Rylan's First Christmas

Although this has nothing to do with her cleft journey, I just had to share some pictures from Christmas.  Even though she didn't have any idea what was going on, it was memorable for me!

Call from Dr. Morrissey

Yesterday I heard back from the surgeon's office.  Instead of coming in a few days later to see him, we now have an appointment with the dentist on January 4 to get the impression of her mouth done for the mold.  I'm a little nervous about how this will go.  I know adults who hate having things done at the dentist (myself included) so I can only imagine how an infant is going to react to it.

Nasoalveolar Mold

On December 8, we went back to Dr. Morrissey for the third time.  Once again he was pleased with the progress of the tape and told me to keep pulling her lips as tight as possible.  Because of Rylan's cleft, the base of her nose is also crooked and this was the next thing he wanted to focus on.  He explained a procedure that would force her to wear a retainer-like device in her mouth, with stints that would go up into her nostrils.  A dentist would make an impression of her mouth and then an orthodontist would create the mold.  Every week or so, the orthodontist would need to tighten the mold.  He told me that he would speak with the dentist and orthodontist he works with and get back to me with a more definite plan for appointments.  Meanwhile, we set-up an appointment to come see him again two weeks later.

Of course as soon as I got home, I went online to research the nasoalveolar mold.  It looks like a promising step in her treatment and many families had great results.  Although it will be uncomfortable for her at first, she will quickly get used to it.  Now I just need to wait to hear back from the surgeon.

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!