Friday, September 17, 2010

Meeting with the Cleft Team

We met with the cleft team on Tuesday of this week and everything went very well. Nikolas weighed in at 8 lbs 10 oz! That is almost a pound in a week! They were very pleased with his weight gain and so were we! I am pumping and he gets breast milk exclusively, so it takes a lot of time but obviously its well worth it because he's doing so well.
Well he will have his first surgery at about 3 months old. It's not going to be his formal lip surgery to make it look 'pretty', it's called a stitch procedure and they basically just sew his lips together with about 8 or 9 stitches. This will take the place of the tape he has to wear now, which is very annoying. Nick hates when we put it on and when we have to replace it is even worse. He screams bloody murder when we have to remove the duoderm, which sits under the tape and doesn't have to be changed very often but it's painful to remove from his delicate skin. The procedure will be done by Dr. Jang, his doctor, Dr. Kaye will be on maternity leave then. But she will be back to do his formal lip procedure in December or January.
He also still has fluid in both his ears, the ENT nurse practitioner that we saw said that he might just have fluid in his ears and that's how he is. We've been keeping him elevated since he was in the hospital but it hasn't helped and he will eventually need tubes put in to help drain the fluid. She explained that sometimes it doesn't work though, with babies with cleft palates sometimes when they spit-up it can come out of their ears because the eustachian tubes are more straightened than sloping. There can also be a lot of drainage that doesn't go away which can be a mess to deal with. I just really want him to be able to hear. I know he has some hearing loss but I know he will be able to hear better overall if he doesn't have the fluid in his ears. But it may not be until he is 6 months old that they will do tubes and by then he will have lost so much time and will have lost out on hearing for so long that he will be really behind on speech and development. It breaks my heart to know there is nothing I can do to make things better for his hearing and sight. We still don't know much about his vision yet either, he sees the opthamologist in a couple weeks so maybe we will know a little more information then.
He has about half a dozen other appointments with other specialists, lets see, there's neurology, nephrology, urology, hearing and speech to have another hearing test done, ENT, Occupational Therapy, Genetics, and we have Infant Toddler services coming out next week as well.
It would be extremely overwhelming if I had to take Benjamin with us to all of the appointments but thankfully my father-in-law, Theodore, is able to watch Ben when Nick has his appointments! I am so grateful to him!
But overall, he is doing really good, he's eating well and sleeps A LOT! He wakes up about twice a night but he sleeps almost all day long, only waking up to eat or poop!
We still keep taking everything one day at a time and we are just working on growing right now!


  1. We think about you and Nikolas often, continued prayers from our family to yours!

  2. Thanks for the update. There's a lot of people here in Manhattan that are praying for and falling in love with Nikolas. Thanks also for your generosity to us. I think Amy is coming up this weekend to raid your stash... Mason is growing like a weed (we think), no official weight check as of late.