Caroline Rae
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Caroline Rae was born on January 4, 1999 with what we thought to be a "simple cleft palate." I had had a normal happy pregnancy and was induced one week before my due date - at 6:41pm our 8lb. 14.4oz/21inch Caroline entered the world - little did we know what she was going to face. She stopped breathing in the admissions nursery because her tongue fell back and choked her - she was transferred to the NICU where she spent a week. We finally got a correct diagnoses two days after she was born. No one knew what we were really dealing with - the doctor in the NICU put her through a gammet of tests to try and identify other "defects" but never bothered to examine her airway and her respiratory system. So, one week after she was born we brought Caroline home with the understanding that we were up against a feeding issue and that was it and we would have no other problems as long as we kept her on her side or on her tummy! Well, ten days later she was admitted to Children's Medical Center of Dallas for "Failure to Thrive" - she had dropped below 8 pounds and was completely exhausted all the time. A week later we brought her home again with an N-G tube and an arsenal of Reflux medications. We thought we were getting on a good path. Well, little did we know that she picked up a nasty virus while in the hospital - so we were back in the Children's ER the next day with Caroline in respiratory distress - an ENT Surgeon examined her and before we knew it she was scheduled for surgery the next day. January 29, 1999 Caroline got her trach and also a G-tube. Since that day she has thrived. We started her on a Passy-Muir valve February 23rd, she had her first palate repair on April 19 and soon after that we started capping her trach. On June 2, 1999 at 11:16am I put the cap on her trach and basically never took it off - it was as if all of sudden her little tough body was ready - She had developed her airways on her own and really built them up - we had a sleep study performed on June 16 and she passed with flying colors - her trache came out on June 28th and she is doing great. Before the trach came out her doctor was calling her "Cap-Queen" now he is calling her "The Wonder Baby." He still is not sure what to make of it - Caroline is the youngest child with Pierre Robin that he has ever decannulated!!!! She is truly or little miracle. Despite her severe acid reflux and along with everything else she is such a great baby - she has developed no oral aversions (a big thanks to our Early Intervention Speech Therapists Amy and Jennifer) - she puts everything in her mouth, developmentally she is right on target...the best is she has finally found her tongue - YEAH - she is so proud of it - as you can see she loves to show it off!!!!
- Ellen and Chuck, e-mail – CBNEB@aol.com
