homeward bound

Wednesday, March 23rd, we all went home together for the first time since December 24th! It was a pretty huge debate if we should leave or not because for one, it seemed like Sol caught all the sicknesses that we were carrying. May had a cold two weeks ago and then last week it seemed to get worse, I actually ended up taking her into the ER on saturday because her cough was sounding so bad and I was worried it might be pneumonia. They said it was an upper respiratory virus but nothing we would need to do for it. Then on Sunday Sol spiked a very low grade fever and the next day he had a bit thicker secretions. They said to just keep an eye on it though and they didnt think it was anything as of yet. Monday I started with a fever and kept it for two days! So everything was really looking rough to leave on wednesday, on top of it all, we were expected to get a really bad snow storm starting on wednesday... sooo we debated and debated, but since Sol was doing fine and we have more things to help us if he did get a little sicker, I pushed for us to go. If we would have waited then we wouldnt have gone home until next week because the roads looked pretty bad yesterday from all the snow and they don't like to discharge on friday in case something comes up and you need to get a hold of doctors or need help with equipment, stuff like that. Anyway, we headed home. As we left his room, some of the staff stood lined up before the exit doors and blew bubbles as we walked out! It was so sweet and awesome of them to do that for us!

Our drive was almost just as bad as our drive we had with Lua, only in different ways. First we changed vehicles that we were going to take him home in and the vehicle we took, the car seat sits a little differently in and was more upright than we were expecting, so he was sitting really uncomfortably and breathing pretty hard. About half way I asked to pull over so we could take him out and re position, he was pretty upset at this point anyway and i was running out of ideas of what i could do to sooth him. Then I told Thiago I wanted to switch and have him sit in the back because im traumatized from doing this with Lua. So when we went to switch, i thought it would be a good idea to take the  child lock off of the door that may wasnt sitting next to, so thiago could get out when he was in the back. What I actually did though, was flipped the latch up, what i thought was a child lock but was not. So we started driving and then realized that the door wasnt shut! I had to pull over on the freeway and we could not figure out how to get the door to shut. Thiago bent his key trying to get that latch to come back down :( I finally surrendered and called my dad in hopes he would have some idea of what we could do. He did of course. He knew exactly what happened and it was a simple fix... so embarrassing, we just needed to pull the door handle up and then the latch would free up. Oh well, we figured it out and got back on the road. After that, and fixing the car seat, Sol had no more issues and our drive had no more issues!
It was a little overwhelming when we got home, and trying to settle in. We have so much stuff to unpack from being in madison for 3 months. Then that night, it seemed weird i couldnt hear the vent going, I was worried he wasnt getting the support he should be getting on the vent, I went to check on it and when  disconnected the vent, for like 20 mins, it never alarmed that it was disconnected! That's bad! For kids who need support from a vent 24/7 and if it never alarms could be really dangerous! Thankfully Sol would be fine, but it seemed like something wasnt connected correctly for it to be doing that. So I had to wake Thiago up to look at it. We decided to go with the other vent and see if that would work better. That one did alarm, but then it wouldnt STOP alarming, it went off every few mins for awhile then eventually every hour for the rest of the night. I think we all got like 3 hours of sleep that night! Except for Sol, who slept through all of this! He is pretty serious about his bed time, he doesnt let us get in the way of his scheduled bed time. Even right now, we did a bath, trach cares, trach change, dressed him and fed him and he went out at 6pm and is showing no interest in waking up any time soon.

Thankfully my mom was with us our first night and helped me out the next day, which helped me to get things put away and get a little more settled. Today it was just me and the two kiddies and it went pretty well. If Sol didnt have a trach and gtube, he would be like the easiest baby in the world. Having the vent, though, is a biiiig help... he goes on his naps, i can put him on the vent and if he wakes up and I am in the middle of something and he needs suctioned, he will be fine until I am able to get to him, he hardly ever needs suctioned on the vent though. May has been a huge help all day as well, I just become a little more of a crappy parent by letting her watch more tv than I would like : / but I figure it is spring break so she can enjoy today, we will figure it out another day. And because the last few months have been so insane and hard on all of us, I told may that today was princess day, which means we both dressed up in dresses like princesses. I dont know why, but it makes her happy if im dressing up too.. so we did that all day. I really wish I would have picked a day that a ton of people werent coming over! But she was happy about it and that was the point.

It is good to be home, we are still working on nursing, we are getting places but we will see what will happen. Sol has been perfect for us.. I think he is getting over his little bug as well because today he was pretty smiley and happy. Mallo follows him around like no ones business though! If Sol is in his bassinet, Mallo has to jump up and look to see him in there. The dog will not let him go out of his sight. I'm not sure if it is a jealousy issue or if he is already having some protective feelings over him, i dont know, but Sol could not be any more impressed about Mallo at all! Oh a cute little friendship in the works!

His 3 month picture, at home!!

The girls both have a picture like this, his is a little different because he got too big before we got back home! 

all my hard work! 

Mallo watching over his pup 

I was so close at capturing a smile 

He just looks so cute in this

finishing up

This week we were busy finishing up everything that needs to be done before we can get discharged. We needed to do a car seat trial, I needed to do 24 hour cares with him, and also a road trip. Today we finished everything off that list. Wednesday I spent 24 hours with sol, thiago did his last weekend. What it is, is we spend 24 hours with him using all our home equipment and doing everything for him with out having nurses to remind us or do it for us. Both mine and thaigos cares went fine, nothing interesting, just a little exhausting. I actually spent 32 hours with him, getting maybe 3 hours of sleep since people kept coming in and I needed to pump and do his feeds. So what this care taught me is that we will need to do something a little different for his overnight feed. We decided on a feeding pump, we would need it if he gets sick anyways, and hope this will help us all get sleep. He sleeps HARD, he goes out at 8 and he doesn't wake for anything until 6am, so he's a good sleeper. I thank the nicu for that!

Today we did our road trip. It went well! Much better than the first time we took lua out... Soooo much better. We decided to keep him on the vent, I felt it would be easier for him and not exhausted him out with all the new things he would have to be tolerating. Honestly it was a good idea, we had an easy trip, suctioned once, where with lua we could be suctioning every 2 mins. It makes it a lot easier for all of us to not have to be constantly suctioning. Plus, he doesn't need to be wearing himself out! That is something I learned with him this time around about the condition him and lua have, they tire out fast. He can get stronger but not if he is constantly getting worn out. This is what we did wrong with Lua. I thought she had to constantly be strong to get stronger... But really what we need to do is let him have his strong moments and when he is done, let him be done. If we keep doing that he can build endurance compared to keeping him running on fumes.
This is a lot of me just rambling, but it was an Ah ha moment for me. I'm learning more about the condition and that will only help him in the future. I still so badly wish I could have had the knowledge I have now for Lua. But still, we had a good time, we went and saw the Easter bunny and he posed with sol for us. We walked around the mall and ate some food. The problem with this little guy is he doesn't like to sleep in the car seat. He likes to look around too much, then he gets tired, then he gets cranky, then he cries. Until he falls asleep that is. Poor guy. The other problem we had is we had so much medical equipment we forgot to bring a diaper bag with diapers and wipes... So we had to head back before his diaper exploded!

Now that we have done all of that, we are talking about being able to leave the hospital Wednesday or Thursday. As long as everything keeps going well. May is sick, again, I actually took her to the ER today to get checked out. She has a upper airway virus, so as long as sol doesn't get sick from that we should be good to go. We decided to not wait on nursing because it could take 2 to 4 months before we could get it going and we cant do that, we are doing everything anyways so we will just be looking for some help from whoever until we find some nurses.

I am so happy sol is doing well, I am disappointed that we didn't do this for Lua, as I have said many times before, but sometimes I still really cant believe this happened again. It makes me feel like an inadequate parent. I know it isn't my fault this happened to them, because if I could have picked the genes they could have gotten I never would have picked those crappy genes, it just seems that having two kids like this is the universe telling you you dont deserve to have kids, at least you dont deserve to have more than 2 kids, we don't do society any good by reproducing, and it just sucks. Even if those feelings are silly, I can't help it and it can get really depressing every now and then thinking about all of this. I love the progress sol is making, I wish he didn't need to be making this progress though, that he could be a healthy happy baby. But at least I think we learned our lesson on having kids, we will let those who are successful and can actually have healthy kids do the work in making the next generation. We will stay on the sidelines.

At least we can hopefully be home soon and hope for the best from here on out.

2 years ago.

Lua would have been 2 years old today. 2 years ago our lives changed completely in a direction we never saw coming. Never had any thoughts or concerns that we would have a medically fragile child and now what could have been children. Not once during my pregnancy with lua did we expect anything to be wrong, my biggest concern was how life will be with two kids now. Now we will never know how it feels to have that "normal" family. Two healthy kids trying to juggle normal every day life. It is just funny the one thing I thought about the most, is never in my future anymore. Although we lost our original hopes and dreams for her, she gave us so much in return. She was like a ball of love. Precious baby girl. She has forever change my life. And today we celebrated her.

I asked the Ronald house if we could get a meal for the house in memory of her, they decided a lunch would be best. The staff made posters and hung them up on everyone's doors! And yesterday I was meaning to go get a cake for today, but I got out of the hospital too late, all I could find was a cookie cake. Then in the morning we called dominos and ordered the pizza, which promised us to be at the house by noon. I also decided I wasn't 100% happy with the cake, and I also wanted an ice cream cake so in the morning after seeing Sol, I ran to DQ and got a cake.
The staff had the kitchen nicely decorated, it was so sweet! The pizza did not make it there when they said it would, though, I was so sad, people had started coming for the pizza and here we had to wait an hour longer than suppose to. After calling a few times they did end up giving us free soda, and after thiago called and complained about the wait, they actually refunded our whole purchase! I'd like to think that was a gift to Lua!
Once the pizza got there and we set everything up, we spent about an hour talking to people about Lua and telling them her story it was a nice way to celebrate her life, by telling strangers about her. She still touches lives even being gone.
I'm glad I had the opportunity to do this, it kept me occupied from this day and how hard this day can be if I have nothing to distract me. Sol was also a good distraction and I'm glad I had him to snuggle. He was super sleepy today though, think he is feeling a little under the weather, we will see how he is in the morning. Tomorrow I do my 24 hour cares with sol, so if he isn't feeling well I will be with him all day and night.
Everyone at the hospital were really awesome too, many came in to wish Lua a happy birthday, and many spent time talking about lua with me. One respiratory therapist said Sol will have to live for two... I kinda liked that idea.

Happy 2nd Birthday Lua. I love you so much!

Madison.

As we are getting closer and closer to going home I can really start to appreciate all that the hospital in Madison has done for us. I hate to keep on comparing our experiences between Milwaukee and Madison, because there were a lot of things I liked about Milwaukee and that I miss. We have had great nurses here in Madison, we had many many great nurses in Milwaukee too. So many of them invested so much time with us and really wanted us to succeed. I wish we could have collaborated Milwaukee nurses and Madison nurses, we would never leave the hospital. Our physical therapist in Milwaukee.... She knows her stuff! She is amazing! I've still consulted with her about sol because she knows so much and she did amazing work with Lua, I couldn't thank her enough for all she's done. Our rehab doctor in Milwaukee.... I dont even know where to start. I've never met a more amazing person in my life. She loves these kids and she makes sure they have the best life possible. I really hope Sol can meet her someday, I wish I had another word for amazing, but i can't think of anything better than the fact that she is amazing, and so kind, truly a heart of gold! She was with us from almost the start with Lua and we knew she had our back on all the decisions we were making and helped guide us into making the best decisions for Lua when it came down to casting or not casting. I recently met the rehab doctor here in Madison, and I think they do good here but I can tell their specialty is more in cerebral palsy, where Milwaukee has a lot of experience with arthrogryposis. In fact I asked how often they worked with AMC here in Madison she said not very often.
So as you can see each place has it's specialty and what they excel at. For us, what it really comes down to is pulmonary. Milwaukee shouldn't even feel bad, and knowing the pulmonary doctors there; I know they don't feel bad, but they shouldn't because our pulmonary doctor has spent years dedicating her life to babies/kids like ours. Although our kiddos are new to her, she knows the protocol on how to give them the best care. Actually she literally wrote the protocol. I'm not even kidding, you can look it up, she wrote a detailed explanation on the best treatment for kids that have neuromuscular diseases. Her goal for kids like ours is to give them more time. Doctors in Milwaukee, and I can say this with certainty im not being mean but it is their protocol, their goal is to help the kids be as comfortable as possible until they pass. This part im unsure about, I dont know the reason behind why they choose this if it is because the kiddos are too much work, they don't think their life is worth living in such conditions, or/and if they are just stuck to the old ways of doing things for kids like these. I dont mean to disrespect any doctor in Milwaukee, but I feel like it is something a parent should know if they have a kid with a similar situation and the parent wants as many years possible from them, they shouldn't choose Milwaukee until they decide to catch up to what Dr. Schroth is doing.

As we prepare for home, we are literally preparing from home. They have us training like beasts here, setting up scenarios that we may encounter at home because they want us to succeed! They don't want to see us have to come back, unless a sickness of course, but they want what is best for Sol. We are doing 24 hour cares with him, Milwaukee only required like 8, we need to take him out on a walk daily, eventually we will need to go on car rides with him, I mean we are basically acting out how home will be every day. If we wouldn't have already lived it, I would feel very confident going home. Which is why I give this ode to Madison. Why I thank them for giving us the tools and information and skills that we need in such depth. No, not everything has gone perfectly here, there are still things I dislike and get frustrated with, but thanks to Milwaukee I've learned I simply need to speak up and fight for what I want or when I want to be heard a little more. I dont know what Sols future looks like, what it will hold. I worry some days about that, I worry it will end the same way Luas did, we still are not sure if this is a progressive disease or not. But I do know we have literally done all we can for him, I know Madison has been a game changer for us, I can see it in Sol and how well he is doing. We have learned a lot more this time around, I wish we could have done the same for Lua, but as our one nurse told us recently, this is now about sol and moving forward. That is what we will try to continue to do and work on,
move forward.

getting closer.

Today we had our delivery of our home equipment and our training on it. I really appreciate that they met us before Sol came home because with Lua the equipment company met us the day we were discharged and went through all the supplies we would need for that month and all the manuals of all the equipment, and it was a terrible drive home from Milwaukee and I was so overwhelmed, I just wanted the chick to leave because I wasn't listening at all after 30 mins... Today was a lot less stressful, a tad bit overwhelming, but we will go back to the hospital with all of our stuff to get a lot of use and practice on it before we come home so we should work out all the glitches we may come across.

So we are getting closer and closer to getting home, hopefully anyway as long as nothing comes up. We organized all our supplies and equipment this evening and have his room pretty set up for when he comes home. It seems really scary to bring him home, but we just have to do one day at a time and hope for the best... I'm going to have white hair caused from stress in no time here.. if I have any hair left to turn white.

We would have gone back to Madison tonight, but tomorrow is May's spring concert and I really wanted her to be in it, so we are staying another night so we can do that tomorrow. I am pretty excited for her, I went to the practice for the concert tomorrow and those kids did SO good. Those teachers blew me away, they have a ton of kids they are working with and they have it so together I can't even believe it! May did NOT want to be in the concert, but after practice today she is really excited and that makes me even more excited, I can't wait to go! I really wish this could be a situation we could take Sol with us to her spring concert, but we can't not just because he is in the hospital still, but it just isn't a good idea. So it is important that we know we still need to do these things and how important these things are, not just for May but for us, and for Sol in the long run as well. It really is unfortunate we don't have a baby that can go everywhere with us, but it isn't what we were given in life and at this point we have to make the most of what we have. I started to feel some overwhelming feelings during our training with the home equipment, but I quickly had to push those feelings aside and remember one day at a time and worry about problems when they come up. Can't change the past and can't dwell on the future it just isn't good.  So, anyway, We will have a great night tomorrow night and I can't wait! 

ready or not.

Our nurses and new staff at P8 are aggressively working at getting us home as soon as they can. The closer we get the more I realize I dont want to leave the comfort of the hospital and the doctors. Although they are doing a great job at giving us all the tools and experiences we will need when we go home. At this hospital they set you up to succeed when you go home. We didn't have as many training sessions in Milwaukee as we have had here, and today we were informed that our nurse is going to at some point take sols trach out so we can be in a controlled environment to see how we do with this happening. It's crazy! And sucks, but it is something we need to be prepared for. They are really going out of their way to teach us as many things as possible in hopes of us not needing to be admitted back to the hospital or worse. Although we know we will be back for any sickness, at least we know what we are looking for now.

Wednesday we get our home equipment and when we come back to the hospital with that stuff we can start to take sol out and about the unit and at some point we get to go on a drive with him and take him around Madison, woo hoo. The nurse is thinking he could get us out of here in possibly 14 to 21 days! We have been in the nicu for I think 68 days now.

Today we did our CPR training and that was really hard. I know we need to move forward but there were a few things we were taught that I didn't do with lua and of course wonder if I would have done it correctly maybe I could have gotten her back. But mostly what if I have to do it for Sol and it doesn't work again. It became a really hard and emotional day for me the rest of the day, and today was another one of those days I really struggled with our situation. There isn't anything I or anyone else can do about it. I have to hope tomorrow is a better day and try not to look at all the happy families that are having their perfect healthy babies, and try to not think about how society will never accept my son because we can only be ok with people that are normal. Even though we all know no one is normal, ill get to deal with all the idiots out there that will say some crap about how sad it is. Or how they are so happy they don't have to live like him, or have someone again tell me how they are so glad their kids are all healthy, or whatever dumb insensitive thought comes to their mind. It is frustrating, mostly because it isn't his fault, he did nothing wrong, lua did nothing wrong but for whatever unknown reason they get to suffer. This is a lot of weight to continuously carry, and some days I cant handle it as well. But that's the best part, i get no choice and I have to handle it. I shouldn't complain. I need to suck it up buttercup.

P8

Today we made a big change and moved out of the nicu and across the hall to the step down unit where we will start to finish everything we need to finish in order to go home. Seems like we have a good start on things already. Tomorrow we will do CPR and this week we will get our home equipment and our training on it. Our next big thing will be home nursing, which is difficult. We still have about 500 grams to go before he can be released from the hospital on his home vent, so hopefully everything will come together by the time he hits his weight mark.
With the transition today, I suctioned out a good size mucus plug that was greenish, this worries me that he may be coming down with something, he was also more fussy tonight and he has been pretty sleepy today. He has no fever or any thing else that really indicates him getting sick, but this is the first time I've ever seen colored secretions out of the trach, with him and Lua she never had this. I'm also worried about him over night in this new unit and new bed, new room, but thiago went back to be with him for awhile, and he is still asleep. Hopefully he has a good night.

Sol still looks like he is getting use to the new vent, he prefers no vent at all, but the hope is that the vent will help make him stronger and with him getting breaks in over night with extra support with breathing, he can maintain his reserve and not wear out easily.

I dont think it is crazy to say we may be going home in 3 to 4 weeks. It seems very stressful and a lot of anxiety about it, but it is coming up quickly. I hope we are ready for it when it comes. I'm already so nervous of making any mistake because the last mistake I made cost us our baby's life and I dont want to ever go through that again, but wondering if I get a choice in that or not. I'm definitely living my life more so in fear and I hate that. It sucks to be scared every day of screwing something up and having it risk your childs life. It isn't a great way to live. I so badly wish Sol could have had the pre-Lua parents. I was much stronger then, more determined, not so broken down. At this point I feel like I am many times just hours away from a total break down.
We got in an accident while we were trying to get back to Madison this last week and I totally went off on the lady who cut us off, stopped in the middle of the highway, didn't use a blinker and got out of the car with her phone in her hand showing me she was looking at her GPS. Thiago hates that I get mad enough to go off on people, but enough is enough. The last thing I can tolerate is people who are driving like morons and idiots. Our vehicle is going to need some good work done to it, and she had almost no damage done at all. Very frustrating.

oh well....