big 4 months

Since my last post, we have had another doctor appointment, a baby shower, a baby turning 4 months old, and a sick daughter.
Our appointment was with the orthopedic doctor in madison. I was a little on edge for this appointment because our orthopedic doctor we had with Lua was pretty much a jerk to us. I was really hoping this experience would be better this time. And it was! When we were in the hospital with sol, I had talked to the rehab doctor and it sounded like the thought was to do nothing for Sol and keep up with the stretches and therapies. I remember her saying that we had to decide what we wanted for his future, if we really wanted him to be able to put weight on his feet or not, it was something we would have to decide. I guess the thought that since we lost Lua at 7 months, maybe it wouldn't be worth doing too much and just spend the time we have with him and not making him miserable in casts. That was the impression I sort of had, but I could be wrong. Either way it made me nervous for the ortho appointment. The doctor was great! A really excellent orthopedic doctor. The ortho doc we had in the NICU was really good too so I was hoping we would get a doctor equal to him and I think we did, he is really nice and really helpful! What he is thinking is that Sol will need to have a tendon release done on both his feet. He doesn't have club feet, many people in the hospital said he did but this doctor confirmed he does not. He is really tight in his feet though which is why he will need this done to give him more range in his feet. For some reason I find this very exciting, The more range he gets, the more options he has! His feet are very tight and I don't think stretches alone will help with his feet so I think this is the right direction to go. He also talked about his knees and it looks like casting will be the way to go for his knees. We hope anyways! If casting doesn't work then we would have to look at surgery to open some things up. I really want his knees to open more, he has such good movement coming along with his legs I can only imagine how much he can get going once his knees aren't so tight. So we have about 6 months that we can wait before we start this, but looks like it needs to be started before 6 months are up. We figure we would give Sol the summer and once fall comes we will start the process of casting and his tendon release. This gives sol a good few months to keep up on getting stronger before he gets his casts which will weigh him down.
It really surprised me that he was wanting to do all of these things, especially since the rehab doc made it seem like nothing really would be done at this point. I asked him if it was worth it to do all of these things and he said that many times doctors will say this kid wont live to be 3 years old and then they end up being 12 years old and no one has done anything with them! So he says it is always worth it, but if sol is miserable and/or if the casting isn't working, than we just stop. I think that is a great attitude to have and a great way to look at it! I am excited to get the ball rolling. Sol will have another hip ultra sound as well just to see how they are doing, previously they had shallow sockets, but the doc said he feels with time the sockets will fix themselves. Nothing will be done with the hips. Even dislocated hips, people can walk with them, the only time they will mess with the hips is if there is a lot of pain going on, other wise, we leave the hips alone. The ortho doc said Sols hips feel great and move great, he was really happy with how his hips look, which was nice to hear!

We also met with birth to three a couple of weeks ago. We talked about Sol and our goals and now we are going to have another meeting with them tomorrow. I'm not really sure what birth to three can do for us, I got a slight impression they wont be doing much, but we will see tomorrow what happens. We are also looking into getting therapies from somewhere else as well, that is my next big project to work on. Right now we are giving him a lot of bath time so he can really move his legs, he likes it just like Lua did!

We also made a change to Sols feed. We decided to get rid of his over night feed. Last night was the first time we tried it. He did really well in my opinion. His last feed was close to 10:30pm and he woke up at 5:30 hungry!! poor baby, so I gave him his feed right away, but still, 7 hours is pretty good! And it felt kind of great to not have to get up at 2am for an hour getting his feed ready, feeding him, and then going back to sleep for another 3 hours after. Crazy how good it feels to get some good sleep overnight! We will see how he does tonight, hoping it goes well again.

Sol is now 4 months old and hopefully he is only going to get better from here. I think the vent has really been doing him well, giving him the rest he needs to reserve the strength he needs. We will see what happens the next few months, hopefully. May is sick, yet again, first time she is getting sick and being around him all the time. Here will be the big test and hoping Sol doesn't catch what she has. Even though I'm not 100% sure if it is a cold or allergies, but most likely a cold. So hopefully, hopefully, hopefully, Sol does not catch it. If he does, hopefully the cough assist and vent do their job. I have only called the pulmonary doctors every week for the last three weeks, so if I have to I guess I will just keep calling in! 

He was such a happy baby yesterday, a happy baby makes my heart happy!

keeping up the hope

3 weeks we have been home from the hospital. We have gone to Madison once for a doctor appointment and today we took Sol to his family doc. We have a ton more appointments coming up in our future though, so we are keeping busy.
Today has been a little less boring day for us, I like to be bored... But, at midnight, poor sol had too much water in his vent line, it just happens because of the moisture that is needed, and the vent was in a weird position and ended up going into his trach so his oxygen went down and he needed some suctioning. After getting the vent off and draining the water and suctioning he was doing fine. I was scared, still a little, to death that he may get pneumonia from it but he has been looking okay so far today. Except... when he woke up this morning and I was getting him ready and doing our normal routine for the day, after his last set of cough assist I suctioned him like normal and got a little pink tinge blood looking secretions. Scared me a lot because I have never had this with either of my trach babies before. It only happened the one suction, I stopped with the cough assist, we were done anyway, and then called the docs at madison. We are keeping an eye on him and making sure to try to suction as little as possible and watch for any bright red secretions to come out with suctioning. He was scheduled to see his family doctor today so we had another set of eyes and ears looking at him and he checked out all okay so far. I've been letting him rest as much as he wants and not pushing him too hard with anything. I also don't want to suction him and doing too much with him can cause him to need extra suctioning. So he has been having a lazy day today, which is ok! Might not sleep a lot tonight from resting all day, but oh well. I don't want any more pink secretions coming up!

Yesterday was a big outing for Sol. We have been home 3 weeks, like I have mentioned earlier, and I have been doing something with him that I never did with Lua. We are taking car rides alone! If he needs suctioned, I pull over and suction him. He can tolerate waiting for a second where Lua couldn't very much. When she needed suctioned it was now and if you waited we would need to do a trach change! We started our trips just going to Mays school which is only 5 mins away. He has been doing well, some days worse than others, but getting better. Yesterday Thiago's job held a baby shower for Sol. That was so amazing of them to do that!!! But it was a big trip for Sol! Thiago came back to the house and helped me load him into the car but after the shower I came back alone with Sol. His work is further away from May's school, so we had a little bit longer trip, I didn't need to suction him once! I even stopped at May's school and took a little look at her while she was playing outside. Then after getting home and resting for an hour, I loaded him back into the car and went to pick May up at school. We have only been doing one trip a day and yesterday we did two! And he did wonderfully! It is so amazing to have this option to get out of the house just me and him and not feel so trapped. Especially since we still don't have any nurses to help out.

Although it was a little difficult, and a little awkward, the shower was a good time and some of Thiagos co-workers got us a new stroller that can hold all of our equipment! It is a beauty of a stroller and we tried it out today for our doctor appointment. WOW what a difference it makes to have a really handy stroller you can put all our equipment on and even May on it! Any little hack you can find to make life easier! Next, we've decided we really need a van that has more room for us to make getting the stroller and the equipment and Sol in and out of easier. This can help us out a Ton and maybe Sol and I can make it to the grocery store together some day!

Today has been a good day, even with all the scares. I'm so proud of Sol and what a tough little guy he is! He makes me want to keep making goals for all of us and I can see the potential of even reaching these goals. I am a little concerned, though, that when Lua was 4 months this stage was her best time. She was improving the most, smiling the most, gaining the most movement. After 4 months I feel she came to a little standstill. She stopped smiling at 6 months, and talking to her pt she felt that she became to weak to smile, she was still happy just couldnt do it. Sol smiles so much right now, I will break apart if he loses his smile. Their condition isn't suppose to be degenerative, I think because she wasn't getting a break ever with the vent, she had to use everything she had on breathing and growing and that stopped her smiling. The hope is with the vent Sol will continue to get stronger and then in that theory shouldn't lose his smile. But only time will tell.

This week he started moving his head a bit. It was super exciting! He had been nodding but now he is moving it ever so slightly left and right. My big goal for him is to be able to hold his head up someday. I think it may take years, but I really hope he can accomplish this. He is giving me hope of better days to come!

It will be ok

Sol had his first social outing to my grandmas funeral. A little earlier than I was expecting for him, I was hoping we would be able to take him to my sisters baby shower so he could meet the family. My grandma didn't meet him yet and she was hoping to see him at the shower and that was my reasoning for taking him. But, plans changed and we had her funeral instead. I would have gone by myself but in her will that she had made weeks ago she had wanted Thiago to be a paul bearer, so I really wanted Thiago to be there too. Since we don't have a nurse yet we had no one to be able to watch him, there really was no choice for us, we both wanted to go so he had to come with. That is okay though, it would have been nice to have had a practice run, but it went fine. He met a lot of people. We had to camp out in the corner of the church, where we could plug in all of our equipment. People came over by us and took a look at Sol. He was pretty cranky when we got there, so he wasn't into looking at everyone that stopped by. After a nap and a feed, he was doing a lot better.
We had a lot of people come over and talk with us. There was one comment that was made that I believe wasn't said to be hurtful, I don't think the person even thinks what they said was hurtful in any way, but it was extremely hurtful to hear. The commented was, "Sol looks so much healthier than his sister ever did."

He looks healthier than his sister Ever did. 

There are a lot of problems with this statement. I think the first one is they never met Lua in person, only on pictures, so how can you truly know if you have never met Lua?
Second, this is simply something you shouldn't say to a mother who has lost their child. It is like a slap in the face and it hurts, to hear that you think my child was always sick looking??? Thirdly, she didn't die because of only the condition, she died because she got sick and being sick with the condition made her weak. Sol and Lua have the exact same condition. Sol is bigger than Lua, he is also a boy, so yes, he is bigger than Lua, he has more chunk to him I wouldn't say that makes him healthier than Lua. Sol also didn't almost die at birth. He had many people in the room when he was born that were all prepared to help him as soon as possible, and they did. Lua had none of that and also went 70mins before getting intubated. She had to overcome a lot to give us the 7 months she did give us.
I really just wish, as much as I appreciate everyone for their thoughts and prayers, please oh please think before you say something, especially if you don't know much about the situation. I have a lot going on, a lot to deal with, I wish so badly I didn't have to train people in how to respond to us when they talk to us. I know Sol and Lua are/were different, I understand it is easy for people to only understand what they know and there is a lot no one knows about Lua and Sol. So the old statement really holds true, if you have nothing nice to say, say nothing at all... I think this goes for if you don't know what to say, say nothing at all! I appreciate the company more than the unneeded words.

I think one problem is that many people don't understand the condition, I know many people haven't taken the time to try to understand the condition because the comments people make tell me that they have not been paying attention to what I have been saying about Sol and Lua, I know I can't really blame anyone because it is a very unknown condition that many doctors don't know about. So, even though I feel like I have done this before, I need to take the time to try and explain once again what it is that Sol (and Lua) are dealing with. 

Although there are a lot of unknowns of the condition, after Sol was born the geneticists explained it to me like this, Lua's muscle biopsy showed basically no skeletal muscle. At some point in development, I believe by 16 weeks in utero, the skeletal muscle stops developing which caused lack of movement, which causes stiff joints. When joints don't move and become stuck in position this is called arthrogryposis. Arthrogryposis is a symptom of the condition, not his condition. Why his skeletal muscle didn't develop we don't know, but having the lack of muscle can make them tired easily, which is when the trach comes into place. When sol was born he was breathing but after 5 mins or so he became too tired to keep up with the breathing. Having the trach put in makes it easier for him because he doesn't have to work so hard by using his nose or mouth. Being weak also makes it harder for him to swallow which is why the gtube. Being weak also makes it terribly hard on their little bodies when they get a simple cold like Lua had.
Now he obviously has some muscle, so for those wondering will the trach come out, will he walk, will he eat by mouth, and for those who say they pray for total healing... we don't know what he will be able to do, just like we didn't know what Lua would accomplish. He can continue to strengthen the little muscle he has and we will have to wait and see what he can do.
I know so many wish this wouldn't have happened to us, I wish it wouldn't have too. Even more now, though, I wish there wasnt this stigma that everyone needs to be 'normal'. I wish more people knew what it was like to have, what I hear some calling, diffabilities. It is okay for people to be different. It is okay if some people need wheelchairs, if some need gtubes, if some need trachs. Really, it is okay. It doesn't make any one less of a person because of these things. It can make it scarier. It can make it more difficult. Which is why I wish more people understood what it was like. But it is okay and it will be okay.   

bucka.

This morning I woke up to a phone call that was from my mom telling me her mom, my grandma, passed away this morning. She was 81 but this still seemed way too sudden and unexpected. I'm very hurt on how she went, which I still dont understand exactly what happened but the guess is a heart attack, I just worry how much she suffered before it happened.
As I'm writing this I still can't believe she is gone. She has been apart of my life for so long I can't imagine life with out her. Unfortunately these last few months have stopped me from being able to see her. I was hoping my aunts would bring her to the hospital but it just didn't work out. I was anticipating her meeting sol. I know she was excited we had a boy, and I know how much she loved lua and how she enjoyed holding lua, when most people were a little nervous holding her, my grandma always wanted to have her in her arms. I know she would have been so happy to hold sol, I really thought that day would come.

I don't like to make people dying about me because it isnt, but since we live life in first person, it is hard to not make it about ones self after losing someone. But for my grandma, she was in my life a lot, a huge part of my life, I never could image her being gone, so what I have left are all the memories I have with her.

I have been pretty close with my grandma for my whole life. I was 6 weeks old when my grandpa passed away and she spent a lot of time with me to keep her distracted. Many of my memories from when I was younger are about me being with her. I think it was Thursday or Fridays after work she would take me to get ice cream at the big dipper? If I remember it right. I remember spending a lot of evenings at her house where she would make mac and cheese and ice cream sundaes, she liked ice cream.... I remember it was her that showed me you could put pepper on mac and cheese, literally blew my mind. I even gave her a name that she would go by for many years, I still call her by it, I dont know why but I called her Bucka, and soon most everyone else did too. She got a license plate with bucka on it. I love her very much.
When she remarried and moved to Appleton, that felt hard for me because before that she was just two miles away. But during the summers I would go there and spend a week or so with her. One year we got beta fishes, she had a huge aquarium in her house so we put then together. This was the first time we ever saw beta fish and in the morning her fish killed mine!!! She took me back so we could get another. I had that fish for 2 years after that. We kept them separated after that too. Any time we would go shopping we would have to go as early in the morning as possible, that was just her thing. Beat the crowds. I loved visiting her and I loved Appleton, she showed me all around that place and I so badly wanted to go to fox valley tech because I loved that area so much probably because she loved it so much too. I didn't end up going there, but after college I got a job in Waupaca and I ended up living with her for almost a year until Thiago and I got married and moved into our apartment. She helped me do a bunch of wedding stuff and every morning we had breakfast together and we would talk. She would tell me a lot of the same stories, but I did enjoy hearing them. She had a bunch of funny things about her, like we all do. In the winter time, I didn't park in her garage, in the morning it had snowed A LOT, she was out there shoveling off my car.. this 78 year old shoveling off my car... something I was more than capable of doing, and in the end it had snowed too much for me to make it into work anyway. We ended up shoveling out her driving way then instead that morning, and getting subway sandwiches for lunch.
When Lua was born, we had no clue how long she would be in the NICU at Neenah. We didn't know if Lua would pass away at that NICU, we really didn't know she would be going to milwaukee... but my grandma let us all stay with her while we figured things out even if that meant a few weeks of us staying there. Not only did she let us stay with her while we were in Neenah, she also gave us money to pay for our stay at the Ronald house in Milwaukee. 
Last year when we were switching to move over to waupaca, Thiago started working there before we moved, he then too ended up staying with my grandma a few days a week. I think she enjoyed the stay, he fixed a lot of her electronics for her. She told my mom later, You know he is a really smart guy!

I'm glad we have so many memories together. I have so many more that I could share, so many things she showed me and taught me in life. I'm glad for all the days I spent with her. I'm so sad we wont be making any more. She wont get to hold Sol, or any of the new babies that are coming into the family. I know she would love them deeply though.
She really meant a lot to me, I can't say enough how she really has been such a big part of my life and it really will be hard to start this new life with out her. I miss her so much already. I wish so badly I could have seen her recently. This reminds me over and over how you never ever know when it will be someones last day on earth. Whether it be a new born baby, someone in the prime of their life, or a grandparent. You just never know what tomorrow will bring. 

But, my dear sweet baby Lua now has her great grandma to be with her again and love on her once more. I hope so badly they are together right now.

I love you Bucka, give my baby a kiss for me please!

Her first time holding Lua

May's first birthday party

May's second birthday party, one of her cousins. 

The day May was born 

May sharing some food with bucka at her first birthday

1 week home

We have been home 1 week and some days now. The first week has been full of ups and downs, settling in and adjusting. I think Sol wasn't sure what to think the first few days we were home. I know he is just a baby, but I could tell he was a bit odd these first few days. After awhile he really started to settle in. Flashing smiles left and right, being more active with his leggies, getting comfortable in this new routine. He has been looking pretty happy this week with his occasional baby moments of total sadness that can be calmed down with being held. He is looking good from his tiny touch of a cold that he had, his secretions are a lot less and thinner now so I think he really did have a touch of a bug, but he recovered faster than the rest of us, thankfully.

The other day he took a 4 hour nap almost right before bedtime. He has done this in the NICU before but would still go to bed at 8pm... he was not tired at his normal bedtime this time around but he still did end up falling asleep a little after 8, except he was awake at 5am. Thanks to the NICU he is pretty use to being awake and just chilling out, so thankfully he was okay with being awake by himself looking around his room until he fell back to sleep later in the morning. It was nice of him to let us sleep and not be fussy when he woke up. Other wise he is pretty good with his routine.

It has been nice to be home! Very nice! And it has also been a big challenge as well. With any new baby there is a lot of work, and we were use to having nurses 24/7. There is an adjustment period that needs to take place here. We are trying to get nursing, but every time we have something set up with a nurse, they bail on us. But truthfully, Sol is a really good baby. He takes good naps, he is content looking at himself in mirrors and kicking his legs, he lets me get a lot of things done. I only wish that we could go places by ourselves, if i could drive with him alone, then we would be all set. A work in progress.

We are still working on a lot of things with him. We are doing all his stretches, doing empty breast, and working on the bottle. He took about a good 3ml the other day, he was really downing his bottle. It is a tiny amount, but his swallow doesnt work like mine or yours. He needs to do many swallows to get a little bit down, and then he gets tired quicker. He is doing great though, every time I give him the bottle to drink he clears the milk that goes into his mouth. Once he is taking, i think 5ml or so, he can have the video swallow to see what is all going on in there.

He has also been working a lot with tummy time. He spends too much time on his back, neck, head, so he really needs to do his tummy time. We started off rough, but we have been doing it every day since we have gotten home, and today he did it twice and handled it well both times. We are keeping busy busy!