Chloe went back to ACH for an ENT checkup today. She weighed 8 pounds 4 ounces and was almost 20 inches long!!! Her mom and dad have been doing a great job of taking care of her! Here’s a summary of the visit:
The nutritionalist went over the feeding method, amounts, and types of milks that Chloe is getting and then advised that the caloric intake needed to be increased by mixing larger amounts of formula to water and to breast milk. Chloe must continue to get 8 bottle feedings a day and continue to increase the size of each feeding every week. To see if Chloe could take more in less time, she suggested trying another nipple type that hadn’t been tried since Chloe’s first week. She also suggested trying a soy formula to see if it helped with the reflux, but ok’d any formula that they thought worked the best. Chloe will be on this schedule for several more months as gaining weight and growing is the priority.
Nurse Emily gathered lots of information on Chloe’s “noisy” breathing and sleeping habits. She told us that Chloe’s surgery would not take place until she was about a year old. Chloe will have to be at least 20 pounds before the surgery. She also needs some time for the jaw to grow. The surgery will involve using only 'Chloe parts' and involves building a palate with exisiting tissue and muscle layers. The surgery will take 2.5 hours and if all goes as expected, Chloe will spend only one night in the hospital (YEA!) Before the surgery, she has to be completely off the bottle and able to be fed by a cup without sucking. She will have to wear NO-NO’s for three weeks afterwards – these are boards on her arms to keep her elbows from bending so she can not touch her mouth or put anything in it (I thought this was the worst news of the day!)
Dr. Buckmiller examined Chloe and said she would have no problem correcting her mouth. She suggested a wedge for Chloe to sleep on for her reflux and her breathing. The wedge is a large foam wedge with straps that hold her in place and have a hollow spot for her bootie. She also advised that Chloe should sleep on her side as her tongue goes back when she is flat on her back. She wants to see Chloe again in a month and then every two months after that.
This appointment didn’t include the genetics or physical therapy folks, but Mom and Dad got the contact information to pursue those follow-ups.
Chloe took a bottle and then slept all the way home! This image shows her on the new wedge after they got home.
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