Today they started Kayleigh on continuous feeds with the Neocate. Over the amount of feeds she has gotten, she has aspirated half. That means she is digesting half of her feeds too, so we have to try and stay positive. Aimee and I have been getting one of those conscious feelings in our stomach about her feeds that we will need everyone's advice on.
Out of all the feeds Kayleigh has gotten from day one, the breast milk was the only thing that she digested well and made it to the maximum feed amount (15ml every 3 hours). The only reason they took her off of it was because her blood sugar level was low. So when they took her off the breast milk, they decided to put her on straight formula. Soon after her first backup, we pressed for them to fortify the breast milk. Then, we ran in to another backing up issue and that led them to just do the Neocate.
Today, Kayleigh is aspirating more than usual and after two days of her tummy looking great, it is starting to get firm again. I am afraid we are going to run in to the same issue with it backing up. We just have a bad feeling, we don't know what to do and we certainly don't want to have her go without feeds for a couple days again. Aimee and I feel more than ever that the breast milk is best, but has anyone had the experience with maybe doing plain breast milk and use a little bit TPN (Triple Mix) to help with the blood sugar??? I know that doing a lot of TPN, it is not good for their system and can cause major issues, but if we keep running in to problems with her tummy issues on other feeds, she will be on TPN more than we want anyways. I also know that breast milk may not have a lot of calories, but it won't matter if she isn't getting the feeds anyways. The TPN has calories, but we don't want to give her something that can be harmful in the long run.
We are thinking of talking to doctors in to doing plain breast milk and just adding a little TPN at a time to keep her blood sugars up. For those with knowledge or experience, is that a good or bad idea???? Even though she just started the Neocate today and has been on continuous feeds, do you think it is too early to make a change or should we wait to see if she gets better? I have heard great things about Neocate, but Aimee and I were reading this article tonight about the risks of formulas and fortifiers:
Other than that, Kayleigh was having a good day. They dropped her from 6 to 5 liters on her air flow and she was sitting around 23% all day. She had no brady's and only a couple desats, but she was able to recover quickly on her own. Her vitals were good and she has been holding her temperature very well. Aimee held her for a couple hours and she was very peaceful. I am much happier to see that she is not as irritated lately. I really feel that the two procedures they performed on her and the massive turd she finally passed through her system was the reason for her attitude problem. I don't blame her for being so grumpy and boy did she have me worried. I have one girl in the NICU and another who wants to grow up too fast already. Lord, please give me the strength. (ha-ha)
Please look in to this with us and give us a helping hand. I want the best for Kayleigh and when we turned to you all for help at the beginning when she was growing behind with no amniotic fluid, we listened and she beat the odds. I know she can beat this hurdle, but since Kayleigh can't tell us what she needs, we need to help. I would love to hear from anyone and everyone who has some or a lot of experience with this.
Thank you all so much. You are a huge help!
The Freemans :)