Feeding Therapy Day 1

Well, we are here. Luke and I got to his room around 10:30am this morning. The room is actually right next to the room we did our parent care in 10 months ago. So we get to look at the same wall as before. So far we have talked to a nurse practitioner and 3 doctors. Luke is now on a feeding schedule that mimics his NICU schedule. Every 3 hours we try a bottle of Boost first, then move to baby food, then to cereal made with Boost. We are apparently trying to plump him up while we are here. So far he doesn't mind it, other than the bottle being shoved in his face. He just isn't a fan. However, the G word has already been brought up....G-Tube! I have been asked my thoughts and feelings about it. I can say I am not against it, I just want to exhaust all options first. So far he has been great, napping and talking all the time. They are talking about therapy coming in and working with him also. They are very happy with his take to solid food and how he handles a spoon. They really want to look at his fluid intake though. I don't want to sound like a cheap person, but the idea that food and diapers are available whenever is fantastic. I know I am not the only parent that would say that. It is just a little help for a week, because the $30 a week just in Pediasure can take a slight toll. It doesn't sound like much, but it is the only fluids Luke will take at this point. Hopefully our day and night will continue like it is right now. Will keep you updated.

Jordan

Hot Hot Hot

The title pretty much sums up this weekend. I don't think I have ever experienced such heat. I had such high hopes for Luke's first Homecoming, but the heat had other ideas. We stayed at home on Thursday to save up for this weekend. On Friday evening we went to the Haystack dinner with my parents. It was in and air conditioning, thank goodness. We took one quick loop around the rides, and that was enough for all of us. Friday is usually the tractor pull night. We decided to stay and watch for a bit, however that didn't last too long. Instead the pool was calling our name. After a cool down we were ready for a long day on Saturday.

Originally Luke was supposed to walk in the parade along with us with Leroy the family Model T my dad has been working on for the past 6 months. However, the heat was too much. He was able to stay with his Great Aunt Pam and Quin in the AC while we braved the heat. It was soooo hot too, but we did it. That is, till Leroy had enough.

After the parade we headed to my Uncle Jack's Feed Shack to play and watch the cornhole tournament.   this year the proceeds went to Riley Hospital. There was 36 teams total and $700 was raised. That will cover a day's stay in the NICU for a baby. It might not seem like much, but when those bills come calling it is nice to know people are there helping your baby. I can't say thank you enough to everyone that came out, even if they had no idea how much that little bit helps. I can't thank my uncle enough either for holding the tournament, that really means a lot to us.

Tonight as I update, I am also packing for Riley. Luke and I will be heading to Indy at 5am tomorrow morning to be at admitting at 9am. We still don't have a full idea of what will be going on when we get there. However, I am ready to get some answers. I hope to update everyone as we start this new process this week. Thank you everyone for your support and prayers as we start a new phase.

Jordan

Luke likes to eat his shirt

Slept right out of his drawers

Luke's first fireworks

Quin's staying cool with her cool rag

Preparing and a Long Week

We leave for Riley in exactly one week and wow I am feeling a little overwhelmed. I feel like there is so much that we use daily that we can't leave behind. For example we use a noise canceling giraffe, a jungle "tv", and a turtle that shoots stars on the ceiling just to get to sleep each night. Do I take all of these? Or do I risk not having a normal night of sleep? Hopefully I get a call soon and they can help with all I need to bring. I can only imagine what all I am going to be carrying in with me on Monday morning. I'll need more than one red wagon, plus our stroller. 

I don't know how everyone else is handling the heat, but we have resorted to moving our entertainment center to our basement. Our air conditioner isn't performing to it's finest lately, so this is our answer. So far I think it works out great. The only drawback is we can't hear anything down here. So if the world ends around us, we will have no idea. 

We have also been to my parent's pool lately to keep cool. Luke has turned into quite and water bug. He just floats in his float and usually gets very close to falling asleep because he is so relaxed. He usually gets a nice nap afterwards too. 

This coming weekend will be our town's Homecoming celebration. Last year we missed it due to being at Riley, but this year Luke will be front and center. My dad has worked for many months restoring his grandfather's 1926 Model T and he will be driving it in the parade this year and the family will be riding on the truck or walking along with it, including Luke. We will have 4 generations on the truck. Also Luke is part of the cutest baby contest. If you come to the Bristol Homecoming, please drop some lose change in his can as you cross the bridge. You can't miss that cute smile. Also, my Uncle Jack's shop Jack's Feed Shack will be holding it's 2nd annual cornhole tournament after the parade at his shop. It costs $20 a team and there is $200 payout to the winning team and $80 for 2nd place. All the proceeds will go to Riley Hospital for Children this year. Which means a lot to us, and we will be taking it down to Riley. So please if you are interested sign ups will take place till 3:30pm on Saturday right before they begin the tournament. Luke and I will be there.

I think that is a little run down for our week as of right now. Hopefully we will have more as the week goes on. 

Jordan

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

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

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!

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?