Tough Girl!!

Leia was born with a cleft soft palate. Basically it's a hole in the top of her mouth toward the back. The experts say that of all the clefts the soft palate is the best one. You can't tell from the just looking at her and if it was the hard palate it would be more difficult for her to eat.

 

We were not aware of her condition before she was born. We found out when 2 neonatal nurses came to look at her about an hour after she was born. My labor and delivery nurse was going over some paperwork that would have normally been reviewed BEFORE I gave birth but Leia had her own plan. So my nurse is in the middle of this paperwork and the neonatal nurses says "Yep, it's a cleft palate". (Scrrreeeechhhh!!!) I look at my nurse, "What?!"  Like she was giving me the menu she says, "Your baby has a cleft soft palate. She'll need surgery later." 

 

WHAT?!

Are you freaking kidding me?!

 

My doctor and her doctor come to visit us in the hospital the next day and gave a little better explaination. They gave us a few specialist names and said when she is 6 months old she will need surgery to repair and close the whole in her mouth. The lactation nurses said she WILL be able to breastfeed, it will just take her a little bit longer. So I tried for days to get Leia to latch on. They suggested to feed her with a little cup that has a lip while she learns to breastfeed. With the cup she basically laps up the milk with her tongue, and they sent us home. So basically she was eating like nothing. When we saw the pediatrician a couple days later she freaks out about the amount of feed Leia is NOT eating and suggests a Haberman nipple.

 

 

It was a miracle! She sucked down almost a whole bottle the first time she used it! When we met with the specialist he told us that with the cleft palate she will NEVER be able to create suction so would not be able to breastfeed! (Thanks alot lactation nurses! I beat myself up for days trying to get her to breastfeed!) It's pretty much like trying to suck through a straw with a GIANT hole in it.

 

Fast forward 6 months later and here we are on surgery day...

 

 

She was all smiles and looked tiny in the HUGE outfit they gave me to put on her. A nurse came in and took her away. I cried.

The surgery was going to take about an hour so Nick and I went to the cafeteria for breakfast to try to keep our mind off the fact that they were about to put our baby to sleep and cut into her! My mom, dad, Jaymi, and Janie were there for support.

 

After her surgery the doctor came to get us and said she did good and we could go back to post-op to see her.

 

This is what she looked like...

 

She started to wake up and cry the most pitiful cry we had ever heard. Nick and I both started crying. It was so sad and even worse knowing you can't do anything for her but hold and try to comfort her.

 

 

For the next 10 days she was not allowed to put anything in her mouth. No toys, hands, fingers, or bottles. That fun thing in my hand will be how she eats for the next 10 days. It's a spoon that I will pour formula into her mouth. Good times.

 

She did a lot better than I thought she would and was such a trooper! The day after her surgery she was playing with some toys and smiling (as much as she could) at the nurses.

 

So glad every thing went as planned! Leia is such a tough her already! And now she will be able to eat solids and use a real bottle just like a normal kid!