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.

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

Technology week

Wow, it has been a long week. Luke had his CT scan on Wednesday for his hearing aids. It went pretty well I would say. Luke wasn't happy to begin with, but then he fell asleep and make it all the way through the scan asleep. It only took 5 minutes or so. I really don't know exactly why we had it done. It was brought up after our last hearing appointment and had been pushed back since we were admitted to the hospital last month. I can only think that we did it just to check the anatomy of Luke's ears. However, the techs kept asking if he had surgery on his ears already. I don't know what that means exactly. I guess it makes me wonder if there is more going on than just antibiotics.

Then on Thursday we were finally able to get our RSV prevention vaccine, Synagis. It is known to be painful, however Luke took it like a champ. He was more into the bottle right afterwards. The next shot can't be given for another 25 days, so we will be back right after Christmas for another dose. He was approved by the insurance company for 5 total shots. They are $2800 a piece...eeek, I know! I just hope they work their magic. Hopefully things will work out for the best and we will be approved for them again next year. It all depends on how Luke's health is beforehand.

Like I said on the last post, Luke has been way more active. He is awake more and stronger. He has knocked off glasses this week and is all over the place. I keep trying to work with him more on the tummy mat, but he isn't too happy about it. There is so much I want/need to work with him on. His therapist said this week to start with link rings and different textures. I feel like there is so much I want to do, but not enough time in the day. I think that is my biggest worry when I start up with school again. I feel like I am going to let him down. I am going to have to do so much to pass my classes after being away for so long. It was tough to begin with and now it will be even more work. I just hope that I can give him all the time I can and still be able to work with him. These are my worries now.

Now to something that has taken over my life...technology! It started with the blog and I have been a Facebooker since 2004. However, the past few days I have started Tweeting and today I started Pinterest. Don't ask me why I started Tweeting. It isn't like we have an exciting life. I think it is just something else to use to get out Luke's story or what goes on in our life. Then there is Pinterest! I was bullied into it by a good friend. After 3 hours tonight, I have found 196 pins so far tonight. It is an awesome site, however I'm pretty sure it is just another thing to take time. I highly recommend it for ideas for everything, food, crafts, anything pretty much. I have found some great ideas so far for Luke as he grows. You can follow me on there also.

That pretty much sums up tonight. Luke is a little restless tonight, hopefully he will get some sleep along with myself.

You can follow me on Twitter and Pinterest with the name of Suprmansmom.

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

One Long Update

Wow...I have so much to say since the last update and am a little frustrated I have let it go this long. I'll start from the beginning. Two Saturdays ago Jonathin's mom and sister, Julea, held a baby shower for Luke. It was nice to finally meet some one those that had been keeping up with Luke over the past 4 months. Luke received a lot of great gifts. All together it was a good day.

That following Monday Luke had visit from his home nurse. I have learned that is our security blanket for Luke's weight. I think with my half finished schooling I could know more than she does. Also it helps that I lived in the NICU for 98 days. Well Luke was up to 7 pounds and 14oz! So close to 8 pounds.  That night Luke and I packed up and headed for Indy for a couple days of hotel isolation. Jonathin couldn't make this trip due to work. So my dad was kind enough to let us hitch a ride with him. I can't say how lucky we are that his job is based out of Indy.

On Tuesday Luke had an appointment with his pulmonary specialist. She measured him at 19 1/4 inches....so we have grown over an inch in a month. Once we were in the room she turned down Luke's oxygen to .5 liters and continued with his exam. Once she was done listening to his lungs and monitoring him she placed a pesky pulse ox on his foot. He passed with flying colors. He was still at 100%! So now we are turned down to .5 liters on oxygen. I can't believe how far we have come when he was on the ventilator. Here we joked he was going to prom with the vent and now we have this tiny tank. Don't get me wrong the tank is a pain to travel, but it sure is better than a ventilator. After his exam, Luke and I were left with the rest of the day at the hotel. We mostly spent it watching television and napping. It was kind of nice though. Usually once Luke is sleeping I am left to clean up the house. This time I was able to nap along with him. It was a bonding experience I would say.

Wednesday was a busy day for our little man and you could tell it got to him also. I have vowed to never go alone again to Riley for the day. First we saw speech therapist. I know what you are thinking..."why speech?" Well she is monitor for his bottle feedings. I had to be honest with her and let her know we had stopped tube feeding a week or so after coming home. Luke just didn't seem to tolerate it as well as he had in the hospital. What can I say, he loved his bottle. Of course once we arrived he didn't want to perform. However, she wanted to try a swallow test to monitor if he aspirated on this formula. To cut to the chase, he does a tiny bit when he begins to get tired. To help we are now to add cereal to his formula. He isn't the biggest fan as of right now. We also had an eye exam while we were there. Luke's eyes have graduated. They are all the way to stage 3 and we don't have to go back till February. They will then check him for glasses at this visit. I wouldn't put it past him, due to everyone around him wears glasses. It was a very long day for Luke and I. He was extra fussy and his monitor kept going off. The patches are worthless to say the least. That reminds me though, he can take the monitor off during the day. He only has to wear it when we aren't right with him, when he is sleeping, and when we are in the car....yahoo! Luke seemed to be happy to be home that night. The next day we just hung out and tried to get back in our swing of things.

On Friday the home nurse came for the last time. That is right, we have graduated home care. However, Luke did lose 4 oz since Monday. I think it was due to the changes that took place this week. He wasn't a great eater in Indy. Still they graduated us!

The other big topic of that last week was RSV. Here is a great page that I got from a blog I follow. RSV INFORMATION! Our pulmonary team have placed us on quarintine. From this point forward Luke won't be leaving the house expect for doctor appointments. We will have to limit visitors also. We just ask that through our first winter please respect or wishes.  We ask that if you are feeling yucky or have been around someone that is sick that you do not visit. Also please understand our thoughts on the issue. We are very aware of Luke's lung issues and wish to not to relive the ICU experience. Thank you in advance. This will be a very different lifestyle to Jonathin and I due to the fact that we are used to going out to eat a lot. I guess it is time to brush off the little cooking skills that I have. I will dive into this issue more again soon....maybe.

Okay now lets get to the big news from today. Luke had his important hearing screening this morning. This has weighed heavy on us since he didn't pass his first screening right before we left Riley. He has been seen by First Steps earlier last week and they said he wasn't startling like he should be. Also we had noticed that he didn't really notice the dogs barking. Well our suspicions were correct. After 3 long hours and 3 tests it was confirmed that Luke has hearing loss. Not nearly as much as I worried about originally. Luke has mild to moderate hearing loss. He can hear bass, but can not hear the high pitch sounds. At first I cried, but I am thankful it isn't worse. Luke will be seeing another doctor next week, then we will start the process to get hearing aids. They hope to have them on by 6 months of age. They tell us he will not have any speech problems if we have them by then. We are now to speak to him within 3 feet of him so he can get as clear of sounds as possible. We had reading time today and it was so nice to have the three of us together for that. I don't say it enough, but when Jonathin is home, things seem less crazy. So please keep Luke in your prayers as we move towards this new adventure. Hopefully it will all work out for the best. Jonathin had to make sure the hearing aids won't prevent Luke's Notre Dame football career. And after this past weekend, they need all the help they can get.

Just one quick thing after this long post. I have become so obsessed with other preemie parent's blogs. I can't believe it has taken this long to read them. They make everything a little easier. I hope, hope, hope to finally get on a regular schedule again. Also they have me interested in things to keep RSV season a little more bearable. They also show me that I can blog about myself and what we as a family are doing. I love saying that...family. Slowly the feeling is setting in, 4 months later.

Jordan

Look at those eyes.

Sorry it is sideways. Luke's hearing should be in the far left sections and it is in the 6th and 7th section to the right. At least he isn't all the way to the right. That was our original worry.

Finally taking notice of all the bounce has to offer.