May 12th 2021 was the last time I had decent sleep. This had been quite the adjustment, but having Xavier home has been the best thing ever.
After our first week home, Leonard went back to work (downstairs), which meant that I had the baby most of the time. He often takes breaks to be with him and we created a schedule so that we had equal feeding times. The first couple weeks home we fed him with a syringe through his G-tube, which meant we really couldn’t move around. At one of his follow up appointments we decided to ask for a pump and feeds have been much better. He was getting fed 6 times a day but his pediatrician got us on a plan to get rid of his 4am feed which definitely helps Mom and Dad.
My aunt came up from Texas to spend a week helping us and it was the best thing ever!! She cooked breakfast damn near every morning (something I haven’t done in so long) and she basically had Xavier majority of the time which meant I could take a much needed nap, run errands, or clean. She caught on quickly with feeds, and cleaning his g-tube to the point I didn’t even need to remind her of anything. She plans on returning a few more times this summer for extended stays and I am happy to have her. My mom came for a few days while my Auntie was here and let me tell you, having both of them tag team was the best. She held down dinner and cleaning as well. This is the true definition of spoiled ok!!! Speaking of my mom, she cried about three different times while she was here. I had to remind myself that literally nobody has seen him in person but me and Leonard, so I let her have her moments cuz I wanted to cry when both of them left within 12 hours of each other.
We are still awaiting his First Steps evaluation to determine if he will get all the necessary therapies. I probably could’ve done it virtually to get in quicker, but I really want them to see him in person. I’m supposed to return to work July 1st and I have a ton of anxiety about it. I randomly checked my email a couple days ago and just had to close it back. I still don’t have confirmation of a sitter so as of now, it’ll be me and Leonard switching off. My auntie is coming for two weeks when I go back so that will be a little bit of relief, but once she’s gone it’s back to us two again. Not to mention, my job is now wanting every body back full time by Aug 2. I just don’t see how that’s going to work for me. I’ve talked to my boss about it and I have her full support, but we have to get the rest of the executive team on board which I hope won’t be so difficult since the CEO knows my situation and asks about Xavier all the time.
Any hoo, baby boy is doing great! We hang out, take naps, go on family walks around the neighborhood and he sleeps through the night. Speaking of sleep, like I said in the beginning, I don’t get any. He has a montior that tracks his oxygen and heartbeat so depeding on what he’s doing it’ll go off. During the day isn’t too bad, it’s just when he sleeps. Everyone’s heart rate drops when they sleep, just his is being monitored and it goes off constantly!!! My mom said when she comes back, the baby can sleep in her room so that I can get some type of sleep and I’m so excited. I have this inkling that I still won’t get any sleep but we’ll try it. Xay is still handsy and tries to remove his oxygen tube often so I keep his hands locked up in socks lol. I’m also trying to keep him from pulling his g-tube out too. Leonard and I try to do some of the therapy exercises we saw while he was in the hospital, but he still hates tummy time. This kid smiles and laughs are so infectious and I adore the way he looks at me. I stare at him all the time and just still in shock that he’s home.