"So, how are you guys doing? How's Leo?"

     Let's pretend we are face to face and we both have time and I am able to answer this question fully.

    Nighttime nursing started and....wow. It's going well! It's a good thing! But...whoa. It's really hard. We both feel confident about our nurse. We feel comfortable with her. But laying in bed and hearing when Leo is awake--coughing, gagging, crying--and not going to him is SO hard. The first night I was awake for the whole time that Leo was awake. And, personally, I find it difficult to navigate communicating with our nurse. She and Leo need to learn each other. She is not me. Not everything will be exactly the same. But I also know him the best and I am bringing her in to it. I don't know if I'm accurately communicating this but it's just complicated. I find it difficult to tell someone what to do. However, I also don't want my fear of someone to keep me from getting my kid what he needs. But this has also shown me that I need to let go of control in order for this to be successful. So how do I know when I'm being controlling and when I'm being a good mama? And our nurse is totally new to us. How can I communicate respectfully? How do we build trust? etc. etc. etc.

    If you are thinking that this is a little much. Don't worry, I'm well aware. I have big emotions, insecurities, and people-pleasing difficulties. I do not say that to bash my self. I'm not ashamed of these things. Just learning to work through them. I say it all to say that nighttime nursing has brought me more anxiety than many, many things--anything I can think of really. Brad would probably agree but on a little bit less dramatic of a level. 

    Now, I will say that our interactions with our nurse have been comfortable. She is already learning Leo. And each night I have slept better than the previous. I know that getting this help is a very, very good thing for us. I see God in this whole process. But this learning period is rough. Letting go of control is hard, but I cannot be the only one who knows how to care for Leo. And I'm a fool if I think that his well-being is up to me (I see you, God). 

    Oh! And I had told you that his nights had been going horribly. Well, they are getting a little bit better. He still isn't back to the normal pre-covid rate (on his nighttime feeding pump). That's stressful because that means he's not getting all of the calories that he should be getting--that many doctors are assuming he's getting. We are up from last week but not where he should be. This is also affected by nighttime nursing. Leo is getting to know his nurse. I do believe he has been more worked up with someone new and that has caused him to puke more meaning she has needed to turn the pump off more to give him a break. So, please could you pray for Leo's nights to calm down too?

    There's also our dietician. This week Leo and I saw her for the first time in person, second time overall. I think that we have felt a lack of support in this whole feeding process due to our disagreements with our GI doctor. I feel that this dietician is providing the support that we have been lacking. She hears me out. She wants to move Leo toward solids and she brought that up before I did. She's very, very available to me outside of appointments. And she communicates with our GI as well as our speech therapist. 

    On a bit of a different note, our appointment with her was a very encouraging one for me. We ended the appointment by talking about how I can take care of myself. She said, "Leo's going to be fine. We're going to figure it out. I want to take care of you too. You have a lot on your plate." She and I discussed what was stressing me out and talked about ways for me to get space from Leo things--getting a break. She gave me her cell number to talk. I was also able to bring God into the conversation. I'm not exactly sure if a Christian can talk about that stuff while they are at work, but I don't believe she is a Christian. I was grateful for the opportunity to mention what I did and I pray that God uses us in her life. All that to say, please pray for her as well.

    On the food side of things, we are starting to add solid foods to Leo's diet!!! Finally! We actually got these packets of blended whole food g tube diets from a different doctor that I have to tell you about. But first, where we're at now. I'm feeding him 3 times a day (instead of four) and one of these is a solid food meal. We will see how he responds to the food, give his system some time to adjust, and then add another meal. This solid food diet also has more calories than the formula. So we hope that it stays down better and we don't have to give him as much volume initially. Right now I will continue to give him some of his formula by bottle (for oral practice). But the goal is to get to 3 meals of solid food a day and then to tolerate formula at night (but not as much as we're trying to give him now). Hopefully if we can feed him less at night then he will be a bit more comfortable. 

    Now, this other doctor. We went to see a complex care pediatrician at Hershey. I forget what I've said on here before. But we have no complaints about our current pediatrician, he just doesn't specialize in "kids like Leo". We wanted to hear this doctor's opinion--especially on the GI doctor's thoughts. She is the one who gave us the packets of solid foods for the g tube. She worked on an eating plan with me. Oh! And this switching him to eating 3 times a day. It gives more time in between feeds which frees up my time a lot. Also, because he's not being constantly pumped full, he's been a lot less pukey (let's hope the solids help with that even more). Also, on this new plan, it takes Leo about 2 hours to be fed (through the pump). Our goal is to work him up to getting each meal in one hour. Who knows how much time that will take, but I hope we can move in that direction. 

    Lastly (I think), we are starting speech therapy. It's not a weekly therapy right now. But it's helpful to get advice on the oral stimulation and experiences that Leo gets. On that note, on my to do list (that I have some people helping me with) is to get Leo into PT multiple times a week and to get some insurance things figured out. A praise regarding speech therapy--which might seem a little selfish but, oh well--is that the therapist said that in her experience teething can severely impact kids eating. That has been a theory of mine about Leo and why he can't take a full bottle without puking right now. And a couple doctors have kind of written that off so this felt very affirming and I was a little bit like THANK YOU!

    In other news, I do believe we will be moving end of August/beginning of September ish. Prayers regarding all of those stressors in the midst of life is appreciated. Also, if you live near us, we will be reaching out to ask for help ;)

    May God bless you!