Everleigh Is Home! 12/7/2012

What a week and a half it has been!! I'm not even sure where to start, it happened so quickly.  Everleigh is home, just in time for Christmas!

I sent this picture to Nate when I found out she was coming home with the caption, "Guess who is coming home on Friday?"

Breaking in the bean bag!

When I wrote my last post, Nate and I were in the recovery stages from a week long battle with the flu and were preparing to go see Evey again. Evey had just been cleared by neurology to come home and all we were waiting on was for her to reach her feeding goals. When Nate and I went in to see her the following Monday, we were pretty surprised to find that although Evey was not having any seizures, she was almost completely sedated by her seizure medications. This left us confused and a little frustrated-how could neurology clear her to come home if she was living the life of a veggie? Apparently Everleigh's body had acclimated to the medicine doses over the weekend, and we were finally beginning to see the full effects of the medicine. Too much meds this time around! Resigned to the idea that bringing Evey home was probably much farther away than we had hoped, Nate and I  decided to start making plans to spend Christmas in the NICU.  We spoke to Everleigh's attending doctor, who agreed to starting weaning down the medications and watch Evey's progress. After about a week of weaning and watching, Everleigh finally pulled out of sedation and began to be her sweet old self again.  The next day, Wednesday, Dec. 5 Evey's feedings began to progress again. I came in for my morning visit when our NICU nurse came up to me and asked, "Would you like to take your baby home on Friday?" I thought she was joking, truly I did. Evey was doing much better, but her feedings were at 68% by bottle, not 100%.  We also had not discussed the possibilities of bringing home Evey with nasogastric feeding tubes and I was unsure if her doctor would agree to it. NICU babies rarely get to come home with nasogastric tubes because of the risk of choking and fluid aspiration. Babies usually either take everything by bottle or have a gastrostomy tube placed, which we were not terribly open to.  Then our doctor and our nurse practitioner confirmed it: Evey could come home on Friday if we were willing to spend the next 48 hours learning to place and care for her nasogastric feeding tube. What a blessing! What a responsibility and opportunity. Placing the tube seemed pretty scary, particularly because Evey really dislikes having it changed. However, after a quick prayer and motivated by the idea of avoiding surgery, Nate and I learned how to place the tube without too much trauma to the baby. We spent the next 48 hours essentially learning to become NICU nurses to our baby from the comfort of our home. We have learned everything from tracking feedings and diapers to changing tubes, taking temperatures, and administering infant CPR. But it has been so worth it, and we are happy to learn and provide these tender services to our sweet baby. Friday, December 7, at 6:00pm, Everleigh finally came home. Prayers are answered!! Miracles happen. Capabilities are stretched. Testimonies are strengthened by anguish and faith. Patience pays off.

What is this strange place?

Tired but content

All ready to leave the NICU!

Evey being carried out to the car by one of her Primary nurses. They were the best!

Saying goodbye to another one of her Primary nurses

Thank you again for your love, prayers, faith, and support. We could not have done this without you nor without our Savior, Jesus Christ. He truly can bear our burdens if we but only allow him into our hearts.  Everleigh still has a long road ahead of her, but we know that we will continue to see miracles in her life. We love you all and will continue to keep you updated on her progress.

"I'll be home for Christmas, you can count on me!"

-With love, The Knighton Family (All 3 of us!)