37…When a child is born with Cystic Fibrosis today their parents are told the average person affected with Cystic Fibrosis lives to be 37. While this is leaps and bounds from where they were just 14 or even 5 years ago it isn’t enough. A parent of a CF baby is given a timeline for their child. 18 ½ is middle aged for Sloan.
Hard facts to swallow but there is good news to follow that blow to the future.
“There is hope – there is amazing research being done and we do believe a cure will be found in your child’s lifetime.” That is what the doctors tell us. Until then we do everything we can to keep our children healthy so when the cure is found they don’t skip a beat. There is a quote I found in all the research I was doing on CF that haunts me to this day -from Germany and Switzerland in the 18th century warned "Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon must die." Thank God this is no longer the case. Thank God that while 37 is the life expectancy given we know that Cf’ers are out living this number by 10’s if not 20’s of years and while we are fighting to keep our CF’ers healthy the CF Foundation, scientist and doctors are fighting to put themselves out of business by finding the cure. I say all this to put it in perspective. Our situation is not light. Everyday we put on our game faces on as we serve applesauce covered with enzymes and salt to our two month old, pat her back so hard in hopes of knocking some mucus from her lungs (there is a certain way to do it that doesn’t hurt or harm her) and hope that the people we encounter each day aren’t going to get our baby sick. Through it all we have hope for a long long life for our baby girl. Hope and prayers from our warriors out there is what allows us to stay so positive in this battle.
Yesterday I was browsing Facebook and clicked on a link a former co-worker posted and was instantly put in my place. I clicked on a blog entitled “Avery’s Bucket List” and what I read was gut wrenching. Avery also has a genetic disease only this disease has no foundation raising money and awareness and no research being done to cure this life ending disease. Spinal Muscular Atrophy (SMA.) She has been given 10 months of life and in that time her entire body will shut down, little by little. Her legs have already stopped moving. The entry I read today, told by her dad but through Avery’s eyes, went through the conversation that her parents had with the doctors. The conversation had to do with how much effort they should put into resuscitating their daughter if they walk in to her nursery one morning and find her not breathing. It is devastating to think about their reality and yet, They are living each moment they have with their daughter to its fullest! Making the most of an impossible situation. My heart hurts for them and at the same time I am so encouraged by their strength and overflowing love that they are showing during this time. It is horrible that in less than a year they will be giving their baby girl to Jesus and left coming home to a quite house and trying to put their life back together. I have seen that play out once before and I know they will never be the same. They will find a new normal and every day they will feel empty and no matter what, no matter how hard they try their little girl will never be in their arms again.
As part of her bucket list she and her parents want to spread awareness of SMA. Please take a look at their blog. Please spread the word and maybe.. just maybe.. There will be enough awareness brought to this disease that it will no longer be given no hope but instead, enough of the “right” people will take notice and begin trying to cure this “incurable” genetic disease.
I am so grateful for the people that paved the way for the CF foundation, the doctors, the scientists and the almost promise that Sloan will have more tomorrows than we can count. Avery is a pioneer for her disease and I hope that her impact on this world will bring scientists, doctors, rich people with lots of money to spend together and maybe one day there will be a little Sloan born to the world and her parents can be optimistic for a long life for their daughter instead of being forced to live with the reality that their daughter or son will never outgrow diapers or even crawl. God bless this family.
http://averycan.blogspot.com/?spref=fb
Wednesday, April 18, 2012
Tuesday, April 17, 2012
These Are a Few of My Favorite Things
As we enter into our third month of having Sloan in our arms and settling into our new life I have found that parenthood is a series of trial and errors… If at first you don’t succeed try and try again.. and again.. and again.. and again! In my life there are few things that I am just terrible at. Fortunately for me those things are not on my bucket list and do not interfere with my day to day life. Unfortunately for me I have a deep desire to be really good (not perfect but really good) at everything else. Being a mother and a wife has always been the most important roles I would play and while wifing came all too easy for me (mostly because I married my best friend and he makes it easy on me) becoming a mom threw me for a loop. I am great with other peoples kids so I presumed I would be just as good.. or better with my own.
I’m getting the hang of it certainly but these first three months are no joke. You need all the help you can get and I certainly called in reinforcements more than I ever thought I would. Thank God my mom and mother in law’s want to spend as much time with Sloan as they can possible get. This was and is huge in my “finding me again” process. Sloan will appreciate this post one day but I am mostly writing this because there are a few items and ways of doing things (and not doing things) that I want to share.
First things first, keep your moms close.. all of them, even if they drive you absolutely bonkers! They raised you and your “baby daddy” and, unless they have been institutionalized, would be fine to watch the baby so you can take a much needed nap. My mother in law and I do not see eye to eye on a lot of things but I have come to count on her for my mental recovery more than once. She called one day to check on Sloan and she could tell that I hadn’t slept in days (solid sleep) and knew that Jorde had a few deadlines at work so he was unable to relieve me. I didn’t ask but my desperation shown through the phone and she invited herself over to “see” the baby after work that afternoon. When she got to the house I hightailed it to my bedroom and got 4 hours (she gave her a bottle) of real sleep. It was fantastic. My mom has come to stay with us a total of 4 weeks since Sloan has been here. She lives in Amarillo so her trips are longer but more spread out. When she came this last week I found myself feeding Sloan and handing her off to my mom (Nana) and I was free to run errands, or nap, or take a shower, or make dinner… I felt like a free woman… for 3 ½ hours at least. So, Favorite thing #1 ~ MOMS!!!!
Thing #2 “MY BREAST FRIEND” This is the single most important item if you are a first time mommy and plan on breastfeeding. Bring it to the hospital!! It will save you so much discomfort and frustration. Breastfeeding does not come natural and any help you can get will take the edge off of you and your baby. I did not take it to the hospital, nor did I think about having my mom bring it to me and I so wish I would have. I feel like we could have gotten off to a much better start. The moment we got home and we had our first feeding with it my shoulders dropped for the first time and poor Sloan was given some full body support instead of my unsure hands. I have a boppy, and while effective, the Breast Friend is SO much better. Some lactation consultants don’t like the Breast Friend but I would ignore most everything they have to say other than if your baby has latching issues. They (in my case anyways) are very opinionated with little facts to support their theories.
Thing #3 The “Swaddle Me” wrap by HALO. I tried the other brands but this one works best for our little sleeper. The other ones either road up too close to her face or required that her hands be to her side and she was just not having that. The Swaddle Me by halo allows for her hands to be tucked under her chin without then coming out and flailing about. We didn’t quite understand the concept of the swaddle until we read the book “Happiest Baby on the Block” (this will be talked about more in a bit.) We had started letting her sleep free form after 2 weeks thinking she must be so uncomfortable. When she ended up sleeping worse (not that we noticed right away because she was all over the place) we were reading that book and it clicked. Her next nap we had that thing back on her and she slept…. Well… like a baby! Don’t let your parents intimidate you out of using it because they will. They think it is traumatizing them .. lots of things have changed since I was in diapers.
#4 my MEDELA FREESTYLE BREAST PUMP! I am so happy with the medela freestyle. Breastfeeding and then following up with pumping is difficult but necessary and this pump makes it just a tad bit easier. This pump has all the bells and whistles. If I were inclined, I could strap those bad boys on and fold laundry or do the dishes (I am not inclined.) It is small so you can take it anywhere.
Things # 5-8 The MAMAROO, NAP NANNY, OUTDOOR BLANKET, and the MOTOROLA VIDEO MONITOR. The Mamaroo is like a swing on steroids! It is cool looking and had 4 or 5 different settings, speeds, and noise options. It just got interesting to her in the last week but the smile on her face and overall contentment made it an instant best purchase! Its motions are set to imitate natural motions she would experience when you holding her or in the car. LOVE IT! The Nap Nanny sat in our closet for the first few weeks because she was so small but once she hit 7 lbs (the warning label says 8lbs) we put her in there and she was a much happier baby. Lying on their back is not natural in the ways of going to the restroom and the Nap Nanny gives them great positioning to do their business as well as a new angle to view the world. I know a lot of moms let their babies sleep over night in these suckers and I don’t blame them. We have only used ours for the purpose of a nap or interaction without being held. Maybe it’s just me but when you stay at home with a newborn a little bit of fresh air can go a LOOOONG way in terms of sanity. Sloan and I spend 15-30 minutes once or twice a day outside. I found though, that I have to act fast if I want a happy baby outside (people can hear her cry and it is embarrassing) so the outdoor blanket works well. I can plop it down without having to worry about shaking it from the last time out, through her Nap Nanny down and there we are.. a happy little family enjoying some fresh air. Lastly, the video monitor. We actually have three monitors in this house (talk about overkill) but the video monitor is the only one we use. We have the Angelcare monitor that is supposed to monitor their movements and heartbeats and if there is nothing detected in 15 seconds an alarm goes off but since her mattress is at an incline this feature does not work making the whole reason we got it pointless. It has a video monitor that comes with it but it does not have a very clear picture. The Motorola monitor is awesome. It has a swivel cam that allows me to set it just so in order to view my angel wherever I place her in her crib.
Other things I have learned through trial and error: You can NOT have enough burp rags.. When you think you have enough, buy a package of cloth diapers (that’s what they are anyways) just to keep as extras. Also, we have yet to use our very nice and much anticipated City Select Stroller that I just had to have before we brought her home. This has a lot to do with us going almost nowhere with the baby but keep that in mind if you are trying to figure out what you need now and what you need later. When we take her to the doctor we just carry her in the carseat. I would say that if you plan on getting back to running the jogging stroller (with the newborn carseat attachment) would be a good immediate purchase. If you have to choose I would get the jogging stroller first.
When we first got home with Sloan it seemed like just as we woke up it was time to go back to sleep. Time really does get away from you in those early weeks. We found a great app on our iphone that helped us keep track of her Feedings, it’s called Ibaby Feed and it was a life saver! Even though I was totally not on top of the mommy thing I sure fooled our doctors into thinking I was.
Books!! Oh what fun and as if we had the time. Bah! I wish I would have read more before she got here because there was little time to read after that. The books that we have read and highly recommend are: Baby Wise, Healthy Sleep Habits Happy Baby, Happiest Baby on the Block, What to expect in the first year, and Bringing up Bebe (haven’t finished this one yet but I like where it is going.)
Baby Wise: Jorde and I knew early on that we did not want to demand feed Sloan. She was going to have a lot on her plate and the more we were able to give her stability in her nap time and feeding times the better it would be in the long run. This book is pretty harsh if you follow it to a T so we took bits and pieces and made up our own version. We have not done the cry it out with her although we don’t pick her up every time she starts to cry. In letting her cry for a few minutes we were able to figure out what her crys meant pretty early on. This book provides a great structure to the day and there is a great support website to help you identify schedules that work for your family and it has a great interactive place for moms and dads to help eachother through the ups and downs.
Healthy Sleep Habits Happy Baby: This book is good for children of all ages. It does a lot of explaining the reason why healthy sleep patterns are so important. If anything this books reinforces that you are doing the right thing by instilling a schedule to your baby’s life.
Happiest Baby on the Block: My favorite book!!! I found this book so reassuring in the third week of mommyhood when I decided I was a terrible mom and was doing everything wrong. This book, got to the point quickly on what I needed to do for my baby to be happy, sleep for long periods of time, and explained that there is such a thing as over stimulating a baby (a point that is hard to drive home to some people.) Happiest Baby on the Block speaks to the neurological aspect of your child and the fact that they are not ready for this world after only 10 months of pregnancy. They have defined the first three months of a baby’s life as the 4th trimester and explains you should mimic the womb as much as possible to give her security. After I read this book I felt good about the steps we were taking as parents and we saw instant changes in Sloan. She went down for a nap quicker and was all together happier during her wake time.
What to Expect: I am sure everyone has this one and it is great. Wonderful reference material. We use this book as a mile marker and to check our facts. My only advice with this book is make sure you have the most recent copy. There are a lot of discrepancies between the years.
Bringing up Bebe: I have only just begun this book but I really like it. The premise is an American woman observed how the French approach parenting and how much better behaved (generally speaking) the French kids are when compared to the American kids. One thing that sticks out is Americans “discipline” and the French “teach”… food for thought. It seems to be a good book though.
I am loving watching Sloan grow and even better is watching her grow and having the satisfaction that I am doing everything I can to help her thrive. I have never worked so hard or cared so much for something in my whole life. What a blessing each day is
I’m getting the hang of it certainly but these first three months are no joke. You need all the help you can get and I certainly called in reinforcements more than I ever thought I would. Thank God my mom and mother in law’s want to spend as much time with Sloan as they can possible get. This was and is huge in my “finding me again” process. Sloan will appreciate this post one day but I am mostly writing this because there are a few items and ways of doing things (and not doing things) that I want to share.
First things first, keep your moms close.. all of them, even if they drive you absolutely bonkers! They raised you and your “baby daddy” and, unless they have been institutionalized, would be fine to watch the baby so you can take a much needed nap. My mother in law and I do not see eye to eye on a lot of things but I have come to count on her for my mental recovery more than once. She called one day to check on Sloan and she could tell that I hadn’t slept in days (solid sleep) and knew that Jorde had a few deadlines at work so he was unable to relieve me. I didn’t ask but my desperation shown through the phone and she invited herself over to “see” the baby after work that afternoon. When she got to the house I hightailed it to my bedroom and got 4 hours (she gave her a bottle) of real sleep. It was fantastic. My mom has come to stay with us a total of 4 weeks since Sloan has been here. She lives in Amarillo so her trips are longer but more spread out. When she came this last week I found myself feeding Sloan and handing her off to my mom (Nana) and I was free to run errands, or nap, or take a shower, or make dinner… I felt like a free woman… for 3 ½ hours at least. So, Favorite thing #1 ~ MOMS!!!!
Thing #2 “MY BREAST FRIEND” This is the single most important item if you are a first time mommy and plan on breastfeeding. Bring it to the hospital!! It will save you so much discomfort and frustration. Breastfeeding does not come natural and any help you can get will take the edge off of you and your baby. I did not take it to the hospital, nor did I think about having my mom bring it to me and I so wish I would have. I feel like we could have gotten off to a much better start. The moment we got home and we had our first feeding with it my shoulders dropped for the first time and poor Sloan was given some full body support instead of my unsure hands. I have a boppy, and while effective, the Breast Friend is SO much better. Some lactation consultants don’t like the Breast Friend but I would ignore most everything they have to say other than if your baby has latching issues. They (in my case anyways) are very opinionated with little facts to support their theories.
Thing #3 The “Swaddle Me” wrap by HALO. I tried the other brands but this one works best for our little sleeper. The other ones either road up too close to her face or required that her hands be to her side and she was just not having that. The Swaddle Me by halo allows for her hands to be tucked under her chin without then coming out and flailing about. We didn’t quite understand the concept of the swaddle until we read the book “Happiest Baby on the Block” (this will be talked about more in a bit.) We had started letting her sleep free form after 2 weeks thinking she must be so uncomfortable. When she ended up sleeping worse (not that we noticed right away because she was all over the place) we were reading that book and it clicked. Her next nap we had that thing back on her and she slept…. Well… like a baby! Don’t let your parents intimidate you out of using it because they will. They think it is traumatizing them .. lots of things have changed since I was in diapers.
#4 my MEDELA FREESTYLE BREAST PUMP! I am so happy with the medela freestyle. Breastfeeding and then following up with pumping is difficult but necessary and this pump makes it just a tad bit easier. This pump has all the bells and whistles. If I were inclined, I could strap those bad boys on and fold laundry or do the dishes (I am not inclined.) It is small so you can take it anywhere.
Things # 5-8 The MAMAROO, NAP NANNY, OUTDOOR BLANKET, and the MOTOROLA VIDEO MONITOR. The Mamaroo is like a swing on steroids! It is cool looking and had 4 or 5 different settings, speeds, and noise options. It just got interesting to her in the last week but the smile on her face and overall contentment made it an instant best purchase! Its motions are set to imitate natural motions she would experience when you holding her or in the car. LOVE IT! The Nap Nanny sat in our closet for the first few weeks because she was so small but once she hit 7 lbs (the warning label says 8lbs) we put her in there and she was a much happier baby. Lying on their back is not natural in the ways of going to the restroom and the Nap Nanny gives them great positioning to do their business as well as a new angle to view the world. I know a lot of moms let their babies sleep over night in these suckers and I don’t blame them. We have only used ours for the purpose of a nap or interaction without being held. Maybe it’s just me but when you stay at home with a newborn a little bit of fresh air can go a LOOOONG way in terms of sanity. Sloan and I spend 15-30 minutes once or twice a day outside. I found though, that I have to act fast if I want a happy baby outside (people can hear her cry and it is embarrassing) so the outdoor blanket works well. I can plop it down without having to worry about shaking it from the last time out, through her Nap Nanny down and there we are.. a happy little family enjoying some fresh air. Lastly, the video monitor. We actually have three monitors in this house (talk about overkill) but the video monitor is the only one we use. We have the Angelcare monitor that is supposed to monitor their movements and heartbeats and if there is nothing detected in 15 seconds an alarm goes off but since her mattress is at an incline this feature does not work making the whole reason we got it pointless. It has a video monitor that comes with it but it does not have a very clear picture. The Motorola monitor is awesome. It has a swivel cam that allows me to set it just so in order to view my angel wherever I place her in her crib.
Other things I have learned through trial and error: You can NOT have enough burp rags.. When you think you have enough, buy a package of cloth diapers (that’s what they are anyways) just to keep as extras. Also, we have yet to use our very nice and much anticipated City Select Stroller that I just had to have before we brought her home. This has a lot to do with us going almost nowhere with the baby but keep that in mind if you are trying to figure out what you need now and what you need later. When we take her to the doctor we just carry her in the carseat. I would say that if you plan on getting back to running the jogging stroller (with the newborn carseat attachment) would be a good immediate purchase. If you have to choose I would get the jogging stroller first.
When we first got home with Sloan it seemed like just as we woke up it was time to go back to sleep. Time really does get away from you in those early weeks. We found a great app on our iphone that helped us keep track of her Feedings, it’s called Ibaby Feed and it was a life saver! Even though I was totally not on top of the mommy thing I sure fooled our doctors into thinking I was.
Books!! Oh what fun and as if we had the time. Bah! I wish I would have read more before she got here because there was little time to read after that. The books that we have read and highly recommend are: Baby Wise, Healthy Sleep Habits Happy Baby, Happiest Baby on the Block, What to expect in the first year, and Bringing up Bebe (haven’t finished this one yet but I like where it is going.)
Baby Wise: Jorde and I knew early on that we did not want to demand feed Sloan. She was going to have a lot on her plate and the more we were able to give her stability in her nap time and feeding times the better it would be in the long run. This book is pretty harsh if you follow it to a T so we took bits and pieces and made up our own version. We have not done the cry it out with her although we don’t pick her up every time she starts to cry. In letting her cry for a few minutes we were able to figure out what her crys meant pretty early on. This book provides a great structure to the day and there is a great support website to help you identify schedules that work for your family and it has a great interactive place for moms and dads to help eachother through the ups and downs.
Healthy Sleep Habits Happy Baby: This book is good for children of all ages. It does a lot of explaining the reason why healthy sleep patterns are so important. If anything this books reinforces that you are doing the right thing by instilling a schedule to your baby’s life.
Happiest Baby on the Block: My favorite book!!! I found this book so reassuring in the third week of mommyhood when I decided I was a terrible mom and was doing everything wrong. This book, got to the point quickly on what I needed to do for my baby to be happy, sleep for long periods of time, and explained that there is such a thing as over stimulating a baby (a point that is hard to drive home to some people.) Happiest Baby on the Block speaks to the neurological aspect of your child and the fact that they are not ready for this world after only 10 months of pregnancy. They have defined the first three months of a baby’s life as the 4th trimester and explains you should mimic the womb as much as possible to give her security. After I read this book I felt good about the steps we were taking as parents and we saw instant changes in Sloan. She went down for a nap quicker and was all together happier during her wake time.
What to Expect: I am sure everyone has this one and it is great. Wonderful reference material. We use this book as a mile marker and to check our facts. My only advice with this book is make sure you have the most recent copy. There are a lot of discrepancies between the years.
Bringing up Bebe: I have only just begun this book but I really like it. The premise is an American woman observed how the French approach parenting and how much better behaved (generally speaking) the French kids are when compared to the American kids. One thing that sticks out is Americans “discipline” and the French “teach”… food for thought. It seems to be a good book though.
I am loving watching Sloan grow and even better is watching her grow and having the satisfaction that I am doing everything I can to help her thrive. I have never worked so hard or cared so much for something in my whole life. What a blessing each day is
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