Sol has been doing well lately. He has really been making me so proud, and our hard days are not necessarily about him and his health lately. He is continuing to practice his head control, he is loving kicking on his gym, moving his fingers a little more, and yesterday he was rotating his wrists. His movements and strength is very small, but compared to none, it is huge. His breathing has been doing okay, I did suction out some blood yesterday night and I have no clue why, maybe he got too dry during the day or I don't know why. The last few days he has been making many attempts to swallow and I can certainly tell a difference since I am down to suctioning a couple times an hour compared to many times an hour. We decided to add outpatient speech therapy to our list of doctor appointments. We only had an evaluation last week but our plan is to go twice a week and we will see what happens.
There is something difficult about how well Sol does. The better he gets, the more guilt I have. The more I believe that if we would have taken the same steps with Lua, she would still be here and doing just as well as he is. I am so happy how well he is doing but it is proof that our previous hospital failed us. I believe that we are the parents to ultimately it is our responsibility and we are at fault, BUT, we are not doctors and until Lua we never knew anything about muscle conditions, how were we to know? It was only after many struggles with Lua did I look into what other help was out there. I was afraid to initially switch hospitals though. I kept telling myself that we would check out Madison as soon as things cooled down. She then got sick and thinking after she got better we would look at another hospital. I actually heard of a pulmonary doctor in New Jersey and I contacted him and we discussed a plan for Lua. Thiago and I decided that we would use the money from Lua's benefit and go to New Jersey and see this doctor. That was just a few days before she passed away. We wanted to go when she got better of course, but it was too late by then.
This is the problem with our medical system. From our point of view the hospital we were at with Lua was too proud to tell us up front that they don't know much about this condition and we should seek help from another facility, another doctor, another hospital if we wanted to provide a longer life for her. Maybe they don't see it that way, maybe they think they did do everything they could for us, but regardless if they will admit to this or not, their beliefs are not for quantity of life but quality. Which is why when a baby with SMA is born the hospital will say take them home and love them because they will pass away shortly. The reason they will pass away shortly is because this hospital doesn't want to prolong a life they believe is not worth living. This is the difference between the doctors we had then and the doctor we have now. She believes kids with SMA can have a happy prolong life. She believes in the parents and their wishes. In the end it is up to us to decide what we want for our children. I understand completely parents who do decide to take the route of giving the best life they can to their children but not prolonging it. I get it, there are many, many things to take into consideration for a parent to get to this point, and I truly get it. I also get why parents want as many years as they can get. It IS the parents choice, not the hospitals. Give us information on each decision and let us decide.
I wish very badly that this is something the milwaukee childrens would change. Their style is old style. We talked to our current doctor a lot about this, we know that they have all the information that Madison has but they are choosing not to use it. Why? Is it because they think babies like ours aren't worth it to fight for? We were told many times with Lua how much work she would be. Oh it is going to be so much work, she is going to need so much care, do you understand how much work it will be... Allllll the time I heard this. I got so tired, so so so exhausted from hearing this. You know what... I never heard this at madison. I never had a time I went into the NICU and they told me all the bad things that could happen. I actually had doctors say how they were so impressed with him and how they love how much he was changing and improving. He made all the doctors in Madison very proud. It was Crazy!!
Well I had to stop writing this after awhile and now I can't get back into my train of thought so I suppose I will have to end this. My point to it all is milwaukee needs to change at least for the parents who want the change.
Thursday, June 23, 2016
Thursday, June 9, 2016
apple tree.
Our awesome neighbor had some tree guys over, arborists I guess is the right term, and they happened to have some apple trees on discount. We got one and they planted it for us and also replanted our other tree in the yard. I love trees, a lot, so this is exciting. Not only will this tree be able to grow with Sol, but it was planted one day after our niece was born! The very next day I drug the kids out there to get their pictures taken with the tree. Sol hated this, but I was really proud of May, she held Sol all by herself! Some adults can't do this! She is a great big sister!
Sol had his well child check up today. He is now 15lbs 13oz and in the 25% on weight! This the kid they told me would never hit the charts on his weight gain. His height has always been measured from head to rump so they cant get an exact on his length, but for consistently measuring that way he has grown 2 more inches (thats just head to rump!) He is looking good, he does have a butt rash that has been going on for awhile, we found out he cant tolerate the type of cream we have been using He also has a little ouchie on his ear that we got looked at. Everything else is going well with his overall health. He did get shots, along with his big sister and they are now both pretty tuckered out.
Tomorrow we head to madison for another doctor appointment. He is scheduled to have his trach up-sized, we will see what happens.
Another big day of traveling for him, I am hoping it will go well. I am also hoping the up-sizing the trach will be a good thing. If he didn't need the trach for a long term time frame, he wouldn't need to be upsized, so the fact he is getting a bigger one means trach for many more years. But it also, hopefully means, he will be able to move air better and need less suctioning. All we can do is go day by day.
Some days have been very hard and bleak, especially when we started to have to deal with his swallowing difficulties. The last few days, although, have been good. We started the summer with a bang. My niece was born on the 2nd and May and I got to see her before she was 24 hours old! Then Sol got to meet her a few days later! May has been having friends over, and yesterday we went to the zoo with one of her friends. It was a great day for everyone and it was a ton of fun! I am appreciative to have a nurse so we can do these few things. I really wish there wasn't a need for Sol to have a nurse every day, but at least we are going forward. The best thing is how strong Sol is getting. Recently he has been sticking out his tongue a lot, his legs are kicking like crazy and he LOVES to be on his gym. Every day we are doing it now just because he loves it so much. His neck is getting stronger, he also moved his pinkie this last week, and he has been making noise over his trach too. It really gives me hope for all the things that could possibly come. I hope he is able to pick an apple from our apple tree some day!
On another note...
Some day I would like to write a letter to parents who live in wisconsin and find out their child has a neuromuscular disease, and all the bits of information that we have found on our journey. I know some people have done this, but I believe every person's journey is different and it never hurts to get more information on situations. I think that will require me to have a long time to sit down and really think things through so it is written well and full of all the information we have learned, so that may be coming up, it isn't today, but coming.
On another another note... (copied from his facebook page
https://www.facebook.com/groups/1579362122354190/permalink/1614047012219034/?comment_id=1614062268884175¬if_t=group_comment¬if_id=1465521088722709 )Tomorrow we head to madison for another doctor appointment. He is scheduled to have his trach up-sized, we will see what happens.
Another big day of traveling for him, I am hoping it will go well. I am also hoping the up-sizing the trach will be a good thing. If he didn't need the trach for a long term time frame, he wouldn't need to be upsized, so the fact he is getting a bigger one means trach for many more years. But it also, hopefully means, he will be able to move air better and need less suctioning. All we can do is go day by day.
Some days have been very hard and bleak, especially when we started to have to deal with his swallowing difficulties. The last few days, although, have been good. We started the summer with a bang. My niece was born on the 2nd and May and I got to see her before she was 24 hours old! Then Sol got to meet her a few days later! May has been having friends over, and yesterday we went to the zoo with one of her friends. It was a great day for everyone and it was a ton of fun! I am appreciative to have a nurse so we can do these few things. I really wish there wasn't a need for Sol to have a nurse every day, but at least we are going forward. The best thing is how strong Sol is getting. Recently he has been sticking out his tongue a lot, his legs are kicking like crazy and he LOVES to be on his gym. Every day we are doing it now just because he loves it so much. His neck is getting stronger, he also moved his pinkie this last week, and he has been making noise over his trach too. It really gives me hope for all the things that could possibly come. I hope he is able to pick an apple from our apple tree some day!
Wednesday, June 8, 2016
the hammock.
Babies with arthrogryposis multiplex congenita develop this due to the lack of movement in utero. There are many reasons why there is the lack of movement, if it be that the muscle didn't form which leads to no movement, some cases there isn't enough fluid for baby to move, I've read that sometimes the cord can cause contractures as well. Each child has a different reason as to why they didn't move. We know our babies didn't move because they lack skeletal muscle to give them the strength to move. As they get/got bigger they can take the muscle they have to work with and make that as strong as they can and work with what they have. I never saw any movement from Lua's core, trunk area. I was told at the hospital that it seemed she lacked all muscle in her back, so I was never sure if she would or wouldn't ever move her trunk area. I tried to work with her on that, but it is hard to try to activate those muscles in that area and notice movement from a weak baby. The most we did to work with her was sitting up, sitting up against pillows, or holding her in sitting up position and she did well with all of that. We did tub time where she could move her little body, but because of the trach we never filled the water up too much to protect her from water coming in. I had plans to take her to an aquatic center which would have been easier to hold her in and what not, but we never made it there. So I was never aware of any progress that we made with her core. Sol was pretty much the same. I never saw movement from his trunk, I'm not sure how much muscle he has there, we are continuously told by the speech therapist that he wont get better at his swallowing unless his core gets stronger. I was trying to think of what we could do so he could try to activate his core. He doesn't tolerate sitting up well unless I am holding him up. He aspirates too much saliva to get a good work out from sitting up assisted with pillows and what not. His swing as too much support to actually have him activate those muscles in my opinion. The tub is the same with Lua, we can't fill it enough to really help him be free in that area and it be safe. I was trying to figure out what we could do so he could lay free and feel his whole body move but also be contained in something that was somewhat supportive. The hammock came to mind. I thought about this for awhile and it sounded like a good idea. So I took a blanket and tied to two chairs and safely held him in there. It swings, he feels all of it, he LOVED it. I went on amazon and bought a baby hammock.
Best. Buy. Ever.
It is exactly what I was looking for. When we got the hammock and put him in there, the first few seconds I saw his trunk area do a little shimmy, shake, shake. He loves it. He smiles, He swings. He is free yet supported and I think this will help activate the rest of his body that we can't quite activate for him. I highly, Highly, recommend a baby hammock for any kiddo that has weak trunk area. I actually recommend a baby hammock for any baby! They are awesome, it is kind of like a sling that you would use to wear a baby but you lay it out and let the baby swing by themselves. I am so happy I thought of this idea. He has gone in it a little each day. The first few times he was in it, he was so happy and he didn't require a ton of suctioning, his oxygen level was 100% and his heart rate was 120s, which is lower than his normal of 140s. He was just so content and relaxed in it. If nothing else it is a great thing to let the babies relax on.
Recently Sol has also started to bob holding his head up. He can some what support his head if we sit holding him upright and balance his head. The longest he has held up his head is about a minute. Small amount, small start, but great progress!!! I just keep thinking where he will be in 5 months from now. Hard to say, as long as he continues to improve that is my ultimate goal. He has been feeling pretty well lately too. This weekend we went to see his new baby cousin! And he had a great day. Very little suctioning required, he did great on the car drive, there and back. He had just the best day we have had in a very long time! It has taken us all week to recover from that, but thats okay. We have another trip we are going to make, to madision, on friday and hopefully he does just as well for that trip. I am so proud of him and all the strides he is making. He is one tough little man.
He has also been working on his little gym and his leg movements are going wild! Another thing he absolutely loves! When we had Lua, I strapped balls to her legs to let her move, and she could move like crazy doing that, and she loved it! I didn't see this type of gym, that is actually for SMA kiddos, until we were at the hospital in Madison. This is another must have for kiddos with low muscle tone, contractures, and that are weak. It really helps them to feel free.
There are so many tricks out there to help babies like ours get movement in, and the great thing about all of these things is the fact that the more they work at it, the stronger they potentially can get. The stronger they get, better quality of life they can have. It is one of the things I enjoy through all of this, trying to find new, unique ways to get them to move like we do. I just love to want him and see how happy he gets getting in his hammock, or how much he enjoys kicking his legs around. He gives the biggest smiles. It really is the best feeling in the world. Someone told me once, or I read somewhere, that is the thing about having kids that are different able, it means so much more when they hit mile stones, it is a much bigger deal when they accomplish a new task or experience a new thing. I almost cried when I felt Sol take his head away from my hand and hold his head up on his own.
Those are the moments you live for.
Best. Buy. Ever.
It is exactly what I was looking for. When we got the hammock and put him in there, the first few seconds I saw his trunk area do a little shimmy, shake, shake. He loves it. He smiles, He swings. He is free yet supported and I think this will help activate the rest of his body that we can't quite activate for him. I highly, Highly, recommend a baby hammock for any kiddo that has weak trunk area. I actually recommend a baby hammock for any baby! They are awesome, it is kind of like a sling that you would use to wear a baby but you lay it out and let the baby swing by themselves. I am so happy I thought of this idea. He has gone in it a little each day. The first few times he was in it, he was so happy and he didn't require a ton of suctioning, his oxygen level was 100% and his heart rate was 120s, which is lower than his normal of 140s. He was just so content and relaxed in it. If nothing else it is a great thing to let the babies relax on.
Recently Sol has also started to bob holding his head up. He can some what support his head if we sit holding him upright and balance his head. The longest he has held up his head is about a minute. Small amount, small start, but great progress!!! I just keep thinking where he will be in 5 months from now. Hard to say, as long as he continues to improve that is my ultimate goal. He has been feeling pretty well lately too. This weekend we went to see his new baby cousin! And he had a great day. Very little suctioning required, he did great on the car drive, there and back. He had just the best day we have had in a very long time! It has taken us all week to recover from that, but thats okay. We have another trip we are going to make, to madision, on friday and hopefully he does just as well for that trip. I am so proud of him and all the strides he is making. He is one tough little man.
He has also been working on his little gym and his leg movements are going wild! Another thing he absolutely loves! When we had Lua, I strapped balls to her legs to let her move, and she could move like crazy doing that, and she loved it! I didn't see this type of gym, that is actually for SMA kiddos, until we were at the hospital in Madison. This is another must have for kiddos with low muscle tone, contractures, and that are weak. It really helps them to feel free.
There are so many tricks out there to help babies like ours get movement in, and the great thing about all of these things is the fact that the more they work at it, the stronger they potentially can get. The stronger they get, better quality of life they can have. It is one of the things I enjoy through all of this, trying to find new, unique ways to get them to move like we do. I just love to want him and see how happy he gets getting in his hammock, or how much he enjoys kicking his legs around. He gives the biggest smiles. It really is the best feeling in the world. Someone told me once, or I read somewhere, that is the thing about having kids that are different able, it means so much more when they hit mile stones, it is a much bigger deal when they accomplish a new task or experience a new thing. I almost cried when I felt Sol take his head away from my hand and hold his head up on his own.
Those are the moments you live for.
Wednesday, June 1, 2016
new world
I have known this for awhile, but I think I am finally being able to accept that I live in a different world than most people do. I experience things some people will never ever experience, and they wouldn't want to either. It is one thing to live in a world where you are apart of a group who has had a special needs baby, I could go on to be specific and say an AMC baby. But then we joined the group of those who have lost a child. Then we joined the group where we had a special needs baby, lost a child, and had another special needs baby. If you look at that percentage wise, including the death of our daughter, that is a smaller number of people who live and experience those types of things. I know others are out there, but it is slimmer than just having a special needs child or just having a child that passed away. For some reason, today, I looked at it and said "Yep, I live in a different world than most people. Some days I'm okay with that, other days are terribly lonely, but today I feel okay with it. I can't even describe how hard it is for me to see facebook posts of perfect little families, or pictures of women who are pregnant and will have perfect little babies, that can be hard, that can be very very hard. I know I have said all of this before, but it is one of the main things I struggle with, the jealously of what seems to be other peoples perfect lives and how come I wasn't blessed to get that. I try extremely hard to push those feelings aside because I know they don't help anyone, but they are there none the less and I'd be lying if I said everything was perfect.
This holiday was a little depressing, for example. Seeing everyone going out and being on a lake or going camping, or going to the park or a parade, we can't do any of that right now. We tried to go to the furniture store in plover, a 30min drive, and it was misery! Suctioning and suctioning and so stressful, at this moment we are living in a very difficult world. We can't do things as a whole family like everyone else can. I can't take my baby with me wherever I go, we can't do vacations easily, and it is depressing. I think we still ended up having an okay weekend though. Our neighbor came over one day and had dinner with us and brought us an amazing dessert. She visited for awhile and even folded my laundry for me. The next day we spent some good outside time, all of us, the first time we all did that as a family and that did feel pretty good.
I read something the other day, although, that made me feel a little less bad about Sol's condition. When I was reading some information about congenital myopathies, it said, kids with myopathies don't hit milestones as fast as normal. That sounds depressing right? When I read that though I thought, do they ever hit milestones??? Will he Ever hit any milestones? For sure not like normal babies. But there is a reason it is worded like that, because babies with these conditions CAN hit milestones and yes it may take Years, but hitting them none the less is progress. That makes me think if we work hard enough he could hit those mile stonessome day maybe. We still don't know how much muscle he has, so what type of milestones he will reach I won't know until they are here. I'd rather read they reach milestones later than typical babies than read they wont hit them at all, even if he doesn't ever hit them because saying it that way gives me hope.
My fear at this point will always be, what if/when will I lose him. How will I possibly be able to ever live in that new world, being the person who has lost 2 kids. I know it isn't for sure he will pass away, I know though because of his condition his life span is shorter than most. Again, I feel like I am writing the same things over and over, but these are the words that run through my head daily.
Ok enough of that lame complaining stuff... Some updates.
We have nursing, I went with the nurse that wanted more hours and it is working out well. Today I had that moment that made me feel so glad I do have nursing. I got to take May to school. I got to chat a little with her friends instead of rushing out as soon as possible to get back to Sol, and I was able to go to the cafe and have some coffee with Thiago. It felt great to get out on this super nice day! And know that Sol was fine. He has actually just recently, like this week, almost fully recovered from being sick. Yeah a cold that I had for a month, kept him really down for what felt like a month and a half. Plus I think we had teething happening here as well. When this all took place Sol stopped swallowing and became crazy with the amount of suctioning, and still is, but today has been just a tad better and we have been hearing him swallowing, so maybe he is getting back on track now.
He has recently been starting to coo while on the vent. He does this almost every night now! And we can hear him cry now as well instead of just going by heart rate! Which is nice, I can hear him cry before the alarm and can get to him sooner. It is also just the best thing in the world to hear your baby! He has also started making a little noise even while being off the vent, they are small sounds but it is a great start! Birth to three has been coming out for about a month now, and I think that is going well. We are working on more things we can do with his mouth to get him to get into that swallowing more and also working on his feet and legs before we end up doing any casting and surgery. Friday we go to madison for another follow up appointment.. I think this is the first week since we've been home that I didn't call them for anything, so they are probably wondering whats going on with us.. haha, well we will see how that goes.
I wish I could write better, deeper, or a way that is more understandable? But I get interrupted frequently and then I get out of the mood to finish what I am writing which is why it is hard to update often. Oh well, any update is better than none :)
This holiday was a little depressing, for example. Seeing everyone going out and being on a lake or going camping, or going to the park or a parade, we can't do any of that right now. We tried to go to the furniture store in plover, a 30min drive, and it was misery! Suctioning and suctioning and so stressful, at this moment we are living in a very difficult world. We can't do things as a whole family like everyone else can. I can't take my baby with me wherever I go, we can't do vacations easily, and it is depressing. I think we still ended up having an okay weekend though. Our neighbor came over one day and had dinner with us and brought us an amazing dessert. She visited for awhile and even folded my laundry for me. The next day we spent some good outside time, all of us, the first time we all did that as a family and that did feel pretty good.
I read something the other day, although, that made me feel a little less bad about Sol's condition. When I was reading some information about congenital myopathies, it said, kids with myopathies don't hit milestones as fast as normal. That sounds depressing right? When I read that though I thought, do they ever hit milestones??? Will he Ever hit any milestones? For sure not like normal babies. But there is a reason it is worded like that, because babies with these conditions CAN hit milestones and yes it may take Years, but hitting them none the less is progress. That makes me think if we work hard enough he could hit those mile stonessome day maybe. We still don't know how much muscle he has, so what type of milestones he will reach I won't know until they are here. I'd rather read they reach milestones later than typical babies than read they wont hit them at all, even if he doesn't ever hit them because saying it that way gives me hope.
My fear at this point will always be, what if/when will I lose him. How will I possibly be able to ever live in that new world, being the person who has lost 2 kids. I know it isn't for sure he will pass away, I know though because of his condition his life span is shorter than most. Again, I feel like I am writing the same things over and over, but these are the words that run through my head daily.
Ok enough of that lame complaining stuff... Some updates.
We have nursing, I went with the nurse that wanted more hours and it is working out well. Today I had that moment that made me feel so glad I do have nursing. I got to take May to school. I got to chat a little with her friends instead of rushing out as soon as possible to get back to Sol, and I was able to go to the cafe and have some coffee with Thiago. It felt great to get out on this super nice day! And know that Sol was fine. He has actually just recently, like this week, almost fully recovered from being sick. Yeah a cold that I had for a month, kept him really down for what felt like a month and a half. Plus I think we had teething happening here as well. When this all took place Sol stopped swallowing and became crazy with the amount of suctioning, and still is, but today has been just a tad better and we have been hearing him swallowing, so maybe he is getting back on track now.
He has recently been starting to coo while on the vent. He does this almost every night now! And we can hear him cry now as well instead of just going by heart rate! Which is nice, I can hear him cry before the alarm and can get to him sooner. It is also just the best thing in the world to hear your baby! He has also started making a little noise even while being off the vent, they are small sounds but it is a great start! Birth to three has been coming out for about a month now, and I think that is going well. We are working on more things we can do with his mouth to get him to get into that swallowing more and also working on his feet and legs before we end up doing any casting and surgery. Friday we go to madison for another follow up appointment.. I think this is the first week since we've been home that I didn't call them for anything, so they are probably wondering whats going on with us.. haha, well we will see how that goes.
I wish I could write better, deeper, or a way that is more understandable? But I get interrupted frequently and then I get out of the mood to finish what I am writing which is why it is hard to update often. Oh well, any update is better than none :)
Tuesday, May 24, 2016
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.
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.
Tuesday, May 17, 2016
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....?
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....?
Saturday, May 7, 2016
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!
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.
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