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Welcome to Savannah's Journey.
Savannah was born October 2010 after a very normal and uneventful pregnancy. Within 24 hours of birth she was diagnosed with a cleft palate, tongue tie and an abnormally small chin. The trio of these birth defects is known as Pierre Robin Sequence. This blog is to show her progress with PRS and to share our surgical and medical experiences.
If your child has PRS I would love to hear from you! Feel free to post your blog (if you have one) address in the comments section so I can follow along with your experiences too!
If your child has PRS I would love to hear from you! Feel free to post your blog (if you have one) address in the comments section so I can follow along with your experiences too!
Did you know?
PRS occurs in approximately 1 out of 7500-8000 births. Cleft palate and/or cleft lip occurs in approximately 1 out of 700 births.
Surgeries
Savannah's palate reconstruction surgery was completed on May 24th 2011.
Ear tubes replaced October 25th 2012.
Eye exam under general anesthesia November 8th, 2012.
"Z-plasty" aka Palate Lengthening April 22, 2014.
Ear tubes replaced October 25th 2012.
Eye exam under general anesthesia November 8th, 2012.
"Z-plasty" aka Palate Lengthening April 22, 2014.
Followers
Blogging: Never before have so many people with so
little to say said so much to so few.
little to say said so much to so few.
Hi Sav's Mom,
ReplyDeleteI just found your blog and have found it extremely helpful. I have a 34 weaker currently in the NICU here in So Cal. She has a cleft palate along with a diagnosis of PRS. The geneticist doesn't believe there is Sticklers, just isolated PRS. I am a FTM, so this is quite overwhelming for me at this point. We have gotten over our preemie issues (had PDA surgery a few weeks ago) and are now just working on feeding. Weak suction. She is working on nipping but does half of her feedings by gavage.
She will be reassessed again in a week and a half, at 42 weeks. At that point, if she is still having issues feeding, she will have a G tube inserted. Keeping our fingers crossed that she gets it soon. Anyways, I would love to talk more to you... We are close to each other and finally another person with a PRS darling.
ReplyDeleteLorna
N4arace@msn.com
Lorna,
ReplyDeleteI am glad you are finding my blog helpful! It sounds like your baby is doing well for being a preemie. With having a cleft palate, she won't be able to create any suction to feed. I hope they are working with you to feed using a special cleft bottle. We were lucky and never had to do tube feeding. We used a mead johnson bottle and it was priceless for feedings. We were able to just squeeze the milk into her mouth as she drank it. It takes getting used to since we had to learn what speed worked best for her.
I also agree as a FTM it is so overwhelming! Just hang in there and take it one day at a time! I hope your little one continues to grow and thrive. If you want to talk or want any help feel free to email me. jen.ehlers@gmail.com