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

One Long Update

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

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

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

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

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

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

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

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

Jordan

Look at those eyes.

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

Finally taking notice of all the bounce has to offer.

Welcome To Holland

I good friend of mind recently gave me Chicken Soup for a Mother's Soul. There is a story that hits home to me and I thought I would share it. We are currently at Riley with Luke for some check up and will update you in the next few days.

        I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
       When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some hand phrases in Italian. It's all very exciting.
       After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
      "Holland?!" you say. "What do you mean, Holland??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
      But there's been a change in the flight plan. They've landed in Holland and there you must stay.
      The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place.
      So you must go out and by new guidebooks. And you must learn and whole new language. And you will meet a whole new group of people you would never have met.
      It's just a different place. It's slower paced than Italy, less flashy that Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
      But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they have had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
       And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
       But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...and Holland

                                                                                Emily Perl Kingsley

One LONG Night

Last night was a rough one for Luke and Mommy. For some reason all day yesterday all he wanted was to be held all day. That seemed to backfire on me then last night. I would get him to sleep, but once I would put in bed he would wake up and start crying again. This went on till 1 am when I finally resorted to sleeping on the couch and him in his swing. So the three dogs made sure they had their place on the couch along with me. He slept till 5:30 am or so when his dad finally got home from work. Then he slept with his dad for a bit while I got ready for the day. I hate to say it, but I lost it last night. I am so tired from lack of sleep that I starting crying and praying for some sleep. For some reason the hard nights are when Jonathin is at work. It is so hard to catch up on sleep. When he is sleeping I am running around cleaning and getting stuff done. Also he seems to have something to do almost every day. Monday the nurse was here and weighed him in at 7 pounds 8.5 ounces and then today she was back and he weighed in at 7 pounds 12 ounces. So he is right on gaining an ounce a day. I however will be so happy once we can take him off the special formula and can put him on something for his gassiness. He gets uncomfortable some days. Next week will be 6 weeks of visits and hopefully that will be the end of the home nurses. Also yesterday we had a visit from 1st Steps. They are through the state and monitor Luke's development. Last week they were out and decided that Luke was eligible for the program due to his small birth weight. They also want to monitor his hearing. When they monitored his hearing last week they noted that Luke does not startle like he should. This leaves me a little worried, but honestly if that is all we run into I would say we are pretty blessed with our little man. So starting next week Luke will be seen by an occupational therapist twice a month for 2 hours to monitor his development. Next week is a busy week for us, so fingers crossed all of our appointments have good results.

On a side note, I have since learned that once you experience something you start to know many others that have also. Since Luke was born I have known 2 others that have had extremely premature babies. My one friend from IU's daughter that was born at 29 weeks in August is now home.  Last night a friend of my parents are now living our life. Her granddaughter was born at 2 pounds 13 ounces. If I could ask for your prayers for little Sophia and her family. You really don't know the feeling till you experience it, and I know the long road they have ahead. Thanks!

Jordan

I can't get over how much my boys are alike.

Been Too Long

Sorry devoted blog readers for such a space between blogs. Where do I even begin...Well on Monday Luke weighed in at 7 pounds .5 ounces. We won't be reweighed till tomorrow (Monday). The rest of the week was pretty standard around here. Did some shopping for the little guy, I know you are asking what more does this little guy need. Well he has finally grown out of the preemie clothes and is now in newborn. Well...he didn't have many newborn clothes, so I was able to get a few more onesies for him to hang out in at home. On Thursday night Jonathin and I loaded up Luke and all of his things for a night away for home. We had to be at Riley on Friday morning and I really didn't want to leave at 5 am on Friday. Surprisingly the night in the hotel wasn't too bad. Luke only woke up twice, so nothing too much out of the ordinary. We were supposed to have a speech and eye appointments, however the speech was rescheduled. We did have a really good eye appointment. Luke's right eye has finally finished growing to zone 3 and his left is very close to zone 3 also. We now don't have to be back for two weeks...yay! So we have 3 appointments over the 18th and 19th. It will be different to finally be there for more than one reason. The nice thing about this visit is we were able to visit Luke's favorite Aunt Mel while she was working that night. I might have been happier than Luke. I almost forgot the other big news, Luke has learned to roll over. I have yet to see him do it though. I was able to get out of the house for an afternoon Saturday. Thanks to tickets my dad was given I was able to go the Notre Dame/Air Force game. It would have been Jonathin's ticket, but he had to work. Luke had a good afternoon with my mom.  He didn't seem to mind too much. Sorry again for such a long break, hopefully I can keep up more.

Jordan

Dressed up for Riley

Relaxed for a 3 hour drive home

Such a devoted fan