Before I give any updates on Ned this morning, I need to share with everyone where I am spiritually so that I can get this small voice out of the back of my head. I have struggled the past two days, not with my faith, but with my endurance. I suppose that with Travis leaving and things going so well with Ned, I have just been put in a place where I feel very afraid of the next step. I feel like in order to move forward, I am walking a very narrow path and I fear slipping and failing in a way that will reflect poorly on God. I have to line out what it is that is going on within me spiritually so I can be clear that my shortcomings are in no was a reflection of what God can do in my life.
For the past two days, I have felt extremely burdened by the amounts of emails I have received thanking me and praising me for my faith. While I am completely humbled by them, the amount of responsibility I feel because of them has been overwhelming. I am less concerned about faltering in front of people who know me, but the thought that someone may interpret my weakness as a weakness of God is really weighing on me. All day yesterday, I had a voice in my head throwing every possible fear at me. I have to put all this on the table so I can move forward confidently following God. I believe that Ned's situation has really sparked people to sincerely and earnestly pray and bring themselves before His throne and it is for that reason that I think I feel so threatened.
The fears that burdened me yesterday ranged from thoughts that 'just because Ned has done this well so far, doesn't mean that you're bringing him home' to thinking about how I couldn't stay here at the Ronald McDonald house and clean-up if I knew Ned wasn't going to be with me. I fear that if his condition severely worsens or if my worst nightmare comes to pass that I won't be able to find God's purpose in it and I won't have anything left to share from His word. And that if I can't find my way, all that I have said and posted up to this point will seem fraudulent and phoney. So I am saying this now, regardless of path down which the Lord leads our family, Travis and I will continue to believe in, worship and praise our almighty God. We choose to build our home on the firm foundation of God and in that safe dwelling we will seek comfort and refuge. Please continue to pray that I will be able to keep my eyes firmly focused on Jesus and that in the light of His glory, my fears will be relieved.
Now that I have gotten that off my chest, little Ned is doing well. We received his genetic test results back today.....completely normal- Praise God!! The doctors are still wanting to do a more in-depth analysis becuase he had several anomolies, but I feel completely assured that he is fine. In fact, one of the reasons they mentioned this morning that they were seeking further testing was that they said he didn't have a spleen (according to an ultrasound). But, the surgeon had mentioned to Travis and I that Ned's spleen looked completely normal when he put it back in place during his hernia repair. I guess that just hadn't made it into the paper file so they said they would confirm that with Dr. Adamson and would basically ignore the ultrasound report concerning that.
They are working him down on his vent settings in hopes of having him back on the conventional vent by Wednesday. The cardiologist would like to perform a little procedure where they will insert dye into his heart so they can get a better look at his aorta to make some determinations about surgery. I suppose we'll have a better idea about a timeframe for the heart surgery following that procedure on Wednesday.
Otherwise, he has been doing great! They have had to increase his sedation medications a bit because he's such a little fighter that he continually tries to breathe over the vent and yesterday when I visited, he continually tried to open his eyes and look for me. He was also having the hiccups. I was afraid that the hiccups would cause his patch to tear and I hated the fact that he seems to be trying to find me. It makes me feel like he is hurting or uncomfortable because he seems so unsettled. When I was talking to him yesterday afternoon I just kept saying, "just rest in the fact that I'm here and I'll always be right here....you don't have to see me." It hurt my heart to see him agitated. The nurses assured me that he wasn't in any pain or his heart rate would have been increasing. I layed my hands on Ned's little body and asked God that if there was to be pain and suffering in this journey, please let me endure it all. I can't bear the thought of Ned having to be in pain or feel afraid or abandoned. I know how terribly that hurt my heart and I thought so much of how Jesus must have felt as he faced the cross. His love for each of us was so tremendous and sacrificial that he couldn't bear the thought of any of us having to endure such pain and suffering so He willingly endured it for us.
That's basically it for now. I'm heading back to the hospital to sit with Ned and see if they have gotten the results from the ultrasound of his head or his chest x-ray yet. I will keep everyone posted. I appreciate your prayers and don't know how or if I could begin to handle this without them. I heard a sermon online today which really spoke to my current situation. Here's the link:
(Then click on "The Method and the madness of God") It's a great sermon about the way God works in our lives and through us. It gave me great reassurance.
I love you all!
Betsy, Travis, Jack & Ned