King of Prussia Day #4

     This morning I woke up feeling pretty discouraged. But today has gone better than I expected. Here's the gist: we are working on figuring out how much Leo can take comfortably through the pump overnight in order to lessen the load of the bottles during the day and to do it in a manner that allows his stomach to take smaller feeds at a time because it seems like filling him up too much brings vomiting. 

    I have been feeding him by bottle today which we are very thankful for. He is still on the new formula--which has more calories--and he seems to be adjusting to it. Praise Jesus! He is not spending all day agitated. He had a big puke last night after we tried to up his dose over the pump so after a break they made the dose lower again. There's some medicines they are discussing with us as well that would help his reflux and digestive system. 

    Ok. There's so much I want to ask for prayer for, but I'm going to do it by kind of explaining where Brad and I are at and how this hospital stay has been for us. 

    One. Medicines are hard. We feel sad every time Leo gets a new medicine. It's scary to add more. We hate the side effects that might come. Leo's quality of life is considered. In our culture there can be very polarizing views of medicine and the truth is it's hard to know what to do. Medicines have helped Leo a lot. Please just pray for guidance and clarity when it comes to medicines. Pray that Brad and I can ask the right questions. And I continue to pray that God would show us what Leo needs. I am more and more convinced that there is not one right answer. 

    Two. I feel very overwhelmed with the amount of people we are talking to and the pressure to make decisions. We always have a nurse taking care of us, but that switches. There are nurse practitioners and attending doctors coming into our room. We've spoken with speech therapists, a nutritionist, and a case worker. And there's some random ones thrown in there too. Our GI doctor from main campus is in contact with the team here. The nutritionist from main campus called me yesterday. I am afraid that we are going to look back on this time eventually and go, "Why didn't we do _____ then?" But I can't expect us to know the future. Again, God is in control of who is on Leo's team and the decisions being made. We have had really good conversations with the attending doctors who kind of bring it all together for us. 

    It's just a lot and unclear. We have received very good care here, but it's overwhelming and when you talk to so many different people it's easy to feel like the right thing isn't going to happen because no one has the full picture and it's hard to identify who is making the final call. So prayer over all of that is good. 

    Three. Being at a hospital is just exhausting. I don't mean to complain or exaggerate. But yikes. Sleep is off. It's just hard to get a solid nights sleep. Not knowing how to help Leo is discouraging. Having so many people come in and talk to you can be disheartening. Not knowing when we are leaving is hard. And it kind of feels like we could hear big news and not know that it's coming. That's not fun. And then there's feelings that creep in just about not being able to do enough. Personally, I wish that I could keep Leo on a routine. I know routine is good for him, but I feel like I can't give him what he needs. I wish that I could do a lot of therapies with him every day, but there can be a constant fear of not doing enough with him in that way and that that's going to affect his development. But with so much problem gaining weight, I feel like I can't get to the other stuff of life. It's just a lot. And we are learning in newer and continually deeper ways that the Lord is in control. 

    Four. Ironically, taking care of yourself is hard to do at a hospital. We have seen the Lord provide when it comes to lodging, food, and the finances involved. Thank you. Thank you to all of you who have blessed us financially. It is amazing to see the Lord provide and it allows some of that worry to dissipate because it shows us that the Lord will provide for our needs. But sleep and getting good food to try and help ourselves stay sane is difficult. Time spent at a hospital is weird. We get bored. And it's also sad to be misplaced. But it's just weird to know what to do with your time. 

    Some praises. Brad and I are doing well. I am grateful to be on his team and I'm grateful that in our circumstances we haven't been at each other's throats bickering (which could be very easy in these circumstances). Visitors have come and lifted our spirits and taken the pressure off of us. Leo continues to be a happy boy. With his new schedule, I have been able to lay Leo down to fall asleep on his own and he hasn't puked. Kind people caring for us. A big window in our room really is such a game changer. 

    I come from a place of tired and gratitude. Thanks for lifting us and our little fighter up.