Tuesday, March 4, 2014

Surgery Confirmed

Today we scheduled Savannah's surgery for April 22nd. More details to follow in the next couple weeks.


  1. Hi Sav's Mom,

    I 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.

  2. 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.


  3. Lorna,
    I 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