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.

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