A Sticky Situation

It turns out that putting the tape on Rylan is not as easy as the surgeon made it look.  Because her cleft is wide, a portion of the tape is left exposed and continuously gets wet when she is eating.  This causes the tape to lose its stickiness and its effectiveness.  The portion of the tape on her cheek is still really stuck, so it has become a sad process to have to remove the tape without causing her too much pain.  At times, her cheeks become red and sore, but I just have to keep telling myself that this will help her in the long run.

The surgeon had asked us to come back a week after our first appointment so he could see how she was doing.  He gave me encouragement and told me I was doing a good job with the tape.  His advice was to keep it up and to come back and see him the following week.

Rylan meets the surgeon

Since we knew about Rylan's cleft early in my pregnancy, we had been lucky enough to be able to get a head start on lining up the support people she would need.  Dr. Morrissey had been recommended to me by the Maternal Fetal Medicine staff and we had met with him about a month before she was born.  He showed us pictures of his work, explained the procedures briefly, and told us to call him once Rylan was actually here.  

Our appointment was on November 24, when she was about 3 weeks old.  He looked at her mouth and confirmed that her palate was not involved.  Once again I breathed a sigh of relief.  After his examination of her, he explained that he wanted to start by taping her lips.  He said that while it seems like such a simple thing to do, it really would make a difference in the end result.  He showed me how to put on the tape, pulling one side of her cleft close to the other.  Rylan barely even fussed, which was a good sign that she might handle the next couple of months well.  I left his office with an extra supply of tape and a positive attitude about her treatment.

First Few Days

While in the hospital, I tried nursing but Rylan was having trouble latching on.  She was also having trouble getting food from the bottles, so I decided to just focus on helping her bottle feed.  We are using the Haberman bottles but no one seemed to have any advice on how to help her to eat.  The day after we came home from the hospital, the home care nurse came to see us and suggested we try a regular bottle because she thought Rylan would be able to create suction.  After trying this for a few feedings, we were still having no luck.  I decided to cross cut the nipples on the Haberman bottle and what a difference that made!  Rylan became a good eater in a matter of minutes and began to really enjoy her bottle.

Halloween Treat

On October 31, after roughly 16 hours of labor, Rylan was finally here. We had known since our 20 week ultrasound that Rylan would be born with a cleft lip and possible palate, so the big question in our mind was how severe would it be. We were certainly excited when we finally saw her and found out that it wasn't as bad as we had imagined. She has a unilateral cleft on her left side and a cleft in her gum, but her palate isn't involved.  She really is beautiful!