damage

The last couple of nights have been going very well for Sol. No oxygen dips overnight! Which means no waking up 6 times a night for us! He has still done a few dips during the day during his naps, but I'm wondering if it is the increase of saliva that is causing him to pause breathing or something, but, thankfully he has gotten so much better. So much better that last night I got to sleep from 11pm to 4am! IT was amazing!!! I feel like a real person again!!! Woo hoo! And yesterday he had a lot less suctioning than what he had previously. Although it was still a lot... it was less, and he needed no suctioning at night.

Last week we started nursing at the house. I started with a few days for 4 hours. With Lua I had nursing full time and it just became to overwhelming for me. I didn't have any nurse I really clicked with so that is one problem, but I felt too much anxiety of having to be in the house with someone all day, feeling obligated to entertain them, and if I wasn't entertaining them then I needed to find something for them to do so they didn't just sit around and do nothing, but the last nurse I had, wasn't really enthused about keeping busy. That is why I wanted to start off slow and just get the hours I really needed them. I don't have a lot of things to do out of the home all the time, and I don't really want to spend 8 hours a day away from Sol... just a weird thing I have going on I suppose. I'm too jealous of nurses with my babies, I want so badly to have a normal baby at home that it is weird to have a nurse come in and take care of your child. Last week the schedule worked really well for me and the nurse we have was GREAT! but the company had a nurse they wanted for us that was already working with a baby that had a trach and gtube. At the time she left the company for a full time job, but I got a call last week that, I guess that fell through, because now she wants to work with us but the stipulation is she wants full time. She is coming today, soon here, and we will see how things work out. I'm not sold that I want full time nursing still. I can't have more anxiety than I already have going on! So we will see what happens today. Maybe if she is an amazing nurse we will just work with it. I don't know. we will see.

On another note. Sometimes I go along life and think that there wasn't any permanent damage done by losing Lua. There are moments that suck, moments that I wish her to be back, that I can't believe she is gone, but I usually think that is it. We miss her, long for her back, and that is that. I was watching call the midwife yesterday, and they did this episode about a mother that has a baby die at birth from being severely deformed. In the season finale of the show, they go back to that mother and she is just a mess. Being away from home because she can't handle her kids, and she says how she just wanted that baby girl so bad. That hit home hard! It made me realize that although I think we miss her and that is the most of it, every time I lose it is probably related to the permanent damage done to losing our child. I already had a low tolerance for things before having kids, then having kids that gets lower... then losing your child, I can hardly tolerate things anymore at all! I feel bad all the time May drives me crazy. I am that person who knows better than anyone you should cherish your children because you never know about tomorrow, but sometimes I can't take it! Now I see that it maybe isn't because I'm a bad mom, I'm just damaged from losing my child and that sneaks out from time to time on me. It is all just crazy what happens after you lose a child. 

can't.

The last few days haven't been going so well. Sol has started this new thing where he will dip his oxygen levels down to 88 and then bounce back up, but he does this a few times in a row and suctioning isn't the reason behind it. He also is sitting lower at night for oxygen than his normal as well. No clue what is going on or why. I've called the docs a few times over the last few days, one doctor order a chest xray which we did earlier today. Haven't heard the results back on that yet.

This has all been very stressful, it doesn't help that since he is dipping his oxygen we are waking up many times over night to check on him, we are back to the no sleeping thing again. Ugh. When you get little sleep, everything seems much worse as well. The upside, I finally worked things out with a nursing agency and we had a nurse come out today and will have one again tomorrow and thursday so this week will be the week of training nurses and hopefully this will help with a few things.

One huge problem we are having is the fact that he has soooo much saliva, soooo so so much going on in his mouth. I'm not certain he is teething but I'm leaning towards the fact that he is? The other night when this all started he wanted to suck very badly, making loud smacks and sucking motion. His heart rate was up, and he looked uncomfortable and wasn't going to sleep, and this was at 1am. I did end up giving him a tiny amount of Tylenol because I was out of ideas of what to do for him. After he got that though, he did end up going right to sleep and looked a lot better. I can't say I'm certain he is teething, but he has a ton of drool going on either way. He ended up throwing up for the first time because of all the spit in his mouth.. he started gagging on it and ended up spitting up a ton of saliva. I feel so bad for him, he just isn't able to tolerate all of the secretions going on in his mouth, so I called to see if we could try these drops that dry up his mouth some and see if that would help. We got the drops yesterday and we did one dose, but then today I did 3 doses and the last dose had results. His mouth did dry up, he didn't need much suctioning at all, but his heart rate was higher than normal and he started to get way too thick with his secretions in his trach and I don't want to have to deal with plugs, so I don't think I'm going to do the drops again, not right now, not until we figure everything else out. I just don't know what is going on and that is so hard, the unknown, the fear of what will happen over night. Will we lose him all of a sudden, or is this not as big of a deal as I feel like it is?! I don't know and I am losing my mind. I feel I just cannot do this, I am so not made for this, and having the loss of Lua hanging over my head, makes all of this even worse. I can't do it again, I don't know what would help, but I wish there was something. Maybe tonight will go better, maybe the doctors will have some ideas for us tomorrow, maybe, maybe, maybe....? 

sick days

It has been about 11 days since Sol got his first sickness. We have had some scary days, some hard days, sleepless nights, and a lot of suctioning going on. I've had some bad flash backs to when Lua was sick and hoping we don't end up in the same situation we did with her, but this time has been different. I don't want to think we are out of the clear yet because when I thought we were over everything with Lua she then quickly passed away. We did end up making a trip to the doctors in Madison this last week, but that appointment was already scheduled as a review of how he was doing on his new feeding plan. But we were still able to have some doctors look at him and the day we went he was looking fairly well, still battling his cold but managing it pretty well. After we got home he started the congestion stage, which for me has been a lot harder to maintain than when he first got it and was spewing out secretions. With congestion the crud sits on his chest and it is so hard to get out, when it sits in there his oxygen levels go down and that is never good.

The first night that he got sick, we knew he was sick because he suddenly started needing constant suctioning, and after a few hours of us having to stand next to his crib suctioning, I decided to call the hospital to see what they recommended. I was able to talk to a pulmonary doctor that we had a few times in the NICU. She sent us an antibiotic right away and worked out a continuous feed plan, along with extra coughs and chest p/t to help work it all out. The first day was pretty rough, we spent the whole day and night on the couch trying to maintain him. By that evening he was already looking better, the secretion amount stayed about the same for the next few days. Then we ran into this congestion phase and besides being already tired from staying up half the nights suctioning, now we had to stay up most of the night to try to stay ahead of the junk settling into his lungs. By that morning I was starting to not be able to keep it together anymore and strongly considered admitting him to the hospital. He was keeping his oxygen right around 93 and the doctors said if he stayed at 92 he would need to be seen right away, I didn't want to wait until he gets stuck at 92 before we try to make it to the hospital that is 2 hours away. By the time I heard back from the doctors, we spent all day doing cough assist and saline nebs, he finally started looking a bit better. His main doctor ended up calling me and talking me through how to change his vent and give him a little bit stronger settings and also made his cough assist a little stronger as well. She ordered up some nebs treatments for us as well.

Almost as soon as we did those changes I could see a difference in Sol. His oxygen went to the 98s and stayed there and the coughs were getting all the secretions out on the first set of coughs. It was nice the doctor called and talked to me for some time trying to figure everything out. She reassured me that if I felt too overwhelmed she had no problem admitting him to the hospital. It is easier to take care of him when you have another set of hands, though, and Thiago was about to get home at any time so I told her we would see how Thiago felt and if we were too overwhelmed we would head down there. I just didn't know if we would even make it because both Thiago and I only had about 3 hours of sleep that night, neither of us would have been able to make the drive, and Sol would have required a lot of work to sit in that car seat for 2 hours that I just wasn't sure if I could do. The plan was if he didn't get better by morning we would head there. He was improving though, and for Friday I called some reinforcements to come in and give me an extra hand with things, my mom! Since our nurse has canceled on us again for the 5th week in a row, I needed someone that I could count on.

So today... Sol has been doing about the same. He is responding will to the new vent changes and other changes we have made, he is a tad bit less congested, he still has a ton of secretions but some of this may be coming from teething. He has little white bud sticking out on his gums so I'm thinking we got a cold and teething at the same time, who knows. We were told this virus could last 10 to 14 days, so hopefully we are almost done with this sickness.

I am so thankful for the new doctors we have and the hospital we went to this time. He probably wouldn't have handled this cold as well if we didn't have the support we have from them, he would probably be in the hospital right away other wise, or it could have been even worse. I'm really hoping we are on the upswing, but I know how fast things can change so I'm not letting my guard down, and keep hoping that he clears this cold fully.

He has accomplished a few things while being sick, though. This week I noticed his wrist was moving like a waving motion, so i propped his hand up and sure enough he can now pull his wrist forward enough to make it fall down. This morning he was working at pulling his hand to his mouth! His thumb is getting much stronger as well! The other day I caught him looking at his thumb while he was moving it. He is such a silly baby! He has been such a trooper through this all and has kept up his smiling and happy baby faces even through the thick of it. That makes this a lot easier when you have gotten no sleep and scared to death of what will happen and he flashes you one of his adorable smiles! Makes it all worth it for sure.
I find it funny how excited I get with the tiniest things sol does, these are things normal babies do with ease, but his little movements like this, are amazing to me! So many parents never even consider what life would be like if their child couldn't bring their hand to their mouth to suck on it, so when i post a video or a post about what he is accomplishing I don't think many people understand what a big thing this is, unless you have lived it, me saying Sol moved his wrist a tiny centimeter kind of a sounds like a joke. I wish everyone could feel the same excitement I do when these things happen. As long as he keeps working at getting stronger.

In other news... Lua is with another angel in heaven tonight. My heart is heavy this evening for my cousin who lost his daughter this morning. I know, somewhat, the pain they are feeling this evening as they go to sleep the first time without their child.
I wish this would end, losing the people we love. It seems to just get harder and harder every time another person leaves us. Pain, pain, go away!

Sweet baby feeling miserable... 

Sleepy baby. 

 Sick but feeling much better.