We met...
{A Speech-Language Pathologist and a Speech Pathology Student}
I had the student pegged from the beginning. She was in the hallway when we walked back to our exam room. I remember that deer in headlights look. It wasn't that long ago.
The speech pathologist that we met with asked us about feeding. I explained to her that we were using the Mead-Johnson Cleft Lip/Cleft Palatebottles that they gave us in the hospital with a standard orthodontic nipple because Emmalyn didn't like the nipples that came with the Mead-Johnson bottles. I thought she was doing ok with these, but her meals were lengthy, usually greater than 30 minutes, and often she acted like she was getting too much at once and would pull back and try and catch her breath.
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| Image Courtesy of Google Images |
The SLP said that there were 2 things that made the Mead-Johnson bottle awesome. The first was the fact that you can squeeze them to assist with fluid flowing through the nipple. The other thing that made the Mead-Johnson bottle unique for kids with clefts is the cross cut nipple. This means the opening in the nipple is literally shaped like an X. This makes sucking/flow easier.
So she cut the tip of the bottle.
This was my first guilty parent moment of the day. As an SLP, someone who has been trained in feeding/swallowing problems, I honestly thought Emmalyn was doing ok. She appeared to be getting a good suction, but she's really struggling a lot to eat. One pair of scissors to her nipples, and her meal time went from 30+ minutes to 10 minutes.
In my defense, I've NEVER seen a patient with a cleft lip or cleft palate!
She also said that excess gas was normal for cleft palate kids, but her excess spit up/vomiting was not.
{An Otolaryngologist/ENT}
The ENT came in and took a quick peak in Emmalyn's mouth. He stated that as far as clefting goes, her kind was definitely the most mild. He also explained that children with cleft lip/palate are prone to more ear infections because the muscles that open and close the eustation tube are tied in to the muscles of the soft palate. Because the muscles in her soft palate aren't formed correctly, then her eustation tubes probably aren't opening and closing correctly. This puts her at a higher risk of ear infections and usually when one of the repair surgeries are done, then they go in and put tubes in her ears. He said if she needed the tubes earlier, that they could put them in earlier. He also said that they would continue to test her hearing over time, but because she passed her newborn hearing screening, he thought any issues that came up would be secondary to ear infections.
{A Photographer}
A guy came in to take before and after pictures of Emmalyn. She was very upset about having her pacifier removed from her mouth and her pictures probably didn't have the most pleasant look to them.
{A Social Worker}
She basically came in to say that she helped with insurance and billing, helped families get assistance if needed, and for caregiver support. She also told us about a Facebook support group.
{A Pediatric Psychologist}
This guy was kind of a hippie. He said he was there to support children and there families that have long term involvement with the medical community. He said that Emmalyn would probably be followed by the craniofacial team until she was 18 or so. He also asked me for one word to describe her. The first word that came to my head was cranky. Looking back, it probably wasn't the best word to describe her, but really, how do you appropriately describe a 4 week old in one word.
{A Plastic Surgeon}
The plastic surgeon came in. She was kind of a blur. My dad compared her to a tornado. That's pretty much adequate. She looked in Emmalyn's mouth and said, "Oh, her surgery will be easy. I did 3 of these on Tuesday." It was really nice to talk to someone who knew what they were doing. She said that the surgery would probably take place between 9-12 months, and she was looking at doing it in December. She said Emmalyn would be in the hospital for 24 hours and we would have a follow up in 3 to 4 weeks.
{A Pediatrician and Pediatric Resident}
This guy was kind of intense. He kind of led me to my bad mommy #2 moment. We talked about prenatal care, which I started in the first trimester, and prenatal drug/alcohol use (none). We then talked about weight gain and feeding and he basically said that she should weigh more than she does, and that her not being back at her birthweight by 3 weeks out she was at risk for developing failure to thrive (mom fail).
He told us that the only reason to fix her palate was to allow her to develop normal adult speech patterns
He also talked to us about some of the complications that may require repeat surgeries. As she grows, her palate may require another repair to increase contact with the back of the mouth for more normal speech. In addition, sometimes cleft palate babies have bottom jaws that don't grow properly which also results in need for another surgery.
{A Pediatric Dentist}
The pediatric dentist took a quick peak in Em's mouth and basically said that kids with cleft palates are more likely to develop cavities and we should start cleaning her gums with a wet washcloth now.
{An Oral Surgeon}
This guy was obviously a student. The door to our exam room was open and he looked at his supervisor and said, "Do I just walk in?" And I said, "of course. Come on in!" He introduced himself and basically said they were here if we needed them, but since Em didn't have any maxillofacial abnormalities, they didn't think that we would need them.
Overall, it was a good visit. I was impressed with there efficiency and I wasn't nearly as overwhelmed with information as I thought I would be.
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