Feeding Therapy Day 3

Well, today wasn't as great as the day before. Luke has finally realized the plan here and he isn't having it. He has discovered that if he doesn't take a bottle, which most of the time he throws his body away from it, he will have to take mushy cereal. I feel bad for the baby, because I couldn't eat that stuff every 3 hours. I have resorted to covering it with lots of baby food to surprise him with it. Also, I have discovered that if I place the high chair in front of the television set and keep him distracted I can sneak attack some bites. But even then the poor baby is full. I have lost my happy bird baby that loved to eat on his own time. Now I have Sluggo the baby. If he isn't eating he is sleeping. I can usually get about 30 minutes of play time with him between feeds. No to mention that the poor child is like an air freshener for all things vanilla. He has had so much vanilla Boost since Monday that it is excreting fumes out ever orifice. However, even with the stinky baby in tow we ventured to the NICU today to visit. We were able to see Liz, Lauren, and Jill. They all think he looks great and when Jill held him she thought he felt heavy. But what can I say, they're used to the tiny little people that Luke used to be. It was good seeing them again. They were my entertainment and family for 3 months. It feels a little odd going back over, but nice. We were also able to go back tonight and see Kaylene. Here I am so tired, but all I remember is spending late nights over there with here and the rest of the crew just trying to relax. How going home changes you.  Oh so let's get back to Luke.

At 7am Wednesday the nurses weighed Luke. The day before he was 6.60 Kg. I know what you are thinking, ugg back to kilograms, yep me too. So I took to google to convert since I was no longer given the chart like at the NICU. That converts to 14.5 pounds. Today Luke weighed in a 6.636 Kg which is actually 14.62 pounds. So Luke went up an ounce or so, which is our goal. I really felt like I was back in the NICU as I watch the numbers raise. I had to have a little laugh in the beginning because here he started at just 0.640 Kg at birth. So the doctors were happy with his weight gain and acted like we would go home Thursday, and maybe even today. However, then they did more talking apparently and they want us to stay till Friday to watch his trend. They also want to draw Luke's electrolytes on Thursday morning just to check them. I'm pretty sure he will just bleed vanilla flavored Boost.

This is now where we sit. It is 5:30am and Luke just had his blood draw. I was worried, just because of time's past. However, he took it like a champ and pretty much slept through the entire thing. Now is a different story. He is laying in bed just a talking and playing so I figured I would update since I didn't last night. Hopefully he will get some sleep before another big weigh in and the feeding time starts again. I'm just hoping we are starting to stretch that little belly out, because that is the only way this is going to work.

Jordan

Day 2 of Feeding Therapy

We are still here, no surprise. We are still on the same schedule as yesterday. His nurse weighed him this morning and he hadn't gained anything since the he got here at 10:30 am. Honestly did they think he was going to gain 2 pounds over night? So we continue on. Luke eats at 8am, 11am, 2pm, 5pm, and 8pm. He isn't used to eating every 3 hours and you can really tell when the time comes. They are trying to get as much fluid in him as of now. We are no longer on Neosure, his preemie formula. They have us on pure Boost for kids. So first thing in the morning, Luke is weighed. Then we give Luke a bottle. He is given 15 minutes with the bottle if he isn't taking it. If he is still drinking after 15 minutes we let him continue. With what we have left in Boost I make some rice cereal with it. I can add some fruit to it for some taste also. Today Luke ate the most at breakfast. He took 5 ounces from the bottle. Then we made rice cereal with the last 3 ounces. Luke took all of it. The medical team was very happy with that. When his 11am feeding came, physical therapy, occupational, and speech therapy were here. They did the feeding. Luke wouldn't take any from the bottle. They then worked on a spoon with him. You know he is still full when he doesn't look like a little bird. Usually at home he opens up wide, but now it looks like torture. He looks like he might vomit if I give him anymore. However, he is doing it for me. Yesterday he took the most fluid he had taken from me in one day. We will see if he gained weight tomorrow. I would hope he does some since we have almost doubled his intake today to what he is used to. If we aren't eating then we are usually sleeping. Luke is so full that all he wants to do is nap. We have a swing and a bouncer, but they only entertain him for a little bit. 

Another thing we are watching is Luke's bowel movements. They know his past, and are trying to look at all options. However, Luke might have solved it himself. This afternoon we had a good poop. They are thinking that he needs more fluids for good movements. Not to be mean, but that isn't anything new to me. Hopefully we can finally beat this thing. We haven't heard exactly when we might be going home at this point. We originally were told Thursday if all goes well. All goes well equals that Luke gains some good weight. I don't know what they constitute as a good gain. Hopefully we figure this out tomorrow. Hopefully tomorrow we can do a lot of visiting at the NICU. Looking forward to it. 

Jordan

Bouncing between feedings and naps

Hugging his Elmo

No more food please!

Love the no slip socks!

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