Saturday, November 19, 2011

This day, 365 days ago..... our family was all home.

What a difference a year makes.

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!

Here they all 3 were. 1 year ago today.

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!

Wednesday, November 9, 2011

Oct/Nov updates

Here are our 3 monsters

Grey monster

Owen Monster

Lillian Monster

We have a lot going on day in, and day out here. Currently we are all sick. All but Todd. I think that is the only way we can stay sane, is having one person not blowing their nose and coughing around here constantly.

Here is our zoo outing. As you can tell, they didn't know what to think of the bats, or the lady in the glass washing the windows in the enclosure. Our wagon at the zoo attracts all sorts of people. Everyone has their comment. I have to learn to have thicker sking when it comes to that. Oddly enough the people that just say stuff as they walk by, and don't ask us about them, ticks me off more than anything. Comments about people when you know they can hear you is just rude. Test me on the right day, and I'll let you know that. I decided the zoo trip was going to be fun regardless... and I just needed to get over it. Sometimes that attitude isn't easy to have. With multiples, you know you will get the comments and stares; I acknowledge that. Some people that come out with us spiratically can just accept this, and know that it is going to happen. But day in, day out of the comments when you go somewhere starts to rub you raw. Either way, I'm working on it.

We have been on a few more trips this month. We went to the zoo, and also to the children's museum. I am convinced we got the PLAGUE from the museum. Grey insists on chewing everything. You can imagine the germs there. Chasing him with a Lysol wipe is hopeless.

We also had our 16month shots, along with the flu vaccine. That was on Halloween night. They did great that night by the way.

Owen has an ear infection, currently on antibiotics. At the check up, he was overly concerned what was going on, as he was GOING to RUN away if he had too.. and indeed he tried. He is the more sensative of the 3. He cries when Lilly cries in pain, kind of cute, but rather annoying at other times! He is still enjoying his silky blanket, and must have it at nap and bedtimes. He has become quite the picky eater. He LOVES shoes and socks. Owen is also still talking like a caveman, grunting and pointing. Dr. Riddell our peds md just laughed, and said he thought that speech would come soon. Wondering how long his ears have been bothering him. Hopefully once that is healed we will be good. Owen also likes to help our cleaning lady Angel sweep. He is literally obsessed with the sweeper attachments, and will cry and point when he wants it. He nearly has all of his teeth in now, just waiting on 2 canines. I will have to get a video of him dancing, the kid loves to dance! At 16 months he is 33 inches, and 30lbs. Dr. Riddell says... "Wow Owen, you are going to be a big boy, and that is great!"

Greybear is progressing wonderfully. He thinks he can walk. You will see him look at his destination, which is usually greater than 10 steps away, and he can only take 2 steps... so he will try to get there, and fall flat on his little melon. Usually there are no tears involved, he just tries it again. He loves to throw himself back, and twirl around in his crib and fall down. His current trick with Lillian is a fake cough and sneeze. I will have to get that on video too... it's too funny. Now that he is sick with a double ear infection, when he fake sneezes, it blows snot all over... yummy....! He is eating better than I ever could have expected him to. Even though he is sick, he is still doing great. His oral intake of fluid isn't stellar, but we are working on it. He loves to watch the neighbor dogs and our dogs out the windows of the playroom. He too dances like there is no tomorrow, and now has started the a Jersey Shore like fist pump move when there is music on that he likes. He has adjusted to his room all by himself, although his feeding pole has to be wedged under a foot stool and his crib so he doesn't pull it over, and disconnect it... He is a crafty, smart little fella! His eyes are looking better than ever, and we just had some labs drawn on him last week or so, and they looked great. A year ago now, he wasnt' even home, and as yellow as his pumpkin. He is nothing short of a little miracle. At 16 months he is 30 inches long and 22 lbs.

Here he is questioning why these birds are diving in the water....

The sealions also threw them all for a loop!

Lillian.... oh, my Lillian. She refuses to walk. Yes. Refuses. She will knee-walk, and bear-crawl. She prefers knee walking if at all possible. She has great muscle tone, great control, good stability, and posture, she just will not push herself to do it. She too is a grunter, and pointer. Lately however, she is starting to make more sounds. I hate to push them to talk, because I know I will regret it... but we need them to keep moving along! She continues to be the best eater. BUT, when she is done, she will clear her tray by wiping it, throwing it, slapping it, or pushing it all on the floor. When she is done, she is not joking, she is done. She is great at her little fake sneeze and cough. She also loves to look out at the dogs outside, and just point, and grunt! She is the biter of the pack. Don't cross her, take her toy, or get in her way... that little piranha will bite you. I had to stop her from biting a boy about 3x her size at the children's museum for a toy banana that she thought she needed. At 16 months she is 30.5 inches and 24 lbs.

I am doing fine. Have a little bout of pneumonia. Getting better each day. Surgery stuff is all healed. Looking forward to the holiday season coming up.

Todd is doing well too. Our 9th anniversary is today. Hard to believe how much our lives have changed, and how each trial and tribulation has brought us closer together even though we have our differences.

Today we went to look at preschools for the kids. We plan on in the fall starting them likely 1 day a week. We are currently looking at Holy Cross Lutheran Preschool, it is near our house, and convenient, which is a plus. We'll see, we have time to scope out some more.

We are getting new windows for the house in the next few weeks. Our house is only 7 years old, but our windows are terrible. We are hoping that will keep the kids' rooms a bit warmer this winter. Our house faces the west, we get a lot of wind coming across the field across the road.

Hmm... I think that is most of it.

This was right before their pre-lunch melt down. You can see the boys are getting a tad bit restless!