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!!!

 

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!