left! It is very scary. I have no idea what to expect. I hope sooooo badly that this baby will come out screaming and crying! That would be the best thing in the world! I would love if he came out kicking and hitting! But I am not sure if that will happen. But it is what it is now and I wish there was more I could do, but it is all up to how he developed now. The raw truth is I have been working to prepare myself for potentially losing another baby and/or having another baby with many medical needs. I have left room in his room for medical supplies, although I will have to find more room depending on what all he needs, but I feel like this is the best thing for me to do. I am hoping he comes out 100% normal! I would even love it if he came out breathing and had limited movement that we can work on. If the worst is to happen, though, although I could never be fully prepared, at least I will have been some what prepared and we can go from there. I hope that I will be able to rise up to the challenge again and be stronger than I was last time and do better than I did for Lua. We will see.

I keep thinking about what my husband told me in his email, how much we really have, and that helps a lot. Even if he is as bad as Lua, we get another baby to love! And that is the best part. I can't wait to see his cute little face and to have a BOY! Never got to experience this before and it has become very exciting. I didn't think I would get to the point of being excited to have a boy until he was here because I am so use to girls, but seeing him so much in ultra sounds it is like we know him so well already. I really can't wait to see him... and I am hoping so very badly that he will surprise us ALL, in a good way of course!

ultrasounds and more ultrasounds

We are at every 2 weeks for ultrasounds now. Yesterday we got to have ultrasounds twice in one day... Boy was that a very long day!
I have been waiting to update until all my thoughts have been gathered together a little better, because yesterday  I wouldn't have been able to say anything nice about anything!
So yesterday was our 32 week ultrasound, and overall again there were no changes in movement really. He did go head down from the last ultrasound which was head up, (then by our next ultrasound appointment he was back to being head up). So he is rolling around in their at least, but what really disappointed me was that the tech spent a good few mins looking at his hands and he just did nothing with them. :( I'm so bummed. If we could have seen him do something with them, that would have given me a lot of hope! But he didn't move them at all. And I am feeling more kicks compared to Lua so I am not sure where those are coming from if his hands aren't moving. I already thought his feet werent moving and had hopes that his hands were doing the punching at least, but at least as of yesterday he was not moving them at all. He did change the position of his hands though, so maybe his muscle loss is more of the distal muscles, I don't know, I don't think there is a good place for their to be muscle weakness...
But he decided to get a little excited during the ultrasound, shooting his heart rate up to the 200s for a little while. Then staying between 170s -180s and then going down to normal. That was a cause for alarm, because when you are already high risk, any little tick is a red flag. The concern was for possible tachycardia going on. We were set up for an appointment in the childrens hospital in neenah to talk to the cardiologist there. We were to have another ultrasound done on his heart, and blood flow I guess, later that day. At that appointment they monitored his heart rate for about 45 mins and it never had any episode or get higher than 150s. He was breech though by the time we got to the ultrasound, little flipper! What they did find, though, was some fluid under his heart, which could cause the tachycardia, but she said it is possible for baby to catch a virus if I have currently been sick and he could be getting over the virus himself. I had a pretty nasty cold about 3 weeks ago before passing it to the rest of the family, so hopefully at the next ultrasound the fluid is gone and that is all that it was! With the diagnosis Lua had, there really are no signs of any heart issues in any of her conditions, but no one knows a lot about her condition so I suppose it is better to be safe and check it out. When she passed the ER doctor did say she passed away from heart failure... So I don't think this was a waste of time looking into, but I am SO tired of being at hospitals all the time. I'm not even kidding that I have been to the hospital 4 days this week already! From having severe back pain, I have had to start some physical therapy, and with all the ultrasounds, and normal OB appointments, I am Always there! And it is getting really old, very fast! But I feel grateful to have met this cardiologist doctor, she is in touch with a lot of people in Madison where we are planning on going if he is as bad as Lua was, so for me it is never a waste to make more contacts. I am just physically and emotionally exhausted!
Well, I came home with a fetal doppler to be monitoring his heart rate, and today I had to go to the hospital for a non stress test for an hour to watch his heart rate. The appointment today went really well. His heart rate looked pretty good, it never went over 160s, and he had a bunch of good acceleration, which oddly enough, is monitoring movement. So he moves when he has a monitor on him, but doesn't flinch when he is having an ultrasound. Typical man. The specialist doctor did mention that the heart rate going up and then going back down can be a sign of good connection between the brain and heart, which if this is all it was, that would be great! A good heart would be wonderful, one less thing to worry about! We are hoping that this will be the end of that journey, he has looked good so far, hopefully next appointment the fluid will be gone, and we will be ready, set go! Oh and hopefully he will decide to stay head down at some point here! The first ultrasound tech and the specialist doctor both mentioned (at different times) that he has a head full of hair! And that it looks wavy! Then at the other ultrasound we got to see his face and his little big forehead! He definitely takes after both his sisters!
At the start of this post, I mentioned how I needed to wait to update until I could say something good... Luckily todays scan went will with no concerns because I would probably still not be able to say anything great. I know that all of these things sound really good and what could be the reason I would be upset with these things? Well it is getting really annoying that problem after problem after problem keeps coming up. If he were to have heart issues on top of everything else that is already going on, I just don't think I would be able to handle anything anymore. I am already at the breaking point, just a tiny pin drop can tip me over to 100% losing it. No matter how hard I try to prepare myself for a baby that I at least hope could become a child with disabilities, it is impossible to not fantasize and imagine I will be having a perfect, healthy, normal baby like everybody else that is popping out babies. Then we have ultrasounds and I see the shape of his hands, his fingers not moving, the contracted fingers stuck in that position and I remember and know, oh yeah, I won't be getting that healthy little baby. The only thing I can wish for now is that he will be able to breathe on his own and we deal with the lack of movement. I wish so so so so badly I could rip this gene out of me so I wouldn't pass down such a terrible disease to my babies. It is very unfair to them. This thought process takes me down a very dark road of wishing I was living a different life sometimes. But today I got an email from my husband, reminding me how lucky we really are. We have one healthy daughter, and we had the most amazing, strong, baby who gave us some wonderful memories and I of course would never regret having her, she was so very meant for me. The same for our son, we will have a lot of complications and a very hard time, but we will get an amazing son out of it all. It can be hard to not compare your life to others, especially when you have facebook and no one has a problem with plastering how perfect their lives are all over the place. How easy it is for some people to have healthy baby after healthy baby, but it really is useless to look at other peoples lives and compare. I'm going to try to do that less, it is hard to not be jealous, but then I think that becomes a good time to get rid of facebook! 

All I want for Christmas...

Is a healthy baby boy.
Everyone is all over here getting pregnant left and right or delivering their babies, and I can't help but be slightly jealous that they will all get to go home with their perfect bundle of joys, while we will be here hoping we can go home with out a trach, and with a baby in general.
I hate reading those updates you get from baby websites about what your baby should be doing at each week. The last few weeks they say movement should be getting stronger and stronger and baby will be more and more active. I can still go a good amount of time before I feel anything from him. Then sometimes I get that little glimmer of hope of, Wow that was a really big kick! But one big kick a day won't get us a healthy baby. I wish I could prepare myself for everything that is about to come. This pregnancy has really showed me, though, that I am glad I didn't know ahead of time anything was wrong with Lua, because this is just torture, wondering every day how bad he is doing in there, how will he be born, will he be able to breathe, will he be moving at all?
I want to be okay with the fact that May could potentially be our only child. And some days I think that I am okay with it, but I know once I see our baby, and if he doesn't survive, I won't be okay with it. I tried to tell myself the same thing about Lua some times. That if something happened, I had to be okay with it and accept it. I lied to myself thinking I could ever be okay with it... you can't be okay with letting your child go, not at any age, not under any circumstances.

Today, I think will be the last appointment I will have with my normal ob doctor, in a few weeks I see the ob from the hospital with the NICU attached where I will hopefully be able to deliver. But I am glad I am having an appointment today because the last few days have been pretty miserable... I'm hoping nothing else is going on... but if there is I hope we can figure out what it is. Maybe it is all a third pregnancy kind of thing??? I am should be going for a fetal MRI to make sure baby doesnt have a blockage in his air way, but that didn't get scheduled yet, and I'm a little nervous that baby boy might want to make his appearance sooner rather than later. I do hope he can stay in there until January, but all this pain everywhere makes me question what is going on in there?!!

On other news...
Our daughter has been doing pretty good at staying in her room over night! After a little hiccup from her getting a pretty nasty cold, she has bounced back into the routine and has been doing really well. Last night she even slept 10 hours straight! I don't know if she has done that in weeks!
We also had our first parent teacher conference! Ugh it is kind of sad! My only healthy baby is growing waaay to fast and we will never get these typical firsts again :(
But is it just me or is there a lot more pressure on kids to be meeting academic milestones a lot sooner now? Oh well... we have work to do on getting her more comfortable with school, but I honestly don't blame her. That is probably the problem ;) ha.

A year ago we got our rainbow doggie... Mr. Mallo. Man he is a handful and such a little devil! But he has for sure been interesting and a great distraction for all of us! And even though he is the littlest monster ever, he has a pretty good demeanor and I'm glad he doesn't poop or pee inside our house, sleeps well, comes when he is called. He made me so proud this morning, I opened the door and watched him do his stuff and he came right back to the door! I didn't even have to step outside to tie him up! Which is really nice since it is insanely cold and windy outside! If something happens to our baby, I think we will just become official crazy dog people.

I think he wanted a walk.... 

 

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!!!