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