cookie decorating, frozen party, glitter milk, oh my!

Today I haven't seen Sol once... This is the first time since he was born I haven't seen him... I felt terrible this morning, I even got a nap in this afternoon when that usually isn't like me. I feel so guilty not being with him and taking care of him, but I know at this point I could be doing more harm to him and me if I dont stay away and try to rest up. Good thing Thiago is here so he could spend the day with him.

I think someone else is still trying to heal up from this cold.. Literally 3 minutes ago may was saying how she isn't tired, now she is snoring away... Good thing she wasn't tired.

May and I stayed at the Ronald house all day today. I let her watch movies and I rested in between pumping. After lunch may spotted some Christmas cookies they took out of the freezer, she was eating one and a volunteer took out some frosting for her to put on the cookie. Then sprinkles too. When she was done I thought it would be weird to have each person frost their own cookie, so may and I frosted and sprinkled all the cookies for everyone else in the house. It was a nice to do something during our lazy day, and everyone has seemed to enjoy the cookies so far. There is even a picture on their facebook page of her cookies :)
https://m.facebook.com/groups/297493613716802?ref=bookmarks#!/rmhcmadison/

Yesterday we had our first trach class, I realized during the class we are not going to be able to be out of here in a month.. In fact I might be surprised if we get out of here before he is 6 months old. This may not he true at all, but sol has the reputation of being the most weak baby in the world, here at the hospital at least, and the fact that we lost our daughter, I get a feeling they may think we aren't capable of doing this. Could be my own thoughts projecting here, but by the sounds of it, they don't want him going anywhere until he proves to them he is strong. I dont know how strong he has to be to accomplish this, and maybe I'm overreacting.. Or maybe not?? His pulmonary doctor is back next week and I think we will know a lot more when she comes back on. I am hoping. I hate these waiting games, waiting and waiting. Story of my life. And with losing Lua, I can't shake the feeling most people are judging us thinking we are not the best parents, made bad decisions, mistakes. It makes sense others would think this because I think the same thing. I'm upset with myself with what happened to Lua, and I continue to worry if I will make mistakes with sol as well. There is a good chance we will, but I really don't want to live here for 5 more months. Maybe that is for the best.

As you can see this life can be hard. As I think I said before, when we found out sol was affected we wanted one of three things, for him to move more, breathe on his own, or eat on his own. We ended up with a tad bit more movement, no where better with the breathing, and a touch better swallow than lua. But the one thing I wasn't really expecting, unless he could breathe on his own, was him making noises. The fact that he makes sounds really helps with all of this. We never heard lua make noises, so this is nice to have if we are going to be here again. I found out yesterday he was making sounds from his nose. I covered one of his nostrils up and the noise stopped, uncovered and it started.. I did this for awhile until he frowned at me and raised his lip, ha! He didn't appreciate it. He also likes to have his forehead to his nose stroked, doing this he started giving me a little smile, then a nice big smile! Moments I have to remind myself of why it is all worth it.
And also yesterday, a treat for may, they had a frozen party with special guests Elsa and Anna. May heaven! She played games with them and did crafts, ate dinner by them, won amazing prizes, and she even got to watch frozen with Elsa...i dont think her night could have been any better!

Mine could have though. That is when I started getting super sick feeling and had to cut the party short. The nurse told me she thinks I have too complex of a schedule and she isn't sure how I am doing it. Today when I didn't come in, she told thiago that again, my schedule is too intense with the pumping for fresh feeds and what not. But I think she doesn't know I would have to pump at those times anyway which is why I switched him to fresh feeds. Plus he has gained 242 grams since starting this! So well worth it! He is now 6lbs 4oz.. Speaking of feeds... I had to give a weird request to the milk lab yesterday..
I was closing the bottle to my milk when I heard a crunch, I opened it back up to see the top was fullll of glitter, wonder who right? Which ended up getting in my milk... So to not throw it away, the milk lab tried filtering it. They said this was a first time they ever had this request. Unfortunately they weren't able to get it all out, so it did go to waste :( but now we have earned the title of glitter milk, dont know if that is a good trade off or not though...

day dreaming

Sol did good last night and gained 92 grams... That is a big amount, he lost 16grams the night before but the 92 did more than make up for it. Not sure what he will do tonight now, but we are finally getting places. Basically right now we are just waiting for time to pass, for him to grow bigger and stronger before we can start doing anything else. Our pulmonary doctor will be on next week and she will be the one to lead us in a certain direction as to if we can get him going on the home vent or not. She will be our primary doctor once we leave the nicu, and she, like everyone else, wants him to just grow.

While we are here, I want him to do more with pt/ot... I mentioned to them how we did water therapy for Lua, and that sparked them to want to try it with Sol. Super exciting because ot has been seeing his arm move slightly so they would love to see him in the water and what he would do! Oooohh I bet he would love it!! But I dont think this will happen for awhile, pulmonary doctors feel he is still too weak for most things.

So, no news is good news for now. He will have another trach change on Friday, me or thiago may be the ones to put it in.. It has been awhile since I've put in a trach, which I hated doing before so I'm nervous yet again to change his.

This morning I had my Spotify playing, and it was really being sort of mean... Playing all these songs I use to sing or listen to with Lua, and it is still so painful. Sol has been great at distracting me, but he is also a constant reminder of her because they are so much alike and we are always thinking back on how things were with lua at this stage. When she was in the nicu she did this.. Or that.. And this.. He is doing this and that.. You get it. So I am always thinking of her but usually in a constructive matter that benefits Sol. But this morning hearing our songs, was hard. I realize
how much I will always miss her. This is probably not good for me but I like to picture our family whole. In our new house with may running around, the big boss of the babies, our almost 2 year old perfect and walking around, probably following may and being sassy like she was, and us brining home our new baby that plays on the floor, kick kick kicking away and watching closely to his sisters.
Even if it wasn't that and we had two medically fragile kids at home, it still makes my heart feel warm to have our three babies. But it can't be true so I dont go there often, I just like to day dream occasionally, because why not?

I have caught a sore throat and coughing fits from may, I haven't been near Sol as much because I'm going to do everything possible so he doesn't get sick, therefore i gave myself too much time away to think of other things. It will be nice when I can get back to him and distract myself, or at least hold him, that always helps. The last few days he has been smiling a lot and that helps a ton.. He is beyond adorable when he smiles. Of course I've tried to get a picture but my phone is too slow and he too has caught on to the 'phone came out do nothing!' Trick... But one of these days ill get him!

growing boy

On Thursday, daddy and miss may came back to Madison, what was suppose to be for the weekend. Unfortunately may got sick over the weekend and day care wont take sick kids... So parents shouldn't be sending their kids there when they are ill... when obviously some one did because now may caught it, and she told me what kid was sick at school last week so it isn't a great mystery how she got this... But anyway, she can't stay at day care and she can't be in the hospital so we were left the option of her and thiago staying here so one of us can be with each of the kiddies. It is unfortunate, but I'm happy to have them an extra day.

Sol has been working on gaining the last few days and he has been doing well finally! Average of 39grams the last 3 days, he even earned himself a fresh pumped unfortified feed since he has been gaining good weight! Hopefully this will help protect him from Mays cold, we have been making sure she stayed away since I suspected she was getting sick a few days ago. Sol also had a surprise for thiago and may, by being moved to a big boy bed! He is now in a crib and then on Friday he had a trach change and got a new trach that flexes more. It is soooo nice, he can be moved easier with out the vent pulling on him like crazy. He looks way more comfortable than he did with his previous trach. We have been doing trach cares each day and starting our sheet of things that need to be done before going home. Today we set up classes for learning about the trach, mandatory classes even though we did this before. But that's fine, good to get a refresher.

This week pulmonary will come by to take a look at him and hopefully discuss trying to get him on the home vent now that he has been gaining weight and healing really well. He is growing up! He is officially a month old now! It would be wonderful to see if we could get him home before he is 2 months old, while it is probably unlikely and I'm not holding my breath on this, I still have a slight hope we may be able to accomplish this. We will see.

Yesterday I was holding him, he really dislikes being held on his right side, he prefers his left all the time so we are trying to get him use to the right. He was getting pretty frustrated with me though because he was already held on that side by daddy earlier that day. In his frustration he was kicking his legs so much, and looking at his face, I almost forgot anything was wrong with him. I can't wait for his legs to become less contracted, the possibilities of what he can do, with how well his legs move, could become endless! He sure has impressed me with his leg movement and how well he tolerates position changes. Yesterday the nurse told me how much he has surprised her, she thought he would be here until April for sure, but now she knows that wont be the case. He is moving along and hopefully will continue to only improve, is my really big wish here.

one month.

I have never really understood how babies can be 4 weeks, but not really a month, but it is 4 weeks.... I don't know but today I'm celebrating his one month birthday. We can celebrate again on the 24th.

I meant to make a post earlier this week, talking about how difficult this week would be because thiago and may left for home. I really haven't ever been away from may before, as much as she can be stressful, she certainly centers me as well. Anyway I never got around to making the post though, I was too depressed at first, and then too busy, so we will just play a catch up game. I do see the need to be keeping track of my days better because I'm so exhausted I can hardly remember what one doctor from this morning told me, nevermind what happened on Monday! That's long gone for me now!

I do remember some big things we did this week though... First may spent all day at day care. She got scared after 4k that no one would come and get her. She told the teacher, it is getting dark, my daddy should be here by now I'm afraid he wont come get me.
The teacher told thiago she does very well at explaining her emotions, she talks big for a 4 year old. But anyway all week was kind of like that, when it got late, she got scared and would be prepared to cry :( but she's a trooper and I'm proud of her, and us, for sticking through it.

As for Sol... On Tuesday when pt came in i was already holding him so they helped me to move him upward on his side so we were a little more chest to chest. It was very sweet and excellent for him to be in a total different position. He has been tolerating positional changes like a champ! Lua would drop her stats if you looked at her wrong! It took a looooong time to get her use to change, he has surprised me immensely! Later that day we had some visitors! It was so nice to see my mom, grandma, and aunt. Especially being alone this week, their overnight stay helped to make it not such a lonely week! My mom got to hold Sol and she even transferred him back to his bed. My mom is a beast! It took me weeks to feel comfortable with carrying him back to bed! This reminds me of her first trach change and how she tackled it head on with like no fear! I was so scared for HER trach change that i took may to the zoo so i didn't have to watch! It was a pretty great few days and sol was content and behaved himself those days, probably because he had so much lady attention.
He is still struggling with weight gain though.. So more fortifying and back to hind milk and fresh. He gained 130 grams one day then lost 90 which was good but then didn't gain the next day. Even tho they tell me they don't go day by day of weight gain, it certainly seems so to me...
After our visitors left, sol and i were able to have a special bonding time, that came along with a room full of people.. But during his speech therapy we were able to take him to empty breast and let him do whatever he wanted basically. There are a ton of benefits from this so it isn't just about feeding, but all the other things he can gain from it. He decided he wanted to sleep a very deep sleep. He tried to suck a little but was mostly tired. It was still an amazing moment that i really never had help doing with lua, we only did these things at home when she was older and here we have a lot of support and help with it and it was pretty awesome.
Sol decided he didn't want me leaving though yesterday, he thought a slumber party would be fun. I went back to the Ronald house last night at 7 only to rush back 15 mins later because they thought he was having a seizure ... A nurse saw his eyes roll back, which they do a lot, but his heart rate went up and they said he became non responsive. I don't know what they mean by that, but i know he was upset when i left and i had asked the nurse to calm him.. So i think he was just mad and rolled his eyes because he can and they got freaked out. So they hooked him up to monitors all night long to watch for any more seizures. I spent the night with him because i didn't want any surprises in the morning. They found nothing, to their dismay, and around noon he was taken off of the monitors. I had strong feeling it was a mishap of the nurse just not knowing him.. Better safe than sorry i suppose.. But now it is their problem because I'm exhausted, stinky and dirty! It is a good thing daddy and may will be here soon so i can at least get a shower!

3 weeks, 1 day

We were never really able to hear Lua cry, just a few times, but was very faint and not often at all. Sol has that huge stoma and is able to pass the air through the huge leak, so we get to hear his voice much more often than we did from Lua, and it is soooo nice. It is sad, but so sweet to hear him cry. That is one thing I really wanted, I wanted a loud crying baby! I didn't think that meant he would have the trach, and although he isn't super loud, any noise from him is appreciated!

Today he got a bigger size trach to help with the huge leak that is going on and to hopefully help the trach to not fall out just by looking at it. It was a little worrisome to do this upsizing because we dont want his stoma getting any larger, they said his skin is really fragile which is why his stoma got so large in the first place.... I dont know, I'm surprise he has this new symptom of such fragile skin that we didn't have with lua, guess he really wants to just be his own person and not let us use the information and experience we had with Lua to guide us with what to do with him. We had to have another feeding talk because his weight dropped last night again so he is struggling with nutrition, another problem we didn't have with lua. So fortifying more with a different formula that will have more iron and crap in it. So I decided if they are going to keep on this then he needs to be getting fresh milk. They have a milk lab here that wants to do everything with the milk, it is safer I guess. But the more stuff that happens with breast milk, refrigerating, reheating, mixing, that can cause nutrients to be lost, which is why I requested he get the milk I just pumped fed to him so he is getting the best quality of milk possible. Lua got fresh milk all the time and I am suspicious if this is where his struggle may be coming from or it is at least not helping. So we will try that even though it isn't easy for the milk lab to do so things have to be rearranged but oh well.

Daddy got to hold Sol on his side to his chest during ot/pt therapy today, this will help prepare or get sol use to doing some kangaroo time, skin to skin. He tolerated the change pretty well, only upset for a little bit but surprised me with how well he handled the transition.

His first trach change was uneventful, thank goodness!!! He was pretty upset, who wouldn't be.. But he is resting and getting a break from everything for now. Speech will be coming at 3, so hopefully he will be all rested up for his next therapy.

next big plan for him is to start growing.. Apparently if you want to get out of here you have to be gaining weight! The only time and place that it is great for you to gain weight, being an infant and in the NICU.

3 week old baby

Yesterday was a nice boring day. Not much went on thankfully. Today little Mr. needs to get a lot of blood taken for some labs and genetic testing, poor little one, I already feel for him. Hopefully that is the only eventful thing that we have going on.

We were told yesterday that he lost a lot of weight the night before, but it was the weight he gained from surgery and fluids so it was expected. If he didn't start gaining weight they will want to fortify more, of course... But last night he gained 30 grams! So the threat worked last night now I hope he continues on this path! If they fortify anymore I'm done doing hind milk pumping. It is a lot of work for them to be so flaky and all oooooh he isn't gaining weight lets add formula, when I'm pumping my butt off day and night... Plus my milk is on an average of 36 calories so he's getting more calories from me than the formula! Oh well, the breast milk is a touchy subject for me...
Speaking of... I missed speech yesterday, but sol is really doing a good with his suck. He is trying his best to swallow so the speech therapist is thinking in some weeks of trying to put him to empty breast and see what he does. So exciting for me, one of the bonding things I miss out on with my kiddos with this condition.

Sol has started moving his toes and feet now, sometimes it seems like he is moving his arm but I can't be sure on that one yet. I've missed pt and ot all week this week so I'm not sure what they have been seeing either but a couple people have mentioned the feet. So that's great! And exciting. Hopefully he will continue to get as much movements as possible.
This brings up something to point out for people. I just read someone asking on facebook if he is showing progress... And also some neighbors have asked me how he is doing. I realize when I say he is gaining weight, getting more movement, stable for the most part, people are automatically assuming he will be or is just like a normal healthy baby. Ok everyone needs to get that out of their heads, he will never be the normal baby you usually see because he has a huge lack of skeletal muscle. Yes he is making progress, despite us watching him almost die earlier this week, he is getting better and stronger, but not how you are thinking. When you are working with the slightest movement in the world and you start to move your toes with it, that is huge for us, but it would really mean nothing to someone who is use to all healthy babies that have muscle. It is exciting to us all the things he is accomplishing, so it is great to be excited with us, I just ask please do not confuse this with him being 100%. We do not know if he will sit up on his own, hold his head up, roll over, crawl, or even swallow on his own. We dont have the slightest clue and neither do the doctors, so don't ask what they say either! But whatever accomplishment he does make we are going to be extremely happy for!
To answer that question, yes, he is improving, I would say, and we will just keep hoping for all the improvement we can get.

Back tracking to earlier when I said he would get his blood taken.... That didn't go well, the practitioner wasn't able to get a vein so I asked her to stop and we will skip genetics for now... I can't watch him getting poked and dug into, although he was a rock star with it! He was sucking on my finger during it and hardly got upset at all. Such a little champ!
We were also told we are probably going to go up a size on his trach to help fill the huge stoma and this should be safest all around. We will see and hope it works, but also doesn't take his cry away!

Suppose that is all for today!

the need for boring days

Ohhh little Sol.. I cannot believe how his first 20 days of life have been going...the amount of times we have had to watch him struggle to breathe in 20 days is just ridiculous. I can't even wrap my brain around all of this at times. I really dont understand why he has to go through so much so soon.

With the trach comes trach cares, cleaning the stoma, changing ties that hold the trach, cleaning his neck, the basic things. I had helped with this yesterday and it made him mad but went fine. Today though, we were working on them and his stoma site is just waay too large for his trach, this has also been giving him a huge leak on the vent and allowing him to make noises. Anyway, while trying to do cares, the vent pulling on his trach, suddenly the trach just fell out, usually there is a little more work that goes into getting the trach out but his stoma is just too large and his trach shouldn't be popping out that easily. The nurse stepped in, I could see the trach was kinked and I think she repositioned the trach and started gagging, but his chest was not coming up, his heart rate was dropping fast and his oxygen levels were well below the 30s under 20s... Everyone was showing up to help, but the nurse then switch out his trach and that gave instant results and his heart rate and oxygen slowly started coming back up.
It is the worst thing in the world to watch your child turn as white as a ghost and watch their vitals go down... I have to wonder what we are doing so wrong that things like this keep happening. Lost Lua, watched Sol just extubate himself like a week ago, and now this today... It seems that when the original trach went back in, it was closed off some how, either with secretions or it was just blocked off somewhere else in the hole in his neck and not in the correct positions because of how large his stoma is. We can't change anything right now because the stoma is so fresh they think getting a different size trach or a cuffed teach would stretch out his skin too much and make matters worse. Now we get to live on pins and needles as to if this will happen again, will we be there for it? Will it happen over night?? I just hate all of this very much.... I wish we could have extremely boring days some day...

recovery

We are 2 days out from Sol's surgery, almost 3, and they plan to do his first trach change tomorrow morning. After the first trach change we can start holding him and start doing his cares to prepare for going home, this could still be another month because we will have to wait until he is at a certain weight.

Recovery has been going up and down for little Sol... He has needed some stronger drugs off and on, docs were considering doing another blood transfusion because his hemoglobin was low the day after surgery, we decided to wait and see how he bounced back instead. He was started back on his feeds yesterday and at 6pm tonight is back on full feeds. They were concerned about his lack of peeing and wanted to try doing a catheter. I strongly requested to not because with lua they threatened to do the same thing and at the last minute she peed, so now he has been on track with peeing, his system seems to be starting up and now they are waiting for a good size poop to seal the deal.

But it is hard to see him in pain and discomfort :( . This evening as he was having ups and downs, I tried comforting him as much as i could and around 6pm he got pretty comfy and fell into a nice sleep. Thiago said I comforted him better than morphine! But that only lasted for an hour, after we left we heard he was really uncomfortable and got another dose of some meds. I hope he starts feeling better soon, it is just so hard to see my 2 week old baby in pain, it is beyond unfair!

On a side note, we received a very generous gift from our home church, the congregation did an offering for our family and gave us a very generous donation. I much rather our family not be in this situation to need anything, but since we find ourselves here yet again, it is really touching to know people care for us. For that we thank everyone there so much for all the support and prayers!

I have found this second time journey to be one that is a little more lonely. I have talked to a few people and most of them tell me the truth which is they just dont know what to say. They can't believe this happened to us again and no one has any words for us. Workers at the hospital, that help support parents, don't even know what to say to us. They mostly apologize that we have to go through this again and they admit they don't even know what to say. I don't have much to say either. The hope was, although we knew he was affected, we were hoping the condition would have manifested differently leaving him in better condition. That was the big hope from me, but he is very identical to lua so that didn't happen. Oh well, it is what it is now. He is here and we have to get over it because he deserves the best quality of life that he can get. This makes me nervous, though, because I am not sure if I can give him the best life he can have, although we have better doctors and better tools this time, I am still nervous because I already failed once. Regardless of us not having the right doctors and equipment, I would think a mother just knows better and I can't believe I didn't know best for her. It just makes me nervous to do this again.

I don't think I believe everything happens for a reason, something everyone tells me. I think we had bad luck, unfortunate events, bad genes, and that is just the way it went. I don't think I'm a strong parent, another thing people keep saying. I am just going day by day trying to get by doing what all the other trach parents and families have to put up with, that doesn't make me a 'strong parent', just makes me/us parents, doing what we have to do for our kids that every other parent would do if they found themselves in the same situation. There are other things people, doctors, have said to me that I disagree with and dislike hearing, but I know it is mostly because no one knows what to say. No one knows how to make sense of what has happened, and I don't know how to either, so I understand, and hope others understand why some things we say to people that we think makes them feel better, really doesn't help. One of the best things to say is I'm sorry you are going through this. Or I personally like, congratulations on your baby boy. It is still a big deal to have this little miracle even though he comes with challenges. This last week someone told me that when they were in genetics class, they were told only 3% of babies with genetic issues are even born. Mostly they end up being miscarriages. She said when she heard that it amazed her, these babies that make it through have something extra or special that has made them fight enough to be born. I have had 2 of the strongest babies there are then. They could have easily been miscarriages but there is something extra in, well all of my kids, that make them fight a little more. Not to say anyone else's kids dont have that, but hey I have babies that dont grow skeletal muscle so I think I get the right to brag on them and their extra special something.

I am hoping little sully (may has been calling him this) is feeling better in the morning. I just can't stand seeing his little face crying from being in pain anymore!! I even yelled at a nurse practitioner last night for almost pulling his legs up..... no more! I want no more pain put on him anymore!!!  

trach day

little Mr. is back in the operating room now getting his trach, gtube, and nissen done. A nissen is where they take part of the stomach and wrap it around the esophagus to help stop the chances of reflux, spitting up, and resulting in less chances of aspiration. With his fragile airway, aspiration is not a good thing for him so we decided we should go ahead if this will give him the best chances. He already has the trach in and we are now waiting for the gtube surgery to be done.
After he went down genetics came by to talk about his findings and what he thinks is going on. I'll do my best to summarize and make sense at the same time, but it is a lot of confusing stuff so I dont know if ill be able to explain it well enough or not.
When lua passed I worked with a genetic counselor to get a exome sequencing test done of Lua's DNA in hopes of finding the diagnosis. She also had a muscle biopsy done after she passed to see if we could find a diagnosis. After these things I was told the muscle biopsy showed an SMA like disease... Nooo clue what that meant. And the exome showed originally nothing but then at 20 weeks pregnant with sol they said they found this variant in the plec gene. They felt this was responsible for what happened to lua even though I disagreed. They told me then that this is all they have and will go with it until medicine catches up with our very special kiddos and proves other wise. After Sol was born, it did not take long for everyone to agree that this is not what happened to them, this plec gene is most likely not responsible. Reason being is because there are no cases like ours this severe to support it, and the diseases that come from this plec gene are mostly diseases that affect the skin. Although it can't be 100% ruled out that the plec gene is or isn't responsible, the geneticist is going to try to disprove that it is the cause by testing Sol and if he doesn't have both changes like lua then we can assume the plec gene is not what caused this.
Where that leaves us for a diagnosis is, kind of complicated... The geneticist believes what happened is the skeletal muscle didn't form. When he looked at the muscle biopsy from Lua, that is what they found was no skeletal muscle present, not to say there was none because muscle breaks down fast after one passes away but the findings are consistent with how our babies look. They do have very little skeletal muscle throughout their bodies which is why the lack of movement. When this happens it is considered a myopathy, and since it happened at birth it is congenital so his diagnosis is in a broad term considered congenital myopathy, but we dont know what type because we dont know what gene has been effected. The test we did with lua checks for the 5,000 different genes we (geneticist's, scientists.. What not) know about. We have 20,000 different genes... So whatever happened to whatever gene is not known yet, we dont even know the name of the gene! Nothing, nada, zero info on whatever gene got mutated and did its thing. We know it is most likely recessive, me and thiago each carry one change or mutation in that gene, and we have 25% chance that each child could have this condition, the geneticist said to keep in mind because we had one girl and one boy with it we could basically assume we have a 50% chance of it happening, he doesn't believe the gene is dominant, well it shouldn't be because one of us would need to have the condition, which obviously we don't, but it could still be that high of chance. We also could always just have bad luck too, some people can have 6 out of 9 kids with the same condition, it just depends on how lucky you get i suppose.
With a myopathy, the muscle was formed wrong, possibly a genetic condition where blood flow doesn't flow well and doesn't supply the muscle with the right nutrients to grow, this is unlikely but possible, or the muscle fibers just didn't grow correctly because they didn't. They don't continue to break down, so we have the possibility of him growing stronger and strengthening the little muscle he does have rather than him losing muscle mass. I couldn't even imagine him losing anything when he has practically none to lose. This is a good thing though, and it stands to reason if Lua could have gotten over that sickness she wouldn't have passed away from her condition, she passed away because being sick and already weaker makes you much more weak. If we would have had the right tools and doctors with her, most likely we wouldn't have lost her... That is something hard to deal with, we made too many mistakes with her and lost her because of it. Because of the mistakes we learned from, Sol has much better doctors and the right tools to help give him the best quality of life, this I truly believe. I'm hoping we don't make any more mistakes.
The biggest problem with having no true diagnosis, we have nothing to look for to help with a cure. Or say we want to have another kid, we dont and won't, we could have gone the route of checking the embryos before implanting to see if they have the same condition or not so we could have a much better chance at having a child that doesn't have the condition, but we can't do that now because we have no gene to identify as the problem. It is possible in a few years we will know what this condition came from, when medicine catches up with our kiddos, but until then we work with what we have.
An interesting thing with Sol, though, is I didn't have excess water while i was pregnant, which means he was swallowing.. He hasn't been doing great with swallow with his breathing tube in, so I'm not sure if the breathing tube has been inhibiting that or if he became to weak to do it, but with the trach now we will see what he can do.

Sol went down to OR at around 12... I Just got news from the nurse he is doing well and should be coming back up pretty soon here. I am anxious to see his little face!!

fragile life.

Tonight we were reminded how delicate our sons life really is. We also learned how it is better to have procedures done that make life more challenging, than to watch our son potentially pass away...
This evening I was holding Sol and he had a large air leak around his breathing tube, more air seemed to be going out of his mouth than down the breathing tube itself. The nurses messed and messed and messed with it but it wouldn't go away. His numbers looked really good so they weren't really worried. Later when he got back to bed, he still had a terrible leak but they decided since his oxygen levels looked good they would leave it. Daddy and I were talking and looking at him because he was super awake!!! He had some secretions in his mouth and when I pulled them out, a huge plug of secretions came out and his leak went to 100%, at that point everything went down hill....the nurse came in and I'm really not sure what she was doing but she just kept frantically suctioning his mouth out while air was just blowing out his mouth. He then started gagging on his tube. They called in respiratory therapist, which did nothing from what I could see, where at that point the neonatology nurse practitioners came in. He still was maintaining his oxygen levels but he was gagging hard on that tube and started throwing up. I had to leave at this point. I am so sick of watching my babies go through this type of stuff I just literally can't take it anymore. My husband kept me inform, and while the plan was to get an xray and see where the breathing tube was, xray didn't make it in time and the tube came out. They attempted to intubate him but 3 different people failed. They finally got anesthesiologist in there and on his first try he got the tube in.
Nothing is worse than to go back and see your baby with loss of color, cold, and upset. I can't handle these things anymore. Life is truly unfair, not to me, but to my babies. They never did anything to deserve to have these things happen to them. He deserves so much better, he deserves a stronger parent because I am too broken to handle situations like this anymore. And with the whole ordeal, we decided it is important we get the trach as soon as possible, it is just too hard with this tube and if people aren't going to be careful enough to not move it out of place, then we have to have an easier airway, I dont want to see this happen again. I worry he might be hard to get the trach into as well, but at least it is a shorter tube, lower in his airway, than the breathing tube is.
Thiago, (daddy) stayed at the hospital with Sol overnight, we just didn't feel safe to leave him there alone. Our nurse is a little tactless that we have this evening, nothing against her, but I am certain she doesn't like us very much and I wouldn't trust her to call me if anything were to happen. Last update I heard was that he was doing better, he was upset and probably very sore feeling from them trying to get that tube down his throat. I think he ended up getting some pain medication for that, so I hope he was able to rest more comfortably.
I wish I was stronger to handle these situations, but something like this is just too close to the morning we lost Lua and I dont want to watch another child pass away. Unfortunately, when your baby has a problem with the airway, the possibility of losing a child will always be higher than normal. I have grown to hate that phrase soooo much that says you only get what you can handle. Sometimes you get a whole lot more than you could ever handle, you aren't given a choice as to if you can or can't handle it because you have to do it! I'm not the parent I was before I lost Lua. I knew I was weaker than before and at this point I have confirmation with all that happened tonight and i couldn't even stay there for him, I'm disappointed with myself and the fact I have such little strength compared to before. I'm now terrified to go home with him, with or with out a trach! His life is so fragile and I dont want to be the reason we lose him or something bad happens to him. It is simply not fair. He shouldn't have to go through this.

small updates

The last few days have been pretty laid back. With the holiday weekend and many doctors being off, we haven't had many disturbances and it has been nice to just get to hold him and hang out! Tomorrow things will start up again, so I'm hoping we wont have an insanely stressful week. I know he will start therapies this week and also have an eye exam. Other wise the plan is to try to wean him down on his vent settings and wait until he gets this fluid off his lung and do a trial extubation. This will be hard because it has to be done in the ER and all the right people need to be there because of him being hard to intubate so we aren't sure how this will work exactly. It still seems that we will really only get to go home with him having the trach. It will just be safer and probably easier or what will give him the best chances, but we are hoping for a miracle still.
His, and luas, condition is still a very big unknown that they are trying to figure out, but no tests have been started yet. I wonder if they will figure it out. The thought is it still might be x-linked sma since they fit some of the characteristics but it usually doesn't effect girls so doesn't explain why lua got it. Could potentially be a myopathy but nothing for sure.
I do absolutely love our pulmonary doctor, she is but the best and has been amazing to us. She suggested to the nurses that they find ways to sooth him besides giving him medication and last night our night nurse found a vibrating toy, stuck it under his butt and he loved it... So first 24 hours he has gone in days with no medicine being administered. Turns out he is just acting like a baby that needs some more comfort measures than anything else. It is so nice to have a doctor that is a specialist in this field of neuromuscular diseases, and the fact that she will give us the tools we need this time instead of us fighting to get anything for lua, which hopefully can give us more time and maybe hopefully more improvement out of Sol. We will see, but I for sure dont regret coming to Madison at all so far! I do regret going to the WalMart here though... I'm sure actual crimes have happened in that store before!
Mr. Sol has a much better suck than lua had, not sure if it is good enough but better than hers... It was pretty cute.. This evening he was awake for some time, but he started to get ever so heavy eyed... I have him a nuk and he just went to town and his eyes started to get heavier and heavier but then he would start sucking on that nuk and wake back up... So unfortunately I had to take the nuk from him and in like 3 seconds he was out cold! Resting very peacefully... Reminds me of something normal babies do and those are good moments to have every now and then!

Happy New Year

2016 has not started in any way I would have pictured it to start! My due date was Jan. 9th, my dads birthday and the day my grandpa died. I was hoping to have Sol on Jan. 9, but it wasn't meant to be. I mean the second we gave him an eviction date, he decided to pick his very own day! Although we knew he had the condition Lua had, we knew the new year would be similar to this, I still never pictured it. But he has already passed the days they gave him since they told us if we didn't have the exit procedure, he most likely wouldn't be intubated and would pass away at birth. Today he is 8 days old. He has already brought in a new year with us, so he is crossing things off his to do list with speed. It was a very special time to be able to spend the evening with him in his room, I held him while the new years eve ball dropped, and he got kisses from all of us at the stroke of midnight. I would have wished we could have done this not in the hospital but at least we had time with him.

I'm not sure what this new year will bring... I'm not sure if we will have a 1 year old next year, I guess I'm not promised to be here another year myself, or any of us. I dont know how long we will be in Madison, how we will be able to handle another trach, how may will adjust to being in school full time... So many unknowns for this year, and truthfully it pretty much scares me! It is kind of funny, thiago asked me the other day that if my sims were living our life, if I would quit the game and start a new one. At first I was think for sure!!! But then I thought about it and decided, no way I would, I want to see what would happen.. Besides Sims are not actually my life so it doesn't effect me any! If only that was actually true for me. The thing of it is, with Lua I believed full heartily that she would walk, talk, sit up, hold her head up, everything a normal kid can do, it would just take her longer. I feel like that blinded me from seeing how weak she was. But that kept me stronger. Knowing I just had to work with her and wait for the day she would reach these goals, kept me centered whenever doctors would say, wow she's so weak, wow she will be so much work, wow she will never get that trach out. I would choke back the emotions and say screw them, she will do what she wants...... But, she died. And now Sol is here and looks just like her. The doctors say the same things and it hurts a lot more this time and I'm no longer able to push it in the back of my mind and say, screw it, he will do what he wants.. Because that method got me no where.

Their condition is such a huge mystery, when we feel like we sort of know what it is, something is different and goes against the name of the condition. The pulmonary doctor that specializes in sma babies said he is weaker than sma babies... What is weaker than sma babies? My kids apparently. The diagnosis of x-linked sma is thrown out there for them, this has only been seen in 4??? Babies or some ridiculously low number like that. Life span being 2 years, and lungs being majorly effected from weakness. But we have no proof of this yet and regardless we are working with an amazing pulmonologist. She will give us all the tools we need to maximize Sols quality of life. Something I asked for with lua, a cough assist and was denied, Sol has already started getting it. This helps him to cough out secretions and break things up better than just suctioning and suctioning. The doctor wouldn't let us leave with out a vent, something lua really should have had for over night to give her a break to rest and restore strength. This doctor is truly amazing, she literally broke me down crying to her. I've never felt like such a baby in my life, sitting there crying to a doctor! She was kind though and understanding, she told me that I'm still grieving from our loss and having to go through everything again is a lot to go through and she understood. I know so much more this time, I can't help but wonder how long we will get this time around. I know people expect families who go through hard times to be ubber positive and blessed for every trial they receive, but that is sometimes impossible to do and I wish people didn't expect that. I wish I wasn't asked, how is everything? Because I dont know how it is going, I'm very sad with what is happening, I dont see a reason for this to be happening again, so I'm not going to act as if everything is great and positive over the situation. I know this is dark and no one wants to hear or read it, but it is the truth, not everyone has the fairy tale life or the picture perfect family.
I think I bummed everyone out enough for now... But there is still one thing I do really believe.... When I was pregnant with lua, things felt like they were going so well, I actually asked myself, I wonder what the next difficult issue will be for us. Well now I know. But thiago said the other day, we have to be due for a miracle by now. I really believe he is right. I no longer wonder what the next hard thing will be in our life but what will be the miracle that is coming up, we are in so much need for a miracle.