This is going to be a tough post to write, hardest one yet. Lucy has been having it rough the past two months. So much so where her right lung was considered collapsed. Sometimes you make choices that will help or either hurt. So much pressure to make the right choice, but you don't know what that is. If Lucy gets sick again like she did before she will be getting a tracheotomy. Her quality of life would be lengthened if she gets this done. Right now we don't have to get it done, but it's out there and we will be faced to make the choice in the future. You see the thing is, I have a very fragile daughter. So much so my OB didn't think she would even be born alive. When asked by people is your daughter going to be normal and Walk one day? Crawl one day? Talk? etc....
The one thing I think of when asked this is that I just pray my daughter lives to another Birthday. I don't say it, but I think it. They even talked about Hospice with us, seriously dreadful they said it. The thing is, they don't know Lucy. She may not be mobile, but she is a tough little cookie. I was bothered they even talked about that, but I guess it's protocol for them to talk about.
Lucy came home last night, and the cpap machine confused me. I took her off it, and hopefully we can get that machine figured out tonight. The settings with oxygen are way different with a c pap. You need to crank the oxygen up to have it work right with cpap. I didn't know it would be a large amount of oxygen to compensate. We need a higher oxygen concentrator to make this work. I called my doctor and hopefully we can get this figured out today.
I feel like I live in a different world, I mentioned this to my friend Rebecca who's son has Trisomy 18. She said well we do live in a different world, she is right. It's hard to be in a normal setting and think I'm out of place. I look at family and friends and think you have no idea what I go through. It's completely frightening and terrifying. I've seen things, heard things, done things I would have never imagined going through. It helps when I do go to the hospital and see friends, meet new friends. These friends all have children that struggle. We know how it feels to go through life alone at times, and how hard it is. We aren't always strong, we cry in private. Sometimes even in public when one little thing sets us off. We notice who cares, we notice who tries to help, and we notice who doesn't. Sometimes the people that don't are those that are supposed to be closest to us. Yes, it hurts. It hurts so much at times. I honestly try to accommodate and help so when those loved ones don't, well it breaks my heart. If it wasn't for so many nice people in my life it may really tear me down. I wear my heart on my sleeve, and I have a strong will. I care so much and I'm tough too. You need to have laughter in life, or life would be awful to live. I'm optimistic as much as I can be. I'm more of a realist though and look at all angles. I think it helps me cope more in difficult times. I carry a lot of responsibility in helping my kids. My husband works all the time so we can have enough money. I know that Heavenly Father has provided opportunities for us to work to be able to make it through. I am very appreciative that we have been given those opportunities so we can be provide for our children. And if I didn't have my parents helping, I would have no idea what I would do. So, I am forever grateful for them. My dad always helps at a moments notice for anyone, I know it's harder for my mom because she is reserved. I can tell you though with her as my mom she doesn't mess around and has helped me above and beyond. I have such great parents, Lucas and I are so grateful for that.
I hope that Lucy can catch a break for a while and have her lungs work right. We need a break, I'm tired and need some relief from the chaos for a little while. I thank the people who care and have made a difference in my life. Pray that Lucy will be good for a while, she really needs to get healthier.
P.S Get your church group together and make a meal at the Ronald Mcdonald house at the hospital. Great opportunity to serve, I highly recommend it! And trick or treating at the hospital was a blast, thank you Rachel for donating some Hershey's candy. The kids were taken care of at the trick or treat and we had so much we didn't have room in our baskets. It was so neat! And some people put together little notes saying they hoped the kids got better. So, I know some people brought packages to give to the kids. It was so neat, seriously more than going through the neighborhood trick or treating, It was simply awesome!
The one thing I think of when asked this is that I just pray my daughter lives to another Birthday. I don't say it, but I think it. They even talked about Hospice with us, seriously dreadful they said it. The thing is, they don't know Lucy. She may not be mobile, but she is a tough little cookie. I was bothered they even talked about that, but I guess it's protocol for them to talk about.
Lucy came home last night, and the cpap machine confused me. I took her off it, and hopefully we can get that machine figured out tonight. The settings with oxygen are way different with a c pap. You need to crank the oxygen up to have it work right with cpap. I didn't know it would be a large amount of oxygen to compensate. We need a higher oxygen concentrator to make this work. I called my doctor and hopefully we can get this figured out today.
I feel like I live in a different world, I mentioned this to my friend Rebecca who's son has Trisomy 18. She said well we do live in a different world, she is right. It's hard to be in a normal setting and think I'm out of place. I look at family and friends and think you have no idea what I go through. It's completely frightening and terrifying. I've seen things, heard things, done things I would have never imagined going through. It helps when I do go to the hospital and see friends, meet new friends. These friends all have children that struggle. We know how it feels to go through life alone at times, and how hard it is. We aren't always strong, we cry in private. Sometimes even in public when one little thing sets us off. We notice who cares, we notice who tries to help, and we notice who doesn't. Sometimes the people that don't are those that are supposed to be closest to us. Yes, it hurts. It hurts so much at times. I honestly try to accommodate and help so when those loved ones don't, well it breaks my heart. If it wasn't for so many nice people in my life it may really tear me down. I wear my heart on my sleeve, and I have a strong will. I care so much and I'm tough too. You need to have laughter in life, or life would be awful to live. I'm optimistic as much as I can be. I'm more of a realist though and look at all angles. I think it helps me cope more in difficult times. I carry a lot of responsibility in helping my kids. My husband works all the time so we can have enough money. I know that Heavenly Father has provided opportunities for us to work to be able to make it through. I am very appreciative that we have been given those opportunities so we can be provide for our children. And if I didn't have my parents helping, I would have no idea what I would do. So, I am forever grateful for them. My dad always helps at a moments notice for anyone, I know it's harder for my mom because she is reserved. I can tell you though with her as my mom she doesn't mess around and has helped me above and beyond. I have such great parents, Lucas and I are so grateful for that.
I hope that Lucy can catch a break for a while and have her lungs work right. We need a break, I'm tired and need some relief from the chaos for a little while. I thank the people who care and have made a difference in my life. Pray that Lucy will be good for a while, she really needs to get healthier.
P.S Get your church group together and make a meal at the Ronald Mcdonald house at the hospital. Great opportunity to serve, I highly recommend it! And trick or treating at the hospital was a blast, thank you Rachel for donating some Hershey's candy. The kids were taken care of at the trick or treat and we had so much we didn't have room in our baskets. It was so neat! And some people put together little notes saying they hoped the kids got better. So, I know some people brought packages to give to the kids. It was so neat, seriously more than going through the neighborhood trick or treating, It was simply awesome!
