Cleft Palate Update

Well this is it. We had our HUGE doctor's appointment with Raegan's team last Wednesday.

Our appointment was at 8am in downtown Dallas. Our house is about 45 minutes away, but with morning traffic, it takes double that time. So we left our house at 6:30am which was tough on Raegan because she normally sleeps until 8-8:30am. She fell asleep right as we pulled into the hospital. Great.

The point of this appointment was to allow every part of her team to meet with us. This appointment last hours. HOURS! 

Raegan was a champ, for most of it. She was crawling all over the room and wanting to be into EVERYTHING! It was tough listening to the doctors when she was crawling all over me. But we made it through.

After all our appointments our ENT sent us to Audiology for a hearing test. During our meeting with the ENT she said she had fluid on her ears which is to be expected with a cleft palate baby since their ear canals are smaller and she's had a cold for about a week. 

So off to audiology we went. She checked Raegan's ears again and confirmed fluid on her ears. Then she did a hearing test. She had Raegan sit in my lap in a booth. There was a clear glass looking out where the audiologist sat. There were a set of speakers on either side of us and she would talk to Raegan through those. Raegan responded each time to her voice, but when she started doing just sounds, Raegan stopped turning to look at the speaker. My heart just sank. I had noticed recently that I was having to say Raegan's name multiple times before she would turn to me, but I didn't think anything of it.

After the test she said Raegan showed signs of mild hearing loss. This is to be expected of cleft palate babies which is why they suggest doing tubes in their ears during their repair surgery, which we are doing. She didn't seem too worried since Raegan passed her newborn hearing test and had a cold at the time of the test. She said we would retest 8 weeks after her surgery. I am praying the results come back perfect. I don't want anything else to get in the way of her developing normally.

Her surgery has been scheduled for April 30 and we will be spending at least 1 night in the hospital, maybe more. With Raegan's diagnosis of Pierre Robin, she is at a higher risk of complications after surgery. Her airway is small and since they are closing the cleft, it will make her airway smaller. There will also be swelling after surgery which may cause her to struggle with breathing. So her cranio-facial surgeon (who is doing the cleft repair) wanted us to be prepared for her to be in the ICU and to also possibly stay a few days compared to 1 day like other cleft repair patients.

I will try my best to do a quick post after her surgery to update everyone on her progress. Prayers that the surgery would go perfectly, there would be no complications, and that her recovery is quick.

For years I prayed for this child. For years I begged God to give Kyle and I a baby. And now we have her. No matter the struggles we have had or will continue to have, I wouldn't trade her for anything. God gave us her because He knew we could be strong. But we are only strong because of Him. He has given us the strength to push through when we felt weak. Only through His amazing guidance and grace have we gotten where we are today. I was meant to be this little one's mama bear and I wouldn't have it any other way.