Saturday was Hailey bean's first Buddy Walk. It was really amazing to see how "normal" all those people with Down Syndrome were. I was apprehensive about going because I didn't know if I would just be crushed to see the reality of it or what. But I wasn't. If anything it gave me hope. Girls and boys running and jumping and playing and getting in trouble just like their brothers and sisters. I was exetremly excited to see how close everyone was and I know that Hailey will never be alone in her struggles.
During the walk people kept thinking that her grandma was mommy, because shes 43, and I'm only 20. People were shocked to find out that I'm her mom. That's another really difficult thing to deal with. I can't relate to most of the parents. They all have other children, some children close to my age. I only got out of high school a year ago and some of them are high school teachers. I would LOVE to be more active in the DS community around here, but it's just so awkward...I don't know, maybe it's just me?
Anyway I'm a terrible blogger but nothing much happens around here...EXCEPT that Bean is getting a tooth...IN THE FRONT. So that's 3 teefers now. 2 incisors and one in front. Whoohoo now she can eat "real people food" as I called it the other day. I ment "big people food" but it didn't come out that way.
I might go to bed, I might look at more blogs, who knows?!
*BE MY BLOG FRIEND plz?*
Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts
Sunday, October 12, 2008
Thursday, September 18, 2008
Who knew?
I had NO IDEA that Hailey knew how to stand up in her crib, or that she knew how to pull herself up on her grandma's bed and ALMOST put her in hand in the fan, or that she knew how to unplug things, or how to turn on and off the night light. This just proves that just because she has DS doesn't mean she can't do things, she does but she just does them when she thinks no one is looking!
Hailey Bean is a handful lately, but I love it. Today was her first day in her "big girl" carseat, and she LOVED it. She can sit upright and see everything, and yesterday was her first day acutally sitting in a shopping cart, not just in her carseat in the shopping cart. She's getting soooo big and she can almost crawl on her hands and knees now, but she still belly crawls most of the time. It's almost Bean's bedtime, she's going to go watch Reba with grandma and I'm going to play WoW until I have to go to work.
Hailey Bean is a handful lately, but I love it. Today was her first day in her "big girl" carseat, and she LOVED it. She can sit upright and see everything, and yesterday was her first day acutally sitting in a shopping cart, not just in her carseat in the shopping cart. She's getting soooo big and she can almost crawl on her hands and knees now, but she still belly crawls most of the time. It's almost Bean's bedtime, she's going to go watch Reba with grandma and I'm going to play WoW until I have to go to work.
Friday, September 12, 2008
A little about Hailey (acutally ALOT)
What to say about Hailey? Gah, I don't know, except that she's wonderful! She was born on August 6, 2007 and the only way my father remembers her birthday is from that song 867-5309 since her birthday is 8-6-07, funny huh?
Anyway, soon after I found out I was pregnant I went to the doctor to have a routine ultrasound. Everything looked wonderful said the tech. But of course 3 days later I get a call from the hospital saying that there looks to be something wrong with my baby's heart, and also her left foot. I panic because they didn't say anything else, they just left me with baby-heart problems-18 years old-still in high school-OH MY GOD. I was sent to a maternal fetal medicine specialist who did extensive ultrasounds and said that what they saw on Hailey's heart was called an echogenic focus (an "echo" of light from the back of the heart) and that this along with the abnormal toeing of the feet were soft markers for Down syndrome. I brushed it off, because hey I'm only 18 and babies with Down syndrome are only born to old ladies (LIE).
The specialist wanted me to come back for some more ultrasounds for a nuchal fold test. During this ultrasound, they discovered that Hailey most likely had a condition called duodenal atreisa (narrowing of the lower intestine) and this ALSO mainly occurred in fetuses with DS. They couldn't confirm the DA even though I had lvl 2 U/S every week until I had Hailey. I was soon put on bed rest due to low fluid levels, and the low fluid levels conflicted with the DA diagnosis because usually with DA you have EXTRA fluid. ( OH, I wonder why I had low fluid levels, they only had me walk around the NICU of Riley Hospital and the birthing suites of IU). The last doctor who did my U/S was trying to force me in to getting an amnio and gave me late term abortion brochures just in case she did have DS. I repeatedly told her NO for the amnio, that I didn't care if my child did have DS I was going to give her a fair chance to prove herself and to prove that doctor wrong!
I was scheduled to be induced on August 13th 2007 at IU Hospital so I could be closer to Riley Hospital (they are connected) just in case Hailey had serious heart problems. Well that didn't happen because my little bean had a different schedule. I had labor pains for a couple of hours, but I really just thought I had to poop LOL! At around 3am I called my step mom (I was at my boyfriends house at the time) to come pick me up and take me to the hospital. I didn't want to wake my bf up just in case it was false, because he had to work at 9am. I got there and they checked me and said I was.....8 CM dilated. As soon as I stood up to put my pants back on my water broke (all in my shoes too!) and my step mom called my bf and told him to hurry that he was going to be a daddy soon.
I was pushed for about half an hour and out popped the bebe! They rushed her off to a corner of the room where about 5 doctors checked her out. Finally they let me hold her while I was being stitched up (10 stitches!) After the awesome 10 mins of holding her they whisked her off to get X-rays of her heart and belly. After about an hour the doctors came back and said they didn't' know anything, that they were sending her to Riley for further testing. I wasn't allowed to go because I was bleeding too much but my bf and step mom went down there with her and I came about an hour later. At Riley they told me that she DID have duodenal atreisa and it would need to be repaired ASAP. The surgery was scheduled for the next day.
The next day the surgery happened and she pulled through like a trooper and the surgeon told met that the reason they couldn't get a clear DX of the DA was because her intestines were backwards. How the hell did that happen? They also did a biopsy for Hirchsprungs and a blood test for the DS. 4 days later the results came back. Positive for DS but negative for Hirchspurngs. A month later Hailey was released from the hospital with only a feeding tube which she only had for about a month and a half.
Today she eats like a little hog, can sit up by her self, finger feeds, babbles wonderfully, crawls, holds her own bottle and is trying to cruise! She is a little miracle and I love her more than I have ever loved anything ever.
I'm going to bed, since it's 2am...Jesus I love my days off!
Anyway, soon after I found out I was pregnant I went to the doctor to have a routine ultrasound. Everything looked wonderful said the tech. But of course 3 days later I get a call from the hospital saying that there looks to be something wrong with my baby's heart, and also her left foot. I panic because they didn't say anything else, they just left me with baby-heart problems-18 years old-still in high school-OH MY GOD. I was sent to a maternal fetal medicine specialist who did extensive ultrasounds and said that what they saw on Hailey's heart was called an echogenic focus (an "echo" of light from the back of the heart) and that this along with the abnormal toeing of the feet were soft markers for Down syndrome. I brushed it off, because hey I'm only 18 and babies with Down syndrome are only born to old ladies (LIE).
The specialist wanted me to come back for some more ultrasounds for a nuchal fold test. During this ultrasound, they discovered that Hailey most likely had a condition called duodenal atreisa (narrowing of the lower intestine) and this ALSO mainly occurred in fetuses with DS. They couldn't confirm the DA even though I had lvl 2 U/S every week until I had Hailey. I was soon put on bed rest due to low fluid levels, and the low fluid levels conflicted with the DA diagnosis because usually with DA you have EXTRA fluid. ( OH, I wonder why I had low fluid levels, they only had me walk around the NICU of Riley Hospital and the birthing suites of IU). The last doctor who did my U/S was trying to force me in to getting an amnio and gave me late term abortion brochures just in case she did have DS. I repeatedly told her NO for the amnio, that I didn't care if my child did have DS I was going to give her a fair chance to prove herself and to prove that doctor wrong!
I was scheduled to be induced on August 13th 2007 at IU Hospital so I could be closer to Riley Hospital (they are connected) just in case Hailey had serious heart problems. Well that didn't happen because my little bean had a different schedule. I had labor pains for a couple of hours, but I really just thought I had to poop LOL! At around 3am I called my step mom (I was at my boyfriends house at the time) to come pick me up and take me to the hospital. I didn't want to wake my bf up just in case it was false, because he had to work at 9am. I got there and they checked me and said I was.....8 CM dilated. As soon as I stood up to put my pants back on my water broke (all in my shoes too!) and my step mom called my bf and told him to hurry that he was going to be a daddy soon.
I was pushed for about half an hour and out popped the bebe! They rushed her off to a corner of the room where about 5 doctors checked her out. Finally they let me hold her while I was being stitched up (10 stitches!) After the awesome 10 mins of holding her they whisked her off to get X-rays of her heart and belly. After about an hour the doctors came back and said they didn't' know anything, that they were sending her to Riley for further testing. I wasn't allowed to go because I was bleeding too much but my bf and step mom went down there with her and I came about an hour later. At Riley they told me that she DID have duodenal atreisa and it would need to be repaired ASAP. The surgery was scheduled for the next day.
The next day the surgery happened and she pulled through like a trooper and the surgeon told met that the reason they couldn't get a clear DX of the DA was because her intestines were backwards. How the hell did that happen? They also did a biopsy for Hirchsprungs and a blood test for the DS. 4 days later the results came back. Positive for DS but negative for Hirchspurngs. A month later Hailey was released from the hospital with only a feeding tube which she only had for about a month and a half.
Today she eats like a little hog, can sit up by her self, finger feeds, babbles wonderfully, crawls, holds her own bottle and is trying to cruise! She is a little miracle and I love her more than I have ever loved anything ever.
I'm going to bed, since it's 2am...Jesus I love my days off!
Subscribe to:
Posts (Atom)
