Emotional Ambien

We have noticed that the biological response to stress is a desire to sleep! (I don't know if that has been proven, but it's what happens to us!)

So this morning I had tried to be well rested and felt pretty good. I got some chores done at home which energizes me! It didn't last long!

Upon my arrival at her bedside, Emma decided to show me what they had been talking about yesterday and threw up the greenish substance again! (Luckily I washed the one Swaddle-me last night so I could switch it over!!)
Fatigue set in! After getting her settled I sat down to 'milk'! As I sat there, secluded behind the screen that gives me a modicum of privacy, I questioned the strength left in me. It's not so much that I worry about the long-term future, in fact it doesn't look all that bad compared to what it could be. No, I'm thinking about the next weeks and maybe months.

A bit later I picked her up and sat in the recliner with her and began to read the book of Job out loud to her. As I read the first few chapters I knew that I will have the strength to continue this daily routine of hospital life, as long as it takes. There really is no alternative.

What is more important is that I still find joy in things. There's much joy to be found in those big blue eyes that literally stare into you! But also joy in knowing that we have a future beyond this that has a purpose much bigger than our daily life. And when we seek that purpose in God, we will find it.

Yesterday they put Emma on ND feeds, so the food is going right into the intestines, bypassing the stomach. She is still pooping so it doesn't look like there's a bowel obstruction. Instead we need to find out what is making her throw-up. There does not seem to be much credence given to the theory of her secretions obstructing the airway by her regular doctor. The main theories are:

• apnea, which is usually treated by caffeine!
• un-coordinated swallowing, so she is not closing her airway before swallowing
• reflux, causing her stomach acid to back-up and affect her heart-rate
  

Right now Emma's doing a sleep study. She has a probe through her nose, resting in her oesophagus. It's testing the pH of anything that may be refluxing from her stomach. It also monitors her breathing and other things to try and establish where the airway issue is coming from. We should have the results tomorrow afternoon, and hopefully an answer.

The doctor in Boston is also testing Emma's blood to see if she has the genetic imprint for Moebius or if she developed it in utero.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. (Jeremiah 2:11-13)