our struggles and triumphs to find the simple path to special needs parenting.
Tuesday, September 17, 2013
Check out our new blog on green living
Check out our families new blog of green living at CrunchyMa It offers ideas, recipes, and suggestions on how to live your life my frugally and eco friendly with a large family.
Well I have sort of become a slacker and totally side tracked the blog for a little while now but I think it may be time for a come back. I forgot the original reason I set out to write this blog, besides give my grandparents, aunts, uncles, and cousins a place to see how we were doing, but to help educate other mothers on what life is life before, during, and after being diagnosed with twin to twin transfusion syndrome.
Both of the little ones are now 12 months actual 9 1/2 months adjusted. Baby A, Gavin, was born with Periventricular Luekomalacia, an open PDA, and jaundice. He was on a vent for 6 days before breathing independently and it wasn't for 35 days that he didn't have any A's and B's before he could come home. My baby B, Gabe, donor, was born with brain cysts and jaundice. He was on a vent for 2 days before breathing unassisted and also stayed 35 days in the NICU even though he was ready to come home at day 28. He just couldn't stand to leave his brother behind.
After both starting out at 3lbs 11oz and 16in tall, Gabe is now 20lbs 10oz 30 in, and Gavin is 22lbs, 30in. As far as weight and growth go we have made tremendous progress. We just recently were evaluated by physical therapy through Illinois' Early Intervention Program provided at St. Johns Hospital, where the boys were born. They found Gavin's gross motor skills to be there of a 2-3 month old with a 78-90% delay and Gabe's to be that for a 4-5 month old with a 40-56% delay. We are also still currently doing Speech therapy, Occupational Therapy, and Developmental Therapy once weekly for both boys. Gavin is also doing Vision Developmental Therapy and going to an Intensive Feeding Clinic because he is still not eating solids.
Gabes diet consists of 2 8oz pediasures a day, once before bed and one split in the morning and before nap, and regular ol' table food. Gavin is on 4 pediasure's a day and is practicing with purees and soft diet foods dipped on a chewy or duo spoon.
We are getting so big and chugging right along! :)
Both of the little ones are now 12 months actual 9 1/2 months adjusted. Baby A, Gavin, was born with Periventricular Luekomalacia, an open PDA, and jaundice. He was on a vent for 6 days before breathing independently and it wasn't for 35 days that he didn't have any A's and B's before he could come home. My baby B, Gabe, donor, was born with brain cysts and jaundice. He was on a vent for 2 days before breathing unassisted and also stayed 35 days in the NICU even though he was ready to come home at day 28. He just couldn't stand to leave his brother behind.
After both starting out at 3lbs 11oz and 16in tall, Gabe is now 20lbs 10oz 30 in, and Gavin is 22lbs, 30in. As far as weight and growth go we have made tremendous progress. We just recently were evaluated by physical therapy through Illinois' Early Intervention Program provided at St. Johns Hospital, where the boys were born. They found Gavin's gross motor skills to be there of a 2-3 month old with a 78-90% delay and Gabe's to be that for a 4-5 month old with a 40-56% delay. We are also still currently doing Speech therapy, Occupational Therapy, and Developmental Therapy once weekly for both boys. Gavin is also doing Vision Developmental Therapy and going to an Intensive Feeding Clinic because he is still not eating solids.
Gabes diet consists of 2 8oz pediasures a day, once before bed and one split in the morning and before nap, and regular ol' table food. Gavin is on 4 pediasure's a day and is practicing with purees and soft diet foods dipped on a chewy or duo spoon.
We are getting so big and chugging right along! :)
Happy first birthday
Well, tomorrow is our twins first birthday.
If you asked me a year ago today if I thought I could have survived this I would have told you I wasn't sure. But here we are, doing the best we can with what we've been given; two beautiful little boys. I wasn't exactly sure how I wanted to write this piece, as I have been sort of slacking on the updates recently, but I think I will start out by writing letters to both of the boys.
Dear Gavin,
I am crying as I write this to you because you have changed my life and blinded me by love. With all the difficulties and hell you have put me and your father through this past year, I would live it over and over for eternity. I worry about you the most out of all your brothers though. I have days where I imagine you running around playing with all the kids in your braces and not so great ones where you challenge me so much I'm not sure what to expect. I have high hopes of you being able to become self sufficient and keep up with your brothers but even if you don't you will have surpassed anything I could have ever imagined for you after we found out about you boys' diagnosis during pregnancy. We were so afraid we were going to lose you, but you, Gavin, are a fighter. With everything you have going against you, you are the happiest, most loving little boy. I wait a few minutes to wake you up in the morning just to listen to you giggle to yourself trying to get my attention. The way you follow your brothers around the room with your bright blue eyes makes me feel like you are just waiting in there to get out. I promise to you that I will always do whatever I can for you to help you feel as loved as you do and are right now. This isn't quite what I had expected to write but I want you to know that I cannot wait for the next year and all the years to come. You really are my sunshine.
Dear Gabe,
Never did I expect to get such a little spit fire. You mister are my little drama queen. You may be the baby of the bunch but you little man are the ruler of the roost. If it isn't your way its the high way and that's just the way you like it. You don't realize you have things that hold you back. You think you are 1 going on 3. You scoot along on your belly right alongside the big boys and think you're one of them. You have no idea how absolutely amazing you really are. You are the smartest little boy. I remember I thought I was going crazy when you said your first word, because I thought it was too soon. We were all sitting around in the play room and you said "bu-bble" as one floated right by and kept on repeating yourself. "bu-bbbble, buuuuh-ble." You make mommy so proud each and every day. You have also surpassed every one of my expectations and I love the challange you bring me everyday. You are an amazing big little brother looking out for Gavin and he will forever be grateful to you, as am I. You teach me new things about myself and the world everyday. You are the moon stink. I love you.
If you asked me a year ago today if I thought I could have survived this I would have told you I wasn't sure. But here we are, doing the best we can with what we've been given; two beautiful little boys. I wasn't exactly sure how I wanted to write this piece, as I have been sort of slacking on the updates recently, but I think I will start out by writing letters to both of the boys.
Dear Gavin,
I am crying as I write this to you because you have changed my life and blinded me by love. With all the difficulties and hell you have put me and your father through this past year, I would live it over and over for eternity. I worry about you the most out of all your brothers though. I have days where I imagine you running around playing with all the kids in your braces and not so great ones where you challenge me so much I'm not sure what to expect. I have high hopes of you being able to become self sufficient and keep up with your brothers but even if you don't you will have surpassed anything I could have ever imagined for you after we found out about you boys' diagnosis during pregnancy. We were so afraid we were going to lose you, but you, Gavin, are a fighter. With everything you have going against you, you are the happiest, most loving little boy. I wait a few minutes to wake you up in the morning just to listen to you giggle to yourself trying to get my attention. The way you follow your brothers around the room with your bright blue eyes makes me feel like you are just waiting in there to get out. I promise to you that I will always do whatever I can for you to help you feel as loved as you do and are right now. This isn't quite what I had expected to write but I want you to know that I cannot wait for the next year and all the years to come. You really are my sunshine.
Dear Gabe,
Never did I expect to get such a little spit fire. You mister are my little drama queen. You may be the baby of the bunch but you little man are the ruler of the roost. If it isn't your way its the high way and that's just the way you like it. You don't realize you have things that hold you back. You think you are 1 going on 3. You scoot along on your belly right alongside the big boys and think you're one of them. You have no idea how absolutely amazing you really are. You are the smartest little boy. I remember I thought I was going crazy when you said your first word, because I thought it was too soon. We were all sitting around in the play room and you said "bu-bble" as one floated right by and kept on repeating yourself. "bu-bbbble, buuuuh-ble." You make mommy so proud each and every day. You have also surpassed every one of my expectations and I love the challange you bring me everyday. You are an amazing big little brother looking out for Gavin and he will forever be grateful to you, as am I. You teach me new things about myself and the world everyday. You are the moon stink. I love you.
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