Pregnancy Weeks 33-40 - Researched cleft techniques, interviewed surgeons, and finally decided to use the two stage palate repair Soft palate repair at 3 months, then hard palate repair at 18 months. We chose Dr. Richard Ha and his team for Nami's repairs.
Day 1 - March 19, 2013 - Nami arrives. It is confirmed that he has a bi-lateral complete cleft lip and palate. Everything else checks out perfectly. He passes his hearing test.
Day 5 - Nami gets fitted for NAM. We are scheduled to visit Dr. Trovato every week to readjust his NAM until he has his lip surgery. (Side Note: You must clean the NAM by taking the retainer stents out of his mouth, cleaning the Fixodent off the device and the inside of his mouth. To get the Fixodent out of his mouth, I found that using a dry baby bath rag worked best. We cleaned the NAM with dishwasher soap and water. Then putting not too much but not too little Fixodent on the NAM and strategically slipping the NAM back in the mouth and stents in the nose. Then using a liquid glue to put the tape onto the NAM and lips. The tape is probably the most important thing to understand, because that is what helps lengthen the philtrum and outer lips for the surgeon. Then you must change the tape 4 times daily in addition to the NAM cleansing. This is a very tedious and time consuming commitment. BUT SO WORTH IT!!! If at any time you think there is erosion or irritation inside the nostrils caused by the nose stents, please don't use it and wait until your next appointment to get the NAM readjusted.)
3 Months 15 Days - Nami no longer needs his NAM! He is scheduled for surgery on July 10th!
3 Months 21 Days - Nami has his soft palate and lip repair surgery, and has tubes placed in his ears. It was successful! He has to wear no no's until his sutures come out, and we have to feed him with a syringe and catheter. (Make sure you ask for instructions on how to clean the ears now that the tubes are in and get scheduled for the post-op appointment. See 10 and 12 Months)
3 Months 27 Days - Sutures came out, and no longer needed the no no's. Silicone on his upper lip, daily massage on his upper lip with vitamin E.
4 Months - Off syringe and catheter, can finally bottle feed again!
4 Months 13 Days - Stents get taken out of his nose, we also switched him to the pigeon bottle.
6 Months - No longer need to use silicone! Still need to massage upper lip with vitamin E. Will need to do this on a regular basis. (Side Note: We start to brush his gums, preparing for teeth to come in. We used the little teether rubber tooth brush, just to get him use to a routine.)
10 Months - Started to have dark yellow and orange mucus leak out of his ear. Called ENT and they informed us that we were suppose to have instructions to clean his ears since his tubes were in (back in July!) every week. Prescribed some ear antibiotics to put in his ear. Our pediatrician said he had a minor swimmers ear infection, and it cleared up rather quickly. We now have the instructions to clean his ears weekly. We use 1/2 cup Distilled Water and 1/2 Cup Peroxide and use a bulb syringe to flush out his ears. As long as there is no mucus we do not need to use the antibiotics. (Side Note: We brush his teeth and massage his lip every morning and night. He still doesn't like to put anything in his mouth. He will not try any type of solid foods yet. He can walk after he has been assisted to stand.)
12 Months - Hearing Test (Post Op appointment that was never scheduled... this should've been done shortly after his 3 month surgery) He passed. His ears looked great! (Side Note: He finally eats solid foods. He can drink from a Nuby Soft spout sippy cup. He can say over 10 words, he dances and walks independently)
13 Months 28 Days - Pre-Op appointment for his 18 month Surgery to repair his hard palate.
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