Sniffles

Well this warm weather has finally gotten to Luke. The night before last we started with some sniffles. Slowly they have went to more of a stuffed nose. The nose sucker has been unpacked for use with no success. The inhaler has also been unpacked for occasional use. Finally this morning the nebulizer has been unpacked. This is the worst part about packing early, you never know what you are going to need. The good thing, Luke hasn't slowed his eating pattern with the cold. And on Monday we leave for Indy for a Pulmonary appointment on Tuesday morning. That makes me feel a little at ease with his cold. However, I know I am not the only one that watches their kid like a hawk at these times.

I feel so uneasy when Luke isn't acting like his normal self. Thoughts fly through my mind: hospital stay, oxygen, rsv, apnea. I am not comfortable during these times. If Luke coughs I come running to check on him and make sure he is not choking. It is really bad in a car, I have to pull over to check on him. Then I wonder how bad do I let him get before we once again go to the ER. Now don't get the idea that he is horrible right now, he isn't. Luke just has a sniffled nose with a few clearing coughs. However the thought about how it could progress. Which hospital will I take him to? Will they understand if we want to go to Riley? Just things that are always there. We haven't had the best luck with Memorial Hospital's ER the last two times we have been there. Our new thought is to go to Goshen since they aren't as busy as Memorial and that they are IU Health and might be more open to a Riley transfer if we ever needed it. Sometimes I wish that we still had a tank of oxygen around here. I hated it when we had it, but I feel more comfortable just in case to give Luke a little help. I think I am always going to have a hard time thinking of Luke as a healthy child and not a needy preemie. Normal kids get colds, and normal kids don't need oxygen....but Luke isn't normal. I hate saying that, but right now I don't see him that way. I don't know where to draw the line. When will I feel comfortable with him sleeping all night? I have yet to sleep all night long since we have been home in September. First it was because he woke up. Now though, it is me just making sure he is breathing. Right before I fall asleep I have to get out of bed just to check once more on him. Then, because he is still in our room, I turn the TV down and listen to him breath. If I don't hear anything I have to jump up and put my hand on his chest. Once I'm finally comfortable then I can go to sleep, just to wake up again around 3am to listen and feel just to make sure. I even stare at him when he is asleep in the living room in his swing. I am always checking to see if his eyes look blue around them. There is always thoughts in the back of my head about what I would do if he wasn't breathing. How would I react? I wish I could calm my mind, but I have a feeling I will always be like this no matter how old he gets....sorry Luke, you have a hovering mother.

I pretty much wrote this blog in my head a couple hours ago as I lay in bed listening to him breath, wondering if I am the only weirdo out there. I hope I don't sound like a complete nut.

First 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

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

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!

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...

A Little Favor

The end of the week held a little excitement for Luke. On Thursday he had his first visit from his occupational therapist, Laura. Can I just say this....I love her! She is a sweet English mother from Ft. Wayne. I'm pretty sure I am not the only one that feels this way. Luke kept his eyes on her the whole time and never made a whine. She moved his legs around and monitored his strength in his neck and limbs. Luke really enjoyed her mirror too. What can I say, he likes looking at that little man looking back at him. Laura will be back next Friday for another visit.
Last night Jonathin and I were able to go out to dinner and do some shopping for who else, the Lukeman. It was nice to go out to dinner somewhere I haven't been since a month before Luke was born. We ventured to Barnes and Noble...my favorite. Before we went I made a nice list of books that we should get him. Jonathin had other ideas. I was patiently looking at books and here comes Jonathin with a bunch of Berenstain Bears books. Don't get me wrong, I like those books...but dang. Needless to say we came out with 8 new books to read to Luke to help with his hearing. I also came out with a book. I had been reading another blog and she mentioned a book she had read. It is by a mother that was given the news that her child would not be viable once born. She and her husband were given the option if to carry the baby as long as they could or terminate the pregnancy. It is called I Will Carry You. I have yet to start it, but I have a idea that it will be a tearful read.
I would also like to pass on a nice thing Jonathin and I saw while at the University Park Mall right outside of Barnes and Noble. Right next to the play ground there is a isolette with preemie clothing in from Memorial Hospital, Luke's birth hospital. People are able to donate money into the isolette to go towards the NICU at the hospital. It is so surreal to know that represents and large part of our life. Needless to say, we emptied out all of our change and cash into that isolette. I hate to say it, but no one understands it till you go through it. So if I could ask a favor. If you are in the area, please throw your extra change in that isolette. It might not be where we lived for 3 months,  however they are the ones that took care of Luke during the most important week of his little life...Thanks!

Jordan

The isolette at the mall.

Wore out after therapy

Daddy trying to teach Luke how to sleep all day.

Sore Little Luke Man!

My eyes have been opened lately to all that I can do with this blog. My new found love is other preemie moms' blogs. It is so astounding to find out that you are not the only one going through this new lifestyle. I hope that I can move this blog to more of a picture based blog with updates of our family as a whole with Luke. We shall see how that goes, but for right now it is all about our little man.
Today was a rough one for the little guy. He started his morning at his pediatrician's office. Luke weighed in at 7 pounds and 15 ounces. You might say, the number sounds familiar. It is true we were near this place a week ago, but then we spend those tiresome days at Riley and lost 4 ounces. So I am happy to say we have gained our weight back. We are also 20 inches long. Dr. Durham showed us Luke's growth on a chart and he looks great, even though he no where near other children his corrected age. Hopefully with the extra calories, we won't be too far behind.
Luke then had to get 3 booster vaccines along with an oral vaccine. This was the first time this little boy has ever shed a tear. Through everything he has been through and the constant poking, today the tears finally came. He was not through however after that visit. We then had to go to Memorial Hospital for Luke's manhood surgery. It was very surreal walking right past the NICU doors and the hallway where Luke was delivered. Here, originally this was to be his growing place for months before moving to Riley. It was odd to say the least. I didn't feel like we fit in, due to choosing to stay at Riley instead of traveling back to Memorial.
Luke's outpatient surgery was on the pediatric ICU floor. It was an eye opener that if Luke did become sick during this RSV season, this is where we would be for that duration. Just a side note: a child has already been tested for RSV in our area. It came back negative, but it is that time for sure. We were told that Luke was a real champ for his circumcision this afternoon. For obvious reasons, Jonathin and I chose to leave the room.
So tonight as I write this update, Luke is swinging in his swing all bundled up after his traumatic day. I hope that he sleeps well for me. He seems to stay awake nights that I am alone with him, but sleeps all night (last night) when there is two of us here. I swear the two boys do it on purpose to me. Tomorrow hopefully Luke will feel up to it, because we start his occupational therapy. I know what you are thinking, really, occupational therapy... Well this isn't the first time he has been seen by a therapist. Laura, his therapist will come for an hour twice a month and work with his movements. We want to make sure that he has strength in his limbs and easy flowing movement. It guess it is not something that I have worried about before. However, I have seen in many other preemies that this can be an issue as they favor one side or another. So hopefully things go smoothly.
Just an added tidbit. My mind has been racing with all I can do with Luke's story now and in the future. Like I said earlier, I hope to be able to document more with pictures as Luke experiences life and grows. I hope to also put together a different kind of baby book. I mean let's be honest, there is no "normal" book that can document his past 4 months. I hope to take all of the pictures so far, along with all the cards, letters, emails, and everything else and place it in a scrapbook sort of thing. I hope then later he can see what all he meant to people and how everyone prayed for him.
I am also struggling with my thoughts on schooling as of right now. I know that I need to go back and finish what I started before Luke came along. I am just weighing out how much I can do right now. I have the option of being done by May, which would be great. However, that would mean driving to Gary some 4 times a week and being gone from 5am to 6-7pm each night. Let's be honest here, is that possible. I know we have a great support system, but I don't know if I could mentally and physically do that while trying to study and give Luke the best care possible. Or I could finish by August by slowing things down. My mind still wanders to RSV season that is through May and maybe picking up something while at the hospitals for clinicals. This is just my mind going 100 miles a minute right now. I want the best for Luke and our family. How to do it all?

This blog kind of took off on me more then Luke, sorry about that. Just how my mind works when it won't slow down a bit. Just imagine how things will be come February around 4 months into RSV isolation. Hopefully tomorrow I can touch more on that, and what all we have decided to stick with for the season.

Thanks, for listening to me ramble.
Jordan

Passed out with the dog he received from a group that donates to the hospital. 

Completely out of it after his day