Aa
off subject- update on newborn twins
Oh, THANK YOU, THANK YOU! You have no idea what your responses do for me. I get them thourgh out the day and I feel like I have friends all over the world praying for our little Callie! You lift my heart up and give me hope! What a tremendous amount of support you each have been!
Callie has several problems, one of is a extremely rare mouth problem that has not been identified. The neo-natal doctor has never seen and could not find info on it after extensive research. Feeding is going to be a extreme problem.
(My research has pointed me in a direction that I think I know what it is-will let you know if I am right)
Please continue your prayers for her and us!
She and Kyndall are both beauties and so sweet! Blessings to you all! sass
Callie has several problems, one of is a extremely rare mouth problem that has not been identified. The neo-natal doctor has never seen and could not find info on it after extensive research. Feeding is going to be a extreme problem.
(My research has pointed me in a direction that I think I know what it is-will let you know if I am right)
Please continue your prayers for her and us!
She and Kyndall are both beauties and so sweet! Blessings to you all! sass
The correct terminology should have been OAVS
Oculo-Auriculo-Vertebral Sydrome or Goldenhar Syndrome! Sorry, I have typing dyslexia!
I have done quite a bit of research on this subject and am going to reserve my judgement until she is seen by a plastic surgeon. She has one tag directly in front of one ear and multiple ear tags in front of the other ear, like a cluster. Several inside ear lobes and two seperate ones around the mouth area. These too will be removed during one of the surgeries.
I have googled, binged and searched engine all kind of sites since last Friday! I did come across this Syndrome, but still am not convinced this is her diagnosis. The geneticist has only read about this syndrome. She says she is not a diagnostician, only a researcher, more or less.
Callie does not have ear loss, no eye problems, no nose deformity of any kind. She does not have cleft palate, no bone deformities, spine seems totally intact and healthy when NICU Doc, peditricians, and geneticist examined it. At one year old they will X-Ray spine to see if there is any disorder there. She can easily move all body parts with no problems. She was otherwise given a complete clean bill of health.
She is being feed with a bottle designed for cleft palate.
There is a site that I have found and believe this is more of what she has. Type in macrostomia and it will take your there. There is a picture of a child that looks so much like Callie's problem. Callie has it on both sides of her mouth and it is a tad bit more extreme.
Bilateral Pure Macrostomia! Macrostomia meaning is large mouth. It does go with preauricular (ear) tags also. It mentions that it can be caused by a arterial blood flow during the forming of the mouth region during gestation. As the mouth area is fused and then seperates around 4th to 7th week, Callie's just kept diffussing for a week or so.
She was born with what is called a double vessel, instead of the normal triple vessel umbilical cord. Blood supply could have been easily disrupted with this little problem and is common for one twin to have less flow than the other, even with normal triple vessels. Callie was one artery short!
Her parents report that she is alert and likes to look at her surroundings. Kyndall is acting more like a normal premmie and sleeps a lot more. Both seem to be eating well, but are having to be supplemented, as their mommy's milk still has not come in well. They are nursing with what I call a cheater! lol The hospital supplied them with a syringe with a tiny curved tip, that is filled and then slipped into the side of mouth and babies are actually sucking out of applicator. They just don't know it. It is a three person job with Callie! Mommy sits and holds, One person to hold and refill syringes and another to help Callie's lips to form a better seal. Ha! Now that is what I call dedication. This is what I will be doing starting Sunday. Daddy will be going to work 2 days and I have a feeling my hubbie is not going to feel comfortable with this job duty, so I will have to grow another arm or two. Hey, maybe my swollen Parotid and Mr Hashimotos can come in handy with this! LOL, LOL, LOL!
So, I know all of this is totally off our Thyroid Forum subject, but I felt like with all of your dedicated help and prayers, you night like to follow her progress! Of course, I love research and learning, so I may find it more interesting than others.
We welcome any and all comments and suggestions. As far as we can research there are no cleft palates or deformities in any of our families.
I do have a birth defect that was caused by the DES hormone and some other hormones that were given to my mother during her pregnancy with me.
I have done extensive studying on DES and the DES grandchildren. We now know that My children, DES Grandbabies are showing problems caused by this evil drug. And even my grandson has had to have surgery on his penis to correct a problem that has clearly been found in DES grandsons. My grandson would be considered a DES great-grandson. My son has had surgery to correct a testicular varocies problem, like vericose veins. Now, I can only wonder.....Could Callie be effected too?
DES has been found to cause Cervical Cancer among others,had it, B. Cancer, had it, infertility, I was blessed with 2 miracles --extreme uterus deformities, had it bad. My mother had b. cancer as well. That is the only thing it causes in the women giving the drug. Some of my doctors feel this is a cause for many of my issues
I am extremly blessed and lucky to be where I am today! God is So Good!!
So....who has questions? sass
Oculo-Auriculo-Vertebral Sydrome or Goldenhar Syndrome! Sorry, I have typing dyslexia!
I have done quite a bit of research on this subject and am going to reserve my judgement until she is seen by a plastic surgeon. She has one tag directly in front of one ear and multiple ear tags in front of the other ear, like a cluster. Several inside ear lobes and two seperate ones around the mouth area. These too will be removed during one of the surgeries.
I have googled, binged and searched engine all kind of sites since last Friday! I did come across this Syndrome, but still am not convinced this is her diagnosis. The geneticist has only read about this syndrome. She says she is not a diagnostician, only a researcher, more or less.
Callie does not have ear loss, no eye problems, no nose deformity of any kind. She does not have cleft palate, no bone deformities, spine seems totally intact and healthy when NICU Doc, peditricians, and geneticist examined it. At one year old they will X-Ray spine to see if there is any disorder there. She can easily move all body parts with no problems. She was otherwise given a complete clean bill of health.
She is being feed with a bottle designed for cleft palate.
There is a site that I have found and believe this is more of what she has. Type in macrostomia and it will take your there. There is a picture of a child that looks so much like Callie's problem. Callie has it on both sides of her mouth and it is a tad bit more extreme.
Bilateral Pure Macrostomia! Macrostomia meaning is large mouth. It does go with preauricular (ear) tags also. It mentions that it can be caused by a arterial blood flow during the forming of the mouth region during gestation. As the mouth area is fused and then seperates around 4th to 7th week, Callie's just kept diffussing for a week or so.
She was born with what is called a double vessel, instead of the normal triple vessel umbilical cord. Blood supply could have been easily disrupted with this little problem and is common for one twin to have less flow than the other, even with normal triple vessels. Callie was one artery short!
Her parents report that she is alert and likes to look at her surroundings. Kyndall is acting more like a normal premmie and sleeps a lot more. Both seem to be eating well, but are having to be supplemented, as their mommy's milk still has not come in well. They are nursing with what I call a cheater! lol The hospital supplied them with a syringe with a tiny curved tip, that is filled and then slipped into the side of mouth and babies are actually sucking out of applicator. They just don't know it. It is a three person job with Callie! Mommy sits and holds, One person to hold and refill syringes and another to help Callie's lips to form a better seal. Ha! Now that is what I call dedication. This is what I will be doing starting Sunday. Daddy will be going to work 2 days and I have a feeling my hubbie is not going to feel comfortable with this job duty, so I will have to grow another arm or two. Hey, maybe my swollen Parotid and Mr Hashimotos can come in handy with this! LOL, LOL, LOL!
So, I know all of this is totally off our Thyroid Forum subject, but I felt like with all of your dedicated help and prayers, you night like to follow her progress! Of course, I love research and learning, so I may find it more interesting than others.
We welcome any and all comments and suggestions. As far as we can research there are no cleft palates or deformities in any of our families.
I do have a birth defect that was caused by the DES hormone and some other hormones that were given to my mother during her pregnancy with me.
I have done extensive studying on DES and the DES grandchildren. We now know that My children, DES Grandbabies are showing problems caused by this evil drug. And even my grandson has had to have surgery on his penis to correct a problem that has clearly been found in DES grandsons. My grandson would be considered a DES great-grandson. My son has had surgery to correct a testicular varocies problem, like vericose veins. Now, I can only wonder.....Could Callie be effected too?
DES has been found to cause Cervical Cancer among others,had it, B. Cancer, had it, infertility, I was blessed with 2 miracles --extreme uterus deformities, had it bad. My mother had b. cancer as well. That is the only thing it causes in the women giving the drug. Some of my doctors feel this is a cause for many of my issues
I am extremly blessed and lucky to be where I am today! God is So Good!!
So....who has questions? sass
The twins are just beautiful. I know you are proud grandma. I hope they are both doing much better.
Keep those Prayers Coming! Thank You! It is OAVS--oculo-auriculo-vertebral syndrome or Goldenhar Syndrome. I still have my doubts that this is it. Waiting until see plastic surgeon. I am going to try and post a pic of them on my page! sass
Enjoy your visit with the twins!! Continued prayers to you all!! How are they doing by the way?? Still improving I hope!! :)
COMMUNITY LEADER
No, I've never heard of OVAS - is that an abbreviation? If I get a chance, maybe I'll try to do a bit of research........
Enjoy the babies.........
Enjoy the babies.........
Geneticist is calling it OVAS. At least that is what she thinks. I have done some research on it and am finding very little on OVAS. am not even sure that I am on the right thing, as this does not describe to me what I see! So she goes to plastic surgeon this next week. At least, I will be able to go to that appt, as I am going Sunday and get to stay to the following Sunday. Taking a week off of work. There could be possible spine problems in the future with OVAS occording to the Genetiscist, but she did say she is not a diagnostician and that her chromosone testing came out normal. But OVAS would still be considered a genetic thing??? She has a mild case. It gets so much worse for many children.
I will see what the Surgeon calls it. So ready for Sunday to arrive so I can go see my little bumpkins. Please continue your prayers. Thank You! sass
HAS ANYONE EVER HEARD OF OVAS?????
I will see what the Surgeon calls it. So ready for Sunday to arrive so I can go see my little bumpkins. Please continue your prayers. Thank You! sass
HAS ANYONE EVER HEARD OF OVAS?????
COMMUNITY LEADER
Am so happy to see that both babies are doing better. Still praying for them.
I also just saw the post about the twins. I will be praying for both the precious little angels. HUGS and Blessings to you and the family.
Wow it sounds as if you had a rough time. I'm so glad they are both doing better though. They both sound gorgeous. I hope she continually starts to improve. I will keep everyone in my prayers!
I'm so glad to hear Callie is improving!!! That is a relief!!!
Good to hear Kyndall is doing well too!
They both sound absolutely gorgeous!
Good to hear Kyndall is doing well too!
They both sound absolutely gorgeous!
Just wanted you to know that Callie has made much improvement. We are waiting of Chromosone testing to give the Geneticist a clue of what is going on with her. She has passed all her other testing with flying colors. Brain, kidneys, liver, hearing has all checked out good. Much relief on those issues that the NIC-U doctors had feared. She has a enlarged mouth and multiple skin tags around her ears and a few around the mouth. She is facing multiple plastic surgeries. Her mouth where the corners of lips should stop-did not. So she has a large mouth, where the lips continue on into the face. Gives her a smiling apperance at all times. (Not a bad feature!) She is gorgeous even with the extended mouth. I have done quite a bit of research, from lip anatomy to clift lip. The actual diagnosis is unknown as of yet. But I have found several references to it. Macrostomia is what it was once called and goes from Wide Smiles to Bilateral Congential Macrostomia to Bilateral Transverse Facial Cleft-Bilateral Transverse Lip Cleft, etc. She has it on both sides which is extremely rare. None of the NICU docs or nurses have every seen this condition. It is causing her feeding difficulties, both breast, bottle and several other options as well. Have been stomach feeding her as well as IV. But yesterday, she pulled out her stomach tube and when the attempted to feed her with the tube out of her nose...surprise she was able to suckle much better. She still has some struggles, but we are seeing her gain a little weight back, instead of a lose. Callie has black hair and an olive complexion.
Kyndall, her little sister is doing great. She has light auburn hair and tiny features. She has a tad of jaundice and lost a little weight too, but we have discovered the problem and she is now putting her weight back on too.
Thank You all for your concerns! It has been a lifesaver for me!
Callie had several other issues at birth, but they all seem to be resolved. (Quit breathing, asspirated fluid, kidney and liver questions, Double vessel umbilical cord were the most serious ) ~sass~
Kyndall, her little sister is doing great. She has light auburn hair and tiny features. She has a tad of jaundice and lost a little weight too, but we have discovered the problem and she is now putting her weight back on too.
Thank You all for your concerns! It has been a lifesaver for me!
Callie had several other issues at birth, but they all seem to be resolved. (Quit breathing, asspirated fluid, kidney and liver questions, Double vessel umbilical cord were the most serious ) ~sass~
COMMUNITY LEADER
I'm not sure how I missed this post, but per my PM to you, I am praying for Callie........ Hmmm, I have a great niece named Callie.........
How's the other baby (name?) doing?
Take care....... wishing your family all the best.
How's the other baby (name?) doing?
Take care....... wishing your family all the best.
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