bobekah
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Most of you have probably never heard of it but here goes my babies story...
Caydence Eve was born at 857 am...just 2 minutes after her fraternal twin sister Alyssa Mae. Alyssa was and is perfectly healthy. Caydence on the other hand...
Caydence ended up being put into an incubator and taken to the NICU. She was 3lbs 5oz even though I carried to full term! It was in another section of the hospital so I had to wait a couple of hours to go see her. Her sister wasnt allowed in the NICU so visits were hard...
First thing I noticed is that her ring finger and pinkie fingers were fused together on both hands. The fingers are all there just stuck together. So the doctors in the NICU wanted a genetics team from Seattles Childrens Hospital to see her. I had to wait about a week for them to fly up to Alaska. The genetics took all the normal family heritage questions...there is nothing like this in ether family as far as we know. Well the doctors diagnosed her with the Oculodentodigital Dysplasia. That day was so hard. I remember going home and google-ing everything I could about it. I added a group to my facebook as well. The odds of her Dysplasia is 1 in 40 in the USA and 1 in 1000 in the entire World! The Oculo part of the dyplasia is her eyes...a probability of vision loss. Her eyes are also big and closer together. The dento part is dental...she ALREADY started to get what looks like teeth in. A month ago I had another Genetics doctor over look her and asked him about the teeth growing in and he said its more than likely abscess or a cyst type of growth. Not her teeth yet. With the dysplasia she is suppose to have small teeth that grow in and fall out quickly. The digital part is her fingers...the 4+5 Syndactyly Doctors say we can do surgery on them by the time she is 6 months and there will be scarring but she will have full function after physical therapy.
On top of the dysplasia she has a few things going on with her. A couple of days after she was diagnosed by the Genetics team in the NICU she had an ultrasound of her brain done. Came up that there is a cyst in her developmental area. They told me worst case scenario of it exploding and they told me best case scenario of it not even effecting her.
After we left the NICU I noticed that her foot was bent in an odd position...thinking it was clubbed foot I went to the pedi but she forwarded us to a foot specialist and we found out it isnt clubbed foot the bone just needs to be pushed back into the right area. She has to wear the clubbed foot bar/boots for a year...20 hours a day. She is also having issues keeping food down. I got her on Similac Alimentum for sensitive or colic babies...it hasnt been helping at all. She still hasnt been gaining any weight. AND isnt sleeping too well. Every 20 minutes in the middle of the night for me!!! At 3 months old my baby is 7 1/2 lbs! So our next stop is for a stomach surgery that will help her with the reflux going on.
I love my daughter so much but it gets overwhelming. I hope my story can help or theres someone out there that understands...It drives me crazy that I didnt have anything to do with this...I had a perfect pregnancy...no smoking no drinking...vitamins...its just a fluke they tell me.
Thanks for reading Caydences story! I know its a little long!
Caydence Eve was born at 857 am...just 2 minutes after her fraternal twin sister Alyssa Mae. Alyssa was and is perfectly healthy. Caydence on the other hand...
Caydence ended up being put into an incubator and taken to the NICU. She was 3lbs 5oz even though I carried to full term! It was in another section of the hospital so I had to wait a couple of hours to go see her. Her sister wasnt allowed in the NICU so visits were hard...
First thing I noticed is that her ring finger and pinkie fingers were fused together on both hands. The fingers are all there just stuck together. So the doctors in the NICU wanted a genetics team from Seattles Childrens Hospital to see her. I had to wait about a week for them to fly up to Alaska. The genetics took all the normal family heritage questions...there is nothing like this in ether family as far as we know. Well the doctors diagnosed her with the Oculodentodigital Dysplasia. That day was so hard. I remember going home and google-ing everything I could about it. I added a group to my facebook as well. The odds of her Dysplasia is 1 in 40 in the USA and 1 in 1000 in the entire World! The Oculo part of the dyplasia is her eyes...a probability of vision loss. Her eyes are also big and closer together. The dento part is dental...she ALREADY started to get what looks like teeth in. A month ago I had another Genetics doctor over look her and asked him about the teeth growing in and he said its more than likely abscess or a cyst type of growth. Not her teeth yet. With the dysplasia she is suppose to have small teeth that grow in and fall out quickly. The digital part is her fingers...the 4+5 Syndactyly Doctors say we can do surgery on them by the time she is 6 months and there will be scarring but she will have full function after physical therapy.
On top of the dysplasia she has a few things going on with her. A couple of days after she was diagnosed by the Genetics team in the NICU she had an ultrasound of her brain done. Came up that there is a cyst in her developmental area. They told me worst case scenario of it exploding and they told me best case scenario of it not even effecting her.
After we left the NICU I noticed that her foot was bent in an odd position...thinking it was clubbed foot I went to the pedi but she forwarded us to a foot specialist and we found out it isnt clubbed foot the bone just needs to be pushed back into the right area. She has to wear the clubbed foot bar/boots for a year...20 hours a day. She is also having issues keeping food down. I got her on Similac Alimentum for sensitive or colic babies...it hasnt been helping at all. She still hasnt been gaining any weight. AND isnt sleeping too well. Every 20 minutes in the middle of the night for me!!! At 3 months old my baby is 7 1/2 lbs! So our next stop is for a stomach surgery that will help her with the reflux going on.
I love my daughter so much but it gets overwhelming. I hope my story can help or theres someone out there that understands...It drives me crazy that I didnt have anything to do with this...I had a perfect pregnancy...no smoking no drinking...vitamins...its just a fluke they tell me.
Thanks for reading Caydences story! I know its a little long!
You have two beautiful little girls there 
I don't know anything about Caydences' condition but I can imagine it is hard. I must say though that her weight sounds great for the weight she was at birth.
xx
