We just got home from the feed/swallow study. The doctor took us into a room to watch her eat before the study. Ailyn preformed perfect, showing how terrible she eats. She looked into Ailyn's mouth and immediately saw that Ailyn tongue is tied. Normally, this is caught at birth. I am not sure why this was never caught. She has always had issues with feedings, she has always taken over a hour to eat a 3 ounce bottle. I have stressed to every doctor how terrible she eats. I am thinking Ailyn has too many doctors and they just assume the other is taken care of it. I have always been thrilled with her doctors. I have said from birth that we have had the most amazing doctors care for Ailyn. So I am not saying it was negligence, I am just upset it was never caught. We didn't do the feed/swallow study.http://www.tonguetie.net/index.php?option=com_content&task=view&id=2&Itemid=2
I called her OT and she apologized for never seeing this and said it all makes sense now. She has seen many children get "clipped" and the children started feeding perfect after a few days.
Our pediatrician had a different view. He says there is no evidence that it affects feeding and weight gain. He referred us to an ENT to look further into it. I am sure it will take a couple months or more to get an appointment. Hopefully, we can talk the GI into getting us in sooner.
We have had to deal with hearing different opinions for each doctor. One will say "why isn't she eating solids???" the other will say "No, solids" We have learned to bite our tongue and know they are all doing their best to help Ailyn.
It all makes sense to me now. I wanted to nurse so bad in the NICU. I nursed Camden with no problem for 22 months. Ailyn never latched on right, she made a clicking noise when she ate. She never was able to suck hard enough to pull down my milk. I agreed to stop nursing so she didn't waste calories feeding. It was the hardest decision I had to make, but I wanted to do what was best for Ailyn. (no worries, I am not upset with anyone about this...I know it was best, just hard on Mommy)
Ailyn has always taking so long to feed. She will play with the bottle and lose interest after a 1/2 ounce. Getting 3 ounces into her is hard work for us. She has never had a good suck on the nipple, she makes a clicking noise like she can't get good suction.
Ailyn sucks her thumb....or tries too. I always thought it was odd how she sucked her thumb!
Aaron and I are looking into doing what's best for Ailyn. We are following our gut instincts and pushing to get "clipped"
That wasn't all :( Since the NICU, Ailyn has had a lot of congestion in her throat. She sounds like she has a cold. She has never had a cold. The NICU made sure there was no infection. No one knew what it was. One of her doctors (not sure which one, we have a ton) said it's normal for preemies and she will grow out of it. So we stopped asking.
Ailyn was doing her growl that she does (you can see a video of her doing it on the side bar) We just thought she was just growling at us! The doctor noticed how quiet Ailyn is. Her coos are very low. The doctor said she sounded like she had a "nasal voice". She said this might be VPI. not sure what the growling means. She did say some babies do it. The ENT will look into it more. We don't know much about VPI yet so I can't answer questions yet. http://www.craniofacial.vcu.edu/conditions/vpi.html
I am so glad to have some answers. I hope this is the cause of her feeding issues and the procedure helps. Thank you for the well wishes for today!!! I will keep you updated.
