This last week we were suppose to try the home vent, but there is a pretty big break out of RSV at the hospital and the pulmonary doctors have been buuuusy. So we had to wait for a pulmonary doctor before switching him over, and that happened on Friday. It was suppose to be Wednesday, but the docs were too behind, which was fine because sol had a pretty bad day. He spent most of the day being held and crying. Then it was going to happen Thursday, but he ended up getting his vaccines on Thursday because Wednesday was such a hard day for him.
I also dont want to be judged on this topic of vaccines, I think as parents we all decide what is best for our kiddos, and I know how big of a controversial topic this can become, but that's our rights as parents and if someone out there is thinking he is worse off because I did or didn't give him vaccines, kind of too late and doesn't matter. Just as a side not there.
Anyway, no one wanted to stress him out after having that done. So Friday was the day we switched him over which was nice because thiago then got to be there for it. But it didn't go as planned. He seemed uncomfortable, and he looked better off the vent then he did on the vent and it was just weird so they switched him back to the hospital vent. The respiratory therapist then decided they wanted to wait until a pulmonary doctor could come see him on the home vent before trying it again. That happened today. Our doctor came over and put him on it this afternoon and things went well but she kept calling him a show off because he really doesn't need the vent very much anymore. She just wants him to have it to give him a break while he is sleeping. She gave the go ahead to stay off the vent for as long as he can tolerate, which has been about 7 hours now. We will see how he does tonight and tomorrow, but after 5 to 7 days is when we will move to the other side. We cant go home until he is 5 kilos, I really thought I was told it didn't necessarily have to be 5 kilos but I've been told many times this week that it most certainly does... Oh well. The kid is gaining weight like a mad horse so I dont think it will take forever for him to get there.
Sunday, February 28, 2016
Tuesday, February 23, 2016
4 kilos!!!
We hit the magic number that gets us one step closer to home! 4 kilos! 4022 grams as of last night! He is a growing boy! 8lbs 13oz! He is definitely getting big, I can hardly one hand him anymore! This week sometime he will get to be on his home ventilator and after a week, 5 to 7 days, he will be ready to go to the step down unit that prepares us for going home. Thiago and I both have one more trach change to do, one last class, learn his home equipment, and do a 24 hour session each where we stay with him and do everything. I think this is a huge amount to be by yourself all day, they want you to have nurses so I'm not sure why they are requiring 24 hours, but you can never be too prepared im sure. They also said they want us to take him on a small car ride, not sure how they don't expect us to just take off ;) but this is a great idea because we never practiced with lua and our drive home was a nightmare!! So I'm glad we can practice this before we go. It will be nice to be able to get him out and about and see how he does. He is getting really bored in his crib so getting him out of there will make him happy.
He has recently fallen in love with the mamaroo they have in his room. He spent few hours in it today off and on, and yesterday when may and thiago left, when may started crying, he started crying, so we put him back to bed but that made him even more mad, so back to the swing he went and then he was happy. This week we will also be practicing more with tummy time and having me figure out how to do it so I can keep up with it at home.
way back when we first got to the hospital they sent out a genetic screening to see if sol had the same changes in his plec gene that lua had, we have been waiting for those results. But I had a few questions about genetics floating around so last week I asked to talk with the genetic doctor. They met up with me today, but they were curious why I asked to see them, so on Friday they checked the results on the test and the results were in. I must have had my intuition radar working and could sense that.
The results. When we first sent the test out the genetic doctor said he wanted to disprove that the plec gene had anything to do with their condition because the only form of muscle problems they have seen with a mutation in plec is limb girdle muscular dystrophy which doesn't fit lua and sol at all. If sol didn't have one of the variants in the plec gene that would easily disprove the theory. Well the results show that Sol had the same changes Lua had. Because it is consistent with the findings from Lua, the genetic doc now strongly believes that the plec is what caused the condition but it is a new change they have never seen before. He has no proof that these plec variants are what caused the condition, so to get more proof they need to document lua and sol in a medical report and get it out there so they can find others with the same issue going on and look and see if plec is what was changed in them as well. He is certain others are out there but right now lua and sol will be the only ones actually documented with this condition. He isn't sure what they will call it either, but he feels it should be plectin congenital myopathy. At this time we have no clue what will be sols future, after he is 7 months everything will be totally new for everyone since this condition has never been seen by them yet. Basically though, it is how any other congenital myopathy goes so we can look to nemaline myopathy, Myotubular myopathy, well any congenital myopathy, to help deal with the condition. I'm a little bummed we have to be dealing with such a rare thing, we don't know what to expect for his future or anything, I'm really bummed because if there are only 2 babies that will be documented with this condition than a cure for this is going to be unlikely for many many years, until someone decides they are really interested in this plec gene and start trying different therapies... I just dont know when or how that will happen unless a lot of people start showing up with this condition and there becomes a demand for it.
I'm hoping some geneticist will get really interested in this plec gene and all the diseases it can cause and does a ton of research in it and can give us some answers, but until that day comes, I guess we will just wait and hope that Sol gets stronger each day.
He has recently fallen in love with the mamaroo they have in his room. He spent few hours in it today off and on, and yesterday when may and thiago left, when may started crying, he started crying, so we put him back to bed but that made him even more mad, so back to the swing he went and then he was happy. This week we will also be practicing more with tummy time and having me figure out how to do it so I can keep up with it at home.
way back when we first got to the hospital they sent out a genetic screening to see if sol had the same changes in his plec gene that lua had, we have been waiting for those results. But I had a few questions about genetics floating around so last week I asked to talk with the genetic doctor. They met up with me today, but they were curious why I asked to see them, so on Friday they checked the results on the test and the results were in. I must have had my intuition radar working and could sense that.
The results. When we first sent the test out the genetic doctor said he wanted to disprove that the plec gene had anything to do with their condition because the only form of muscle problems they have seen with a mutation in plec is limb girdle muscular dystrophy which doesn't fit lua and sol at all. If sol didn't have one of the variants in the plec gene that would easily disprove the theory. Well the results show that Sol had the same changes Lua had. Because it is consistent with the findings from Lua, the genetic doc now strongly believes that the plec is what caused the condition but it is a new change they have never seen before. He has no proof that these plec variants are what caused the condition, so to get more proof they need to document lua and sol in a medical report and get it out there so they can find others with the same issue going on and look and see if plec is what was changed in them as well. He is certain others are out there but right now lua and sol will be the only ones actually documented with this condition. He isn't sure what they will call it either, but he feels it should be plectin congenital myopathy. At this time we have no clue what will be sols future, after he is 7 months everything will be totally new for everyone since this condition has never been seen by them yet. Basically though, it is how any other congenital myopathy goes so we can look to nemaline myopathy, Myotubular myopathy, well any congenital myopathy, to help deal with the condition. I'm a little bummed we have to be dealing with such a rare thing, we don't know what to expect for his future or anything, I'm really bummed because if there are only 2 babies that will be documented with this condition than a cure for this is going to be unlikely for many many years, until someone decides they are really interested in this plec gene and start trying different therapies... I just dont know when or how that will happen unless a lot of people start showing up with this condition and there becomes a demand for it.
I'm hoping some geneticist will get really interested in this plec gene and all the diseases it can cause and does a ton of research in it and can give us some answers, but until that day comes, I guess we will just wait and hope that Sol gets stronger each day.
Friday, February 19, 2016
peanuts for sale.
I loved rounds today... A bunch of doctors bragging about my baby... Wow, makes a mom feel good! All the doctors had nothing but good things to say about sol and how far he has come and improved. We have been waiting for him to get to 4 kilos so he can go on the home vent so we can prepare to go home some day! So sol is now 3934 grams, not far away from the 4 kilo mark at all. They think he will hit it this weekend and on Monday we can try the home vent. He is almost at 2 hours off the vent 2x a day! And still gaining good weight. The one doctor was just so pleased with him and how far he has come, he is happy that his feet are wiggling more, his contractures are a lot better, he has a ton of facial expressions and interacts with you, they are very happy with him. I asked if he gets the most improved award and they said definitely!
Today I also did my second trach change and it actually went well! Sol is such a trooper dealing with me. I had to change my hand position to get the trach in but I think I may have found the trick to getting it in with ease, if I can remember what it was anyway... We only have one last refresher class to do and we will be done with training. I started learning the cough assist machine this week, and also started the process of looking for nursing. It seems like we will be here forever yet in the step down unit, but things are starting to come together finally.
Sol also got to meet his neighbor today! Who was also born the same day he was! That is the first baby he has ever met! And she is such a doll. An Amish family have been our neighbors for the last few weeks, although they have been here since we have been, but they did get to go home for a short period until the ended back in the nicu, when at that time they came back to a room right next to us. I didn't realize how big sol was until I saw the two babies next to each other! He is quite the chunk! But the family was able to go home today, it is very bitter sweet. We have spent some nights talking and getting to know each other, it is sad to see our friends go, but so happy their baby is doing well enough to go home. They gave may a ton of little gifts because she helped them to not miss their other children at home as much, they said may was like their child away from home!
Later in the afternoon, this may be a little tmi, but we did some more practicing with empty breast. Sol hasn't been doing well with this lately, which has been bumming me out :( but the speech therapist suggested trying a nipple shield to help assist him in latching since that is what seems to be frustrating him. So we tried and it worked wonderfully. He did great, hopefully we will be over the bad hump now and we can enjoy snuggle time more.
Lastly on our list today was going to the circus! May had fun, which is great, because I don't think you go to the circus for yourself as an adult. At least I sure don't... I always forget the reason why I dont go to circuses often.. I so hate seeing how they treat the animals, I think ill go back when they make it animal free! Yes, yes, I'm one of those.. I can't help it.
But the rest of it was fun.. We ate too much sugar, spent too much money, and watched a guy get shot out from a cannon. Good times. Good times. It really isn't peanuts for sale anymore though, more like cotton candy, snow cones, and toys that are way over priced for sale!
Today I also did my second trach change and it actually went well! Sol is such a trooper dealing with me. I had to change my hand position to get the trach in but I think I may have found the trick to getting it in with ease, if I can remember what it was anyway... We only have one last refresher class to do and we will be done with training. I started learning the cough assist machine this week, and also started the process of looking for nursing. It seems like we will be here forever yet in the step down unit, but things are starting to come together finally.
Sol also got to meet his neighbor today! Who was also born the same day he was! That is the first baby he has ever met! And she is such a doll. An Amish family have been our neighbors for the last few weeks, although they have been here since we have been, but they did get to go home for a short period until the ended back in the nicu, when at that time they came back to a room right next to us. I didn't realize how big sol was until I saw the two babies next to each other! He is quite the chunk! But the family was able to go home today, it is very bitter sweet. We have spent some nights talking and getting to know each other, it is sad to see our friends go, but so happy their baby is doing well enough to go home. They gave may a ton of little gifts because she helped them to not miss their other children at home as much, they said may was like their child away from home!
Later in the afternoon, this may be a little tmi, but we did some more practicing with empty breast. Sol hasn't been doing well with this lately, which has been bumming me out :( but the speech therapist suggested trying a nipple shield to help assist him in latching since that is what seems to be frustrating him. So we tried and it worked wonderfully. He did great, hopefully we will be over the bad hump now and we can enjoy snuggle time more.
Lastly on our list today was going to the circus! May had fun, which is great, because I don't think you go to the circus for yourself as an adult. At least I sure don't... I always forget the reason why I dont go to circuses often.. I so hate seeing how they treat the animals, I think ill go back when they make it animal free! Yes, yes, I'm one of those.. I can't help it.
But the rest of it was fun.. We ate too much sugar, spent too much money, and watched a guy get shot out from a cannon. Good times. Good times. It really isn't peanuts for sale anymore though, more like cotton candy, snow cones, and toys that are way over priced for sale!
Wednesday, February 17, 2016
butterfly.
Today was a sad day in the nicu, this morning when I walked in I saw a butterfly on one of the nicu doors. The butterfly is a sign that the baby is passing away or already has passed away and to give privacy to the family during the amount of time the butterfly is there for. I saw many family members shuffle in and out of that room, I also got a little glance of the baby's head as he or she laid there peacefully.
I spent extra time snuggling Sol today, choking back my own tears, because I know slightly how those parents, that family, are feeling right now. I didn't lose my baby in the nicu, i got to take her home and love on her, but lost her all the same, and i can't help but think of all the decisions they are having to make now, or how they are going back home to their house knowing their baby will never come home with them. Makes me think of those first few days after Lua passed and how gloomy and difficult those days were. I spent most of today wondering what happened to the baby, i can only imagine it had something to do with breathing difficulties. A condition that was too severe possibly, hard to say, but i ache for that family. I thought so much of how that could have been us as well with Sol. We could have decided not to do the trach and let him go, a decision we battled with many many times while i was pregnant with him because we question how his quality of life will be. We could have potentially never even made it to be in a nicu room with a butterfly on the door because we were told so many times that he would probably not be able to be intubated after he was born, and with us choosing to not do the exit procedure, we were then needing to prepare ourselves for his passing.
The butterfly on the door simply hit me hard today. I couldn't walk by with out feeling so heart broken, not just because of us but for the family and their loss. I hate seeing babies die it isn't natural or fair. I read a blog post a few weeks back where a mom wrote to another mother in the nicu who was losing their baby, and the post, sort of offended me. The mother talked about how we all feel the pain of you losing your child, we all wonder why your baby and not ours, and that we all are hurting for this mother. I thought, what a bunch of bull! That mom doesn't know what it is like to be losing a child when her baby is most likely in the nicu for something less severe... But after today I kind of see where that mom was coming from. Although I dont talk to the families much in this nicu because we all have private rooms, there does tend to be an unspoken bond that happens, maybe the fact we all can relate to each other in some ways, so I do see how someone can say that we hurt along side of you, I would never say that to someone going through a loss, but I do feel it, but I also have lived it too. It is hard. Suddenly this evening when I walked by the room the doors were open, the butterfly was gone, the baby and family were all gone. The nicu preparing the room for a new baby to come all happening so quickly. I'll probably go to sleep thinking of that baby tonight. I wonder if Lua will meet that soul.
Besides that depressing news, Sol had a good day. He is getting more time off his vent, he will go up 15 mins. off his vent every other day so tomorrow he will be at 105 or possibly 110 mins. 2x a day. Today while he was off we got some snuggle time in and even bath time which he didn't hate. They are worried about his arm looking like a big bump on it so he had an xray to check for broken bones. No sign of a broken bone, they think it is just... I dont know, tissue I guess, or gravity pulling on his arm. Other wise he is doing well and keeping up with his growth. A pulmonary doc today said we wont be going home until he is 5kilos, but his actual Dr. told me that he didn't have to be so now I'm confused and have to wait to ask her about it again.
This evening after Sol went back on the vent I decided to hold him since may was playing with a volunteer and another kiddo.. It was during his feed so I was trying to be graceful on the transition to holding him but when we sat down I think his feed started flowing too fast into his belly because he got reeeeaaallly sad, he actually started crying out loud. His tummy was really hurting him and I was just about to call a doctor when he let out an enormous big boy fart! That seemed to help him but he was still a little fussy... Poor baby breaks my heart when he gets sad. I soon put him back to bed and vented his gtube and a ton of air came shooting out and he instantly felt much better! So glad there was at least an easy fix because i was really starting to get worried for him.
He is such a relaxed, awesome little guy, I'm glad he has been so strong for us when we have been at our weakest points. If it wasn't for him showing us how much strength he has and fight he has in him, we may have been the parents with the butterfly on the door. But Sol has other plans for now, and I'm not going to be the one to stop him.
Thinking of you little one who has gone too soon. May you be free of your struggles.
Thinking, also, of you Lua.
I spent extra time snuggling Sol today, choking back my own tears, because I know slightly how those parents, that family, are feeling right now. I didn't lose my baby in the nicu, i got to take her home and love on her, but lost her all the same, and i can't help but think of all the decisions they are having to make now, or how they are going back home to their house knowing their baby will never come home with them. Makes me think of those first few days after Lua passed and how gloomy and difficult those days were. I spent most of today wondering what happened to the baby, i can only imagine it had something to do with breathing difficulties. A condition that was too severe possibly, hard to say, but i ache for that family. I thought so much of how that could have been us as well with Sol. We could have decided not to do the trach and let him go, a decision we battled with many many times while i was pregnant with him because we question how his quality of life will be. We could have potentially never even made it to be in a nicu room with a butterfly on the door because we were told so many times that he would probably not be able to be intubated after he was born, and with us choosing to not do the exit procedure, we were then needing to prepare ourselves for his passing.
The butterfly on the door simply hit me hard today. I couldn't walk by with out feeling so heart broken, not just because of us but for the family and their loss. I hate seeing babies die it isn't natural or fair. I read a blog post a few weeks back where a mom wrote to another mother in the nicu who was losing their baby, and the post, sort of offended me. The mother talked about how we all feel the pain of you losing your child, we all wonder why your baby and not ours, and that we all are hurting for this mother. I thought, what a bunch of bull! That mom doesn't know what it is like to be losing a child when her baby is most likely in the nicu for something less severe... But after today I kind of see where that mom was coming from. Although I dont talk to the families much in this nicu because we all have private rooms, there does tend to be an unspoken bond that happens, maybe the fact we all can relate to each other in some ways, so I do see how someone can say that we hurt along side of you, I would never say that to someone going through a loss, but I do feel it, but I also have lived it too. It is hard. Suddenly this evening when I walked by the room the doors were open, the butterfly was gone, the baby and family were all gone. The nicu preparing the room for a new baby to come all happening so quickly. I'll probably go to sleep thinking of that baby tonight. I wonder if Lua will meet that soul.
Besides that depressing news, Sol had a good day. He is getting more time off his vent, he will go up 15 mins. off his vent every other day so tomorrow he will be at 105 or possibly 110 mins. 2x a day. Today while he was off we got some snuggle time in and even bath time which he didn't hate. They are worried about his arm looking like a big bump on it so he had an xray to check for broken bones. No sign of a broken bone, they think it is just... I dont know, tissue I guess, or gravity pulling on his arm. Other wise he is doing well and keeping up with his growth. A pulmonary doc today said we wont be going home until he is 5kilos, but his actual Dr. told me that he didn't have to be so now I'm confused and have to wait to ask her about it again.
This evening after Sol went back on the vent I decided to hold him since may was playing with a volunteer and another kiddo.. It was during his feed so I was trying to be graceful on the transition to holding him but when we sat down I think his feed started flowing too fast into his belly because he got reeeeaaallly sad, he actually started crying out loud. His tummy was really hurting him and I was just about to call a doctor when he let out an enormous big boy fart! That seemed to help him but he was still a little fussy... Poor baby breaks my heart when he gets sad. I soon put him back to bed and vented his gtube and a ton of air came shooting out and he instantly felt much better! So glad there was at least an easy fix because i was really starting to get worried for him.
He is such a relaxed, awesome little guy, I'm glad he has been so strong for us when we have been at our weakest points. If it wasn't for him showing us how much strength he has and fight he has in him, we may have been the parents with the butterfly on the door. But Sol has other plans for now, and I'm not going to be the one to stop him.
Thinking of you little one who has gone too soon. May you be free of your struggles.
Thinking, also, of you Lua.
Tuesday, February 16, 2016
thumbs up.
we have been coasting for a few weeks now... Waiting on the weight gain to get to the home vent and then move to the step down unit. So we are waiting and waiting... Sol is doing his part by gaining every day. He is currently 3718 grams so he is getting close to that 4k mark. He has been pretty stable ever since. No issues with oxygen going down or heart rate dropping too low, he is just chilled. Sometimes staff forget he is here because he is just coasting away.
After we came back to the hospital from our few days off, sol had a new trick for me. He has started to move his thumb, that same evening we saw his thumb move, he also moved his arm down when thiago apparently positioned it somewhere he didn't want. Slight movements are very exciting! He is up to an hour and a half off the ventilator 2x a day now as well. This gives us some freedom of what to do with him since he doesn't have to be locked down to the vent. Very exciting. Today was the switch to the hour and half so they are going to be really looking at his weight gain here and if it isn't good tonight they may be worried to go up anymore for now. Hoping for some good weight gain this evening.
Earlier today he went in his car seat and he did fabulous. He really liked it. He slept some but tolerated it very well. If he wants to go home in a car seat he will have to tolerate 2 hours of it.. But I think he will be fine.
May has been with me at the hospital so far this week, dont think we will do that again! It is tricky to deal with both of them.. Mostly because I have to run up and down stairs to get her and drop her off for the child care they have here, and in between pumping and therapies, whew, wears me out just typing it. Hoping these weeks in the nicu could be over soon. This hospital life is really starting to tire me out in general. But I dont really think being home will be any easier but it will be more togetherness.
time to take a nap! Ha, I wish. . .
After we came back to the hospital from our few days off, sol had a new trick for me. He has started to move his thumb, that same evening we saw his thumb move, he also moved his arm down when thiago apparently positioned it somewhere he didn't want. Slight movements are very exciting! He is up to an hour and a half off the ventilator 2x a day now as well. This gives us some freedom of what to do with him since he doesn't have to be locked down to the vent. Very exciting. Today was the switch to the hour and half so they are going to be really looking at his weight gain here and if it isn't good tonight they may be worried to go up anymore for now. Hoping for some good weight gain this evening.
Earlier today he went in his car seat and he did fabulous. He really liked it. He slept some but tolerated it very well. If he wants to go home in a car seat he will have to tolerate 2 hours of it.. But I think he will be fine.
May has been with me at the hospital so far this week, dont think we will do that again! It is tricky to deal with both of them.. Mostly because I have to run up and down stairs to get her and drop her off for the child care they have here, and in between pumping and therapies, whew, wears me out just typing it. Hoping these weeks in the nicu could be over soon. This hospital life is really starting to tire me out in general. But I dont really think being home will be any easier but it will be more togetherness.
time to take a nap! Ha, I wish. . .
Tuesday, February 9, 2016
hitting the charts
If you are on my facebook, you have seen my post about Sol's weight chart. I am pretty excited about it, he is almost hitting the charts! Which is amazing to me! We knew with Lua that she probably wouldnt hit the charts because of the lack of muscle, she either did hit it right before she passed away or she was just about to, I can't remember. But Sol, almost 7 weeks old, is getting pretty close to hitting the charts! I had just talked to the doctors about his weight and if they wanted him on the charts or if the lack of muscle comes into play, or what they wanted to see. Previously they told me that he seems to be making his own curve on the chart and as long as he was gaining, that was the important thing. So then last week I asked this question, and the neonatologist said she had talked to the pulmonary doctor and she said to not expect him to be on the charts. They don't have enough kiddos to know exactly what the normal rang would be for them, so it is okay if he doesn't ever get on the charts or anything. But then the neonatologist showed me his chart and she said, except he is inching his way onto the charts and if he keeps going on this path he will for sure be on the charts. The last three days he gained 86 grams, 50 grams, and 58 grams last night! He must seriously want to get home! So this is great and exciting news! I really don't expect him to gain much tonight, as long as he doesnt lose! that would be great! We don't want him to get just fat going on so we dont want him gaining too much, but what he is doing now is looking really good! I'm very proud and can't believe he is so close to hitting the charts.
I am terribly sad that I am still home and not with him :( It is really hard to be far from him. I am trying to just finish everything I need to this week so I won't have to make any other trips back home before he gets to go home, if I can do that then I will be happy with our short trip back home, but if I don't get everything done and have to make another trip before we go home, I'll be pretty bummed out. But my mom is doing a great job being with Sol. I heard someone told her she gets the grandma of the year award... That is Totally true!!
I ended up facetiming my mom while she was holding Sol this evening, when I started talking I could see his little eyes looking all around, almost like he was looking for me! I don't really think he was, but he timed it pretty well and makes me miss him SO MUCH. I am aching to get back to him!
And when we get back, I am really anxious to get a family picture of us all. I was able to get a big picture of Lua made up and framed so we can finally add her to some of our pictures. Gone but never forgotten.
I am terribly sad that I am still home and not with him :( It is really hard to be far from him. I am trying to just finish everything I need to this week so I won't have to make any other trips back home before he gets to go home, if I can do that then I will be happy with our short trip back home, but if I don't get everything done and have to make another trip before we go home, I'll be pretty bummed out. But my mom is doing a great job being with Sol. I heard someone told her she gets the grandma of the year award... That is Totally true!!
I ended up facetiming my mom while she was holding Sol this evening, when I started talking I could see his little eyes looking all around, almost like he was looking for me! I don't really think he was, but he timed it pretty well and makes me miss him SO MUCH. I am aching to get back to him!
And when we get back, I am really anxious to get a family picture of us all. I was able to get a big picture of Lua made up and framed so we can finally add her to some of our pictures. Gone but never forgotten.
Sunday, February 7, 2016
trip to home.
I finally have gotten a chance to get to my laptop. Feels great to make an update while typing on a keyboard and not my silly phone! But it is not for a really good reason that I am able to get to my laptop. We are having a hard time catching a break with sicknesses. I am still trying to get over the cold May got two weeks ago! Then this morning, May ended up throwing up at the hospital. We arent sure if she caught a stomach bug, or if it is food poisoning. We both had some english muffins for breakfast, after I ate it I felt really nauseous but it went by pretty fast, she didn't end up throwing up until 2 hours later. It is hard to know what is going on, but for Sol's safety we decided that we would all go back home for a few days in case we all get infected with this possible bug. It is taking me so long to get over this cold, I don't even know if I can handle a stomach bug on top of it all so I don't want to try to push myself and make things worse. May had been throwing up about every two hours after she threw up the first time. She threw up once on the ride home but hasn't puked any more since, I am hoping she will be done with it now. It is very hard for me to be away from Sol. I am just too weak to the fact he may be in his room crying and no one knows, and no one will be there to hold him :( it breaks my heart! Thankfully, my wonderful parents stepped in and were willing to go there tonight so my mom can be with him the next few days while we figure out what is going on with May. I am so thankful, other wise I would probably be here crying missing him and him being alone! I know the nurses are good, but they have other things to do, they cant spend 10 hours straight with him like I do or my mom can do. I feel so much better knowing he has someone there for him.
We did have a nice visit with my cousin this morning before the puking fun began. Sol is a little easier to hold than Lua was, her big head made things a little trickier to hold her, but Sol has this insane short small neck and is a pretty good cuddle bug, so our visitor got to hold him today, which is good that he had someone to hold him while we ended up dealing with the puking fit! That was a nice help to have another set of hands to hold and help him get out of his crib for awhile.
If I have to be home, at least tomorrow I get to see our doggie for the first time in 6 weeks! If he understood death, he probably thinks I died because it has been so long since I have seen him. I'm not going to lie.. I am a little excited to see the pup! I hope May is feeling better by tomorrow so she can enjoy seeing Mallo too!
I can finally put a picture on here of Sol and how much he has changed. His arms have gotten a lot more relaxed and loose. His legs are still pretty high and tight, I think this will be a very long progress. I was just talking to Thiago about the possibility of him needing to have casting done to help his knees, but I remember hearing an ortho doc say how you need to take into consideration the consequences of what the casting. Casting will make things heavy and limit movement and he is in no shape to be having anything that limits his movements and giving him more possible muscle atrophy. I don't think he is that bad to need casts at this point and I think he is too weak to have the casts be beneficial in the end... so that probably wont be the case, I Know it isnt the case right now... if some how down the road he gets very strong and his contracted knees become something that limits him from walking or crawling one day, they may consider it at that point I'm guessing. He also had his hip ultrasound last week, it sounds like they are exactly how Lua's were. They haven't heard from ortho, but the reading said they were barely in socket. The way they explained it for Lua was the hip ball was in the socket but the bone didn't make a strong enough groove into the socket so it was very possible for her hips to come out at some point. That sounds like it is the same case for Sol. If his hips are out, we won't do anything, possibly ever. You can walk with dislocated hips, they arent suppose to cause any pain, so as long as he isnt in any pain and if the possibility to walk comes up one day and the hips are stopping him (like the knees again) than surgery would be necessary. But right now they are going to do my favorite thing which is just to keep an eye on them and wait to see what happens. They don't do surgery on hips until age of 2, I believe anyway, we have time. We need to focus on the breathing issue and getting bigger and stronger and keeping away from any sicknesses that may come up.
Speaking of breathing, Sol has been going strong with his trach collar trials. Today he did 45 mins off the vent. He can do 2x a day but because we arent there I figure maybe he shouldn't do it while no one is there just in case something comes up, I want to be there to know what exactly happened. I don't think anything would, but just in case. Maybe tomorrow if my mom can be there for both times, we will see. He is getting close to an hour 2x a day. That is a pretty good. I am not really in any huge rush for this trach collar, I would love for him to be off of the vent during the day for good, but since he needs to grow and get stronger to be able to go to the home vent so we can go home, I feel like we need to work on that first. His volume that he is pulling in is getting bigger and bigger, which is great, it really shows that he is growing and his lungs are doing good. I am so proud of him, he is so much stronger than I could ever be, that is for sure!
Love my little dude, ugh I miss him already...
We did have a nice visit with my cousin this morning before the puking fun began. Sol is a little easier to hold than Lua was, her big head made things a little trickier to hold her, but Sol has this insane short small neck and is a pretty good cuddle bug, so our visitor got to hold him today, which is good that he had someone to hold him while we ended up dealing with the puking fit! That was a nice help to have another set of hands to hold and help him get out of his crib for awhile.
If I have to be home, at least tomorrow I get to see our doggie for the first time in 6 weeks! If he understood death, he probably thinks I died because it has been so long since I have seen him. I'm not going to lie.. I am a little excited to see the pup! I hope May is feeling better by tomorrow so she can enjoy seeing Mallo too!
I can finally put a picture on here of Sol and how much he has changed. His arms have gotten a lot more relaxed and loose. His legs are still pretty high and tight, I think this will be a very long progress. I was just talking to Thiago about the possibility of him needing to have casting done to help his knees, but I remember hearing an ortho doc say how you need to take into consideration the consequences of what the casting. Casting will make things heavy and limit movement and he is in no shape to be having anything that limits his movements and giving him more possible muscle atrophy. I don't think he is that bad to need casts at this point and I think he is too weak to have the casts be beneficial in the end... so that probably wont be the case, I Know it isnt the case right now... if some how down the road he gets very strong and his contracted knees become something that limits him from walking or crawling one day, they may consider it at that point I'm guessing. He also had his hip ultrasound last week, it sounds like they are exactly how Lua's were. They haven't heard from ortho, but the reading said they were barely in socket. The way they explained it for Lua was the hip ball was in the socket but the bone didn't make a strong enough groove into the socket so it was very possible for her hips to come out at some point. That sounds like it is the same case for Sol. If his hips are out, we won't do anything, possibly ever. You can walk with dislocated hips, they arent suppose to cause any pain, so as long as he isnt in any pain and if the possibility to walk comes up one day and the hips are stopping him (like the knees again) than surgery would be necessary. But right now they are going to do my favorite thing which is just to keep an eye on them and wait to see what happens. They don't do surgery on hips until age of 2, I believe anyway, we have time. We need to focus on the breathing issue and getting bigger and stronger and keeping away from any sicknesses that may come up.
Speaking of breathing, Sol has been going strong with his trach collar trials. Today he did 45 mins off the vent. He can do 2x a day but because we arent there I figure maybe he shouldn't do it while no one is there just in case something comes up, I want to be there to know what exactly happened. I don't think anything would, but just in case. Maybe tomorrow if my mom can be there for both times, we will see. He is getting close to an hour 2x a day. That is a pretty good. I am not really in any huge rush for this trach collar, I would love for him to be off of the vent during the day for good, but since he needs to grow and get stronger to be able to go to the home vent so we can go home, I feel like we need to work on that first. His volume that he is pulling in is getting bigger and bigger, which is great, it really shows that he is growing and his lungs are doing good. I am so proud of him, he is so much stronger than I could ever be, that is for sure!
Love my little dude, ugh I miss him already...
Seconds old
2 Weeks
1 Month
6 Weeks
Friday, February 5, 2016
A+
Sol had an over all good week. I have been worried off and on that he might be getting sick, the cold May gave to everyone, but so far he hasn't really shown any signs that he is getting or got sick. I'm hopeful the breast milk did its job and kept him protected from the cold.
This week he has been gaining weight, his style, he has one day of a big amount and then a little smaller the next then very few grams the next until the next day big amount. He does his own little thing with that so.... Oh well as long as he is gaining. He is just about 7lbs 2oz, almost 2 pounds up from his birth weight. He did some more trach collar trials this week. First day was the 30mins and he did well so well they gave him an hour the next day. Maybe I've talked about this already.. But we did it right after ot/pt again and he wanted to sleep really bad about 40 mins into it.. At that point he was so close I tried to distract him until I needed to pump.. I put him down thinking it would wake him up but he ended up crying for the next 10 mins and the nurse told everyone it was because he got too tired doing the trial, he was tired from therapy, and he was crying, she thought he was struggling to breathe but she wasn't in the room and didn't know he had been crying for awhile already. I was going to try to clear this up with her but she went and told the neonatologist that he is too weak to do an hour long trial, she did this before I could even finish pumping. I know she is extra cautious and that is good but keeping up with telling doctors how weak he is is only going to cause him to have to show over and over again that he can do things so I am disappointed that she did this with out understanding exactly what was going on. Anyway because of what she said they switched him to 30mins 2x a day instead of an hour. He did so good earlier today and he gained 64grams last night, he will hopefully be bumped up again on the time regardless.
The boy is a daaaare devil! I am amazed by him every day. One night this week I called to check on him and the nurse asked if he liked being on his belly.. I said I don't know pt/ot haven't gotten there yet. She said oh well he js on his belly now and loving it. I was shocked... We never did it before I had no idea how he would handle it and really made me nervous but it seems like he did fine with it. I told the therapists the next day and they almost had a heart attack. They really want to be the ones to try new positions so they can see where his limbs are going and that he is being supported where he needs to be. So therapists decided they would put him on his tummy so they can see what he does.
They rolled him all the way around and manipulated him A LOT and he handled it amazingly. I was holding my breath and hardly watching in fear of him dropping his heart rate or oxygen levels, but he didn't. He got a little mad but calmed down after he got use to it. I agree with the nurse who put him on his tummy that it is nice to get him off his head.. But he doesn't have the best range to his neck just yet... So it is tricky!
Sol also got a belly binder this week, something that will help support his abdomen a little better, especially when he is going to be manipulated like going on tummy, or being moved to a bouncer, which he got to do today and he did very well with it!
He also had a bath in a tub this week... It was waaay too small and he was waaay crammed, so we will have to try again with a bigger tub next tito. He hated it other wise!
Today was a big day to me.. I did my first teach change on him. Man I hate trach changes sooo much. On the count of three we do the switch and when I went to put it in, I met a little resistance and couldn't get the trach in. I almost gave up and gave it to the nurse but told myself it HAS to go in so I pushed through the nerves and fumbled the trach in somehow. I was so nervous from it I could hardly stop my hands from shaking, but they said he never dropped from 100% while I was struggling to get it in. Again, the boy shocks me all the time.
Speech therapist told us she is still seeing improvements with him every day. She doesn't always see babies make improvements daily but usually weekly, but sol has been improving something every time she sees him. He is really learning quickly when she shows him things with his mouth. He is swallowing the best he can and we are noticing him having less and less secretions. He is closing his lips around swabs to get a good suck going, he smacks while sucking on the nuk, he is just doing an amazing job with his mouth. He has a long ways to go of course, but it is great he is getting stronger and not weaker.
I spent more time reading to him this week. He loves looking at everything, just like lua, so he loves the colorful pages in the books and he likes watching me read to him. I also realized that his biggest movement is in his legs and we need to maximize what he can do with them, if we do that, there could potentially be very few things he would not be able to do in life, things he can't do with his arms could be done with legs, at least enough to get by. So I was thinking how babies play with toys. I bought sol an elephant rattle long time ago and I decided to put it where I knew his legs could move it enough to make a sound. I had to show him a few times how to move his leg up and down and it would make a noise. He seemed to like it. So we kept doing it. I stopped and went back to it later, and even this morning, he knew exactly what to do, he actually brought his leg up and down to shake it, compared to me having to bring his leg back down for him. What a smarty pants. Speech therapist loved this! She said he gets an A+++ for today and all the things he is learning.
We had another teach class today and as well as this week has went, the class really overwhelmed me. I forget how stressful life is when you are at home with your baby that has a trach. I'm really nervous on how this will go and hope I have the strength to get though it, not the fake strength of I'm doing this because I know I have to and have no choice, but because I actually have the strength to do it. I'm nervous.. But as everyone as been telling us, we have lots of time.
This week he has been gaining weight, his style, he has one day of a big amount and then a little smaller the next then very few grams the next until the next day big amount. He does his own little thing with that so.... Oh well as long as he is gaining. He is just about 7lbs 2oz, almost 2 pounds up from his birth weight. He did some more trach collar trials this week. First day was the 30mins and he did well so well they gave him an hour the next day. Maybe I've talked about this already.. But we did it right after ot/pt again and he wanted to sleep really bad about 40 mins into it.. At that point he was so close I tried to distract him until I needed to pump.. I put him down thinking it would wake him up but he ended up crying for the next 10 mins and the nurse told everyone it was because he got too tired doing the trial, he was tired from therapy, and he was crying, she thought he was struggling to breathe but she wasn't in the room and didn't know he had been crying for awhile already. I was going to try to clear this up with her but she went and told the neonatologist that he is too weak to do an hour long trial, she did this before I could even finish pumping. I know she is extra cautious and that is good but keeping up with telling doctors how weak he is is only going to cause him to have to show over and over again that he can do things so I am disappointed that she did this with out understanding exactly what was going on. Anyway because of what she said they switched him to 30mins 2x a day instead of an hour. He did so good earlier today and he gained 64grams last night, he will hopefully be bumped up again on the time regardless.
The boy is a daaaare devil! I am amazed by him every day. One night this week I called to check on him and the nurse asked if he liked being on his belly.. I said I don't know pt/ot haven't gotten there yet. She said oh well he js on his belly now and loving it. I was shocked... We never did it before I had no idea how he would handle it and really made me nervous but it seems like he did fine with it. I told the therapists the next day and they almost had a heart attack. They really want to be the ones to try new positions so they can see where his limbs are going and that he is being supported where he needs to be. So therapists decided they would put him on his tummy so they can see what he does.
They rolled him all the way around and manipulated him A LOT and he handled it amazingly. I was holding my breath and hardly watching in fear of him dropping his heart rate or oxygen levels, but he didn't. He got a little mad but calmed down after he got use to it. I agree with the nurse who put him on his tummy that it is nice to get him off his head.. But he doesn't have the best range to his neck just yet... So it is tricky!
Sol also got a belly binder this week, something that will help support his abdomen a little better, especially when he is going to be manipulated like going on tummy, or being moved to a bouncer, which he got to do today and he did very well with it!
He also had a bath in a tub this week... It was waaay too small and he was waaay crammed, so we will have to try again with a bigger tub next tito. He hated it other wise!
Today was a big day to me.. I did my first teach change on him. Man I hate trach changes sooo much. On the count of three we do the switch and when I went to put it in, I met a little resistance and couldn't get the trach in. I almost gave up and gave it to the nurse but told myself it HAS to go in so I pushed through the nerves and fumbled the trach in somehow. I was so nervous from it I could hardly stop my hands from shaking, but they said he never dropped from 100% while I was struggling to get it in. Again, the boy shocks me all the time.
Speech therapist told us she is still seeing improvements with him every day. She doesn't always see babies make improvements daily but usually weekly, but sol has been improving something every time she sees him. He is really learning quickly when she shows him things with his mouth. He is swallowing the best he can and we are noticing him having less and less secretions. He is closing his lips around swabs to get a good suck going, he smacks while sucking on the nuk, he is just doing an amazing job with his mouth. He has a long ways to go of course, but it is great he is getting stronger and not weaker.
I spent more time reading to him this week. He loves looking at everything, just like lua, so he loves the colorful pages in the books and he likes watching me read to him. I also realized that his biggest movement is in his legs and we need to maximize what he can do with them, if we do that, there could potentially be very few things he would not be able to do in life, things he can't do with his arms could be done with legs, at least enough to get by. So I was thinking how babies play with toys. I bought sol an elephant rattle long time ago and I decided to put it where I knew his legs could move it enough to make a sound. I had to show him a few times how to move his leg up and down and it would make a noise. He seemed to like it. So we kept doing it. I stopped and went back to it later, and even this morning, he knew exactly what to do, he actually brought his leg up and down to shake it, compared to me having to bring his leg back down for him. What a smarty pants. Speech therapist loved this! She said he gets an A+++ for today and all the things he is learning.
We had another teach class today and as well as this week has went, the class really overwhelmed me. I forget how stressful life is when you are at home with your baby that has a trach. I'm really nervous on how this will go and hope I have the strength to get though it, not the fake strength of I'm doing this because I know I have to and have no choice, but because I actually have the strength to do it. I'm nervous.. But as everyone as been telling us, we have lots of time.
Tuesday, February 2, 2016
busy day.
Today was a very full day! We have been waiting for our pulmonary doctor to come back on and find out what we have to do to get cracking at this home vent situation. I was really bummed to find out we have to wait until he is 4kilos before he can even try the home vent on pressure support. He is 3kilos now and his average weight gain has been 30 grams a day.. That is going to take us a month before he can even try the vent, then he has to adjust to it, and then we have to switch over to the step down unit, finish trach classes, finish training, and set up everything for home, then we can look at going home. So we will be here for Easter for sure, and who knows how much longer after that. Our second Easter in the hospital.
But to throw us a bone here, our doctor did give the go ahead to try trach collar trials. We get 30 mins to start of him getting off the vent, so he does all the breathing on his own with just humidified air to keep him from getting dry. Today we got to do the first trial, and he did great. They didn't want him sleeping during it because they want to give him the best outcome possible, and he stayed awake for most of it but we had to struggle to keep him awake! The last 5 mins he went to sleep. I had them do it right after physical therapy because yesterday he was so wide awake for so long, and I thought he would do the same. But he got too comfy to a point all my picking on him just wasn't going to work. He looked great and tolerated it like a rock star. The neonatologist was really impressed and said if he does well the next few days they will give him more time off of it.
I also asked if we could give him a bath in a tub and they said yes that would be fine. So we did that today.... The tub was waaay to small for him and he pretty much hated the experience, poor thing... But we will get him a bigger tub next time!
During pt/ot they sat him completely upright and he tolerated it very well until he was tired of it. But he didn't drop his heart rate or oxygen, his color in his face looked good.. He did really well, a very strong little boy! Strong for his condition I mean. For healthy babies this probably doesn't sound all that impressive but any goal he completes is worth noting and praising, because doctors were certain he wouldn't even survive birth. Sol definitely has his own ideas and timing down, no one can plan things for him!
He also worked really hard with swallowing during speech. She must have gotten him to swallow 10 times.. The little guy worked really hard all day today! I heard this morning that they came in and talked about the plan for today next to sol and sol must have liked what he heard because he gave them all a bunch of smiles.
I think he also heard the weight gain scare too because he gained 96grams yesterday. Hoping he gained something tonight! Need to work towards that 4 kilo mark!
It has been hard having our family divided. Thiago has to go back to work, especially since it looks like we will be here for so long now. This part is hard to have our lives so separated. My mom is staying with me this week. It gets really lonely being at the hospital by your self and having to listen to allll the doctors with no second set if ears to help you remember every thing. I am grateful for her staying. I wish we didn't have to do this though. Yet I am trying not to get to hung up on it because I missed these days in the nicu with lua. As hard as they are I would go back and do them again to be with her. I dont want to take any day with sol for granted because no one knows when it will be the last day. I dont mean just him and because he has a medical condition, because all of us will one day expire....but each day I love him more and more. He is such a sweet little baby, I really dont want to lose him.
But to throw us a bone here, our doctor did give the go ahead to try trach collar trials. We get 30 mins to start of him getting off the vent, so he does all the breathing on his own with just humidified air to keep him from getting dry. Today we got to do the first trial, and he did great. They didn't want him sleeping during it because they want to give him the best outcome possible, and he stayed awake for most of it but we had to struggle to keep him awake! The last 5 mins he went to sleep. I had them do it right after physical therapy because yesterday he was so wide awake for so long, and I thought he would do the same. But he got too comfy to a point all my picking on him just wasn't going to work. He looked great and tolerated it like a rock star. The neonatologist was really impressed and said if he does well the next few days they will give him more time off of it.
I also asked if we could give him a bath in a tub and they said yes that would be fine. So we did that today.... The tub was waaay to small for him and he pretty much hated the experience, poor thing... But we will get him a bigger tub next time!
During pt/ot they sat him completely upright and he tolerated it very well until he was tired of it. But he didn't drop his heart rate or oxygen, his color in his face looked good.. He did really well, a very strong little boy! Strong for his condition I mean. For healthy babies this probably doesn't sound all that impressive but any goal he completes is worth noting and praising, because doctors were certain he wouldn't even survive birth. Sol definitely has his own ideas and timing down, no one can plan things for him!
He also worked really hard with swallowing during speech. She must have gotten him to swallow 10 times.. The little guy worked really hard all day today! I heard this morning that they came in and talked about the plan for today next to sol and sol must have liked what he heard because he gave them all a bunch of smiles.
I think he also heard the weight gain scare too because he gained 96grams yesterday. Hoping he gained something tonight! Need to work towards that 4 kilo mark!
It has been hard having our family divided. Thiago has to go back to work, especially since it looks like we will be here for so long now. This part is hard to have our lives so separated. My mom is staying with me this week. It gets really lonely being at the hospital by your self and having to listen to allll the doctors with no second set if ears to help you remember every thing. I am grateful for her staying. I wish we didn't have to do this though. Yet I am trying not to get to hung up on it because I missed these days in the nicu with lua. As hard as they are I would go back and do them again to be with her. I dont want to take any day with sol for granted because no one knows when it will be the last day. I dont mean just him and because he has a medical condition, because all of us will one day expire....but each day I love him more and more. He is such a sweet little baby, I really dont want to lose him.
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