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

Cold Onset

Cold season has set in here at the Molnar residence. Apparently Luke picked it up at the hospital and has taken the past few days to set in. Last night was a long one. Luke now sleeps in his Boppy pillow. I know, I know...shame on me. However, Luke needs to be propped up or he chokes and coughs most of the night. I am just happy it is just a cold and not RSV. This is already stressing me out, just imagine if it was worse. Sorry this is so short. Hopefully tomorrow I can give you more of a lowdown.

Jordan

The RSV Lowdown

Okay, I know I have talked about RSV a little bit over the past 5 months, but I figured since the season is here I would really go into detail.

The best website I have seen so far I found on another preemie mom's blog.

RSV Protection

To adults and older children RSV is seen as just a common cold. However to a preemie with already compromised lungs it can cause pneumonia, a severe cold, and can even cause death. The issue is the infection can close off an already small and swelled lung passageways.

This website breaks it down by the gestational age that Luke was born at, 26 weeks. The issues that Luke is fighting against is:
             1. Preterm birth
             2. Chronic Lung Disease; due to ventilator for over 2 months
             3. Immunodeficiency; Luke did not receive all of is antibodies from me due to his early birth.
             4. Birth within 6 months of onset of RSV

Luke will also be receiving a shot known as Synagis. It is a vaccine in a way for RSV. It will not prevent RSV, but can help. He will receive it once a month from November through April. We will also be restricting ourselves from large crowded areas. This means our own holidays. As much as we would like everyone to finally meet Luke, we know it is the best if we stay our distance. I do however, have Skype so hopefully that can let us be around more, even from our own home.

We have been advised by our pulmonologist and pediatrician on some guideline that we have decided to adapt to and ask your assistance in keeping Luke as healthy as possible. We would like to stay out of the hospital as much as possible. Also we would like to keep moving forward on removing Luke's oxygen supply, and RSV can push us backwards. So we have revamped our rules a little for the season, please don't take it personally if we tell you no, when you call to a visit.

1. Please have an up to date flu shot and a pertussis vaccination.
2. Please do not visit if you have been around a sick person within the past 2 weeks.
3. Please do not visit if you have been sick or fighting a runny nose within the past 2 weeks, snot carries RSV.
4. Wash hands as soon as you entire the house.
5. SANITIZE, SANITIZE, SANITIZE, throughout your entire visit
6. Please wear freshly cleaned clothes or bring a change of clothes.
7. Please keep your distance from Luke's face, you might not be sick but can carry germs.
8. Please no strong body wash or perfume, they leave Luke breathing heavy and sneezing.

Sorry for the strictness, but I know that months next to a hospital bed isn't fun and I'm pretty sure Luke would rather stay safe as well. Thanks!

Jordan

Moving Across the House

Slowly but surely we are working Luke across the house towards his room. I know deep down I won't let him be in there alone till he can sleep through the night, but a mom can dream. This week's goal is the play pen. It has been almost 2 months and I think Luke has only spent a couple hours total in his play pen in the living room. He has been spoiled with either us holding him or in his swing. I feel horrible, but he is  slowly figuring it out. This is slowly working him into sleeping in his travel crib in our room. He has become so accustomed to his swing in our room. I know it isn't the greatest sleeping arrangement, but I do like my sleep when I can get it. Hopefully more this week I can get him to nap in his crib. He has only been in it once and wasn't the biggest fan. Hopefully that can change.

Jordan

Look no Oxygen tube! Spitting image of his daddy.

Hoo-Hoo-Hoo Hoosiers! Just gearing up for basketball season!

Phew

Phew...what a busy few days. Let's see here, where did we leave off? Last I was on we were praying Luke's leg would start to look better with the new antibiotics. I can't say if the meds did or if the Lidocaine on his leg did most of the work. Well on Tuesday morning the surgeon came in to check on Luke at 6:30 am and we were pleased to see that his leg was ready to be drained. The Lidocaine drew all the fluid (puss) to the surface. His leg looked like a water blister. It might not sound great, but I was wonderful for Luke. The surgeon was able to relieve Luke without taking him to the OR and putting Luke under sedation. This was our biggest worry due to Luke's lung issues. I will skip the glory of the draining, but they were able to clear out 2-3 tablespoons worth of infection. Pretty much instantly Luke seemed to feel better. The antibiotics did enough the next 24 hours that we were able to head home on Wednesday afternoon. I don't know about Luke, but I was sooo happy to be in my own bed instead of a reclining chair.

I had such high hopes that Luke would be able to sleep without the swing now since he did it for 4 nights. I was however, disappointed. We are back to the goofy sleeping habits that Luke has. He won't go to sleep till late. I think he just might like late night television. His favorite must be Craig Ferguson, since we always catch that one.

Today we went back to the pediatrician for a follow up from the hospital. He was happy with how things are healing. We are still on antibiotics for the 8 days. They really can't give a reason this happened other than it was in his system from when he was very young. I just have to watch closely cause it is possible this may happen again. Oh Boy!

As RSV isolation really starts to set in I have decided I know the biggest thing that bothers me. I used to be able to go and get something when I wanted it before. Like tonight I had such an itch for a cappuccino form the gas station. Any other time I would be able to go the block down the road, but now I can only dream...haha.

Well the baby is back to being grumpy and slightly hungry. Sorry for the hurried update, just wanted to try and catch up.

Jordan

Going Home

We are going home as soon as we get everything together. More to come on the last 24 hours once we are finally unpacked at home....thank goodness!

Mama Bear

What can I say, but I'm not used to having to fight for Luke's best interest. I was spoiled with Riley apparently. Today however it was time to step up. This morning when the doctors rounded on Luke his abscess actually looked worse than when we first got to the ER. The suggestion is to drain out the area more than just the one area than they did on Saturday. The big ordeal is Luke's pain tolerance. They would like to sedate him for the drainage, however this can be a little dangerous I guess you could say. Due to Luke's chronic lung disease they want to watch things very closely. So the actual doctor on the floor isn't going to do, but a surgeon will do it in an OR. I guess it is a good thing and a bad thing. One I am not a fan or doing anything that can be dangerous due to his breathing. However, I am glad they are being precautions and doing it in and OR just in case the worse takes place. The surgeon insisted on continuing the Vancomycin for 24 hours to see if it would break down more infection. This is where I questioned things. We have been on Vanc since Saturday night and things have actually gotten worse. Why continue something that is apparently not working. After talking to 2 nurses and them calling in a doctor that was on call I finally got my way. We are trying a new drug for 2 doses to see if that will help some. It is pretty much inevitable that he will have a draining tomorrow. I guess I can't complain if it works. Just as long as we move out of the germ infested hospital. There has been the first confirmed case of RSV here this past weekend. In the words of our pediatrician, "get him out of there as soon as possible." I'm just hoping this works tomorrow.

Like I said on facebook tonight, I feel like we have asked so much from everyone the past 4 months, but if we could ask one more favor. Please pray that this works for Luke. So we can get him home and out of danger here. Also we can relieve him of the discomfort that he is going through now. I'm not a fan of being stuck at home, but I would that over this any day. Thank you all so much!

Jordan

Super Luke!

                                  
There is no question that this little boy will have a Superman themed birthday party, especially after this trip. Last night Luke did really well for what all he went through. He slept pretty well. However I did not sleep too well. They don't make hospital rooms for parents. If I could make one suggestion, couches. The reclining chairs don't cut it. Another surreal moment, watching a helicopter land right outside our window. These past 4 months are so surreal to us. It feels like a dream still.

Today Luke's doctor repacked his wound and things are starting to look a little better. It isn't as read and swollen, however it still is infected. The cultures have not grown anything, which is a good sign actually. They were most worried about MRSA originally, that's why we went with Vancomycin. However, it there is still no growth tomorrow we will switch to a new antibiotic that will be oral instead of IV. Today we started with an IV in his head from yesterday. Then half way through his morning dose his IV blew and they had to place a new one. They were thankfully able to place it in his foot. It just seems less harsh to me than his head. After much conversation they then gave Luke 5 little subq injections to break up the Vanc that was left in his head where it blew. All I keep hearing is that Vanc is so rough on veins. I hate to say it, but we know Vanc like the back of our hands. I will always blame Luke's hearing on it. Fingers crossed that we can discontinue it tomorrow morning.

For the past few months we have been watching Luke closely for a hernia. It was brought to our attention when Luke was tiny. With all of the swelling and close attention we have been monitoring it closely lately. Today the doctors ordered an ultrasound to get a definent answer. It was conclusive that he does for sure have one on the right side next to the abscess. They however are not connected according to the doctor. Now we will have to schedule a surgery at Riley to fix the hernia. They usually don't do this till a year or so. We will have the procedure done at Riley due to his preematurity, and we will once again have to stay the night....I swear hospitals have become my life. Here we were so excited to get home, and back we go to the hospital.

If we don't have any growth tomorrow we will now be here till at least Wednesday to see if the new antibiotic will work. So tomorrow I will be calling Riley and canceling all of our appointments that were scheduled for Tuesday. Even if we were discharged tomorrow, I'm not into taking Luke down there with an open sore. It is a little funny that we are trying hard to keep away from RSV and here we are in the infested hospital. Ironic really!

So hopefully we have a calm night along with some good news tomorrow. Thanks everyone for the continued prayers on this new venture.

Jordan

Not at Riley Anymore

This is not what I had planned for a nice Saturday at home. While I was getting Luke ready for a visit from my grandma I noticed a swelled up area between his groin and his thigh. I could feel some heat along with a hard area. My first instinct was...ER! I woke Jonathin up and told him where I was headed while he helped me pack everything. Deep down I knew this wasn't something small and we were headed  for a few days. I didn't tell Jonathin that, but deep down I had a feeling. My parents just happened to be in South Bend at my mom's work. I picked her up and we headed to the ER. We were so lucky that we got there when we did, there was no wait. Now don't take that as we didn't wait at all. Throughout our entire ER stay we were cooped in a tiny room for 5 hours. When the doctor finally came in, it only took a few seconds to diagnosis Luke's leg with an abscess. They explained it as bacteria that has clumped together almost like a large zit. So first he ordered blood work and then an ultrasound. Luke was a champ throughout the entire thing. As much as he has been poked he hardly made a peep during his blood draw. He wasn't as big of fan of the ultrasound as they applied pressure to his leg. Originally they were going to drain his leg in the ER, however finally they decided to just do it once they moved us up to the PICU. When they did drain his leg they didn't get as much drainage as they wanted. So now Luke is on Vancomycin, an antibiotic, every 6 hours. My thoughts on this drug go both ways. It is a great drug, however, it is thought to be the cause of his hearing loss. But, like I said before. I would rather beat an infection first. They also filled Luke's leg with medicated packing and will change it daily, of course while I am not in the room. I am just hoping that he can sleep tonight. Maybe all the excitement will have wore him out. I can just say this is a whole different world to us. I know Memorial is a great hospital, but it isn't Riley. I have gotten so accustomed to Riley, this feels like I'm cheating on Riley. We are supposed to go to Riley on Tuesday, but those appointments are up in the air as of now. Hope to have some good news to relay to you tomorrow. Thank you everyone for the prayers for our little man, hope he can beat this quick like everything else that has came along so far.

Jordan

After a long day with an IV in his head this is how Luke felt about my picture taking...

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

More Tomorrow

We have had a long couple days. Luke has to be the gassiest baby in town and it is making him miserable. Last night we didn't get to bed till around 1 am and then we were back up around 3:30 am. His little tummy has been making some fun noises and he has been making his daddy proud. So this has left one sleepy mom that is getting to a run down point. I don't know if his fussiness is a preemie thing or just a Luke thing, but WOW. I'm ready for a full night of sleep, so I'll be waiting for the next 10 years till that day gets here.
Tomorrow we go back to figure out more on Luke's hearing. We see the ear, nose, and throat doctor. He is going to look at Luke's physical ears and will sign off on the hearing aids so we can move forward with thing. Updates to come on all of this.