GG = GREAT Grandma

It has been too long of time since an update. Luke has went through a cold, cough, and a stomach bug. He has had his first RSV vaccine of Synagis. He has been to Riley for a surgery check up for his g-tube. He has also began speech therapy every other week. And lastly we had a switch of occupational therapist....that is just the past couple of weeks. As much as I could go into all of that, it's not where I'm going with this one...

This past Friday my Grandma, Luke's great grandma was watching him while I worked that evening. She had mentioned that she was having pain in her abdomen and might go to the emergency room later that evening. She has had the pain before along with a bowel blockage. No one in my family expected what would entail now 48 hours later. We have witnessed 2 emergency surgeries and a fighting will of our grandma. We have been up and we have been down. Now as I sit in the intensive care unit waiting room, surrounded by family, my mind wanders to my own great grandma and how little I remember of her. I was 8 when she passed and I can't count enough memories on both hands that I have of her. Then I think of Luke and him being only 1, and how he may not remember not even one memory of his time with his GG. It hurts, especially because he will never know all she has done for him since his earlier than planned birth.

Grandma raced to the hospital to see him before he was airlifted to Riley. She didn't want to miss that little guy. She braved the pain to ride to Indy to see Luke at Riley, when he was only a month and a half old. When we were locked in our home for RSV season, GG would call to check on us and make sure his Mom had a Mountain Dew to get through home arrest. She would always drop everything to come to our house to sit with Luke while we packed our house, or when I would get out of the house for a couple hours. Grandma would always squeal when Luke would grab her and pinch, because it would leave a mark. Just Friday she got a kick out of feeding Luke her whipped cream from her milkshake,

Grandma would jump over backwards and do anything for any of us grand kids, no matter how old we got. She will ride with us to doctor appointments and chase after the kids throughout the house. These memories Luke might not remember specifically, but I hope that we can all keep these memories for him. The pictures tell the story of how much she loved her grand kids, and the way she bragged about her 1 pound miracle great grandson. No matter the outcome of her situation at this early morning, there is no other person I would want to call my G, or my son's GG. We love you Grandma! <3

Thank You!

A blog that I follow religiously had a guest blogger that I also follow this week. It might have been over a year ago, but the feelings don't seem to leave. I thank Pierce's mom and Jack's mom for helping me the past year. And like the post says, I can't thank Lily's mom, Heather, for the past year.

New NICU mom

Play Weekend

First off can I get a big YIPEE for weight gain. In a week Luke gained a little over a half a pound...this is huge for us. He has been keeping down what we feed him and eating mostly by mouth. Usually once a day we have to tube him, but no complaints here. The best part, he isn't even taking the 6 ounces each feed they want since we have to work up to that point. Imagine the gain we could have when we finally meet that point. Hopefully he keeps gaining.

This morning we will be heading the pediatrician though. He has his first bought with granular tissue formation under his button. So he will need some silver nitrate to stop that. After Dr. Durham shows me today we can do it at home. I know he isn't going to like it when they tell me to give him Tylenol an hour before. ugh!

Luke got to have a play day on Saturday with his "little" cousin Quin. Jonathin and I had our first day to ourselves in what seems like months. There was no other place to take it but at the Notre Dame/Stanford game. We got soaked, but it was amazing! We all slept great that night. Luke was pooped from playing, and we were wore out from the rain.

We have an extra fur baby for a couple days this week. My mom went to Florida and my dad is in Indy for work leaving us with Jules. I think she is more active then our 3 dogs, cat, and Luke combined. She also snores worse than Jonathin. 

That is about it around here lately. Not too much to update, and that isn't a bad thing. Oh and GO IRISH!

Jordan

Week one

We've had some troubles to start tube feeding, but after a little tweaking I think we've figured it out. The doctors want Luke to take 6 ounces every 3 hours. Well, that is asking too much to begin with. So we took that down to 4 oz each 3 hours to begin with. This has stopped the vomiting. Luke will also take more by mouth this way. After this first week, I hope to increase it to 4.5 ounces and keep the same schedule as we go. His incisions have also healed up nice. Not completely healed, but were getting there. Luke is also getting comfortable with his tube. He has started to sleep on his side again and doesn't cry much when we pick him up. He has actually grabbed at it a couple times and it makes me hold my breathe. Either I'm worried he will pull it out or worse, cry out. His button still isn't healed all the way. It gets stuck during the day, and we clean it still and Luke doesn't mind that. Also, Luke has started sleeping better....thank The Lord. The first few days were hard. He is getting back to his normal sleeping times. He still wakes up a couple times throughout the night for his pacifier. You can see the energy coming back to Luke. Hopefully our increase will work this week.

Jordan

RSV revisited

Well it is that time of year again...flu season/rsv season. What does this mean? Well at the Molnar's it means isolation. I was really hoping to skip it this year, but lets be honest, Luke isn't ready. I think it will effect me more than him, like usual. Back to no trips out just because we can. This year we hope to do some family things that we weren't able to do last year, but it all depends on Luke. Last year it seemed a little easier to stay at home since we had the oxygen and the monitors, but now he is cord free and easier to transport. But Jonathin and I need to stay strong with it this year.

In light of the RSV and lung infections we have witnessed the past few months, I don't think we want to test it. Two preemies we know have had RSV and another NICU friend has had a horrible respiratory infection that has put her back on the ventilator. Last year we were able to get the RSV vaccine Synagis, not this year. The doctors believe that Luke could qualify, however we had to fight for it last year right out of the NICU. Also it is $3000 shot each month for 5 months. Even with our insurance it is a $400 deductible each month....hate to say it we are not made of money. This just adds to our decision for isolation.

So we are just asking a couple favors if you come to visit Luke.

1. Please be up to date on your flu shot and pertussis. If you got the pertussis shot last year, you are still good for this year.

2. Please don't visit if you or someone around you has been feeling under the weather for a day or two. This is just covering us, just in case.

3. Please wash your hands and Purell them before touching or playing with Luke. This isn't just at our house either. Please don't be afraid to ask us either, because we have a bottle of hand sanitizer either on a stroller or in the diaper bag at all times. We've learned since his birth to constantly refresh our hands throughout the day.

4. Please remove your shoes when you come in our house. This is just courtesy to keep germs down around here. I mean think of all you can bring with you from throughout your day.

Hope that you can understand our wants and needs for Luke. We very much want to keep him out of the hospital, especially with the new tube. One less thing for us to worry about. If all goes well this should be our last flu season in isolation.

In other news, Luke is doing well with the feeding tube. We are still trying to figure out the amounts and times. His tummy needs to stretch and get used to it. He doesn't seem to mind the feeds when we tube him, it doesn't always settle with him later on though. The doctors don't seem too worried since it only happens once a day. So were still testing the water. He had his sutures removed today and did great. Now we can clean around the tube a little easier. I don't know which one of us will be happier for Friday...bath day. This kid is starting to put off a stench that we can't cover with lotion much longer. I don't know how we did the wipe down baths for 3 months in the NICU.

Also, Luke will be starting speech therapy soon. First Steps has added that to our schedule of weekly activities. This will help with his feeding and his speech. They don't want to wait too long before catching him up with his communication. We don't know when that will start, but hopefully within the next month.

That seems to catch everyone up on what is going on around here. Hope everyone has a wonderful gloomy Wednesday. It is good day to read, or do some school work around here if I can Luke on board.

Jordan

Tube Questions...help?

Hey Tubie Mom' s, I just have a few questions if you have the time. I would rather hear from you that have experience than the doctors....sorry medical professionals.

How long did it take for your kiddos to get used to the feeds. Luke's stomach still doesn't allow for the 5 feeds of 6oz  every 3 hours. He just has slow motility and were sitting at 4 feeds as of now. Also, the past  two nights he has gotten sick an hour or more after his last feed and throws it up...and mean all that is there. He is pooping, so I know it is going through him, but still not getting there.

How do you add baby food to the equation? The doctors just want formula, but he loves his food and I don't want to lose what he likes and knows how to eat.

Also, how do you give it? Luke has a wandering hand that likes to grab the tube and then hurts himself. I'm trying to balance giving it slowly, water to flush, and watching his quick reflexes...not always working out.

How fast do you give it? I feel like I'm taking my time, but then its tops going all together. I don't want to make him sick. He doesn't seem to mind it, but I don't want to do it too fast.

I knows lot is trial by error, but any useful tips would be great at this point. Thanks in advance

Well...let's get gaining.

All is well now. The past 48 hours has been long and a little overwhelming. On Thursday Luke, my mom, and I left for Indianapolis to spend the night at my Dad's hotel. He had been in Indy all week due to work. We still hadn't heard from Riley about the time and other information about the surgery when we left. Ofcourse we couldn't have a normal trip to Riley, due to the help of some crazy person in the Riley emergency room. Apparently on Thursday around noon, something chemical spilled in a purse in the ER that led to people becoming sick, and actually coding. The lady that brought the fluids in is still in critical condition. To make a long story short, everything was delayed due to homeland security and the hospital being on lockdown for many hours. So when we did receive the call it was a good thing we had already left, because Luke's surgery was first at 7:30am and we needed to be there at 5:45am! Luke played that night in the big king sized bed and relaxed, unlike his mother.
It was rough the next morning letting the nurses take him back. My biggest fear was the anesthesia and the tube they were putting down his throat to breathe. We'd been through that enough, didn't want to go back. However, the doctors said he did great, and Jonathin made it down in time from work to see him first in recovery. He looked so sad in that bed all drugged up. I think that was the worst part. He got the works with his hernia, orchiopexy, and g tube. Quickly after we saw him he was moved to his room up in the Simon Towers. All he wanted through the day was his blankie, pacifier, and his morphine. We tried not to touch him, because he was so sensitive and it would just agitate him more. He was in and out of sleep all day long. The night wasn't so bad, other than a couple times he was awake and they gave him meds. They started feeds 4 hours after surgery purely through the tube. He didn't seem to mind the food, but sure didn't want us touching his belly. His MIC-EY button looks a lot like a hole on a beach ball. It has large sutures around it holding it in place till Wednesday. We just lock a tube in to it and feed him by gravity. By the time Saturday was there I wanted to see if he would take some by mouth before we tubed him, since that is my plan. I don't want to rely on the tube all the time, so he forgets how to eat. He took half a bottle that way for me and then we were able to tube the rest. Finally after the tiniest of bowel movements we were discharged at 4pm on Saturday. Luke did really well on the car ride home. We thought the carseat would be a problem, but he seemed comfy until you had to get him in and out.

We're now home and Luke has survived his first night back. He must have really missed his bed too, because we are on 12 hours so far of sleep...yea! So today we will take it easy and try to figure out this new lifestyle. thank you again for the prayers the past few days and over the past year. Hopefully this will help us gain some weight and alleviate some stress for all of us.

Jordan

It's Time

In 48 hours time, we will be getting comfortable in our hospital room at Riley and all will be done...if all goes as scheduled. Luke and I are finishing up our laundry and packing our bags for the occasion. It is hard to know what to pack for this trip. What kind of pajamas for Luke? What kind of clothes to come home in? What is he going to be most comfortable in for the long ride home? I want him to be as comfortable as possible for the 3 and half hours home. Not to mention if we stop. I always over pack, but truthfully who doesn't with kids.

So sometime tomorrow I will getting the phone call from Riley informing me of the time of Luke's surgery. We are thinking it will probably be around 11am since they go by the birth month schedule. So after class tomorrow, Luke and I will be headed down to Indy to stay the night at a hotel. This way it allows Luke to be as comfortable as possible the night before. We don't have to hurry and Luke can get a good last meal before his surgery. Jonathin is coming down Friday morning after he gets off work. It is like being back in the NICU all over again.

I am anxious, nervous, and relieved that this time is finally here. I know we are doing the right thing and it is just time for us to get used to it. I am just praying this works, and we can stop constantly worrying about his weight gain.

At the same time we are down at Riley, a family that has been there for us since the beginning are down there as well. I went to school with Anna's mom and would like to ask for some prayers to be sent her way as well. She is fighting pneumonia and is trying to regain her strength. Just would like to get her home soon along with him mom and dad.

Thanks everyone for your continued prayers and concerns. Hope to keep everyone update as soon as possible.

Jordan

Holy Long Time Batman!

It has been forever since the last update....phew. I can't say there has been a lot going on lately. We are patiently waiting for Luke's feeding tube surgery. September 28th is taking it's time to get here. However, we have had a good time here lately. On Labor Day weekend we took our FIRST family vacation. We went to Holiday World in Santa Claus, IN. This was the first time Luke took a long car ride without visiting Riley hospital. We had a good time. Luke was able to ride a couple rides and play in the pool in the big water park. I think it was more of a vacation for Mommy. I was able to go out and relax while my Mom and Aunt watched Luke. It was the first time I've actually been gone from the house since Luke has been born, that once again, wasn't for a Riley appointment. He did well in the car also. We did plenty of stops for him.

This past weekend Luke and I ventured to the Riley NICU reunion in Indianapolis. Last year at this time, my mom and I walked down to it last year while Luke was still in the hospital. So this was the first year we could go. It was really nice and there was so much for the kids. The next couple years when Luke is a little bigger I think he will be into it more. The best part was getting to visit with Lily and her family. The text messages that we swap daily/weekly does not cover our need to talk on a normal basis. So just those few hours will have to hold us for a couple more months.

Hopefully I can do little updates more frequently now as I get my school schedule figured out...

We're scheduled

After a visit to a surgeon at Riley Hospital we are now scheduled for surgery on September 28th. It might seem like a long way away, but we needed a Friday due to my school schedule. Luke will have to spend just one night in the hospital due to the g-tube part of the procedure. Jonathin asked if there was any other options beside the g-tube for Luke and their response was a NG tube. We had that throughout our NICU stay along with the first couple weeks we were home. Luke fought the placement and the fact that it was taped to his face. The surgeon, Dr. Leyes said that most g- tube candidates are NG when he sees them and the parents have just had enough. I know it's an option, but why push back the inevitable.

Dr. Leyes then was looking at/for the hernia. We used to see it all the time when Luke was first home. However, we don't see it much. I know it is there though. We saw the x-rays in the NICU and the ultrasound when Luke had the abscess 10 months ago. While feeling around the hernia one of Luke's testicals decided to hide. We don't know if this happens often, it has never been brought up to us before.This adds to the surgery. Along with the hernia, Luke might also need a procedure to pull down his manly part and have it sewn in place. Dr. Leyes says it all depends on where things are once Luke is on the operating table.

Everything will hopefully be done laparoscopically with a tiny camera going through his belly button to show everything. They will pull his stomach to his abdominal wall and sew what they call a Mickey button there. This is his g-tube. We will be able to use it right after surgery. Then Dr. Leyes will look at the right hernia and possibly a left hernia. That can all be fixed the same way with the camera depending on the testicle. If it is back in the scrotum then no worries, however if it is in his abdomen then he will have to make a slice in the lower scrotum and pull everything down and suture it before they can work on the hernia. So if everything goes well, things will be all laparoscopic.

Now the g-tube will have sutures holding it in place for 5 days so it can heal in the right place. Then those sutures are taken out. The original tube will be in place for 2 months to heal correctly. Then we will go back to the surgeon and they will show us how to change the tube at home after that. This way we don't have to make many trips to Indy. We will also have to learn what to do if Luke pulls the tube out or for some reason it comes out. They will show us all of this. Luke's tube isn't his only way of feeding. He will be using it just if he doesn't take enough calories. What he doesn't take to in the day will be placed in the tube. This way he will be steady day in a day out. It won't slow him down, it should speed him up. Just the increase he has had lately has made him more active, add a little bit more and hopefully we can catch up quickly. For the tube to be removed he has to be able to not use it for 6 months and still gain weight. You can't really be given a time span, it is all up to Luke. Who knew a one year old would have so much control of our lives. He has had that power since birth.

So till the 28th we just keep on with what were doing. Today Jonathin leaves for the guys big week long fishing trip in boundary waters. Last year he went and we had daily phone calls and pictures from the NICU, this year hopefully that doesn't happen. A year ago at this time Luke was finally taken off the ventilator while they were gone. I don't think I need any big things this week.

Just a quick note...this past week I was turned on to a new book on another blog I religiously follow...Life With Jack. It is called Preemie, Lessons in Love, Life, and Motherhood. I read it in a couple hours while Jonathin watched Luke. It is amazing. The author is a mom of a preemie girl weighing 1 pound 13 ounces that is now 11 years old. It sums up my feelings from Luke's birth so well. We might have had two totally different situations, but the trip is still the same. It also gives me a lot of hope to what the future can hold for us when we get through all the troubling parts right now. I would highly recommend it to anyone that had a preemie or knows someone that did. It is by Kasey Mathews. It shows how a mom feels in this situation even if she doesn't want to talk about it...cough cough.. Thank you everyone for the continued support and prayers. Hopefully the next month doesn't take forever to get here.

Jordan

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

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

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?

Let's Play

I don't know what has gotten into our little man, but he is ready to play with some toys. I think he knows his birthday is coming up and that means more toys. I usually put him under his play gym for something to look at that isn't the swing. I have added more of his Lamaze toys too it like one of his therapists said a long time ago. All of a sudden I hear things crinkling and rattling and I look down. He has his feet in the air and arms around toys with both hands and putting things in his mouth. This is such a big step for him. We have been trying to get him interested in toys, but unless it is a ceiling fan or a light bulb forget it.

He showed his new skills to his therapist on Monday and she was so impressed with him. We went from no interest in toys to, "Look, I can hold one in each hand while standing!" Our physical therapist has also been working on Luke's sitting skills. His hamstrings were so tight when she started to see him and now we can stretch him almost all the way out without him crying. That is huge when he could barely go 30 degrees and we are not almost at 95. Now we get to work on his trunk muscles to tighten them up. I hope by his birthday we can have him sitting in his highchair straight for his cake.

We have also ventured into putting everything in our mouth. His hands have been there for a couple months, but now we can place our entire fist in our mouth. Then we spread spit everywhere. He has also taken up the new past time of sucking on his blankets so they are a big wet mess. Mommy is not a fan there. I am a person that when there is spit or spit up we immediately want to wash it and change things. This leads to a lot of laundry. As I write this, he is in his swing knawing on his yellow crocheted blanket.

Luke has also found a new bed buddy. TIGGER! Don't judge, but we bought him a Tigger after such a good day with therapy. I know...SPOILED. Can you blame us. Let me tell you, his eyes lit up like crazy. I'll post a picture. Then he held it the entire time through the store and that night when he fell asleep. It was cute. We think he likes the color. It is funny because his Uncle Calvin was " a friend" of Tigger's at Disney World right after we got married.

Oh what else this week...OH we are losing our physical therapist at the end of the month. She is from Fort Wayne and the drive up is too much since we are her only clients this far. The closest to us is in Lagrange. Of course this happens right as he is starting to do things. Hopefully we can get things figured out and keep a physical therapist. We still have our occupational therapist twice a month. She will be here tomorrow and we are going to work on a new sippy cup. We shall see how that goes. Also Luke made an unexpected trip to the doctors this week. He stopped really eating for a day or so. I wanted to make sure he wasn't getting another ear infection or sore throat. However, he checked out just find. He then came home and did just fine with some pedialyte. We are thinking that he just had an upset stomach.

Jonathin is currently knee deep in home repairs. The AC is now back up and working thanks to the repairman on Tuesday. We think we have a leak, but he couldn't find one. Good thing we have this home warranty for a year. Also we have another leak in the main bathroom. We knew about one that Jonathin has stopped for the time being. The whole downstairs bathroom has to be rebuilt when we decided to redo it, but for now we are good there. However he discovered a leak from the new shower that leaked behind the shower and wall and then falls into the unfinished part of the basement. The only way to the bathroom was by cutting holes in the bathroom wall and fishing around. He found the leak where the shower head connected. I don't think the guys that did the plumbing in the house have indoor plumbing. That seems to be our main issues in the house. Of course Jonathin is loving being Mr. Handyman. However, now my Mother's Day weekend will be spent fixing the bathroom wall and repainting the entire bathroom a new color. We have no idea what color they used and I don't want to try color matching. Also we have planned to finish pulling out the landscaping and repainting the windows outside. I was told the can of paint is from Luke for Mother's Day. Thanks Buddy.

That is about it this week. Hope you like the pictures.

Watching the game at Buffalo Wild Wings

How we sleep since the sun is in his room at 6am.

Playing with his gym

Tigger!!

TIGGER!!!!

Why Would I Lie?

As I am writing this, it is 82 degrees in our house and 2am. I just turned the AC to the disappointment of the husband, but Luke has a fever as of an hour ago. I say it is time. So awake I am while I monitor a warm baby and thought I would update a little.

We are finally settled into our new house and I think Luke likes it. He really can't tell us, but if he could I think he would say so. He now has two bedrooms due to all of his things he accumulated. He isn't spoiled or anything..cough cough. Today he spent most of the afternoon with his Gammy while Jonathin and I (mostly Jonathin) cut down 5 or so trees from our backyard. They were overgrown things probably from the 70's when the house was built. Now the yard looks to much better and bigger. I can already see the swing set in the next year or so. Next on the list is ripping out all the landscaping around the house.

Luke seemed to have a good day according to my mom. We are slowly working on a sippy cup to take juice. I would like to get a lot more fluids in him, but once again that can be a struggle. I'm hoping it isn't a preemie thing, but in the back of my mind I know it is. He doesn't like the big sippy cups and will take the small flat mouth pieces that go on a bottle we have. Hopefully today when his OT is here we can ask her some advise since she does do feeding assistance also. We had a little hiccup with his feeding when we did all the moving, but I think we are ironing that out now.

Now since Luke goes out more a lot more people want to "look at the baby." I've noticed and here lately we have been explaining a lot more about him. Don't think I don't like talking about my son, I mean come on I am a mom and he is ONE SPECIAL KID. I just can't get over the people that look at me like I am trying to pull a fast one on them. Honestly who would lie about their kid being a preemie? I would not wish this upon anyone. It is a very special club we joined last June, but not by choice. This one lady at Lowes yesterday just stared at me when I said he was a pound. Of course I forgot the 2/3 ounce, but I mean really. She just kept looking at me like I was from another planet. Yes Lady, there are miracle babies all around you. It's funny when you say preemie and everyone just assumes he was 4 pounds and in the hospital for a few extra days. I just smile at them and give them just a touch of our past year. But still, even if you are around Luke often you still don't know the half of it. Our little struggles that we go through daily. He seems "normal" now, but we have our struggles daily and our lists to accomplish everyday.

1. 18-24 ounces of formula daily - happens once in a blue moon.
2. 1 jar of meat daily - depends on his mood.
3. A lot of tummy time - let's be honest, how would you feel about refusing your child from rolling over and him crying nonstop and screaming as he throws his body around for long periods of time as you are told just ignore that part?
4. Work on getting any fluids in him as you can.
5. The on going poop issue - did he go today? Did he struggle?
6. Constantly asking if that was a cough you heard?
7. Adding butter to everything he eats.
8. Watching him lay everywhere, because he still can't sit at 11 months.
9. Stretching his hamstrings with diaper changes to the point he cries as you lift his legs....to help with sitting.
10. The wondering why Luke doesn't have a tooth yet?

These are just some things. Then you add on watching and hearing how it seems every other child around you is doing some amazing thing and others asking you why your child isn't doing it to. Simple...he is behind. That is all, and we except that. We work daily with him and believe me it doesn't stop him from being happy. No matter the anguish we feel daily with everything, I know I still have a toothless smile coming my way when I smile at him.

This morning I was asked for a couple pictures from a good family friend of Luke. She has some friends that just gave birth to preemie twins. She asked to give them a little hope for their situation. Who would have guessed that after everything, we can help others with just a picture of our Superman. I realize that I do that also while reading other blogs some days. I know with all of our struggles Luke go through I have hope to see him catch up and pass everyone's expectations. I mean look at all he has accomplished so far.

1. Living after only being given a 20% chance of survival
2. Coming home 2 days before his due date
3. Gaining 13 pounds!
4. Completely clear from oxygen and monitors
5. No feeding tube, and loving food

These are just a few things on that list. Everyday he does something that he should haven't done just by  being here. So, why would I lie about my amazing son, when I can talk about all he has done so far. As Luke's first birthday quickly approaches, I am letting myself feel more about what has actually happened the past year. I realize that even though I cried and cried when they told me he was coming early, I never let myself think things would end badly. I never would let myself think that we could loose him and how things could have been. Now, I see how it could have been and it overwhelms me sometimes when I look at him. I am finally letting myself feel some things that I build a wall up to prevent. I know on June 12, I will cry, but smile more. I thought I would put up some pictures, for some hope.

5 Days old, beating the odds

First time Mommy got to hold his hand at 2 days old.

Waited over 2 months for this...

Birthday!

Coming home from Riley.

Just a day at home with the oxygen tube.

Last day with oxygen.

No words...

First outfit at 2 months old and now 9 months old

2 miracles and 2 friends, even if they don't know it yet.

Sitting with assistance

Let's Get Him Fat!

So...last time we left you, Luke had sniffles and a slight cough. Well last Saturday night I didn't want to push it anymore and wanted to be told he was okay. So at nine o'clock at night Jonathin and I took off to Goshen ER with Luke. It was a whole different world there, no doubt about it. Instantly we were taken back and the doctors saw him before we even had him undressed. They were more knowledgeable about him being a preemie and from Riley. They even commented on how he didn't look like a preemie due to his head shape. As you can remember there was much work put into Luke's toaster head while on the ventilator. Within 2 hours we had an x-ray and a sputum sample and were on our way home. It was so nice for the x-ray to come to us. When we are at Memorial we have to go clear across the hospital to get it done. Luke wasn't as much of a fan of the sputum sample though. However, he was negative for RSV, Flu 1 & 2...yay! His x-ray came back with a little cloudiness in one lung, but they couldn't compare to others from before. It could just be from his chronic lung disease. He also had a minor ear infection. The doctor decided to treat him with an antibiotic for the ear and as if he had a touch of pneumonia. I was just relieved. Needless to say, we all slept better that night.

On Monday afternoon Luke and I headed to Indy for our first road trip alone. We did pretty well I think. We only stopped once in Argos for a little nose sucking. I don't think it bothered him, just his mom. We spent a little time at our hotel, then went to visit Danielle and Cassie. It had been awhile since they had seen Luke. They used to visit him often while we were at Riley. We had a good time catching up and Luke had a nice conversation with Cassie while Danielle made dinner. Then we went back to the hotel to try and get some sleep before our early doctors appointments. Luke had other plans. Instead we stayed up and watched many hours of Duck Dynasty, not that it bothered me too much. At least it was good entertainment. Even with our late night, we were ready for out first appointment at 7:50am.

These appointments used to seem like a lot of work to begin with, but now after 7 months of them, we are finally getting the hang of it. Of course the first appointment was with Developmental Pediatrician. We did not have a good appointment last time we saw them. You can reread it here...Don't Treat Us Like Failures. We were seeing a new doctor that was recommended to us, Dr. Keck. She was great with Luke. She was friendly and helpful. She was happy with Luke's growth, except for his weight....no surprise there. So the dietitian was called in. Luke's weight to length ratio isn't great. Since Luke still isn't a bottle baby, we had to figure out how to gain weight with his habits. The answer....PURE BUTTER! Luke will now be eating high calorie baby food with a teaspoon of butter in every jar. Also, since Luke isn't getting a lot of protein in his formula he will have to start eating baby meat. So once a day Luke will have a jar of meat added to veggies. She offered to add it to cereal and fruit....gag me! I couldn't ruin all foods for this little boy. His doctor describes him as an opinionated eater. She would like to have him seen by the speech therapist...been there and was then forgotten about again. She would like to see if they can break him of his habits. If that doesn't work and he doesn't start catching up with weight we will be recommended for an inpatient stay. They would have Luke for a week or so inpatient and a team of specialists would work with him. Including a psychiatrist...lol. We shall see about that.

We had an hour to waste before our last appointment so we went and sat in the main lobby for awhile. Luke napped while my mind wandered. All the noises and the surroundings brought me back to the 3 months we were there. It seems like forever ago, but then I could be right there again tomorrow. That was our way of life for so long. I think it will be interesting when Luke can finally know this amazing place and what they did for him.

Lastly that day we met with our Pulmonary Nurse Practitioner. Nancy was happy with how Luke looked and sounded, even after his ER visit. She was also happy with his growth and weight gain. She doesn't see the weight and length ratio, she just sees what he has gained over the past month. Since Luke hasn't had a trouble really over the winter she was happy if we don't see her till the end of August! That is only if we have problems this summer and if we need her help to get Synagis shots next fall/winter. From a baby that was on a ventilator for 2 months to where we are now...amazing. I never thought we would get to this point for quite a while.  After that good news we headed home. The ride home wasn't as easy as the ride down. Luke was tired of being in the car seat, and I didn't blame him.

He has started his new feeds and hasn't done too bad with it. Hopefully he will keep it up. We still haven't closed on our house, hopefully on Tuesday at the latest. I think Luke will be happy too when we move. The poor baby has no toys or entertainment other than his swing. I think Mom is getting pretty boring to look at and play with daily.

Not so happy with his meat.