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.
Sarah and Drew- I think those are hard things to hear about your son and hard emotions to handle. I also believe that God can absolutely handle our emotions and that nothing you are feeling is "wrong." It's our natural instincts as mothers and fathers to want to protect our children from harm. Plus you are physically and emotionally tired from a difficult pregnancy and delivery. Be gentle with yourself as the Lord is gentle with you.
ReplyDeletePraying for you all.
Sandy
Don't have a lot to say except I am certainly praying for you guys and especially little Levi. Doug Foreman
ReplyDeleteI'm sorry it was such a discouraging day. Praying for Levi's progress, and your comfort/encouragement. I second the thought that those emotions are not wrong or bad - they were your momentary reality. You are hanging onto to faith, friend. I love you.
ReplyDeletesarah,
ReplyDeleteI just saw your facebook update. I remember when Lindsay mentioned the trying pregnancy months and months ago. I'm so encouraged to know he is now with you in the light of this world and I'm praying for you all as you discover the next challenges. I look forward to reading back over your story of courage, struggle, and faith. I'm praying you too find encouragement in God's past provision for your family and for Levi!
We are praying for you all during this very difficult time.
ReplyDelete"Fear not for I am with you, be not dismayed, I am your God, I will strengthen you, I will help you, I will uphold you with my righteous right hand". Isaiah 41:10
With love & prayers, Mary & Paul
Although we don't always understand what God's plans are, we still trust Him. Continue to take comfort in his Word. My prayers for your family continue.
ReplyDeleteYour trials remind me of our time with our son Justin after a near-fatal accident. I will be forever grateful for those who prayed when I couldn't--but most of all I am grateful that God understood my pain and my doubt and He never abandoned us for even a second. He will carry you through. We continue to pray. Oh, and Justin's middle name is Levi.
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