Bottle Dance!

Can I just say...hallelujah!!!! Here I thought fighting with a bottle was the normal. Today Luke has been glorious! Luke has taken 3 bottles within minutes with no fighting down to the last drop. Thank you Dr. Brown bottles. We had one once and he wouldn't take it...not anymore. It might be too late to save his weight, but just him taking liquids without a fight lets me sigh in relief. Not to mention, he has had no Miralax the past few days and has been great. I don't know if I scared it out of him or what. I can't thank out OT enough for the changes. Don't think we're anywhere out of the woods, but life has become a little easier at the Molnar household. Also today I slaved in the kitchen for 4.5 hours making homemade fatty foods for Luke. Hopefully he takes to it as well.

Honest About the Situation

Today Luke had another weigh in. Today there was no hype to the appointment. My hopes were not high. It might sounds sad to some that I'm not giving him the excitement and encouragement I once did. However, there is so much weighing on these appointments. Luke has began eat like he did before Riley to a part. He still fights food at times, but will take more than before. I am happy with this improvement, but know it is not enough. Yesterday I received a call from Riley and was given the 3rd degree on why we weren't following the plan accordingly, because IT WORKED BEFORE! I hate to disappoint her, but my son's MO is to do something well for a week before fighting against it. So today as we walked into our appointment I had one thing on my mind...how long? How long do I wait before following through with the needed nessecity? Luke did not lose any weight, however he did not gain either. I might breath a small sigh of relief, but then we get to the important stuff. According to the growth chart, the lowest weight for a 13 month child is 19 pounds to stay on the chart. For a 10 month child it is 17 pounds. My child is 14 pounds 15 ounces. The numbers don't lie at this point. To answer my waiting question...2 weeks. Luke has been given 2 weeks to gain over a pound. This won't take him out of the woods though. This will just buy us a few more weeks. Do I really want to just buy time? Or do I finally want to come out from the scary zone of weight? Do I keep pressuring myself or do I finally give our family some relief? It seems like a no brain idea, then why is it so hard to finally pull the trigger? At some times, like right now as I type, I want to call Riley and say schedule us for next week. Then I think to myself for 10 seconds and I tell myself, we can beat this. The problem I fight with is: what is best for Luke? Him going through a surgery that should alleviate some issues and hope he would grow in size and all the other needed areas? Or do I try to let him figure himself out? Put him through surgery? Stress him with food? When I put it all on paper it seems like an easy choice, then why do I still fight it? Is it my own personal issues? The amount of extra work? The life changer again? Does that even need to be considered? He is our child, and we will do everything in our power to give him the best possible life. There is no other option here. If we do go through with it, struggling with food doesn't stop. Luke still has to learn to eat and gain weight. There is no easy way out of the situation. There is no easy approach.

Nonstop Weekend

So at the end of last week I was wasted and stressed. I had basically broken and was at the point of the g-tube term bringing relief. However, it is a new week. On Friday our occupational therapist was back, and to say it nicely she was appalled at Riley's tactics. She hasn't seen Luke in a month due to her vacation. When she left he was eating fine, just not a lot of calories and did not know anything about our visit to Riley. She agreed with me that know Luke is so afraid of eating due to the shoving food at him idea. She has vowed to work with Luke as much as possible to make him comfortable again. She is coming up from Ft. Wayne weekly now even on her own time. Also she is bringing items to try. She thinks he is getting overwhelmed and can't control the suck, swallow, breath method. So we are now slowing the eating process. I also called Riley just to let them know what is going on and they said we are just going to watch him till his appointment at the end of August. We are just making sure Luke doesn't get dehydrated. This weekend Luke was busy. His Aunt Julea got married and he was the ring security, his official title. It was quite warm, but he did well. Luke also made his Elkhart county 4-H debut. It was great weather also, not too hot. Jonathin and I took him to the animal barns and the project building. We think that we have his ten years planned for him. No doubt about it, Luke will have goat for sure. Jonathin would also like to try some beef steers....we will have to see about that. There are plenty of projects to do also. We both told him he needs to grow soon, cause were ready to be 4-H parents. I guess that's what you get when you have two ten year members as your parents. It was just nice to go this year since we didn't get to go last year. Hopefully we can get back at least once more this week. The fair food must have gotten to Luke though. When we got home from the fair we found out that Luke didn't just have one tooth coming through, but 3 right in a row. He had a fever and wasn't feeling the greatest on Saturday, but he seems like maybe worse is over now. Jordan

Tears

So I haven't really updated sine we came home from Riley. Let's just say this, I'm stressed! Luke is fighting every bottle more than before. Here we thought we had a breakthrough. I'm getting something in him every three hours like they wanted, but most are solids. Then this past Sunday Luke's Miralax kicked in and any progress we made was lost. I'm beside myself. I have our home scale and it says either we are the same as we left or he has lost a half an ounce. That might not sound like much, but after gaining 10 ounces in 5 days it is substantial. Just this morning when we tried his bottle, I started to cry as he wouldn't take it. Here he is giving me this goofy grin with the nipple hanging out of his mouth, and I'm crying. It is so stressful. Once again I'm just trying to get him calories. We have a weight check today at our pediatricians and I'm so nervous. Honestly I feel embarrassed if I can't do this. I'm not holding him responsible, I'm holding me responsible. He doesn't know what we're trying here and can only do what a baby does. I however am the mom, I'm the one in charge of him and it makes me feel like a failure not just as a mom but also to him in general. I'm doing the same thing we were doing there and am in the same schedule, I just don't get it. I put on the happy brave face, but let's be honest...I'm crumbling sometimes. I'm scared for what is the future for us. I had a nice breakdown to our therapist on Monday, and felt embarrassed about it. At least I am working on my patience as of now. On a side note, Luke is finally getting his first tooth! I find it Friday when we were driving home. It has just started to break the skin. He is handling it well. So far we haven't had sleepless nights or crying. He just gums on his Sophie giraffe and his shirts. He is such a happy baby though. Jordan

Day 4 of Feeding Therapy

We woke up Thursday to a stinky boy. My first thought....ahhh there goes some weight for the scale. Sad isn't it, I don't want him to poop before weighing in, but at home that is all we talk about. However, Luke came out swinging on his weigh in. 6.755 KG and after a trip to good my boy went up 2.7 ounces in 24 hours! It was amazing and I was so happy with him. Our goal is 1 ounce a day and he blew that out of the water. That was after his 8pm  feed came back up too. He is sooo full his little body couldn't handle it. After weighing in we went back to the routine. Still the little man is fighting the bottle some and really can't eat more than 4-6 oz every three hours of anything, but he is trying. He cringes when we put him in the highchair after working the bottle for 15 minutes. However I was able to get some other flavors or Boost instead of the dreaded vanilla. Luke had chocolate at 2pm and drained the whole bottle. Who would have guessed. We tried strawberry at 5pm and he took most of it, but nothing like the chocolate. Then at 8pm he was pushing it, but took another 4oz of chocolate.

They also wanted to start Luke on Miralax again. So he was given 2 doses yesterday and 2pm and 8 pm. Still nothing from that, but I think he knows to wait till after 7am when they weigh him. Hopefully the fluid and Miralax will regulate him and make him comfortable. Like I've said from the very beginning, this baby won't eat because of his pooping problem. I'm not crazy, but why would you eat if you are still full and stopped up??? Doesn't take a genius.

I know it seems like shoving food at Luke seems like such a simple answer to our weight problem and that I should have been doing this from the beginning and that is how SOME people would do it. However, if you are not in the situation that is surrounding Jonathin and I, you have no idea and no right to tell us what you KNOW we should be doing. We can take your thoughts with a grain of salt, however riding in our boat for the past year you would understand. I don't know how often either of us can say it, until you are a preemie/NICU parent, you won't get it. Even if you try to understand, there are things you don't see, understand, or feel about the situation. So, here is our peace, play with Luke, talk to Luke, spend time with Luke, BUT don't talk to us like you KNOW all that is going on. The amount of time spent with him won't make you know it all. Every child is different and I didn't choose this lifestyle or this new way of life. HE CHOSE US, and I couldn't be happier with the little man we get to raise. We are being tested and the ridicule that we get from others is not needed in the situation. I just HOPE that you are not put in the same situation we are and are forced with the challenges we face every day.

Thank you everyone for the continued support and prayers with Luke. Hopefully we are going home Friday. I know I could use a night in my own bed and I'm pretty sure Luke would like to see his dogs...haha.

Jordan

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