Friday, March 22, 2013


We are going to tons of doctors. Right after I got home from the pediatrician I started calling and making appointments.  I called all the people he referred me to. I also called NYU's cleft palate center and made an appointment there.  Everyone said I have to be wrong because there is no way the NICU could have missed that.  He was there 106 days. He was intubated numerous times. He had feeding tubes placed many times.  Seriously, they were down his throat a lot.

On Tuesday I went to the cardiologist.  Jack had an echocardiogram and an EKG. We met the cardiologist and she was really great. Jack's PDA is closed.  She said he was cleared for cardiology and doesn't need to come back. Before we left she introduced us to the pulmonologist.  I really liked her too.  We have an appointment with her next week.

On Thursday we had an appointment with the gastroenterologist. He was very nice. He told me to increase the cereal in Jack's formula to a full tablespoon per two ounces and he changed his Zantac dose. After that we drove to Manhattan to see the cleft palate specialist. His name is Dr. Staffenberg and he was really great. Jack does have a submucus cleft palate. I asked the doctor how it could be that the NICU didn't pick it up when Jack was there 106 days he just said, " I reserve judgement."

Cleft palate is a relatively common birth defect.  I am blown away that they missed this. It looks so obvious to me. He has a huge ridge running down the roof of his mouth where you can tell the bones  fuse. His type of cleft palate is covered by skin, but the doctor said the muscle is not closed in the back of his mouth ( the soft palate). You can't see a hole because the tissue is over it but it causes him problems.  This is why he couldn't feed, why he dribbled, why he refluxed and why he failed the hearing test.  Because the muscle is not together when he swallows it goes into his ears and dribbles out his mouth.

Dr. Staffenberg gave me the name of the cleft palate team coordinator do I can make an appointment to see the whole team.

So we will have a lot of doctors in our future and I am working on processing all this.

Thanks for all the good thoughts and prayers!


  1. ME! The cleft palate is much better than hearing loss, yes? It's a one-time fix rather than a lifetime? If so, that's really good news, although I'm with you on wondering how they missed it. He's in great hands with you. I hope we see you in Oregon this summer!

  2. HI Nancy!! Yes, we will be coming to Oregon. He still has the hearing loss, it is likely they can correct it though. That is good. If it were from all the drugs he was on it would be unlikely they could fix it.

    He is as cute as a button and a good sleeper.

    We are all so happy to finally be together!

  3. How on Earth did they miss that!?! I'm glad you have found a good team of doctors.