Nighttime Nursing

     This one caught us off guard, and it’s been an interesting process. Our nighttime nurse...left. Our last night with her was the 17th. There was miscommunication between me and the agency so I'm not exactly sure when she gave her notice, but we found on the morning of a Monday that she wasn't coming that night. Honestly, though, it was God's timing because I opened the email right at the beginning of my virtual counseling session. It was incredibly healthy to talk through those feelings and our new situation with her. Brad and I are not angry with our nurse. It's just a little disappointing and sad. We know why she left. We understand. We are so grateful. She really did change our lives. She gave me my life back--8 months ago now. You may think that sounds like an exaggeration, but I am confident it is not. She worked with us through formula pukes, colds, an ER run, more colds, a move. She cared for him in a pack and play, bending down to him so that she could help him fall asleep. It was sweet to hear her talk to him. He laughed at her a lot. He always thought her temperature check was funny. 

    Being without a nighttime nurse, it's a real strange thing. I think I've expressed on here before some of the feelings of anxiousness that come with it for me. It's easy to worry about how she's doing and worry about her leaving after a bad night. Basically, what I struggle with is taking on personal responsibility for how her night goes. Not healthy. I know. Working on it. But, that being said, there's some mental/emotional relief when it comes to our nurse leaving. I'm not worrying about how she's doing with Leo. Bigger than those worries though, is the simple need for a night nurse.

    Leo's nights are very inconsistent. A good night for him is asleep between 9:30-10:30pm and sleeping until 6 or 7am. There are a couple of key factors that play into his night though. He gets a nighttime feed from 10pm-6am (ideally, but sometimes the time of that feed varies by 30 minutes or so). When he is hooked up to the g tube at night, if he is not asleep yet, he is probably moving around. This means he could pull the tube out or get tangled in it. If he's particularly reflux-y that night then the more he moves around while laying down, the more likely he is to cough, gag, and/or puke. Ideally, his last meal of the day is 7pm-8pm and then he gets medicines at 8:30. Depending on how the day goes--if he's puking a lot, if his feed is a little late--depends on how putting him to bed will go. Meaning, sometimes we lay him down for bed and he's perfectly fine, sometimes he's screaming because he's mad, and sometimes he's gagging and puking every 3 minutes. 

    He wasn't gaining weight before the nighttime feed. He struggles to manage--and not puke up--the food that he needs. He needs extra calories because of his movements. There could be other factors in there, too. Y'all have been on this journey with us. My point is that the art of feeding Leo requires balancing and understanding the factors of movement, stomach capacity, acid reflux, low tone, and pukes. I don't know exactly how I got here from nighttime nursing, but I think I was trying to illustrate the complexity of Leo's nights to say that it adds a lot to manage them without a night nurse.

    We don't know if Leo is going to have a good night or a bad night. We don't always know what causes a bad night. It doesn't always take a lot to have a bad night. If he wakes up at night, it's difficult to just let him be. Brad and I value Leo being able to be alone, self soothe, and learn that he's not going to get attention every waking minute. However, with the g tube, he can't really be left alone in his room if he's hooked up. Sometimes all that digesting of his nighttime food is a lot on his body and he wakes up coughing and gagging early in the morning. And if you turn off the nighttime feed you have to be aware that he still needs to get the full feed so he doesn't get behind. And you want him to have a break in between his nighttime feed ending and his first meal of the day. I know we aren't the only parents to think through a lot of factors. I'm just explaining the ones that we experience. 

    All of that to say, without a nighttime nurse we are experimenting with a couple of things to see if we can help Leo sleep for longer stretches at night. I've said before, I think, that his nights did get worse once we upped his food this past time. I'm fairly confident in saying that usually happens when Leo adjusts to more food. It takes awhile, but his body can adjust. Now, we're just working to make things sustainable for ourselves without a night nurse while also working to rely on God's strength not ours. I don't mean to paint a bleak picture, just an honest one. There are good things and bad things about not having a nurse. However, I am not wavering in our need for one.

    Also, it is very worth it to note that Leo's nights look way better than when our nurse started with us. His bad nights now used to be considered good nights. We see lots of growth. We understand him better. He is not considered "failure to thrive" which we were hospitalized for last year. We are so grateful to be off of formula and that his nighttime feed is less than what it used to be. 

    Specific prayer requests in all of this. Could you pray that God would provide another nurse or nurses for us? Pray for strength for Brad and I as sleep is more broken and somewhat less existent. This leads to less getting done in other areas of our lives. In thinking of new nurse(s) coming into the house, pray for our relationship and communication with them. Bringing a new person in to care for Leo isn't fun to think about. I overthink what I should share with them and how to explain the help the Leo needs. How do I help them but also leave them to get to know Leo on their own? And just continued prayer over Leo's body, the puking, eating, gaining weight, and that he would get consistent, restful nights of sleep. That body needs much rest. 

    We are very grateful to have family and friends who are willing to come and spend a night with Leo to ensure that I can sleep through the night. The Lord provides. We are not alone. We are not meant to do things alone. 

    And may I expand on something related to this topic? It's crazy to me that there are people I can reach out to and say, "Hey! Would you be able to come and spend the night with Leo to help me sleep?" Like, friends not just family. That's crazy. At the risk of coming across all wrong, I will say this. It's not easy asking for help. It's very easy to believe that you are being a burden. That people resent you. Or that you are obligated to return something just as significant as what someone is giving to you. May I just say that Leo's village of people is amazing. It's a powerful experience to ask for help in such a big and personal way. Brad and I are very much on a journey of asking for help. We need help with Leo. But it's also weird to tell someone, "No, don't do that," or "Do it this way." Especially when we can't say definitively how to do it sometimes. But we know we need help. We know we have help. And we know that God provides. But it is a hard thing to let go of control--of the care that your child needs and also of people's perceived perceptions of you. Here's the thing, we've never really had it anyway.