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.

Sniffles

Well this warm weather has finally gotten to Luke. The night before last we started with some sniffles. Slowly they have went to more of a stuffed nose. The nose sucker has been unpacked for use with no success. The inhaler has also been unpacked for occasional use. Finally this morning the nebulizer has been unpacked. This is the worst part about packing early, you never know what you are going to need. The good thing, Luke hasn't slowed his eating pattern with the cold. And on Monday we leave for Indy for a Pulmonary appointment on Tuesday morning. That makes me feel a little at ease with his cold. However, I know I am not the only one that watches their kid like a hawk at these times.

I feel so uneasy when Luke isn't acting like his normal self. Thoughts fly through my mind: hospital stay, oxygen, rsv, apnea. I am not comfortable during these times. If Luke coughs I come running to check on him and make sure he is not choking. It is really bad in a car, I have to pull over to check on him. Then I wonder how bad do I let him get before we once again go to the ER. Now don't get the idea that he is horrible right now, he isn't. Luke just has a sniffled nose with a few clearing coughs. However the thought about how it could progress. Which hospital will I take him to? Will they understand if we want to go to Riley? Just things that are always there. We haven't had the best luck with Memorial Hospital's ER the last two times we have been there. Our new thought is to go to Goshen since they aren't as busy as Memorial and that they are IU Health and might be more open to a Riley transfer if we ever needed it. Sometimes I wish that we still had a tank of oxygen around here. I hated it when we had it, but I feel more comfortable just in case to give Luke a little help. I think I am always going to have a hard time thinking of Luke as a healthy child and not a needy preemie. Normal kids get colds, and normal kids don't need oxygen....but Luke isn't normal. I hate saying that, but right now I don't see him that way. I don't know where to draw the line. When will I feel comfortable with him sleeping all night? I have yet to sleep all night long since we have been home in September. First it was because he woke up. Now though, it is me just making sure he is breathing. Right before I fall asleep I have to get out of bed just to check once more on him. Then, because he is still in our room, I turn the TV down and listen to him breath. If I don't hear anything I have to jump up and put my hand on his chest. Once I'm finally comfortable then I can go to sleep, just to wake up again around 3am to listen and feel just to make sure. I even stare at him when he is asleep in the living room in his swing. I am always checking to see if his eyes look blue around them. There is always thoughts in the back of my head about what I would do if he wasn't breathing. How would I react? I wish I could calm my mind, but I have a feeling I will always be like this no matter how old he gets....sorry Luke, you have a hovering mother.

I pretty much wrote this blog in my head a couple hours ago as I lay in bed listening to him breath, wondering if I am the only weirdo out there. I hope I don't sound like a complete nut.

First Day at Church

We had a pretty good week with Luke. On Sunday was Luke's coming out day at church. The last time Jonathin and I were at church was Luke's one week birthday. We received a call that morning that Luke would be receiving a blood transfusion and later that day we were airlifted to Riley. This Sunday was a little different. He was a star as soon as we walked in. Everyone at our church has been the best support for the past 9 1/2 months. I don't think I have ever wanted to return to church so much. Of course the visit wasn't without a few tears. As Jonathin and I sat in our own little corner of the sanctuary our pastor revisited Luke's story. How just 9 months ago during the service Luke as born with a 20% chance of survival, and how the world was an unknown to us. How great is GOD? Luke has no idea the support that he received from our congregation. We were met with a round of applause. It was crazy at the difference of feelings is insane. The last time we were there, the tears were flowing as Larry spoke of our little man, and this Sunday tears were there with joy. I cannot thank everyone enough for the continued prayers and support.

After church we took Luke to visit the Easter Bunny at Linton's. Luke didn't mind the bunny too much. He just sat there while this skinny bunny held him. I think we were more excited for him, he wouldn't crack a smile at all. Linton's also had baby chicks and ducks that caught Jonathin's eye. However, Luke didn't find them interesting. I don't even think he noticed them.

This week Luke has been struggling this week with pooping. No surprise here out of this child. A common problem since he was 3 days old. We have had constant marbles and nonstop grunting and now we are on to nothing in a day in a half. He has been taking bigger bottles, sometimes 9 ounces when he wakes up. So far from his original 2-3 ounces at a time. He also is eating more baby food. However, with all this food there should be more poop, but that is not the case. We have his probiotic daily that had worked for awhile. The pediatrician offered up Miralax, but we did that when we first came home from Riley. It worked for awhile, but we had to stop since he started eating food. He wasn't taking enough liquid so he would cramp and cry. I am hoping he figures this out or another call will be made to the doctors Monday.

Jonathin and I are getting closer to moving to the new house. We have been packing steadily. I guess you could say that is one thing we have come to learn over the past 4 moves. The 5th time in 5 years finally has us doing things more organized. Hopefully this weekend I can get everything that is not a necessity right now packed. They moved our closing up almost a week if everything goes well. Less than two weeks.

Last night my Aunt Pam, Riah, and I took Luke and Quin to get pictures taken. Over 2 months ago my mom bought the babies matching outfits from Target. We had to weight for Luke to grow a bit, but had to go now because Quin was getting to point of growing out of her outfit. Luke was ready to go. For a little boy that isn't always the easiest to work with, he was in a good mood. It was Quin, the usual happy baby, that wasn't in the mood. However, the pictures turned out cute for the little time we were there. It gives me more to put on all the new walls in the house.

I think that pretty much sums up our week. Luke had occupational therapy yesterday. His therapist was happy with his progress and he tolerated it very well. Just have to keep working on hamstrings and hopefully he will become more interested in his toys.

Just relaxing in Quin's high chair

Welcome Home Molnars'

It's been a few crazy weeks with Luke and us all in general. As the picture shows, we have finally found our first home. After Jonathin worked two weeks straight we hit the trail hard on his first few days off. Our realtor took us to some homes she picked for us, since we had seen most of everything we picked. The second house we saw that day was for us. For the first time in 20 some houses, Jonathin and I both liked it before we had even seen the entire house. We didn't even want to go to the next house. There is so much room in this house. It doesn't look that big in the picture, however, the inside is great. We have two fireplaces and 4 bedrooms. There still needs a little TLC on the outside, and few little things on the inside. Jonathin and I are both very happy and excited. I am dreading the packing up for the 5th time in 5 years, but at least this is it for awhile. We can only imagine how Luke is going to do circles throughout the house.

On the Luke side of things, we are out and about. He is going on walks and going places with us. We still aren't seeing a lot of people, but we are going places. Both of us still are cautious with sick people and snotty noses, the RSV carriers. However the weather finally has pushed us to get out. Also, he has went crazy with his rolling. We can't put him on his stomach for tummy time without him flipping instantly. He is also playing with his rings. The therapists are so happy with him. We are still working on stretching his hamstrings to help him learn to sit. So far he doesn't tolerate it well. Hopefully the more we work with him the better things will turn out.

Tomorrow we go back to our regular schedule with Jonathin working. Hopefully we can get some packing in while Jonathin is at work.

Thank You Jessi

I am just happy to see that I am not to the only one...Preemie Weight Check

Another Week Down

Be happy everyone, it has only been a week since the last update. Luke had two appointments this past Friday. He received his next to last Synagis shot. He did well, however, I can tell he is going to be like every other kid with shots. Here we thought he was going to be great with pain, but not sooo much. When they weighed him he was up to 12 pounds 3 ounces. He is up half a pound since Riley. I really just think scales are goofy between here and Indy. I am still not happy with the weight gain along with everyone else we see. They tell me not to worry as much, but I still have it on my mind. So, I was informed this week about a new additive that will hopefully help him gain weight. It is a butter/sugar mixture. We will start that this coming week. I am hoping that will help instead of loading up with extra formula.

Luke also had a check up with the hearing doctor on Friday. Nothing new there. We go back in 3 months for another mold to be made for his growing ears. We just get to chase his aids around when he plays.

We might have some good news on the home front, but I don't want to jinx it. Hope to have some news soon.

Waiting patiently at the hearing aid office.

Checking out Mom's glasses

Luke decided to write letters to Mickey, Goofy, Donald, Buzz Lightyear, and Woody

Yes, We Are Still Here...

I'm sorry to all of those loyal readers, and those that complained due to the long break. We have had a crazy couple weeks and now I think we can finally get to everything. Let's start with two weeks ago. We took Luke back to Riley for his first appointment in months with opthamology. This check-up was to check for the need of glasses. First they checked to make sure that Luke was tracking and following things. I was a little apprehensive about that. I don't think he tracks that great, however, he did great for them. They didn't see any problems with that. Then we sat in the waiting room for 15 minutes while his eyes dilate. The only appointment went quick after that. He did very well. After thinking for all these past few months that Luke would be in glasses since we had the eye problems early one, we were surprised to the learn...NO GLASSES! His eyes look great, and we are free from opthamology for a whole year.

While we were at Riley, we were so excited. We were able to see Lily for the first time in a long time, and her parents too...haha. This was the first time Luke and Lily were able to see each other. Since their areas weren't next to each other in the NICU, they only knew each other from pictures. Lily wanted to play, while Luke was more of an observer. Hopefully Luke and I can visit them in April for March for Dimes. Theirs in Terra Haute is a week after ours and we might go be part of Team Lily. It all depends on the weather and Luke's health.

Now let's move on to this week...hearing aids! We went Monday afternoon to pick up his super ears. They are blue, small, and great for him and a pain for us. Luke doesn't seem to mind them and doesn't mess with them. However, if he is just laying around, they like to pop out of his ears. I am afraid that one of these times a dog might snatch it. I know Luke could hear to begin with, but the aids clear the sounds for him. When I put them up to my ears, they are so clear. They block out the background noise and clear voices for him. There hasn't been and "Ahhaa" moment, but I think he likes them. I just hope they can stay in his ears better the older he gets. We will have to go back every 3 months for new ear molds to be made as he grows. Also, they will also be checking if his hearing changes. There is so many things that these hearing aids can do as Luke grows and different settings for him. As he learns to use them, more can be turned on for him. I will say though, he is cute with them.

Other news...school! To cut to the chase, going to Gary didn't work out. I feel like I was pushed into going back too school right now. I know that I was not mentally ready or prepared for school. Also I know Luke and I weren't ready for the schedule that is needed to finish school. I am working towards moving to South Bend in the summer. I went in for a meeting with them, and I honestly feel like more was accomplished in 20 minutes than in 2 years at Gary. Jonathin thinks that I will be happier here and will get through things easier. Fingers crossed that things work out.

Also...Jonathin and I are now house hunting. We originally thought we were going to buy the house that we are currently living in. However, we both decided that it is nice, but not what we want. So, with Luke and Jonathin's schedule we are currently looking at homes. We don't really know exactly what we want, hopefully it will just hit us when we visit a house. We, however, have seen a few interesting ones. For instance, we did find the house used for the Brady Bunch if you could believe that...just kidding. However, it did smell and resemble it.

This weekend I am scrapbooking with the family while Jonathin and Luke have a boys weekend. This is the first time I have been away from Luke and Jonathin has had him all by himself. So far so good. Luke seems to be having a good weekend for his dad. We shall see how tonight goes. As much as I miss him, it is nice to get away for a bit, and I think his daddy might like it as well.

I PROMISE to not make you wait so long for another update. Hope all these pictures will help with the long wait.

Jordan

Matching Accessories

Luke and Lily

Cousin Time

Oto, Luke's Otter with matching hearing aids, and yes he looks like a rat.

He is ready for the pool