Waiting to schedule

Even with Luke's great intake of formula the past two weeks we can't overcome the nutrion need.  We went for a weight check on Wednesday and Luke lost a half an ounce on one scale and gained half an ounce on another. I know it isn't good if they are that different, however no matter how you take it, it's still half an ounce. So where do we go?  G-tube... This is no easy choice, and I know this has been a topic for sometime. I feel like we have tried everything at this point. His biggest problem is he isn't routine. He doesn't take the same amount everyday and his body uses the extra from one day to make up from a day. This tube will help to prevent this. Whatever Luke doesn't take by mouth, we will give him by tube. I think my biggest worry is the general idea of the tube. It is another reason my child is different from his cousins and friends. Another reason to put him in a different catergory. It is another story to tell. It is for the best, but won't ever be an easy decision.  I just ask for continued prayers for Luke and us as a family as we move forward and hopefully find some peace.

Weight Check...Check!

If you follow me on facebook you know that Luke has been going crazy with his new bottles. We went Wednesday for another weight check. He has been taking his new bottles for 4 days or so. We were still using 4 ounces or so each bottle. Which even that amount is a lot to what he was taking. Luke weighed in at 15 pounds and 2 ounces. He went up 3 ounces. It might not seem like a lot, but it is steady and not extreme. It is no where near the pound and a half they would like us to reach by this coming Wednesday, but I feel like it is safer for Luke to gain like this. If he can keep this up, I will fight the g-tube placement unless we falter again. However, right now it isn't in the cards. He is taking at least 24 ounces a day, and yesterday he took 33 ounces. He is taking 8 ounces bottles, that's new. We are not using Miralax and he is so much more comfortable. I am fighting the urge to weigh him at home, I just want to wait till next Wednesday and see if he surprises me.

Laura, our OT, came for a visit yesterday and should couldn't believe the difference in Luke. His face is fuller and he was so happy and moving all around. She was so happy with his progress. Hopefully we can keep it up.

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