This is an email that I wrote to send out to our families the other day, it explains it the best way I know how to at this point.
"Afternoon,
This will be a brief, but very important update. Our hearts are heavy today but we have a very positive outlook for Macy and will continue to keep our heads up and to build Macy up as she continues to grow.
I mentioned in my last email that we ran a genetics test on Macy’s chromosomes to be able to rule anything out with all that has been going on. The genetics counselor for University of Missouri Children’s Hospital called me this morning with the results. Macy has something called Turner Syndrome. All girls have XX chromosomes and boys have XY chromosomes, Macy has only one X chromosome. She is still a girl, but the absence of this chromosome is classified as Turner Syndrome. The classification of TS is very broad. There are several “symptoms” that she could have or could never have. We know that the following things are in line with being common when it comes to TS; prominent ears, horseshoe kidney, small size, hole in her heart, and a few other small features. There are also a lot of things that it appears she does not have at this time. It does not appear that her missing toe has anything to do with her TS.
I hate to just leave it at this, but for the time being this is all that we know. I have attached a brochure that kind of briefly defines Turner Syndrome for you to read if you would like. We have a follow up with her Surgeon on Thursday and will meet with the Genetics team right after to talk about where we go from here. I do know that we will do another Echo on her heart to check a certain part that usually has issues when it comes to TS.
I want to be clear that this is not a disability and it is not mental retardation. In the grand scheme of things, it feels like a lot but she should have a fairly “normal” life compared to where we could be if it had been something else.
It is extremely important that we caught this so early, early intervention is key in most things like this. Everyone has told Brett and I how strong we have been through all of this and that will not change or waiver. You never know what you can handle until you go through it and I firmly believe that we can raise Macy to be proud of who she is and what cards she has been dealt.
Also, I am sorry that this is coming in email form but I wanted to keep you all in the loop and this is definitely the best way to reach everyone and make sure I share the facts and what we know. I am not ready for a ton of questions that I cannot answer now or ever. This is all very fresh for us. We appreciate your support of both us and Macy.
We love you all.
Sara and Brett"
Tuesday, February 12, 2013
Wednesday, November 14, 2012
Friday, October 19, 2012
Pumpkin Patch
Braylen's preschool made a field trip yesterday to the pumpkin patch and we were thrilled to be able to all go. It was so cute to see Braylen interact with his classmates and see who he's always talking about at home.
It was pretty brisk and even though not pictured, Macy and I were indeed present. She was bundled up tightly in my K'tan wrap and snoozing away.
It was pretty brisk and even though not pictured, Macy and I were indeed present. She was bundled up tightly in my K'tan wrap and snoozing away.
Wednesday, October 17, 2012
Macy Lou: Month 1
Happy one month Macy Lou! Feels like you've always been a part of our family and we can't believe your first month has flashed before our eyes.
Not sure where you are weighing in these days, somewhere in the high 8 to low 9 pounds. We will get all these measurements at your one month appointment with the doctor.
You are eating every 2-3 hours and sometimes in the evening you like to cluster feed at around an hour and a half. You are starting at your brother's preschool in 2 weeks so we have started working on you taking a bottle. So far I've tried twice and you've been pretty finicky about it. You definitely do not like cold milk! We will keep working on it, daddy is so excited to get to feed you too.
During the night you are still sleeping in our room. You are in the rock and play next to our bed and will stay there for now. You seem to wake up (at least) every 3 hours on the dot to eat...sometimes earlier and you need help going back to sleep, sometimes your just starving. You teased us when we first brought you home with 5-6 hour stretches and even 7 one night. We will probably keep you in our room until we hit those longer stretches again.
You have already started smiling at us! I try to keep you awake as long as I can during the day after you eat and you love to lay and look around. We have started getting out the baby toys and you like to follow the noise and you even smile at some of them. Braylen loves laying on the blanket with you and doing tummy time. He asks me to help him get his head lined up just perfectly with yours.
I'm trying to soak up our last two weeks together before I go back to work and hold you every minute I can get.
**...and Braylen you have officially been a big brother for a month now! You are doing great with Macy and loving on her. We are working on controlling your craziness when Macy is near but when you are aware of her you are so gentle. You love to go rock her and when she cries in the car you lean over and sing to her.
You have started to act out against me a little bit. Your daddy and I assume its because I am spending more time with Macy to feed her and stay home with her. You try to tell me that you only listen to daddy and that only daddy can do stuff. We are working on it and I think we will be back to normal soon. I also think our mommy/Braylen date will help too!
Happy 1 month kiddos!!
Not sure where you are weighing in these days, somewhere in the high 8 to low 9 pounds. We will get all these measurements at your one month appointment with the doctor.
You are eating every 2-3 hours and sometimes in the evening you like to cluster feed at around an hour and a half. You are starting at your brother's preschool in 2 weeks so we have started working on you taking a bottle. So far I've tried twice and you've been pretty finicky about it. You definitely do not like cold milk! We will keep working on it, daddy is so excited to get to feed you too.
During the night you are still sleeping in our room. You are in the rock and play next to our bed and will stay there for now. You seem to wake up (at least) every 3 hours on the dot to eat...sometimes earlier and you need help going back to sleep, sometimes your just starving. You teased us when we first brought you home with 5-6 hour stretches and even 7 one night. We will probably keep you in our room until we hit those longer stretches again.
You have already started smiling at us! I try to keep you awake as long as I can during the day after you eat and you love to lay and look around. We have started getting out the baby toys and you like to follow the noise and you even smile at some of them. Braylen loves laying on the blanket with you and doing tummy time. He asks me to help him get his head lined up just perfectly with yours.
I'm trying to soak up our last two weeks together before I go back to work and hold you every minute I can get.
**...and Braylen you have officially been a big brother for a month now! You are doing great with Macy and loving on her. We are working on controlling your craziness when Macy is near but when you are aware of her you are so gentle. You love to go rock her and when she cries in the car you lean over and sing to her.
You have started to act out against me a little bit. Your daddy and I assume its because I am spending more time with Macy to feed her and stay home with her. You try to tell me that you only listen to daddy and that only daddy can do stuff. We are working on it and I think we will be back to normal soon. I also think our mommy/Braylen date will help too!
Happy 1 month kiddos!!
Monday, October 15, 2012
Tuesday, October 9, 2012
Look alike
I knew my kids would look alike..and I knew that I saw some of Braylen in Macy already. I didn't realize just HOW much they would look like each other.
Mommy confession time....I MAY have called Macy by Braylen's name a time or two. I think I can half blame my exhaustion on that too. These side by side comparisons show exactly how much they do look alike.
Mommy confession time....I MAY have called Macy by Braylen's name a time or two. I think I can half blame my exhaustion on that too. These side by side comparisons show exactly how much they do look alike.
Friday, September 28, 2012
Could life be any better?
Please bear with me and my absence of posts. I am soaking up all I can of Macy's newborn phase and loving it. Every minute I am not spending snuggling her I am spending with Braylen. Safe to say I couldn't be happier and life couldn't be better.
In the meantime, enjoy some photos of the kids. (kidS!! Still can't believe it)
In the meantime, enjoy some photos of the kids. (kidS!! Still can't believe it)
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