Today was the day of Grey's NICU discharge. 157 days is a very long time. Grey came home to us on an apnea monitor, an NG in his nose for feedings... and a scared little boy that had only been out of the NICU once since birth, and that was to go to the main hospital for a scan to look at his liver more closely. He didn't have very wide horizons yet. Grey came home a jaundice, yellow little boy. He barely took anything by mouth, drank about half an ounce twice a day; the rest was put down his tube for nourishment. As far as activity when Grey came home, he mainly just lifted his arms off the bed to look at his hands. He mainly looked at his right hand, but occasionally his left. He didn't yet lift his head, nor did he really try. He has just gotten off of oxygen a week before discharge, and didn't ever require it again.
We knew when Grey came home that our lives would change from the routine we had been doing. We knew it would definitely be an adjustment for him as well. Afterall, he'd not been in a car, not been in a different bed besides his isolette, only been outside once, and he had never seen our house, dogs, and hadn't smelled or heard the things that he would come to later know. We had a lot of work ahead of us, and so did he. Grey was used to his own little room, his own environment, and his own ways.... and now, he was part of our ways, our life and our environment. He adjusted slowly to all of this.
He slowly had to learn that he wasn't the only baby in the house. I think though, he adjusted better than I thought he would. At first, he needed darkness, silence, and tightly tucked blankets to make him feel like he was safe. I remember at our Christmas gathering with my side of the family the week before Christmas Todd spent the whole time up in our room rocking him, and keeping him in a low stimulation environment. We had him in therapy 3x a week that either Todd or I had to take him back to the hospital to complete. He didn't do well with going out of the house to therapy. We then consulted First Steps of Indiana which allows therapists to come to the house, and that has been a GOD send to us! Wonderful therapists, and so much easier on all of us. I remember the evaluation for First Steps with the therapists that come to the house to check out if they qualify, how developmentally they are, and what therapy they would benefit from. The therapist said to me, "He has a long way to go to catch up to where he should be. Kids like this just don't bounce back quickly. You will have to be patient with him." I remember going back upstairs to my office that day and being tearful for what Grey had already had to endure, and how it was always him that had to work harder, and do more. He recently was re-evaluated for his yearly evaluation for First Steps. The therapist that said that to me came again, and instead of bringing her toddler toys in to the house to evaluate Grey, she brought her baby toys as she remembered him from the January 2011 evaluation. The look on her face when she saw him trying to take steps, pulling himself up, and crawling up the stairs as fast as he could was simply priceless. I truly doubt that she remembers what she said to me, and I am more than sure it was no way maliciously stated.... but I said to her back, "He might be the exception to the rule, but he did bounce back quickly, and he is definitely not far from where he should be." She looked over at me and said, " I am simply amazed at how well this little guy is doing, I should have brought in my toddler toys."
With that, I will end this post.... but I again want to thank St. Vincent Woman's NICU staff, doctors, therapists, etc. Special thanks to Becca, Erin, Brooke, Cathy, Laura, Shelly, Lindsey, and Alex for keeping Grey alive, and me sane. Also, I cannot even name all of the doctors that took care of Grey, but namely Drs. Bensaad, Tauscher, D, Simon, Hendrickson, Kokaska, Maisel, Roberts and so many others.
This is Grey's last picture in his crib in the NICU
Grey's first picture at home. Notice the apnea monitor cords, his NG, yellow skin, and his 0-3 months clothes that he is swimming in:)
Grey in a hat that I thought he needed.... I think he is wondering WHY?
This was his favorite pose. He loved his hands!
Wow.... what a difference a year makes!
Here is a little video of Lillian and Grey entertaining one another a few nights ago. THIS is a little boy that doesn't have too far to go to be right where he needs to be. Thanks to GOD, a lot of prayer, a lot of work, a lot of tears, and a boy with a will power that just doesn't stop!