Tuesday, June 19, 2012

More Birthday Pics

All the babies born the past year, 3 total Riley NICU babies
All the kids at Luke's Party

Luke, Riah, Quin, and Kate after Luke's dedication

The Dannheiser side

Luke's Great Grandma and Grandpa Dannheiser and Quin.

Jenn and I with the babies after the dedication

Who else would put on a Snuggie in 95 degree weather, but Brenden


Thursday, June 14, 2012

Borderline

Today was Luke's 12 month check up with his pediatrician. When we first go into the room, the first thing Luke has done is get weighed. I seem to always dread this moment. It is just something that I don't really want to hear. I see Luke everyday and I don't notice the changes like others do. Some have said he looks so big, however, I think that is his length to these people. Luke weighed in today at 14 pounds 0.5 ounces. If you can remember the past few weigh ins, you would know that Luke has not gained any weight. He might actually have lost some weight. However, his height and his head circumference is growing normally. Most would be happy to never gain weight, but this momma is not happy. It seems to always be a problem since the very first day. So....now our option is a inpatient stay at Riley to work with a feeding specialist team. This was brought up a couple months ago while at a developmental appointment. I didn't think it could happen at that point. Now that we have come to this point I feel some relief. I guess I have worried about his weight from the beginning and I have done everything they have asked. I have tried all suggestions that have been given to me. I am now using pediasure along with his formula just to see if it can help him as we wait for the schedule. So as of now Luke is diagnosed as borderline failure to thrive. I am hoping this will get us some answers, and we don't have to go as far as a g-tube. On a good note, Luke's cold is getting better and it isn't in his lungs. That is one thing to calm my nerves. Hopefully we can just get over the cough soon enough.

So please keep us in your prayers that we can FINALLY have some answers for Luke's lack of weight gain.

Jordan

Monday, June 11, 2012

Let's Party!

The past few weeks have been building up to Sunday! Lucas' First Birthday Party! And who would have guessed that the tot would get sick. It started earlier this week and has slowly worked its way through Jonathin and I and has stayed with Luke. However, we were still able to celebrate.

Our weekend started on Friday night when Luke's Great Uncle Mikey came in from Virginia. This is the first time Mike had seen Luke, like a lot of others this weekend. We had pizza and hung out at our house for the evening. Then Saturday afternoon Luke's NICU girlfriend arrived. Lily and her family had made the long drive up from Terra Haute to celebrate with Luke. I'm pretty sure I was more excited for this visit. Lily's mom Heather and I have became really close friends since we met in module 1 of the Riley NICU. We usually text one another almost every day. I know many people have made this journey with us, but Heather and I completely understand each other. It's a preemie mom thing. We sat but the bedside daily and endure all the doctor appointments and the news along with being a preemie. We understand each other. Also we can bounce information off of one another from doctors and therapists. 

Also on Saturday Danielle and Cassie made the drive up from Indianapolis to stay the night and hang out with Luke. It has been over a month since we saw them. It's great to socialize with people. I know Luke would have enjoyed it more if he wasn't under the weather. We had a nice Saturday at my parent's house where the kids got to swim, Lily's big sister Madison's favorite. We also had a good cookout thanks to my Mom and Dad. 

Then Sunday was a long and big day. It started with us going to church. After a year in waiting, Luke was finally dedicated in our church. It was something that I had wanted since he was born. This congregation has been there since the morning Luke was born throughout this entire journey. There were weekly updates and prayers. They would ask my parents every Sunday how things were going. It's special to us. Also, on a sad note, it was the last Sunday for our pastor of 19 years. He has been my pastor since we started attending Faith 17 years ago. He also married Jonathin and I 3 years ago. He was at the hospital the night before Luke's birth and throughout the first week while we were still at Memorial. He even made the trip to see us in Indianapolis. He would call my Dad often for updates to then pass along to the congregation. It was a very joyous and sad day at the same time. 

After church we had to set up Luke's party. It was no small feat. Let's just say, my Mom is a party planner. No stone is unturned. We had balloons, a pinata, kid goodie bags, movies from the NICU courtesy of Luke's Gampy, even a keg of root beer. Luke had a great turn out, over 100 people. There were so many people Jonathin and I felt bad that we couldn't talk to everyone. I can say that the celebration of the past year might not have rated on Luke's scale of fun yesterday, but it was great for Jonathin and I. In a way it was a little thank you from us for all the help and support our family has received over the past year. Jonathin made a little speech to thank everyone and afterwards we were talking that there is so much more we could say to all of you. Not one little thing over the past year has been forgotten. You all took care of us while we took care of Luke. Now I sit here and listen to him growl and scream at some of his new toys and our dogs I am humbled. I have tried to keep my emotions at bay this week and I know tomorrow will be the hardest of those days.

I can be upset at the slow progress that he is showing, but it is progress. A year ago right now he was still in my belly and we were laying in a hospital bed dreading what June 12, 2011 would bring. The list of complications hanging over our head and what all the little miracle would have to overcome. I can say now he is a FIGHTER. Even when unforeseen circumstances rose, he would get through it. He might be small, but he is mighty. I am a PROUD momma of a micro preemie and my own special Superman. Everyday he amazes me, just by being here. 

p.s. - Here is a little story for you. On Father's Day last year I gave Jonathin a picture frame with a picture of him holding Luke. That same day things were crazy and Luke was flown by helicopter to Riley and we raced around gathering everything. For the past year we have looked for this picture frame. We thought we might have left it at Riley or that Jonathin took it to work. On Sunday morning at church Luke's Great Aunt said she had something for us. Apparently for the past year this picture has been circulating at Memorial where the nurses asked if they knew who it was in the picture. Our one nurse that we became close too while there had been on maternity leave and finally solved the puzzle. My aunt just so happened to run into her at Meijer the other day and she had the picture with her to get to us. How great is that? Finally that frame is where it is supposed to be on Jonathin's night stand. Just thought that was a great story to end with. 

A Huge thank you to everyone that endured the heat yesterday to make Luke's 1st Birthday a success!




Friday, June 1, 2012

ooops, please ignore the horrible look of the blog. I've messed it up and can't fix it....soon there will be an update and hopefully I can fix this...hahahaha. help anyone?