Tuesday, September 13, 2016

Feeding Team Appointment - September 13th, 2016

Yesterday, I was so nervous about your feeding team appointment. You haven't been taking much by bottle, and I figured they were going to say that you needed a gtube. I did not want to have to see you go through another surgery. The more I thought about it, the more nervous I got. This was the first appointment that I actually did not want to go to.
For the last couple months, daddy kept saying that he thought you were getting fed too much. He thought that since you were eating every three hours, you never got the chance to actually be hungry. You never show hunger cues, and you very rarely take the 30 ml that they said you could take by bottle. For anyone that knows me, knows that I am a rule follower, so I never wanted to do anything different than what the doctors told us we could do. Daddy wanted to feed you every 4 hours, and I said we couldn't, that we had to stick with every three. If you went four hours without eating (which happened a few times due to appointments and an ER visit), you ate the full 30 ml. Maybe he was right.
Today, we had the dreaded appointment. You got your weight and length done first. You were 12 lb, 3 oz and 22.5 inches. The SLP and OT came in first. They asked us a bunch of questions. We told them that we didn't think that you were hungry because by the time we did the bottle feed and then tube feed, you would have to eat again in 2 hours. We told them that you usually take anywhere from 7-30 ml by bottle, with the average around 10-15 ml. We said that we thought you would take more if we were to space out your feeds (every 4 hours) and we also said that if we took away your 3 am feed, we felt that you would sleep at least from 10 pm - 6 am. I asked if I could breastfeed now that you will latch. She said that she would ask the dietician. We told them what you were working on with PT and OT, and then it was time to feed you. The SLP asked if we were still okay feeding you in the side lying position, and I said we are okay now, but that you were getting bigger and it was getting harder. She said that we could feed you side lying, and then try a normal position to see how you would do.
We heated up your bottle and then I fed you in the side lying position as the SLP listened to you eat. Half way through, she had me hold you like other babies eat, and you did great. She listened to you the whole time, and said that we would now be allowed to feed you normally. She also said that since you were doing well, you no longer had a limit as to how much you could take by bottle, and you could now take however much you wanted within 20 minutes. We were so happy! We heated up another 20 ml, and you took all 20 by bottle for a total of 55 ml!
Next, the dietician and NP came in. The NP asked a bunch of questions (and wasn't the friendliest). We told her about how you have been vomiting full feeds once or twice a day since mid-August. We told her the last 4 days you haven't vomited at all, but this morning you did. She said that she recommend that we get a pump through insurance to feed you your tube feed over a specified amount of time. We said that we didn't think it was necessary, and she said that if we changed our mind, all we had to do was call. I asked if she recommend that we see a GI doctor, and she said that she didn't think we had to, but that it wouldn't be a bad idea. We expressed to her the same concerns that we expressed with the SLP. The dietician didn't say anything at all, just took notes as we spoke. The NP looked you over and said that you looked good.
The next part of the appointment was where they all go talk together to come up with a plan. We felt so good about the appointment while we were waiting. We were so happy with you taking so much by bottle, and we were so happy that we can now feed you normally. We felt so close to that NG tube coming out!
Except when they came back, we didn't get the news that we wanted. She said that the dietician said that we couldn't feed you every four hours, that we had to stick with every three. She said that you need the calories, and since you are vomiting, increasing the volume and decreasing the feeds to 6 times a day would be counter productive. She said that I wouldn't be able to breastfeed because I wouldn't know how much you took, and because the breast milk wouldn't be fortified. She said that if I wanted to nurse you before bed, that would be fine. However, you aren't hungry now, so how in the world would you want more milk on top of all the milk that you get now? The NP recommended that you see the GI after all. She said that you may not be able to tolerate large feeds, so they would be able to work with us on that. She also recommended that you be fed with the pump. We were a little upset that we couldn't get your feeds to 6 times a day because we feel that you aren't going to progress with your bottle feeds since you aren't hungry. We expressed our concern, and she said that she would send in the dietician so that we could talk to him about our concern.
He said that at your adjusted age of 3.5 months, you should still be eating 7 times a day. He said that it is very rare for a baby of that age to only be eating 6 times a day. He also recommended that we increase your feeds from 105 ml to 110 ml to 115 ml. He said that changing your fortifier to 24 cal instead of 22 cal wasn't a good idea because usually it makes babies throw up, and you are already doing that. He said that if we were to go to 6 feeds a day, we would have to increase your intake during the day, and since you are already throwing up, that wouldn't help you. We told him that we were concerned because our goal was to get the NG tube out, and he said that we eventually will get there, but right now we need to make sure that you are getting the calories that you need. We told him that since our next appointment isn't until December 29th, that we were concerned because we feel like we get nowhere. He said that he is willing to work with us and that we can increase your feeds and see how you do in the next two weeks. If you are doing well, we can call and we will come up with a new plan so that you can progress.
We were a little upset after the appointment because we figured that you could at least eat every 4 hours. However, we have to look at the positives. You are now able to be fed on your back. You can take as much from the bottle as you want, and although you most likely won't take much, we know you can. There was no mention of the gtube - best part of the appointment! Although you will have your NG tube a while longer, we know it will eventually be able to come out. Although I was told I am unable to breastfeed when you finally decided you would latch, you are still able to get breast milk. So although we got some disappointing news, there are definitely positives.
We love you so much and are so happy that we continue taking steps in the right direction. We are so proud of you. We look forward to seeing how well you progress in the feeding area. We know you will over come it all!

Thank you so much to all of you who pray for us and pray for Mason. Our prayers continue to get answered, and we couldn't be happier. Mason is growing and is doing so well with everything. Please continue to pray that he can tolerate the larger feeds without vomiting, and that we can soon progress towards lengthening out the time between feeds.