New "Normal"

So, we finally got our newest Andrews home on Friday evening! It has been quite the adjustment. Again, I'd like to say that I am not looking for any sympathy, but I think a lot of us see parents of special needs kids and think, "Wow, that's got to be tough...I could never handle that!" At least I know I did. My special needs kiddo will most likely not be special needs past a few years, but it's going to be a rough few years. My special needs kiddo is thankfully still mostly "normal"...and I can't express how grateful I am for that enough! However, I do think that sometimes, it's nice to let others know what all can be involved in taking care of a special needs kid...not for sympathy, but just because people should know.

My new routine has made me feel like I should go to nursing school lol. Charlotte has a feeding tube as she stopped eating while still in the hospital. They really aren't sure why, but she slowly ate less and less. As someone in the medical profession, I think it's due to all of the meds she's on, changing formula multiple times, having oral thrush for almost 2 weeks, and now, the NG tube seems to be causing her discomfort when she tries to swallow. She was being fed every 3 hours and frankly, that's not something that's a possibility for us when it takes an hour to feed her. I have gradually been increasing the amount of each feed so that we can hopefully get it stretched out to every 4 hours. I've been able to get rid of the 2 am feeding. I have to work a feeding pump...not that complicated...insert feeding tubes...when she takes them out or every month...give meds through feeding tube...and had to adjust her meds to help her stop spitting/throwing up with most feeds.

Our current schedule is:
5 am- feed
8 am-4 meds (Mon-Th), 5 meds (Fri-Sun), and feed
10 am- med
11 am- feed
2 pm- feed
4 pm- meds
5 pm- feed
8 pm- meds and feed
10 pm- med
11 pm- feed
12 am- med

Matt and I are sharing the load...otherwise it would be an even bigger struggle! We have a back pack that is made specifically for the feeding tube and pump that allows us to travel and feed her. I was really discouraged, at first, thinking I'd never be able to do anything or go anywhere other than doctor visits until she starts eating, but it really hasn't taken long to adjust. She's such a sweet, happy baby and has adjusted to being home after 2 months remarkably well! As you can see in the picture above, Anabeth is totally in love and is such a sweet big sister! She's definitely having moments of jealousy and it's sinking in that Charlotte has a lot of needs that sometimes take away from our ability to focus on her, but she's been awesome at jumping in to help and I definitely encourage that so she always feels like she's a part of things! Thank you all again for all of the prayers and sweet thoughts sent our way! We appreciate all of the love and support we've been shown and it's made things so much easier! Life is definitely different and we're going to have so much more on our plates than we ever could have imagined, but we're going to get through it and it's all going to be worth it as she meets each milestone and conquers each obstacle she's going to face!

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