Christmas Collection

Luke made out like a bandit this Christmas. We had 3 Christmas' this year. Luke was able to make it to two. It was so nice to be able to see everyone this year. Hopefully next year the little man can go meet the rest of his family at the Watson side's Christmas. Luke received lots of clothes, some toys, books, and many other things including his own Riley red wagon. For the time being Luke will only get to ride in it in our basement, but watch out this summer. He also got his high chair from my parents. I think he likes that almost the best. It allows him to sit up high and see what is all going on. Not to mention it helps us now that we are feeding him real food twice a day. My mom got us a Baby Bullet, so just this morning I made our first batch of bananas and sweet potatoes. He likes bananas in his cereal, and tonight we shall try the sweet potatoes. Jonathin went back to work last night for the first time in almost 2 weeks. It was like things were back to normal for Luke and I. It was night with Jonathin being here all the time, but it kind of threw off our schedule a little. I through in a few pictures of the past few days for everyone, I am sorry this is kind of short. I am currently on the phone with insurance over our Synagis shot....yay! Let me tell you, this little baby makes you grow up real quick and take care of stuff you know your parents usually take care of.

Yummy cereal and bananas in his new high chair.

Luke's new wagon with a side of Vader cat

Luke's new giraffe hat from Uncle Calvin

Finally sporting his Superman shirt that Denise bought him when he was 3 pounds!

Jordan

Merry Christmas!

Since Monday, Luke has been wonderful without his oxygen during the day. We still don't have a pulse ox at home so we don't know exactly how his numbers are, but he looks comfortable. Tonight Luke got a visit from Santa since he couldn't go see him. We just thought we would pass some pictures along and to wish everyone a Merry Christmas!

Jordan, Jonathin, and Luke

Cordless...during the day

Long story short...NO MORE OXYGEN DURING THE DAY!  Starting tomorrow morning, Luke will be completely free of any tubes or wires during the day. It might not seem like much, but wow the freedom that is in store. He will still have to wear his oxygen at night and when he is in the car, but not when we are awake and around him. On occasion we will have to spot check him with a pulse oximeter, but his NP was pretty happy with the little man. He also decided to perform today unlike Thursday. He was all about lifting his head to look at us when she asked him to. He also did well eating while we were away and did well in the car. Hopefully things will keep this way since we are back home. We are scheduled to see the pulmonary department at the end of January. Before that appointment we will have a sleep study done. Luke will have to spend the night and one of us will stay with him while the other spends the night in a sleeping room. That will be down here soon. Also, as soon as we are done with oxygen, Luke can have his hernia surgery. It will be nice to cross another thing off our list. So, right now we are relaxing after being gone for nearly 9 hours. I've thrown in a picture just to brighten your day. Luke's Great Aunt Pam crocheted him some cowboy boots and we decided tonight was the day to break them in once we got home.

Jordan

Cereal Testing

After Luke was told he might have to go back on NG feeds we are determined to prove the doctor wrong. Today we started working with a spoon. I can't say it went fantastic, but he gave it a good try. I am ecstatic that Luke actually opened his mouth for the spoon. This is huge to me. All I have heard is how preemies, that were on ventilators, can have oral aversion. He however did well with this originally when we moved to the bottle. I think there was more cereal on his face than in his mouth, but hopefully we can work on it more daily.

Also, after being told that Luke was weak and couldn't hold his head up that is all we have been working on. He has been blowing it out of the water. If we are holding him up, his is looking all around. Hoping that maybe by the end of the year he can sit in his bumbo.

Tomorrow we go back to Riley for a pulmonary visit. Fingers crossed that things will go well. I am 99% sure we will get turned down to .25 liters, however a bigger turn would make me jump for joy. I am just hoping for a good visit and that Luke behaves. We aren't telling him where we are going tomorrow. Maybe we can catch him in with surprise. The good thing is it is only a day trip and we will be back tomorrow night.

Hope for good news!

Jordan

Don't Treat Us Like Failures

I know your wondering about the title, but let me start at the beginning. Today we FINALLY had our first appointment with developmental pediatrician. However, our day started yesterday actually. Yesterday morning we went to our regular pediatrician for Luke's 6 month shots. They went pretty well. The big news was Luke's growth. As of yesterday Luke is 9 pounds 14 ounces and 22 1/4 inches long. He is sooo close to 10 pounds. After the little man's shots were came home to pack for another trip to Riley. It seems like forever since we were there. When we left Luke slept most of the way to Indy. We stayed in a hotel over night since our appointment was at 9am. To put it lightly, Luke doesn't travel well. Sure, he does great in the car, however everything else not so much. To cut to the chase, we were up all night. Every time Luke would fall asleep it would only last a short time, then back to crying we went. He also doesn't eat well. We were lucky to get a feeding in before we left for the hospital. 

At our appointment, I was less than happy when we left. To begin with, the doctor had no idea about Luke. I understand that he sees hundreds of kids, but if you are coming in to talk to a parent at least read the chart. He thought Luke was born in July and came home in August....HELLO! That is how it started. Luke is already uncomfortable and this guy just kept going. Luke's legs are still sore from all of his shots yesterday and this guy is bicycling his legs so Luke is crying so hard that he is holding his breathe. Then he just kept going. He wanted to see him eat. So instead of waiting for Luke to settle down he tried shoving the bottle in his mouth, leaving Luke to choke and cough. This then leads the doctor to just to the conclusion that Luke needs thickening and maybe back to NG tube!!!! What the heck! He said that because Luke was fighting the bottle it wasn't because he wasn't hungry, it was because he chokes regularly! Isn't it funny that speech passed him with his swallow test and he does fantastic at home without coughing or choking. I just sat there and stewed in anger. Jonathin thinks I am getting worked up over nothing. However, I feel like he attacked me and Luke that we are failing. He wasn't too excited for what Luke has overcame and accomplished. I thought the first 6 months were hard, but now I feel like we have a hard couple years a head of us. I didn't go into a lot of detail from today, but I am steaming still. I feel like we were attacked.

So now today we are home and Luke is back to his normal self. Once we put him in his carrier to come home he relaxes and is back to his old self. It is so funny. We get home and he eats all of his food, pooped, and got a bath to get off the hospital germs. He is comfortable and so are we. Hopefully we have better luck on Monday with pulmonary. 

Here are a few pictures that my cousin Bryan ( Bryan Chris Photography ) took of Luke at 5 months. He is too cute if you ask me!

Luke with his cousins Riah, Brenden, and Quin. You would never know Quin is 3 weeks younger than Luke.

Luke looks enthused in his spiffy outfit

Happy 6th Months Superman!

6 months ago today at 9:16 am our life was blessed with a handsome little man. What started as a normal pregnancy took an unexpected turn, however I believe God only gives you things you can handle. What started as a 1 pound 1 ounce miracle is now a bouncing 9 pound 5 ounce baby as of 2 weeks ago. He has slowly moved from newborn clothes to 0-3 months. They are still a little big, but otherwise he is a little cramped. He has begun to hold his head up on occasion and hopefully by Christmas he can be more steady. More and more Luke is noticing things. He is more alert and is taking in the world more. I know this Christmas isn't going to be too exciting for him, but I'm excited for our first Christmas with him.

This week we will finally be going back to Riley for the first time in 2 months. We should have went while we were in the hospital for Luke's abscess. Thursday we will FINALLY see the developmental pediatrician. Hopefully they will put us in the right direction. Our pediatrician here doesn't want to change anything. Hopefully we can start moving towards baby food. I know it won't be right away, but hopefully he can take more cereal. Also a week from today we go back to Riley to see the Pulmonologist. If we would have stayed on schedule we would be working down to oxygen only at night and in the car. However, I'm pretty sure we will only be going to .25 liter all the time. I will be so ready to finally be off the oxygen. He is breaking out all the time from his patches on his face. We are also fighting either an extremely dry head, or cradle cap. He can't decide. 

Hopefully today will be uneventful. He has already scratched himself with those daggers of fingernails across his forehead. He now resembles Harry Potter. Hopefully that is all that goes on. I swear I cut or file his nails every couple days. 

We took a picture of Luke with one of his many giraffes to measure him up. I wish we would have started this earlier. Then I put the giraffe by his giraffe in his room where hopefully we can measure him as he grows up. And yes we know his giraffe only has 3 legs, it matches an alphabet picture in his room.

Jordan

Mommy's Sick Day

Well the dreaded stomach flu has hit our house, and thank goodness it has not got to Luke. I am the unlucky victim. I woke up in the middle of the night and then banished myself from any where near Luke. Jonathin had to take care of night and morning duty, while I slept on the couch. Jonathin has to work tonight which means he sleeps throughout the day today to stay awake all night long. So I can not thank my mom enough. She took the day off from work and came and rescued Luke. I'm not big on Luke leaving the house, however it was the only option. There is no way I can keep an immune deficiency child around me. So Since 8am this morning we have been Lukeless and it is not just a little weird...it is A LOT weird. I keep thinking I hear him throughout the house. I keep looking in his playpen. The dogs even seem a little funny. This is not how I wanted a night without interruption. I just hope I can get sleep and this can leave my system before Luke comes home tomorrow. The nice thing is Mom has tomorrow off too, so if we need to he can stay till Friday. Slowly I am starting to feel a little better, however I swear there is still something living inside of my by the sounds that are going on. I have never used Lysol and Clorox wipes so much. Everything I touch gets a spray or wipe. Praying this goes fast. I hope to post some pictures tomorrow, no not of sick me, but of Luke living it up at Gammy's.

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

Picture Catch Up

Luke's CT scan went really well yesterday, he slept through the whole 5 minutes. We finally are getting our Synagis shot today for RSV...fingers crossed he takes it well. Here are some pictures from the past week to catch you up.

Still a little sick on Turkey Day

No worries, Dad and Zbi slept right along with Luke

The Great Tree

In awe of the tree

Putting the pickle on the tree, the last ornament

If I haven't talked about it lately, Luke is all of a sudden a mover and a shaker and will hardly hold still. Hopefully I can update on that more later tonight.

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

If you stay updated with my Facebook, you would see that a new tradition started here this past week. The Elf on the Shelf came to live with us. So I thought I would pass on a few of his clever hiding places while he monitors Luke for Santa. 

Meet Elvis!

He knows he can't play with Luke's real dogs

Emergency Room = Thumbs Down

Okay let me just start by saying that I am venting a lot in this post before anyone thinks I am going crazy. Last night Luke slept pretty good in his swing. He didn't get cranky till around 6am after Jonathin was home. He went into a lot of crying and hacking. This led to him breathing really hard to catch his breath. He also was retracting when he breathed. This is when he is sucking in his breath so strong that it sucks in right under his rib cage. We were always taught to watch for this at Riley as a sign as respiratory distress. So I decided to turn up his oxygen to where we originally started 2 months ago, just to give him a little help.

I figured that it would be best to call his pediatrician just to give them an update since our appointment on Friday. After leaving a message the nurse called me back. She said that Dr. Durham wasn't there yet, but the other doctors said we should take him to the emergency room because he is such a special case. So around 9am we headed to South Bend once again. We were able to get right in, surprising I know. The doctor seemed nice and he ordered a X-ray. My main worry was pneumonia and in the back of my mind, RSV. I didn't think that was the case, but a preemie mom's mind wanders. After 3 hours or so the doctor came back in to explain the situation. The X-ray didn't really worry him at all. His exact words were, "If he was a term baby I would send him home now. But since he is an extreme preemie we would like to admit him for a couple hours to monitor him." Gotta love the special circumstances preemies get. However he explained there really wasn't anything they could do for Luke. Not a medicine, not a breathing treatment, just sit and watch him.

The doctor then stepped out and we were left to ourselves for another 2 hours to discuss things. The more Jonathin and I sat there the more we decided against their advice. Luke had calmed down and even the doctor said he looked fine when he was calm. I figured I could watch him as much as the nurses could. Let me explain....the nurses never checked on us once in the 5 hours we were in the ER. Also when we would push the nurse button it would alarm for 8-10 minutes before someone would remotely notice. Usually someone would come in and turn it off, then retreat for our nurse without even saying a word to us. Jonathin joked, how could this be an ER. At this point I was getting upset. Once we were able to find our nurse we told her we decided to take Luke home. I don't think she liked us taking a stand. So for the next hour or so we got the run around about the doctor wanting to talk to us again and how the peds department thought it would be best for us to go upstairs. No one would listen to us.

Finally the doctor came in and turned into a jerk. He pretty much told Jonathin and I we were idiots. His exact words were..."Are you prepared to go home and your son to stop breathing?" Okay, this really pushed me off the deep end. I then explained to him that for 5 months we were with Luke and know him front to back, and we have an apnea monitor at home also. He got snippy with us, because I did not share all of this knowledge in the first place. No offense, but he knew Luke was a micro preemie and that we spend over 3 months in the hospital with him. It was like he thought we were so naive, and didn't know anything. At this point I couldn't get out of there sooner. He said that he only let idiots sign an AMA (Against Medical Advise), however now we don't sound like idiots so he would discharge. I couldn't get Luke in his car seat quicker. I understand that they get parents that are so clueless sometimes, but is that how we really looked. I mean we came in there explaining the situation and speaking like we at least had some since. I was just really put off by the situation.

All I could say to Jonathin is next time we have an emergency, we will drive to Riley. How sad is that, we would drive over 3 hours away. I tried to explain to the doctor that I would rather be home watching Luke instead of sitting in the germ infested Disneyland called the Peds Floor. I'm going over the immune deficiency that Luke is fighting, and it is like talking to a wall.

So we were finally home around 3pm this afternoon and we all then took a nap. I think we all needed it after our day. Knock on wood, Luke hasn't coughed since we have been home and is looking comfortable in his Daddy's arms as they play the Xbox. Hopefully we can have a comfortable day tomorrow with no excitement. I mean nothing against Memorial Hospital, but I was not impressed today. Hope we can stay hospital free for awhile for now.

Jordan

Sick Week 2011 Continues

Well this cold is still going strong at our house. It has slowly moved from Luke to Jonathin and I. However he has the worse of it. The sniffles turn into coughing throughout the night. I swear it sounds like he has been smoking a pack a day for 10 years when he really gets going. I learned a very valuable lesson last night. If you have been keeping up with Luke's sleeping habits you know that he "is one" with his swing. Luke refuses to sleep before Craig Ferguson comes on. I however, must sleep before 12:30am. So into his swing he goes around 11PM during the local news. He swings wide eyed till finally falling asleep. I however, am out as soon as my head hits the pillow. Well, the past few nights Luke has been sleeping without the swing on his Boppy pillow. Last night we returned to the swing for the evening. Luke was out like a light when I woke up at 2am and for some reason in my sleep deprived mind I thought it would be better to move him out of the swing. Here me now....NEVER MOVE A HAPPY BABY! For the next 3 hours we had crying, coughing, sniffling, and screaming. It turned into one long night. So as I type this now, Luke is asleep in his swing, hopefully for a good couple hours.

I'm waiting for the day I go to the swing and push the button and it doesn't move! It has been the best investment that we have made for Luke. Those NICU nurses and other moms in Module 1 at Riley weren't kidding. Sooner or later I know the swing will have swung it's last swing. However, Jonathin has already informed me that we will buy a new swing less than 2 hours after this one breaks...hahaha!

So being a nursing student and after being surrounded by all this medicine the past 5 months I can't get over that there is nothing for Luke's cold. I laid in bed last night during the coughing mentally going through my notes. The only things we can do for him is saline drops to help clear some stuffiness, the dreaded nose sucker, and his vaporizer. I have a feeling that his new friend is his Ellie the Elephant vaporizer. I'm happy if it is actually doing something for him, however I hate the mess that it makes. After just one night, the white dusting is already getting to me. It isn't like I can clean the bedroom all the time. Especially with Jonathin sleeping during the day, but watch me try.

I'm just throwing this out there to the other preemie mom's....did your child have problems with gas and ieregularity. I am so perturbed with this little man. I mean some days we are going all the time when he passes gas just a little at a time. Then other times we go a couple days and are in complete pain with constant gas. His developmentalist has him taking Miralax daily in a bottle, however he wasn't taking it while on his antibiotics. His body didn't play well with his medication. Originally, we thought it was the Similac Neosure that he is on. Especially since we add extra calories worth of formula, however now I just think it is him. I hear it can be that his prematurity is still the problem, but I'm praying for some regularity for his sake.

Tomorrow starts the return of studying for school. I will return to school in January. For 8 weeks I will be going to Gary twice a week for a little over 2 hours. However it will be a 2 hour drive there and another 2 hours home. I don't know what day, but there is definitely going to be some schedule juggling going on here. Then another 8 weeks after that, I will be keeping this same schedule, but adding 2 more days of leaving at 5am and getting home around 7pm. I worst part is the fact that I have no other option. I will lose my credits if I don't continue now. I also have been put off by the South Bend campus on trying to transfer. SOOO I'm left to finish out in Gary. The one good thing, I will done with school before Luke's first birthday. Then finally I can get into a clinic or hospital and work with the world that has surrounded my life over the past 5 months. When I started the nursing school process 2 years ago, I figured I would go into labor and delivery or pediatrics. Now there is no other place I will go. I feel like there is so much information and piece of mind I can share with others in the same place we have been. As much as those have helped the past few months, you really don't understand things till you yourself have lived it. I hope once everything has calmed down and school is finally over we can get move involved in the preemie community.

Jonathin and I treated ourselves to a new camera for our Christmas to help chronical Luke's growth. Don't get us wrong, the cell phones were great, but now the pictures might look a little better. So I added a few testers from this week as I "break" it in. The dogs thought they needed a little facetime also.

Jordan

Nap time on the Boppy

Snug as a Bug

Luke and his sound machine giraffe

A scheduled afternoon nap for Zbi

Lola Bug

Only a face a dad could love, and sometimes a mom