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

Quick One

I would just like to say...the home health equipment is gone!!! They came and picked everything up yesterday. I think Jonathin was the most excited.  We can now light candles again in the house. That is a big deal to us. 

Also, on Monday we were given the okay to switch formulas. I don't know how well it is going. He is gaining, however he seems to spit up a little more than usual. He still has to take the preemie formula for his cereal, but we get to try something new. We now have a goal to gain an ounce a day. We even went out and got a scale to weigh Luke daily. This goal puts us on the growth chart on Luke's 1st birthday. 

Tomorrow we go back to the audiologist to begin the fitting process for Luke's hearing aids. Wish us luck, because I am not looking forward to this. He doesn't like his head messed with, especially his ears.

Jordan

I promise to have some pictures next time, sorry I'm slacking.

Would'ya Look At That!

When you see Luke every day you don't really notice the changes unless you look at pictures. Tonight, however, we got some of his preemie clothes out...WOW! I never would have believed it without the proof. 

Luke is now 10 pounds and some ounces. He is wearing 3 month clothes.

This is the first outfit Luke was allowed to wear at 3 pounds 8 ounces. His feet only came to his knees in this outfit. I cried that morning when I walked into the NICU and saw my little man dressed to the nines. He worked so hard to get to this point and now look at him. I would never guess how much laundry this little guy would make, but I'm happy to do it. 

This isn't Luke's first hat, but it is the same size of Luke's IU hat that he wore during the flight to Riley hospital. Like the outfit, I can't believe how much he has grown. 

This was taken right before he was loaded to the transport isolette for his big flight.

I have heard Luke known as a lot of things and miracle comes up a lot. I always knew he was special, and after looking at all we have been through, MIRACLE pretty much sums it up. 

On a quick medical update. This Thursday we will be back at Riley for a pulmonary appointment. I never did hear how his sleep study went, so hopefully we can get some answers then. We also had a meeting with or First Steps coordinator, Liz. She suggested Luke have physical therapy along with the occupational therapy he is currently getting. The PT will work with Luke to catch up to his actual age (7 months) instead of his corrected age (4 months). So this week, we will learn more about that, and how often Luke will have it available to him. We also talked more about Luke's hearing aids. I know the state of Indiana can have problems, but they are good to us now. The First Steps program is available to us due to Luke's birthweight. They cover all of Luke's hearing needs, from appointments to the hearing aids in general. It is just a weight lifted off of us at this moment. Especially since our insurance isn't real helpful at this point. 

We think that we might have finally figured out Luke's tummy issues. Up to the beginning of this week, Luke has been fussy and had almost stopped taking a bottle. Apparently the Miralax that he was given daily stopped working due to low amount of fluid being taken. So we started taking Cultrella. We have to break open the capsule and Luke has to take it with juice. It seems to work fantastic. He hasn't had any crying spells and he is back to eating 4 ounces each bottle. He is also FINALLY regular. The most he has been since we came home. 

I'm not a fan of only updating weekly, but I still hope to get more pictures up soon. 

Jordan

Medical Chaos

Sorry it has been awhile since we last updated, but it has been pretty calm around here...till today. We finally got some answers from our doctors that we have been waiting for. First let's start with pulmonary.
We saw them two weeks from yesterday. That is when Luke was taken off oxygen during the day and turned to low at night. We were ordered a pulse oximeter during that visit along with being ordered for a sleep study. We are still waiting on that pulse ox. Last Monday our home health care called to let me know they were working on things with our insurance and they would let us know when things would change. I then called them on Friday to see if things had changed. Well, they then tell me that they needed our NP's signature or something and they had faxed the paper twice and still nothing came back. So....I then go to call Riley, but they closed for the holiday till Tuesday. I woke up this morning with this on the top of my list, along with scheduling the sleep study since that was never done. Apparently the paper was signed on the 28th, but it takes 7-14 days to process. Which blows my mind, since our friends got theirs the very next day... On a good note, we might not even need it. We were scheduled for an overnight sleep study tomorrow night. So Luke and I will be traveling to Indy tomorrow afternoon. He has to be at the lab by 8pm and they will wire him up. I was told he should sleep like a baby with all of the beeps. Apparently it will bring him back to his NICU days. Hopefully we will be a little early so we can visit our night nurses if any of them are there. I am told that we will know Luke's results in a week. Realistically I should know in the morning, cause they will put oxygen on him if he gets low. Fingers crossed and prayers said it goes well....then no more oxygen!

Another phone call on my list was to the hearing doctors. Since Luke's CT scan we have never heard anything from them. We are getting dangerously close to when they wanted his hearing aids on full time. Right before they called, our First Steps coordinator called to schedule a meeting. We go through them for our special hearing aids also. She said she had never received anything either from the office. So...after finally speaking to the assistant to the doctor we are moving again. Apparently, they never received word that the CT was done and that we were going through First Steps. So we are now scheduled for a hearing aid appointment the first week of February. More balls are rolling now.

Other big news around here...Luke is sleeping in the travel crib. For the past three nights we have been swingless. Just in time for his sleep study. He does pretty well with it. Two nights ago he slept for 11 hours straight. It was crazy! He just needs his two crocheted blankets and he is ready to go. We aren't moving the swing out of our room just yet, but hopefully it is in the near future.

Also the little man is eating like a champ. We have moved from just cereal to some fruits and vegetables. He really likes it. I've been making him fresh food with my baby bullet, and it's pretty easy. You can tell he is getting more hungry and wants more food. He has upped his formula intake at times, but eating 2 servings of vegetables or fruit during his dinner. A far cry from what the developmental pediatrician crying NG tube last month. We have run into some constipation, but we will take what we get.

Hopefully we will have some great news on Thursday morning to pass on, fingers crossed.

Luke's IU overalls

Riah's  reading to Luke with Watson the Raccoon 

11 hour night

Jordan

First Real Snow

The snow outside has put me in a mood to finally update the blog. Sorry it has been a week. We had a great Thanksgiving. I hate to say it, but it was nice to have an entire day with other people here to entertain Luke. I don't think I changed one diaper after everyone got here. Not to mention, Luke slept really well that night. Maybe he snuck some turkey too.

We didn't do any black Friday shopping, however we did go get our tree. It took FOREVER for us to find the one for us. It looks good to everyone else, the jury is still out with me. I also was able to get out that evening with my mom and aunt. I was finally able to see Breaking Dawn. If you know me, you understand how big of a deal it was. This was the first time I wasn't at the midnight showing. I can say this one is the best one yet.

Saturday, Jonathin and I had a little bit of a date night. My parents bought us Jeff Dunham tickets for Christmas along with dinner out in Indy. It felt so odd being in Indy without Luke in the hospital. The show was hilarious. We didn't get home till around 2am, but Luke understood. Between taking bottles he slept till noon right along with us. He must have had a pretty exciting day with Gammy and Gampa.

This week so far has been pretty unexciting. Tomorrow, however, we are headed back to the hospital for Luke's CT scan. It is for the hearing doctors. They want to see Luke's anatomy just to check on things as we move towards the hearing aids. Hopefully this process doesn't take too long.

Hopefully tomorrow I can post some pictures and update you on how the CT goes. Sorry for the quick update.

Jordan

How Do We Continue?

Today Luke had his second hearing exam in South Bend. This time we saw the ear, nose, and throat doctor. Dr. Campbell reviewed Luke's hearing test from last week and concurred with the audiologist. Luke can hear, but won't be able to communicate correctly without the help of hearing aids. He added the wonders on how to work with Luke now in the future. The choices are sign language some and vocal, complete vocal communication, or vocal with lip reading. I think after weighing our options vocal and lip reading sounds like the best idea for us. They say his hearing will most likely decrease throughout his life, so if we start early enough it will help later on. I know that lip reading can work, that is how my brother hears a lot of the time. He too is hard of hearing from a very young age. So as of right now, that is where we are. We haven't nailed down his hearing aids as of now. We are waiting to move forward with the First Steps program. However, the doctors today think they have nailed down the cause of his hearing loss. Due to Luke's severe infection that he had during the first week of his life, the antibiotics that were used can be ototoxic. This means that they can cause hearing issues as a side effect. He received such a large amount that is the general idea of the cause of his hearing loss. However, I can say I wouldn't do anything different. The choice was save his life, or allow him to have "normal" hearing...no question on that decision.

Just a side note...I have commented on other blogs I have been following lately and I would just like to pass on some news. The Bennion family are from Montana and have been blogging about their micro preemie son since his birth over two years ago. I have been able to catch up with them the past few weeks and I am in awe of how well they have handled things. Well they have some big news...they are working towards writing a book about their life through and after Jack's NICU stay. I am so excited for them. I am also a big believer that this book would be wonderful for any NICU preemie parent. They however need some help to move the book along. If you feel interested in reading the first 3 chapters here is the link, You Don't Know Jack!

Jordan