10 days.

So much has happened in the past ten days. It's hard to grasp what has already taken place and what we still have in store for us! We allowed ourselves to sleep in this morning (well, until 8:00 or so) and hung out with Emma while we got ready to head to the "hop-sit-al" (according to her) to see Baby Chi. When we got to the hospital around 10:00, Malachi was sleeping peacefully with his legs crossed at the ankles and all curled up. At that moment, I wanted so badly for him to be asleep on my chest all curled up like that. One day, we will get to hold him for more than five minutes! We also noticed recently that he seems to have the same hairline as his father: somewhat of a widow's peak and hair growing in random directions.

He is currently weighing about 7-lb 2-oz. His birth weight was 7-lb 8.9-oz. He seems so little to me now. I'm not sure why, he's still HUGE compared to the premies that are in our module. They are still advancing his feedings (currently he's at 49 ml every three hours) and we were told today that they will probably supplement his feedings with something that has a greater calorie value to get him a little plumper for surgery next week (heart surgery set for thursday at 7:15a). Our nurse yesterday also told me that he will probably drop in weight again after his next surgery. Poor guy!

He had an esophagram today to evaluate for any leaks from his previous surgery (TE fistula repair). They took images with contrast while laying on his back as well as on his side. Surprisingly enough, he tolerated this pretty well. Normally, he does NOT like to be messed with and turned from side to side, etc. Also, because no leaks were found surgery should be able to remove the chest tube either tonight or tomorrow.

John and I have tried to make an effort to get to know our nurses and those who are in charge of Malachi's care while he is a patient at Riley and make sure that they know how much we appreciate all that they are doing to keep our little man alive!

Yesterday I allowed myself to be overwhelmed with all of the things that CHARGE "could" be. We do know that every case is different and the spectrum and range of symptoms and effects of this "disorder" is too wide to really comprehend and get a good idea of how it will affect Malachi. I am thankful for a God who shows Himself to those who believe in Him. We have noticed that in our moments of weakness, God proves Himself as One who is faithful and true, gracious and merciful, revealing His goodness and strength in a very real and personal way.

Tomorrow will be a weird day for me. I will not be going to the hospital (unless some sort of an emergency comes up). Instead, John will be going to the hospital by himself and I will be spending some much needed quality time with Emerson. Hopefully I can figure out something fun for us to do besides get groceries and stop at Menards ;)