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Avery – Born 13 January 2013

Hello. My name is Annie, I’m Avery’s mommy! Believe it or not but my 3 month old daughter story starts 30 years ago. I was born with a full cleft palate and a partial cleft lip as well as PRS. I was in the NICU (not sure if that’s what they called it 30 years ago) for 31 days. In that amount of time I had tongue to lip adhesion and had my lip repaired. Over the next 17 years I endured maybe 10 to 12 more surgeries. My jaw surgery was when I was 17. I remember it well!!


Now fast forward 30 years! My daughter was born January 13, 2013. She was almost immediately diagnosed with a soft cleft palate. Unaware of the PRS the nurses said Drs. said that they would be able to care for her in the well baby nursery. I was not able to bring her into my room as she had to be placed on her belly at all times, if she wasn’t her oxygen levels would drop and her breathing sounded rather scary at times. She made it throughout the night with out any major problems. Still unaware of the PRS, I was told that I would be able to attempt nursing. It went as well as we though it would, due to the cleft there was minimal amount of suction. My husband and I went back to my room, we had some visitor coming in. My husband when to meet them in the waiting area, passing the window on the way to the waiting area he sees our beautiful baby girl….blue and the nurse working rapidly to help her. The nursing had cause her tongue to fall back into her airway and she was choking. It was time, she decided for everyone at that point that it was best to transfer to Winnie Palmer Hospital for Women and Children.


We would be in the NICU for the 6 1/2 week. This is where we found out about the PRS. In the first few days we met what felt like a million Drs! The first 3 weeks were the feed and grow stage, we wanted to see if the jaw would grow out on is own. After a couple weeks of feed and grow Dr. Ruiz gave us the go ahead to do jaw distraction. Her jaw had not moved and we felt that it was Avery’s best option. 3 weeks to the day that we arrived in the NICU, she went in for surgery. Surgery was a success! She was intubated and was on lots of morphine and versed for sedation.  For the next 15 days Dr. Ruiz and Dr. Trent would come in everyday to turn her distractors. 10 days after surgery Avery was extubated! Finally on day 11 I got to hold my angel! Day 15 post surgery they moved her jaw enough to remove the arms of the distractors. Now it was time to learn to bottle feed with the Haberman. We were told that this step could take her a while, we needed to take it slow. She just had jaw surgery! Clearly Avery was just as ready to go home as the rest of us. Day 1 of the Haberman, we did one bottle feed and she took 10cc. You can imagine our excitement in knowing that she took anything at all. Day 2, two bottle feedings about 50cc each. Day 3….taking a full 80 to 100cc, she was using the Haberman bottle every other feed. Day 4…all bottle feeds!! That’s all we had left before we got to go home. Over the next few day she did amazing and continued to amaze all her nurses and drs.  Jaw distraction..check, weight..check, Haberman..check, car seat test..check! That was it, time to go home. February 28, 2013 we got to take our sweet baby girl home!


Update, Avery has been home for 7 weeks, she is doing fantastic. She does do speech therapy once a weeks to continue with her feeding. She is due to have surgery on May 24, 2013 to remove the distractors.  And as most of you know another surgery later on to close up her soft cleft. Thanks for reading!