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.

Whoa It's Been Awhile

I can't believe it has been over a week since I updated everyone. Luke has been doing really well with his food. He has only showed dislike to green beans. He takes one bite of them, and out they come. He started doing the same with peaches, but now he likes them in his oatmeal. I think his oatmeal is his favorite food now. Which is funny to me, cause it was a big dislike when we first started. I am just happy that he likes spoons and food. It was a worry to me, because preemies are have a great risk of oral aversion. My new worry is that he doesn't eat a lot of bottles. He will eat 2 servings of real food and still want more, but won't take more than 4 ounces at a time. He also enjoys a good morning conversation over oatmeal. He is just a little chatterbox at 7 am in the morning. Then after he eats a big bowl of oatmeal we take a small nap.

This week marked Luke's 7 month birthday. He has officially moved to 3 month clothes. Some fit great, and some are little big, but he is out of newborn clothing. We went to the doctors on Thursday for Luke's 2nd Synagis shot to help prevent RSV. He weighed in at 10 pounds 10 ounces. Slowly but surely we are getting there. I have yet to hear from Riley on Luke's sleep study. They said they would call in 7-10 days, but I wonder if we won't hear anything till we go back on the 26th.

This week, I started school again. It was a long Friday and old to get out of the house for so long. Not to mention I had to drive to Gary at 7am in the snow. I usually have 45 minutes of extra time, but I barely made it to school with 6 minutes to spare. Then when I walked in, I got a bunch of stares. Since I had to postpone school, I am now with a whole new group of people. I miss my girls, but I only have to get through 16 weeks.

Hopefully it won't take so long for me to update again. Sorry this isn't in depth, hopefully I can get to the computer more than once a week.

Jordan

Right after Luke's Synagis shot

Ask for a smile and this is what I get...

How we spend our afternoons, naps and studying

Happy boy after his cereal

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

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

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

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