Friday, May 20, 2016

Devastating News - May 20th, 2016

So, if you recall from the post yesterday, the NP was going to fill me in more about what the ENT said about your tongue tie. So, when I came in this morning, the NP came and told me to sit down so she could tell me what was going on. She said that there are two types of tongue ties - one that is in the front that is easy to clip, and one that is in the back that would need surgery to be fixed. Of course you have the one in the back that would need surgery. The doctor said that he didn't feel comfortable with fixing it right now because you would have to have anesthesia. I asked what some of the long term effects would be of not having surgery and she said that it is possible that you would have some speech issues and you may not be able to do things such as licking an ice cream cone. She said that they would be able to reevaluate you in a few months if we still wanted to do something about it. With all that being said, she then told me some devastating news. You would not be able to breastfeed because your tongue can't stick out far enough to draw out enough milk. I immediately got tears in my eyes and tried to hold it back. She told me that it was okay to cry, and she felt bad giving me bad news on a Friday. She then gave me a hug and left the room. I held you and just sat there crying. Nothing is easy on this journey.
The LC came in to speak with me about their plan to start bottle feeds. Speech did the same. They were going to try to do some bottle feeding at 11:30 and 2:30 to see how you would do and they would come up with a plan after that.
At your 11:30 feed, you were tired. You did not sleep since your 8:30 care. I knew you would be exhausted and probably not do so well. Speech came in and showed me what they would be doing with you and then she started to try to bottle feed. She placed the nipple to your mouth and says that if you did not open, she would not feed you. You had to be ready to eat, and they would not force you to eat anything. You opened your mouth a few times, and you choked a little and your heart rate dropped. She let you come back and waited for you to be ready to try again. The second time it happened she called it quits.
At your 2:30 feed, I wasn't there, but I had asked her to call me to let me know how you did. When she called me, she said that you were wide awake and cuing. Unfortunately, the same thing happened this time, as last time. She said that some preemies just have a difficult time eating, and some learn after a few feeds. She said that they would try again on Monday, and they would work with you every day. She said that if you didn't start to get the hang of it, that they would have to take pictures of you while you are eating to see what is going on. I am assuming they meant a swallow study, but they didn't say that. I will ask tomorrow.
We had a rehearsal dinner to go to tonight so we weren't there after 2, but I called at 10:30 to see how you have been doing. The nurse said the only new thing is your weight. You now weigh 6 lb., 0.7 oz! She said other than that everything is the same. Nothing new to report.
Grammy and Poppy are here for Matt and Courtney's Wedding tomorrow. We are going to come see you in the morning. We won't be able to stay all day like mommy usually does, but at least we will get to see you for a little bit before we go to the wedding. Mommy and daddy love you so much and are praying that you learn how to eat soon. We hate to see you have so many hurdles. However, we know how strong you are and we know that you will get over them. We hope you continue to have a good night and that you get some rest. Night buddy!