just living

This morning when I woke up I was thinking how badly I wish Sol could be hitting milestones every other baby his age are hitting. It hurts a lot reading those updates on how old your child is and what they should be doing and knowing your baby is far behind on those things. For a moment I thought to myself, man I wish he was normal.
This seems obvious right? Everyone wishes the same thing, that he was a normal baby, of course I wished he didn't have this medical condition as I have said many times, but I don't think I ever stopped and thought those exact words, I wish he was 'normal'. I almost instantly regretted it. No one is 100% normal, even those who think they are, what is normal right? We still work towards milestones every day, we are just very far behind. Although, almost as soon as I thought that we had an incident that made me realize I don't wish he was normal, what I wish is that i didn't have to worry about him passing away at any second. Being normal makes it seem a lot less likely that a child will pass away even if that isn't a promise, it is easier. Sol having the condition he has means he wont live as long as those normal people. I know I've said this before but just reminding.
Sol had a rough night, something has been bothering him so he slept in this morning for a change. After he woke up I brought him to the living room to start our day. Summer school is going on this week so Sol and I get a little cuddle time in the mornings before the nurse gets in and im off getting things done. But Sol had different plans this morning. As I was changing his diaper he started crying really hard for a few seconds, after that his heart rate dropped to 90, which isn't very normal of him, but his lips turned a blue color. He recovered in seconds but I instantly worried if he was going to stay recovered or go down hill from this. I called my husband to come home and Sol seemed to be doing better, I did end up bagging him just to see if that would help the color come back along with suctioning and doing some coughs on him. He was fine until Thiago got home and pretty shortly after he walked in the door he did another little episode, a hard cry, dip in heart rate, blueish lips. Seconds he recovered again but what was going on?! We called the doctors and also had a visit already scheduled with his family doctor anyway. After telling madison what happened they seemed to believe he had a plug in his trach and wanted us to change out the trach and what not to see if that helped. I'm really doubtful it was a plug in the trach, it seems like something else was going on. Regardless, we made the changes they recommended, but he didn't have any more episodes the rest of today so far, even before any changes were made. He has still been throwing up, so his family doctor wonders if he was retching during this episode and that is what caused everything. Who knows, but we ended up doing an xray just to rule out lung issues, and the xray came back looking good.
As quickly as I wished for normal, I wish for just living. I really don't like having days like today to remind me to just be happy with what we have because I know any day things could change and most likely it won't be for the better.  

stomach flu

Sol has been sick with a stomach bug for a week today... Uhhh I wish so badly he would be over this now. We can't move him too much because he throws up easily right now. The poor guy gets stuck laying around a lot now because of how quickly he throws up. A week. A full week he has been throwing up and not able to be moved too much, it is hard to watch. We can't work on anything and we can hardly hold him, so very very hard. He went on a continuous feed at the hospital and we have continued doing that. At some points he acts like he is feeling so good and then just as quickly, he gets so sick. I really thought he would be doing better by now but it really hasn't happened yet. Everyone keeps saying it will just take him long because of his condition and being a baby, it is just hard to see him be sick for so long.
Sometimes I can't believe there are people out there that dont have to worry about slight colds or stomach bugs could take their childs life. I don't even remember how it was to live like that knowing the smallest thing wouldn't take my child from me. Or the fact that most parents go about their days never thinking their baby wont live to see age 5, 10, or 20... It literally blows my mind. I know we have that with may, but then again knowing what we know now and losing lua, I know we have no guarantees that any of us will make it to tomorrow, but some people live in such innocent bliss that nothing bad could ever happen to their child or themselves. I wish I had that feeling. I wish I didn't have to fear that I may have to plan another funeral for my child for the second time, and in reality I know someday I will. Dwelling on that fact can drive me crazy with anxiety and depression so I try not to think about it, but when he gets sick it is hard for me to ignore. I know he is a strong little mister, but I also know how weak he can be because of his condition so I know how fast things could turn on us. So many people at the hospital asked us how we were doing at home and I never went onto detail, we are doing so that's good enough. I'd hate to say good and tomorrow have him stop breathing, so for everyone's sake I just tell people we are doing. I want to be doing great. I want to be able to say that. I want to be able to watch sol try to crawl and babble so bad. I wish I could just inject him with all of my muscle, he wouldn't even need all of it just enough to hold his head , walk and breathe well enough. It gets so frustrating, as most of you can tell. And sick days take a toll on me. It becomes many days of being worried and lack of sleep and still trying to keep things normal for may. So much. I follow some babies who have progressive diseases so the parents are aware each day is a gift, and it really blows my mind how so few parents actually live like this. I just can't get over it sometimes. Oh well.
It was good to see the hospital crew again, we were able to get sols stroller and order a neck collar for him to help him hold his head up on his own. That could take just a few weeks to get, as long as sol has stopped throwing up by then... I dont know we will see I suppose.

most parents wouldn't get excited about a neck collar so their child could finally hold their head up on their own.....oh the joys.

5 year old

Today May is 5 years old!!! It is unbelievable how fast time goes and that she can already be 5!! It is super depressing.. Do all parents feel like this as their kids age? I guess another reason to not have anymore kids! Having her was a completely different experience than lua and sol, obviously. She made me a mom and every day she is still teaching me how to be a mom. I can't even express how badly I wish i could have had the same experiences with lua and sol that I did with may. We had challenges but watching this little baby grow and learn the way she has, has been amazing. I miss her baby days soooooo much. I know I wrote before about how seeing other babies and families with babies bum me out, but really looking back at Mays baby pictures and videos, make me the most depressed. How much fun we had with May as a baby was a great selling point in having another child even though we were really on the fence about it. I miss those days. But have to look forward and not at the past I suppose and hope for another amazing 5+ years with her.
We are currently still in the hospital with sol and his stomach bug and may is at the grandparents house. I had planned to take her to the mall and do play and shopping today, but plans change :( I'm really sad I'm not with her right now to give her a great day, but she will probably have more fun with grandma anyway. We have a party planned on Saturday for miss may, and I'm hoping so badly we will still be able to do it. I hope we will be able to get out of here today, but who knows what will happen.
happy birthday may! My first baby! I love you my little 5 year old!

speaking valve

Friday we had some appointments in Madison. We were suppose to see urology and pulmonary. We only made it to our pulmonary one unfortunately, although I'm not sad about because that is the more important one. Sol needed to just be checked over to see how growth and everything is going for him. They made no changes at all. No feed changes, no equipment changes, everything is going overall well for him so we had no need to change anything. Yay! Also he is doing well overall so we dont need to do another pulmonary appointment until 2 months from now instead of every month. Yay!

but the big thing at his appointment was having a speech therapist come take a look at him and decide if he would he able to try the speaking valve. She didn't even really look at him she just brought the valve and they decided to just try it. I was terrrrrified. They told us lua was always way to weak to try it, I doubt that now, she seemed to be a little stronger breather than sol is so now I'm guessing she would have been able to try the valve as well. Anyway, we also had a different speech therapist look ag him and she didn't feel like he would be able to do the valve yet. So I was nervous!! The way the valve works is you breathe the air in normally but it doesn't allow air to come out the trach, it pushes it up through the mouth. It is more work to do this.
But they felt it was fine to try it. He was on his pulse ox to watch his oxygen and heart rate and had him in his best position for him to push out saliva. He cant have a ton of saliva in his throat other wise he can't move the air out of his mouth easily. They popped it on and he started working hard and trying to figure out how to exhale, but in just a few seconds he figured it out and started talking! He looooved it! He smiled and looked so proud that he could hear his own voice. I kept asking if we should take it off, because he did have to breathe differently and a little harder, but they said no just leave him because he was sitting at 100% for his oxygen and normal heart rate. So we let him go for awhile and he babbled away!
since he passed the test we were able to take the valve home with us and we are allowed to try it 2x a day for 5 mins. Then next week if we have had no issues we can do 3x a day and keep moving up as long as he is tolerating. It is amazing and so exciting!
we used it last night when we got home and he did amazing again! It blows me away. This morning we did it and he wasn't 100% happy with it. It took him a little longer to figure it out but at the end of 5mins he wasn't very happy... If he is getting sleepy this valve is too hard for him I think. So we will keep working on it and see where we go from here. It is extremely exciting. He has less secretions while on it because he is pushing the saliva out instead of down so we dont end up suctioning him a lot when he is using it. We feel almost like we are hitting normal baby life! Like there is such a thing! But you can't imagine how great it is to hear your baby's voice! We even heard a giggle last night. We hear him when he is on the vent but this is him doing it all on his own. Just amazing. You really thank technology for how far we have come to give us a device like this that a baby can use so baby and parents can hear them. Just amazing!

one persons thunderstorm is another persons rainbow.

If you don't follow articles on the mighty, I highly recommend it. They typically have something that covers for everyone, because face it, we have all been through something. Today I read an article about suicidal thoughts, not wanting to die but just not wanting to exist, and I thought it was a really good read. Here is the link. 

http://themighty.com/2016/07/suicidal-thoughts-but-not-suicidal/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=MENTALHEALTH

But at the end, I read the comments from other people, like I always do, and I read someone who said they feel exactly like this. They have two young kids and some days they just don't want to disappear and go to an island and be alone. It is funny, I know what the chick means and how she feels. I remember feeling overwhelmed some days with just May! It is funny now, though, because that persons nightmare is my dream! Their thunderstorm is my rainbow. What I wouldn't give to have two young perfectly healthy kids that are overwhelming me. I only know that this would be amazing because I have like one of the worst options in the world. But I feel like this statement holds true.. my thunderstorm is probably someone else's rainbow. I don't know who, but it could be. Maybe someone who can't get pregnant at all would love to have a medically fragile child after losing one child. I don't know... 

Sol had his first sleep over at grandma and grandpa's house last weekend. It was my 10 year high school reunion - old - and then my great uncles 90th birthday party the next day, so we figured it would be easier to go for over night. Sol did well, but we had some heater problems with his vent. He didn't seem to care though. He did okay at the birthday party, he needed a little more suctioning than I would have liked but... BUT! He got his first tooth over the weekend!!! So the suctioning was understandable. He cut the other tooth by tuesday, so the kid has been busy getting these teeth out! He now has two bottom teeth, and it seems he is working hard to get the top teeth out as well. He has been so very cranky ever since the second tooth popped out. We will see what the weekend holds for teething.

We had a few therapy appointments this week, we tried to go to speech therapy twice but we just went on the wrong day.. oops. I am currently not a fan of our out patient speech therapist, nothing compares to what we were getting in the hospital, but it is seeming like yet again we are getting therapist who feel like since there is so much work that needs to be done with him that maaaayyybe it is just too much to do. We were asked what our goals were and if we were making sure to be doing things for his quality of life vs our quality of life, because you know, he doesn't know that he is being tube fed. One that is a lie he does know it because he loves when you put food in his mouth, and second of course everything we do is to make life better for him. I was really upset that she said this because to me it sounded like "im really lazy and I don't want to work with someone that i dont think ill get results from"
I dislike this so much. But we will see what happens, either we move forward or he goes backwards and then we will just quit.

Sol goes for some more appointments the end of this month and then we will be setting up a time to start his casting. Busy end to this month, and I think August will be pretty busy as well!    

the mommy hood.

Mommy hood. Oh mommy hood. There are so many things that make this difficult, healthy kid or not. From my experience one of the most difficult things that make being a mom so difficult is, other moms. As much as I believe in having mommy friends for support, they can also make it very hard. Everyone does things differently and there are some people out there that know their way is the best and only way to do things. We know that isn't true, but I don't know what it is that makes mothers feel the need to out do each other. Be "better" than the other person. That may be... you think formula is better than breastmilk, cloth diapers vs disposable, vaccines vs no vaccines... I don't need to go on, those of us in the mommy hood know what the hot topics are and we all have our opinions. I've had my opinions too, and although I know I've had my share of judgmental moments, I would like to think I have tried to do my best to not force my opinions down someones throat and make them feel like they are less than me because they don't do it the way I do. This is something that has become painful to me after having Lua and Sol...

I don't know why as parents we find the need to try to out do each other. I think because having kids it becomes your next chance, if they do great than that reflects on how well you did as a parent, so we start making competitions. I felt this pressure a lot with May, everyone who had a baby May's age, it seemed like a constant battle.. Well my kid started crawling at 5 months! My kid was rolling over by 2 weeks! My kid was potty trained by 12 months! Or the one I heard the most, My baby started walking at 7! no 6! Months!! (a stranger actually told me that one....yeah..) Maybe it is more of a first parent type thing, or I really wouldn't know because things have been so different for me compared to most parents with second and third child. I just don't know why we do it. A healthy kid will eventually crawl, walk, talk, get out of diapers.. why are we in such a rush to make them grow up?

Regardless, it has come to my attention that sometimes I am out of line for blocking people on facebook (i know this because people have been telling me this and asking why they get deleted, very distant relatives i have never met have come up to me and asked why I won't add them on facebook... uhhm..). I don't think I really need to explain myself, but then I think, maybe just maybe some day someone else will find themselves in my situation and think, 'man if only someone would have written it out for me that I could explain to people how I feel.'
Then this will be well worth it, although it is a long shot because if someone finds themselves in my situation they probably won't care at all to make it a point to explain anything to anyone else, but put all their attention on making it through each day! But here I am wanting to explain myself anyway.

So, to my mommy friends support group, 

Please do not take offense if I have deleted or blocked you from facebook, I know we have heard the term it isn't you it is me, but in this case it really is. I take the time now to be a little more selfish than maybe I should be and that is why you may find that I can't be friends with you right now. I have had a hard time dealing with my grief, and after I lost Lua I actually left a mommy support group that I was on for many months so that my negativity and only wanting to post depressing posts wouldn't affect all those in the group. One day I had found that someone re-added me to the group and since I was recently pregnant with Sol I decided to stay, but constantly seeing many others having healthy pregnancy after healthy pregnancy made it really difficult for me to stay happy and all I wanted to do was say things that I knew I would regret, and sometimes I did it anyway. So for me to be able to stay in the group and not feel like wanting to put a knife through my eye, I had to eliminate the things that caused me the most pain. Unfortunately, sometimes that meant people who were/are currently pregnant. It is so hard for me to see healthy baby after healthy baby and I try to be so happy for everyone as much as I can, but sometimes it just wears me out, wears me down. I'm a very broken person at the time-being and I hope one day these things will be easier for me to handle. I know some are thinking just leave the group, well I tried once and besides I do have one healthy child and sometimes I have questions for the group about that. You are also probably thinking, just turn off the notifications for the page, I have done that. Turn off notifications of the people you don't want to see so much of, I have done that and things still show up. So I have tried other things, and sometimes I get to curious as to what everyone else is up to in life and go 'facebook stalking' and i only end up super upset, I know myself and I know the only way to help myself is to take away the option to do that completely. It is almost a great compliment if we are no longer friends on facebook, because that means I think your life is going so great I wish I could be in the same situation! Jealousy is a hard thing to deal with sometimes.
So again, please don't be offended, although I know some still will, I honestly really need to do what is best for me though. I would leave facebook completely so I dont need to deal with any of this, but facebook is the only way Thiagos family can see our family. If you would like to know what you can do, please just be patient and understanding, it is all I ask.

Thank you.

no place.

I never have the time to sit and think of a subject I want to write about, when I do start in a rant, I either have sol needing something or may. In the end I just go with not writing anything so I dont end up writing something I shouldn't have or something I haven't thought through. But I've been really down lately and thought getting something out would be nice.

I dont like when I feel down and have no specific reason for it to pin point the problem and try to fix it. I think I'm just tired of seeing everyone's happy lives while every day is a struggle for us to get through. The problem, facebook. I really hate it. I also hate feeling trapped. It is so hard to go out and do anything with sol and that is so unfair. Everyone can go do anything they want with their babies, but we have to split up if we want to go out, family outings dont happen often. Funny though if we had a healthy baby we probably wouldn't want to take them out to things anyways, but the fact of knowing how hard it is makes me so mad. Or maybe I'm down lately because in a few weeks sol will be the same age lua was when she passed away. I hate that I was an incompetent mother for her and couldn't help her more. I mostly hate that I have the worlds worst genes that causes this to happen to babies and there is nothing I can do about it. So very unfair. I know complaining won't help my situation, it will probably just make it worse in the end, but some days I'm just so sad.
I  feel like there is no place for me anywhere. All the support groups im in either their kids are so much better than sol and I dont get much from them, or they have a progressive disease and are declining in health which I can't exactly relate to, this is the problem of not having a diagnosis, I can't find the right group for support. When friends or family talk about kids they really only ask how may acted as a baby, because the other two kids I had dont count?!! Apparently not. I've never talked to someone who cared about luas sleeping habits or how sol sucks on a nuk, if you aren't something that everyone else is then no one relates to you and you get pushed aside in life. And that sucks. They say all life matters, what actually people mean to say is all life matters that is just like me. Maybe that is harsh, but come on... Really.. People only know what they can relate to, if you have never lived an experience how are you expected to know how it feels? I think that's a big part in why some people don't like the black lives matter. If you have never been harassed by the cops before then you cant even relate to how that feels. My husband has been harassed by cops in Brazil just because of his skin color. So although I never lived it, I've heard his experience and I can understand how scary that can be and the fact that it happens. Of course all lives matter, but not all lives are treated the same! As sol gets older, how easy of a life can you imagine he will have... Maybe there will be a few kids that treat him well but the majority of people will not treat him like everyone else because he isn't exactly like you and me. He isn't treated like a normal already, and no one cares. I just see how people are so happy it isn't them, it isn't their baby, isn't their family.
Which is why I say there is no place for me. I only receive pity, sympathy, or condescending people call me such a strong mother. It is all crap. I can tell it is said because they are so glad this never happened to them. My grandma, bless her heart, said that to me when we found out sol was affected... She said, I never had any of those issues with my children and I'm so glad I never had to deal with something like that. As harsh as it sounds and at the time I really didn't enjoy hearing that, it is truth and honest and I thank her for that. For not giving me some crap line as to, oh this is Gods will, everything has a reason, or some stupid untrue line like that. What you should say is, sometimes bad things happen to people that we don't know why and it sucks. Just be honest.

anyway, I seemed to have covered a bit during this post, so I shall put this thing to rest. Funny that when I started I didn't have much to say...