Today has been a discouraging day. This morning I met with the doctor and she asked about what had taken place over the weekend. She is puzzled by why Levi began to have a grayish color and stopped digesting his food. She ordered a number of tests to rule reasons out. These tests included a head ultrasound to rule out bleeding and blood work to see how Levi's digestion is working. The ultrasound came back normal. Levi does not have bleeding in the brain. That was good news. The tests came back fairly inconclusive. We talked a bit with the Nurse Health Practitioner and he mentioned that there concern is that Levi seemed to get better when he stopped feeding. This makes them wonder if Levi could have a metabolic disorder in which he is unable to digest proteins correctly. When asked if he would outgrow something like this we were told no, it would be a life long struggle.
On top of all this news, we were asked if they could put a central line in Levi instead of a regular IV. The reason for this request is because regular IV's need to be moved frequently due to the little veins. Since Levi doesn't appear to be getting off the IV any time soon, they wanted to put in a central line so that it was more stable and they did not have to keep sticking him. Essentially what this means, is that they put a catheter through a vein into the heart. They did this (which ended up being in the head) this afternoon. This evening they were still unsure if they placement of the PIC IV was correct and there is a possibility that they may need to redo it.
Due to all of the things going on with Levi, they have not been feeding him breastmilk. Yesterday I was excited because they allowed me to start trying to breastfeed Levi again after a 24 hour hiatus. Levi has been pretty tired, but this morning we actually had a really productive half hour of nursing. Then tonight when we returned I was told that I was being asked to stop feeding again.
All of this news has made it a difficult day to have faith and hope. I have struggled with many emotions. I am sad because it is hard to see Levi undergoing all these tests. It is disheartening to feel like we are moving backwards and like Levi will not be coming home any time soon. I have been angry... mostly at God (a reality I am not proud of). Why must Levi go through these difficulties? Haven't we been through enough? Why won't God just allow Levi a break? These are the thoughts I have been trying to squelch. I have felt comfort. I am currently reading in the Psalms and have resonated with David as he expresses thoughts surrounding God's faithfulness... these are the Psalms I am holding onto.
I am grateful for the prayers of so many. Tonight I very clearly had the thought that I needed the prayer of the people around me to hold me up through this. It is very hard to feel like we take a step forward only to go two steps back. Please pray for our faith to stay strong.
Psalm 22:4-5 - In you our fathers put their trust; they trusted and you delivered them. They cried to you and were saved; in you they trusted and were not disappointed.
Psalm 21:1-2 - O Lord, the king rejoices in your strength. How great is his joy in the victories you give! You have granted him the desire if his heart and have not withheld the request of his lips.