I am so sorry that it has been 6 months since my last post. I WILL do better with keeping you all updated on the happenings of the Williams family. We are all doing well and have had a lot of changes take place lately.
As I reflect over the last year, I am amazed. Exactly one year ago today, Emory had his open heart surgery. If I went into detail of everything that led up to his surgery, you would be reading a book, so I'll refrain from that today =). The day began with us getting up very early after sharing a "couch" in Emory's hopsital room at Egleston. We spent time with Emory praying over him and then my parents and our pastor (Pastor Al) arrived. We walked down several different hallways and then went to a small area where we sat and waited. This area was not an official waiting room.....it was just a side room off the hallway and just before you walked through the doors to go back into the surgery area. The nurse came out and we had to hand Emory over to her. We just passed him on with his blanket and she carried him back in her arms.
I think that part was harder for Claude than it was for me. Honestly, I was nervous, but also so relieved. I mean, they were going to stop his heart and that would make anyone nervous. But, Emory had struggled so much before the surgery with eating, breathing, reflux, weight gain, etc. that if it meant that having open heart surgery would make those things better, I was all for it. Plus, I had really just adopted the attitude of "giving up" meaning that I knew I couldn't do anything about it or for my son. It was all in God's hands and the hands of the doctors.
Thankfully, Claude was able to be at the hospital or with Emmitt and Eli every step of the way. It's funny how God orchestrates things. In early April, just before Emory was born, Claude found out that his contract was not going to be renewed and he was without a job. Emory was born May 6, released from the NICU June 6, hospitalized July 23, hospitalized again July 30, and had open heart surgery August 3. During all of this, God not only provided EVERYTHING we needed through family, friends, meals, etc., but He also arranged it for Claude to be available....much more so than if he had been working full time.
Emory stayed in the hospital for 8 days, which is longer than usual for babies who have just had open heart surgery. He had some fluid on his lungs and some breathing issues which had to be taken care of before they released him. When we took him home, we went home with several meds such as Lasix, Coreg, and about 3 others I can't remember the name of right now. We also had a pulsox machine that the medical supply company brought to us. Thankfully, we only used this a couple of times.
In the months following surgery, Emory was able to come off the feeding tube at the end of October. He also has dropped all of his meds with the exception of taking Prevacid on an as needed basis. If you were to see him now, you would never know that he had had surgery. He is crawling, cruising, standing up independently for about 10 seconds, babbling, etc. At our last cardiologist appointment in May, the doctor said we didn't have to come back for a year.
He just recently had ear tube surgery as a resultof fluid build up that was causing hearing loss. He wasn't having a lot of infections, just a lot of fluid. But, he handled that surgery with excellence. Our 3 year old, Elijah, has had ear tube surgery twice and Claude never let me go back with Eli. He was afraid that mommy would get too emotional. But, with Emory's ear surgery, Claude was at home with the movers overseeing the loading of the moving van (I'll save that for another post), Emory did fantastic. He squirmed a little bit when they put the mask on his face for the anesthesia, but it was almost like he knew what it was and was used to it.
At our last cardiologist visit, Emory did still have a heart murmur, a small hole in his heart, that the dr. said should close on its own. For now, we don't foresee any heart surgeries in the near future. As I said before, if you look at Emory, you would never know what he had experienced and you would never think that anything was wrong with him. However, he does still have some delays and issues with eating, speech, weight gain and motor skills - all of which is a result of the DiGeorge Syndrome. As time goes on and as he gets older, he may or may not have similar or additional issues. We just go one day at a time. We are currently trying different table foods at all of our meals and he is making some progress but still chokes a lot. He is also still on infant formula due to a severe milk protein and soy allergy.
We've just moved to Rocky Mount, NC. In fact, we've not even been here for a week. Claude has joined the church staff at Englewood Baptist Church as the Minister of Reaching where he will oversee the evangelism and sports ministries. But, I'll have to blog more at a later time to fill you all in on that. For now, we are enjoying our miracle baby who is so full of life and laugter. Emmitt and Eli are doing great and the 3 of them play great together. We are a little on the tired side from moving and unpacking boxes, but this too will pass. Until next time.....