One Long Day

Let me just sum up the beginning of the week before I start on yesterday. RAIN! That is about it. Luke and I have been hanging out inside and watching all the rain. Also we have still been fighting the poop. Luke has yet to poop on his own since we got home. The only way we could poop is giving him a glycerin suppository. We can't give these often, but after 5 days we do. So we called down to Riley and they told us to give him either apple juice or prune juice. We started with apple juice, but he didn't like that and it didn't do anything for him. So on Wednesday we gave him prune juice. The only thing we accomplished was a grumbly stomach and skid marks in his diapers. So I was planning on giving him more on Thursday once we got home from Riley. So lets get to Thursday. We had another opthamology appointment at 2PM at Riley. Jonathin had to work so my mom went with me, that way someone was in the backseat with him at all times. Our day started out a little wired due to the fact I started to get a sty in one of my eyes. It had swollen so much it looked like someone had punched me. So we stopped by my Aunt Pam's work to get some drops on our way out of town. Once we were back on our way we ran into another problem. A GIANT rock hit my windshield and took out a huge chunk along with a spider crack has started. The good thing it isn't in my line of vision, but it will need to be fixed ASAP. The drive the rest of the way was uneventful. We stopped in Kokomo so we could change a diaper and feed him on the way. I don't like the feeding tube at all that we have to tape to his face, however I will miss the convenience. I mean we just dump his food in and he his fed. He doesn't even have to be awake. When we arrived at the hospital we were walking through the garage and all of a sudden Luke's heart monitor went off in a high pitched squeal. Come to find out my mom had either stepped on or ran over the cord from the monitor and ripped the cord apart. So Luke was left without a monitor for the afternoon.  My only idea was to visit the NICU and ask them what to do, but first we had to go to his appointment. Luke has to have a series of 4 drops in his eyes over 45 minutes before they can finally look at his eyes. The results weren't really any different from last week. His vessels have stopped at a ridge in his eye. They are just monitoring that his vessels from over the ridge and keep going instead of going up. So we have to go back again next week. The only good thing is we already had to be there next week for a speech therapy appointment. The bad thing is the appointment is at 9am so we might have to go down the night before. At least we might be able to visit our night nurses. So after that appointment we back to the NICU to visit and to try and figure out the cord. Luckily they knew who to get a hold of for me and after 45 minutes we were rewired and ready to go. The drive home was LONG to say the least. We ran into rain most of the way and had to stop 3 times for diaper changes and feedings. Also we stopped at Jonathin's work so he could show off his son from a distance. We also received a phone call on the way home from my Aunt Pam. Apparently Luke got an early Christmas present that will be delivered on Saturday. Luke and his "little" cousin Quin are now the proud owners of 2 miniature ponies. Luke's is the smaller of the two, and her name is B.J. and Quin's name is Emma. Riah, Quin's sister is going to take care of them till the babies are big enough. We will be sure to post pictures this weekend of the ponies. Luke is now asking for cowboy boots for Christmas...haha. Once we finally got home I let Luke just lay on my bed all spread out. He had been in the car seat most of the day and needed to stretch out. He was so content while I unpacked and picked up the house from being gone all day. A little over an hour later I went to get him ready for bed and noticed he smelled a little funny. I was ecstatic to discover the little man had finally pooped on his own. I think he felt so much better along with me. I don't know many people that make numerous phone calls about poop other than this family. It was big news, I'm sad to say I even sent a picture to Jonathin. He is more obsessed than I am with the situation. So needless to say the little man had an eventful day that ended with a big poop and a pony. Hope everyone is still above water after this week.  Hope everyone has a great weekend.

Sitting outside while his Daddy mowed the yard

Photo shoot at the doctors appointment

Jordan

One Week Survived

Luke isn't too excited for his Dad's video game.

Hanging out watching television with his Mommy and Daddy

Bella was the designated babysitter for the afternoon

What a week it has been. I think that we have finally gotten the hang of things. Luke is starting also to become for comfortable here. To start the week off, he didn't sleep a lot the first two nights. Now he is only getting up twice a night...yeah! We survived our first trip to Riley, only to go back again next week. I think the dogs have gotten used to Luke also. At first they had no idea what he was, but now I think they are more and more protective. Here I thought Bella would be the one that ran away from Luke and instead he is so interested in his little noises. Lola thinks she needs to lick him and Zbi won't leave the room where he is. I'm just happy that they aren't trying to attack him.
We had a little situation last night. Luke's heart monitor has two patches that go under each armpit. On Thursday we switched to a belt contraption due to the patches making marks on Luke's skin. At first things were working well, only one false alarm. Then last night I went to change Luke for bed and noticed that he was a little smelly. I went to give his chest time to breath and pulled off the monitor and found that Luke was broken out. The monitors from the belt had created blisters and they had popped and left discharge all over. Poor baby looked miserable. After calling the doctors we are now putting hydrocortisone cream on and are back to the sticker patches. I am cutting them down a bit, just so there is less stuck to his skin. I will admit I had a little crazy moment. This was something new and wasn't prompted that this could happen. I left his monitor off of him for 2 hours just to let stuff breathe. That was a long 2 hours, I couldn't stop looking at him making sure he was still breathing. I am going to be nut when they take the monitor from me. I'm relying too much on it, but this child has always been on a monitor.
Today we were visited by the home nurse. She comes twice a week to check on Luke, but mainly to weigh him. Earlier in the week on Monday Luke weighed 6 pounds 6 ounces at the pediatrician office. Today she weighed him at 6 pounds 10 ounces. That is a great weight gain. The goal was an ounce a day at the hospital. He weighed 6 pounds even when we left the hospital. So he has gained plenty. Hopefully if we keep this up we can get off the fortifier when we visit the developmental pediatrician. Luke is loving his bottle also, I don't want to take it away. We let him take the bottle if he wants it, and we feed the tube when he is asleep. They wanted us to monitor him during his feeds. He doesn't stress out and his heart rate doesn't increase also. Hopefully we won't have to keep the feeding tube for very much longer....praying. Once less thing to worry about and tape to his face. I know he enjoys it when the tube isn't in his nose. That pretty much sums up the past few days. Hopefully the pictures can help hold you over till next time.

Jordan

1st Visit Back to Riley

Well this morning we loaded little man back in our car and headed back to Riley. Today we had an appointment with the opthamology department. We are still monitoring his ROP. After sitting in the office for an hour waiting for his eyes to dilate the whole examination took 5 minutes. The doctors were happy with the way Luke's eyes are looking as of right now. They still want to monitor him next week. Then hopefully we won't have to come back for 2 weeks. The doctor is 90% sure that laser surgery won't be needed. After our appointment we were able to visit some of our nurses back at the NICU. It felt a little odd being on the other side, but it was great seeing the nurses. Hopefully we can visit sometime at night to see our other favorite nurses. That was the main thing that has happened lately. Other than Luke isn't sleeping a lot here lately. He seems to still have his days mixed up with his nights. So today we bought him an activity center. Hopefully it will help to entertain him along with keeping him awake. Sorry the blog isn't long, but let's be honest I am now the full time mom that I had originally planned to be and it is wiping me out...haha.

Jordan

Our New Weekends

We have started the life of parents of a "newborn" and as shut-ins. 36 hours down and so far we are okay. We are starting to get into the swing of things at night. I take most of the responsibility and Jonathin helps when I ask him too at night. It works so far, figure I better get used to it as he will go back to work Monday. Luke got his first big boy bath yesterday. He didn't seem to mind it too much. We also had to put his NG tube down for the first time at home. It didn't go too bad, just the tape is driving me crazy. I can't get it or the oxygen in the right place to make me feel comfortable. Sooner or later we will get the right approach. The dogs finally met Luke last night. They don't bother him. Zbi doesn't really notice him much and Lola and Bella just get real close and stare at him. I didn't think Bella would come even close to him, but so far she has done well. Luke doesn't seem to care about them either. They bark occasionally and it doesn't even phase him, thank you NICU. The home nurse came out yesterday to start paperwork on Luke. She was of course here during the first half of the Notre Dame game. I thought Jonathin was going to go crazy, but she was going through everything with us. They are scheduled to come out 1-2 times weekly for 6 weeks. I think they are based out of Valparaiso, know that drive. They are coming to monitor Luke's weight gain so we don't have to keep going back to pediatrician. Keep us away from the germs as much as possible. We will however be there Monday morning and I already have a lot of questions since things are different at home. Hopefully our teams will continue to win today like yesterday.

Jordan

HOME!

We are home! Can I say that again...We are HOME! It is the oddest feeling. It feels like old times, then I look over and see my beautiful little boy sitting in his swing. We were discharged around 1:30PM today and it was the greatest feeling to push my little man out of the hospital in his stroller. He did so well on the drive home too. His apnea alarm started going off frequently once we left Kokomo and I thought it was due to the way he was laying, because he was breathing fine. However once we arrived home and I found that one of his probes had fallen off. Once we arrived home our little town was ready for us. My Uncle Jack had put on his store's sign and nice welcome home for Luke. Then we were welcomed with a giant sign in our front yard from my cousin and her husband. It was the best feeling to see our welcome home. Luke has seemed to take to our home very well. He likes his swing. We don't swing yet, he just lays there under the lights and mobile. Luke's oxygen tank was delivered and we are all up and running. We are pretty much unpacked, but we will have to work to get in a routine. Tomorrow we will try our first big boy bath. I know it isn't a lot of details for this huge day, hopefully we will be rolling tomorrow.

Jordan

Parent Care

We are now 24 hours from sitting in our own home with our little boy. After a very long day of waiting in the NICU we FINALLY made it to the other part of the hospital for parent care. We are now in our own room by ourselves. The nurse checks on us every couple hours just to make sure we are good. So far Luke had already voiced his opinion on his timed feeds. I guess we never realized he complained when he go hungry, but let me know he is now. He was 25 minutes early and let me know he was hungry. He likes to lay in his big boy bed and watch the television. We don't have dingers, but we have 2 televisions. Hopefully tomorrow the doctors will make it up here early so we can go home before midnight. We have so much unpacking. I'm pretty sure we now have an entire hospital supply closet to set up. So far we have done well by ourselves, but we do have a lot to do every 3 hours. I'll just be happy to get our own swing of things. Sorry this is so short, but you gotta understand. Just a heads up, I probably won't be able to update everyday. I will try to update every couple days. Thank you again for all the love and support.

Jordan

Emotional

Well today was actually pretty calm. There wasn't much to do today. They decided to keep Luke on 3/4 liters of oxygen when we go home so they could do his car seat study. However, his nurse was very busy today with her other kiddo so it didn't get done. So Melody is going to do it tonight at 11 o'clock. I wasn't able to learn his formula recipe however they say I will get the paper in the morning. I am still shocked we are at this point. Just sitting there tonight was bittersweet. We finally took down all of his notes, emails, and signs tonight. When it was time for us to leave of course I started to cry and could cry again now. I am just going to miss Luke's nurses so much. They have become me Riley family over the past 3 months. They all gave me a hug when we left and I know we will see them again and have already facebooked half of them. It is just the idea that all of a sudden they won't be there when I need to talk or when I have questions about Luke. Even though they told me I can call any time day or night. I don't know if I will be as sad for the day shift tomorrow. I guess it is just that the night crew were my girlfriends, I had the most fun with them. It helps that a lot of them were my age. I know I should be sleeping now, cause tomorrow the real job begins. Finally I am in the mom role that I originally thought would take place. Up every 3 hours to feed Luke and care. I'm comfortable on the technical stuff now it is the more mommy parts. I feel like it is all up to me now to protect him, no nurses there to double check. So hopefully tomorrow I will be able to update you on parent care. It is weird that in 36 hours we will be on our way home...

Jordan

Success!

What a time for the internet to go down around here. Sorry that I couldn't update last night. This week was supposed to be busy and so far that is true. Yesterday Luke was seen by the speech therapist and had a sleep study done. The speech therapist was there to determine if Luke was able to take a bottle. There was a chance that Luke wouldn't want the bottle or that we could botch him taking a bottle and he would fight us for a very long time. But once again Superman surprised even the speech therapist. He took his 15 mL with flying colors. Not once did his oxygen saturation or heart rate drop. His respiratory rate never went up. Not to mention he took his milk and liked it. We were given the orders that twice a day Luke could have 15 mL by bottle. Last night Melody gave him 20mL just so he wouldn't be sucking air at the end of his 15, however he decided he wanted that extra 5mL also. Today he did the same thing. He holds the bottle and sucks it dry. Tomorrow the speech therapist will be back to either up the amount or up the frequency. The way it is looking now he won't be on his NG tube for very long. Luke also had a 12 nap study done yesterday. They added extra probes to measure his vitals while they changed his oxygen saturation from 3/4, 1/2, and 1/4 liter of oxygen. This will decide how much oxygen we will go home on. As of tonight we still do not know the decision and once we do, Luke can then take his car seat study. Luke will have to sit in his car seat for 3 hours while they monitor vitals once again. Any preemie or any baby with respiratory issues have to have this study. The last part of the evening had Jonathin and I attending a monitor/oxygen class. We are now proud renters of a heart/apnea monitor and portable oxygen tank. The class wasn't too difficult it was mostly to explain how to use the monitor. Not that it is difficult, but it was an eye opener that now we are in charge of him. Not to mention if that alarm does go off it is LOUD, can't wait for the dogs to hear it. The settings are if Luke's heart rate is above 230 beats per minute, under 70 beats, and if he stops breathing for more than 20 seconds. There will only be two patches connected to him at all times. Than pretty much summed up Monday, now Tuesday was an even bigger day. The whole plan of going home depended on Luke's ROP exam. Of course today it was scheduled for even later than usual which just added to the suspense. So before they came around Jonathin and I went and took a safety class. Nothing too difficult, pretty much stuff that we have learned over the past 3 months. Jodi, Luke's nurse, came and got us once it was time for his ROP. I have never been so nervous. I couldn't stand still, but once again Luke surprised me. His eyes had started on their own to get better. They don't believe laser surgery is in his future. They still want to see him next week just to monitor, but we can go home! I could have cried. I know it sounds crazy to be that excited, but we have been here for 3 months and after awhile it gets to you as you probably have noticed. As of now my mind is racing about the future and it is hard for me to sleep. Earlier it was due to the ROP exam and now it because we actually get to go home. So Luke will have his last study Wednesday and we will get our last teaching. Then on Thursday morning we will be taken to the other side of the hospital for Parent Care. For 24 hours Jonathin and I will be left in a room to take care of Luke by ourselves. There will be a nurse, however she won't be there to do anything...it is all us. Once that is complete, we will be discharged on Friday morning and will start our drive home. I am expecting us to stop once at least to feed Luke. I never would have guessed that 93 days ago we would be finally going home, let alone before Luke's original due date. The little man has really grown up the past few weeks. We could never thank you all enough for all the prayers and support you have shown us since June 10th when all of this really began. I know God works in amazing ways and he has given us an amazing little boy. Thank you all again for everything from all of us.

Jordan, Jonathin, and Luke

Luke's first bottle

Happy 3 Months!

Well Luke's 3 month birthday wasn't anything too exciting. He is just waiting to shine during this week. I really think he is ready to go home. Today I put in his nasogastric tube for the second time. We need to each do it twice to graduate. I didn't find it too hard. I think Luke is just so used to it, it doesn't seem to bother him. With the tube in his nose instead of his mouth he seems to like his pacifier so much better. We have had it in his mouth a lot the past two days preparing him for his bottle test tomorrow. I'm not expecting great things, but I would love it if we went home with some bottle feedings. Also tomorrow Luke will have his sleep study. They will measure his oxygen level while they experiment with 3/4, 1/2. and 1/4 liters of oxygen. I am figuring it will be the 3/4 he is on now. Then when we come back for appointments they can lower it. It is a big day tomorrow. I am trying to not get too excited. I was brought back down to earth tonight though. A baby was Lifelined in tonight and I remember them from Memorial. There baby was born in May and now they are here. It was kind of bittersweet. Here we thought life was awful 12 weeks ago and here we are going home now and these people are still here. It might seem like we are here a long time, but there are others that are here longer. PLEASE pray for a good week and good tests so we can go home. The excitement/unknown is already driving me crazy. Thank you everyone for the continued prayers.

Jordan

No Lucky Charm Here

Sorry I am late with the blog, but I had to stay up for the disaster of the Notre Dame game, not to mention the IU game. Luke apparently is no one's lucky charm as of now. Maybe he will be for the bears like I was back in 85-86. But enough about football. Saturday was another day used to learn and gear up for us coming home. I had to place Luke's nasogastric tube down his nose into his stomach. We each have to do it twice, this was my first. And Luke's nurse Jill said I did outstanding! So I have one more time to do it Sunday then I pass. Jonathin will make his two tries on Monday and Tuesday.Then other than our monitor and carseat classes we should be done with majorly learning. We found out that they won't do parent care over the weekend, which leaves us with Wednesday night or Thursday night. So hopefully Jonathin's bosses will allow him the night off. Otherwise to fit his schedule it won't happen till next week. I know I am talking too much a head, but I'm just hoping. Luke did have his hearing screen last night and he did not pass. So now we add an audiologist to the list of other visitors we will see when we come back. I think the list is now 5 people. The nurses tell us that it isn't unusual for a preemie not to pass just because they have been here for so long.Any baby here over 5 days has that risk factor. This week starts a week of a whole lot of unknowns, but I think we are ready. Here we thought our life changed on June 12, 3 months later the real journey begins!

Jordan

Dependent on ROP

Well if you haven't been on facebook you have probably missed our great news....we might go home NEXT FRIDAY!!!! This is HUGE, scary, and exciting all at the same time. I just hope Luke is ready for his Mommy and Daddy all the time. Not to mention his dogs that have been waiting patiently for him to come home. After 3 months we can finally all be under one roof everyday. During rounds Jonathin and I just wondered how things were looking for the next couple weeks. Luke doctor decided since he was doing so well at 1 liter at 100% she would try at 3/4 liter. I then asked about his feeds over an hour, I don't see the point really. He spits up like a normal baby, nothing huge. This led to both of these things taking place today. Which blew us away due to the fact they don't do things fast with him. I then asked what was the time frame we were looking at, and she started listing stuff. If the weekend goes well we will try a bottle on Monday, just to see if he can take some or just all tube feedings. Tuesday he will have his sleep study to see exactly home much oxygen he will be on when we go home. Also they will be consulting with surgery about his circumcision. Then they will do a car seat test. Any preemie or child with respiratory issues must have a car seat test for at least 90 minutes or longer depending on their drive home. So Luke will he sitting in his car seat for 3 hours on Wednesday. They will check him for "desatting" and bradys. So far we haven't "desatted" since we went to wall oxygen. We also have to stay event free for 5 days, meaning bradys. BUT all of this depends on his ROP exam on Tuesday. Either his eyes will look better, worse, or the same. This could mean laser surgery, stay till next Tuesday, or we do nothing. If we do nothing we will probably be back in a week or two for another appointment. If we do laser it is 1-2 days after and we can go. Or we just sit back for another check up next Tuesday. The ROP crew know were ready and are just waiting on his eyes. No matter what we will be back in around 2 weeks for a follow up with all the doctors. While Luke has all of these things to accomplish Jonathin and I both have things to do also. We both need to place his nasogastric tube twice. We also have to attend a class on Monday about his heart monitor and CPR. Then on Tuesday we have to attend a car safety class. Some where in there Jonathin works Wednesday and Thursday (maybe). AND before we go home we have to spend a night at the hospital in a regular room for Parent Care. On the day before discharge we leave the NICU with Luke and what we will have at home. We will then have to take care of him ourselves. We feed him all the time, change him, and give him his medications. Usually it starts around noon and goes till noonish the next day. This is where reality will finally set in. I never thought this day would come, and here it is coming at us. I'm afraid to leave my nurses, not just for their care, but also because they keep me sane. I'm just glad to have met all of this wonderful people. On a side note, this morning a new baby entered the module and it was a flashback. A 24 1/2 weeker on the jet ventilator. He is a 600 grams compared to Luke's 470. He is red and gummy just like Luke. I hope the parents have the same experience that we did here at Riley. It kinda feels bitter sweet, now they have a new little preemie to watch grow up after we leave. I know life will be crazy and we are just praying for a good week, especially Tuesday. I'm praying for good exam or one where decisions are made. Thank you everyone for the continued support for the past 90 days, and for the future.

Jordan

Luke's Mr. Microphone, he likes to play with his mouth cleaner.

Big Boy Tiny Tube

Today was a big day for Luke, we went to wall oxygen. He now is receiving 100% at one liter per minute. This is different to the 34% at 2 liters per minute. The vapotherm was giving Luke some force to breathe. However, now he is doing it all on his own. I actually think he is doing better on this than on the vapotherm. From here we have a sleep study to figure out where we will be when we go home. We could actually go home on this level. He has stopped "desatting" and stays either at 99 or 100. It is like a whole different kid. After the sleep study they will then have to do a car seat study. Luke will have to sit in a car seat for 3 hours and keep his oxygen in a normal area. They aren't saying when we can think about going home, however from past experience I would say 2-3 weeks. That is taking into effect the ROP outcome. Our one nurse told us to ask for the laser anyways to save us the wait or trip. I am holding out hope things will be better on Tuesday. Luke's friend Lily came back for a visit today. She looks so good after being home for six or so. She gives us hope on a great outcome. Her mom Heather also was giving me some tips for when we go home. I'm ready, but then in the back of my mind I realize it is all us for the first time in 3 months. On a side note we are sad to tell Luke today that he won't be able to meet his cat, Eva. She passed away last night. Jonathin said we can get another kitten once Luke is grown. The sad thing is Eva loved to lay on my belly when I was pregnant with Luke. Other than this little bit of news life is good at the Riley, slowly creeping home.

Jordan

Boring = Good

Mr. Lucas had a pretty uneventful day today (a boring day = good day), although we do have a few things to write about. When we arrived at bedside we were pleasantly surprised that he went up on his feedings (37 mL to 40 mL). Luke must be liking the formula now because the little guy can sure fill up his pants and clean the module out when he makes a mess. Today, we had 2 poops today compared to one every 30 hrs. Tomorrow, Luke gets to go to 1 liter per minute on his vapotherm and hopefully he adjust to the change, so we can move to the oxygen that comes from the wall. This is one more step to going home and maybe bottle feeding.

Love to all,

Dad

Answers for ROP

Well Luke had another ROP exam on Tuesday. For once Jonathin and I stayed in the room while they did it. That doesn't me I was watching, but I was there. We wanted some answers. The NNP's have tried to explain it to me, but we wanted to actually talk to the eye people themselves. There are three zones in an eye, the innermost is 1 and then moves out to three. They are watching the arteries as they form in Luke's eyes. 7 weeks ago when they first checked him he was only in zone 1. That means he could only see straight ahead really. Slowly he has moved to 2, which is where he is now. So he can see some peripheral, but nothing too far to the side of him. No this week his left eye got a little worse, but his right eye stayed about the same. So, his left eye the blood vessels are a little compacted and are not trying to stretch out to zone 3. This worries them some, because these blood vessels can tighten and pull the retina from the eye and Luke would be blind. Think of Ray Charles. This is exactly what happened to him, he was a preemie and they gave him all kinds of oxygen to have him grow. Well Luke's eyes were set in this path during the first 4 weeks of his life. He is a "jetter" so this is nothing new for them to watch. If things get worse then we will have to do laser surgery. Nothing too big, they just help hold the retina in place. The vessels start figuring things out around 36-38 weeks. Well Luke is 38, but the size or a 35 1/2 weeker. So, they are telling us in the next week and half to two we should know where we are going with this. Sometimes it just works itself out and other times it will need the laser. I asked if that will hold us back and make us stay here longer. They tell us no, we will just have to come back for checks and if they decide to do laser we would just be admitted for a day or two then we would go back home. They were a lot more optimist than the NNP's. On other news, Luke is doing so well on the 2 liters that on Thursday our goal is to turn him down to 1 and see how that goes. If he handles it then we will be on regular oxygen on Friday! I never thought we would get here. Once we get here we have a whole list of things to get through. We need a sleep study to see what his level at home will be. We need to learn his calories he will be going home on. We have to learn about the monitors, oxygen, and cpr. It might seem like a lot, but we are finally getting to talk about home. One last note, Jonathin had a nice scare with Luke last night and I don't think diapers are his specialty. Luke's head is raised just a bit to help with his reflux and Jonathin went to change a poopy diaper. Apparently Jonathin thought that Luke can handle being bent like a pretzel and cut in half. Luke did not agree and decided to "desatt" to the 30's and brady to the 60's....Luckily Melody noticed. Jonathin said he suspended himself from the NICU. However, that only lasted around 30 minutes. I however have a feeling this will be his case why he can no longer change a poopy diaper.

Jordan

Labor Day!

Well Labor Day went with little excitement. No parades or fireworks for Luke. He is sitting quietly at 2 liters of oxygen per minutes and waiting patiently for them to try to just you regular oxygen from the wall. When this takes place we will let him get used to it again. Then they will do a sleep test on him to decide what level he will go home on and we will just leave him there all the time. We also are waiting on another ROP exam. That will take place again on Tuesday. They told us not to be surprised to a ridge to form all the way around in zone 2...however I am praying we are slowly in zone 3. Sometimes they let children go home and come back weekly for ROP exams till they are satisfied. However, our 3 hour drive won't work so we might be sitting here waiting on his eyes instead of his lungs. That would be weird because all this time we figured it would be the lungs we were waiting on. Slowly Luke is gaining weight. Not like he once was, but I have a feeling it has something to do with the restricted amount they are giving him of the 30 calorie. I find it funny he did better on 27 than 30, but I'm not a doctor. Luke has finally started to get an actual cry going here lately. It doesn't last too long, and it sure isn't too loud. I have no idea why I am partially complaining about that. I guess it is due to the idea that our house is spread out and I want to be able to hear him. Hopefully on Tuesday Jonathin and I will be able to go to a safety class which is one more thing to check off our list. I'm hoping if they see us trying to do stuff it might motivate them also to start on some going home things. I started dipping Luke's pacifier in formula while he was being fed so he gets the taste in his mouth. He sucks on the pacifier good, I'm hoping when a bottle shows up he will know what to do with it. Hope everyone had a good holiday. Hopefully we will be home for the next one.

Jordan

A Word From Luke

I thought I would give my mom and dad a break for the evening. I figured for my 12th week birthday I would FINALLY speak for my self. My day started off bright and early with Mom and Dad. They stumbled in my room around 7:30 AM. I never thought I would see them that early unless I was holding my pee again. Apparently today they wanted to start learning about my medications and feedings. My nurse, Jill, had to take her time to walk them through everything. I never thought they would get done...I was hungry and they just kept waving my food in front of me and Mom had to practice shoving a tube down my throat. I tried not to gag too much for her, but I mean it is a tube going down my throat.  When they finally did get everything going it took FOREVER for my food to "get in my belly," due to the timed feeds. I'm not a big fan of the pump, and a man wants to eat no matter how small he is. Once Mom and Dad left to go back to that Ronald House they're always talking about the doctors thought they would change things up. One of them had the bright idea to change my flow in my oxygen. I was in no mood for a change. You would think after 12 weeks they would figure that out. So when they turned me down I went on strike, not breathing that is. They only thing they were left to do was turn me back up. Score: Luke 1 Doctors 0. I thought they would leave me alone after that, but NOOO we had to try it again. Stubborn these people are I'm telling you. This time they waited till my mom was back next to me. I was planning on holding my breath again till she said something about going home. Apparently if I let them turn me down I'm a step closer to going to this place they call home. They talk about home quite a bit and apparently I have dogs waiting for me. I don't know what dogs are, but they sound interesting. So instead of fighting it I went with the flow, literally. So now I'm chilling in the vapotherm at 2 liters, just waiting to be turned to regular oxygen. Hopefully this happens soon, cause the vapothem tube is really heavy and it lays in my bed with me. My Gammy and Gampy came and visited me and brought all my big friends birthday cupcakes. Apparently they are allowed to celebrate while I drink formula. My mouth was watering from those cupcakes, they looked so good. Late in the afternoon my tummy started to grumble and my poor mom was left with the situation at hand, and man was I stinky. This 30 calorie formula is doing some funny things to my tummy. I ran my Gammy and my Gampy out of the room and my Daddy didn't even try to come help. I'm just glad I wasn't in my box anymore or I would have passed out. Even my neighbors were turning green. My daddy said my pants were like Notre Dame's offense, full of crap. Those weren't his exact words, but you know where I'm going. It took my mommy a good 10 minutes to clean me up. I made into a game, every time she thought I was done...haha, I wasn't! I always seem to time it wrong though, I never get my daddy. Hopefully next time. I'm getting a little better with my dingers with my breathing. I hope they let me take one of them home. I don't know how I will sleep without it. I guess I should try and hold off on the dinging and try for a bit without it. My mommy and daddy had a big people talk with Kaylene my night nurse. They came up with this big list of all that I need to do before I can go home, and whew, it is going to be a little crazy. They is so much to do. I mean I got of the jet finally, what more do they want? Hopefully tomorrow they will just leave me alone to have a relaxing day, and maybe Daddy will be in a better mood. Apparently some leprechaun pissed on his parade...his words not mine. I just hope I get a brand new outfit. I mean I'm growing and I know Mom is holding out of me with some new bigger clothes. Hopefully Mommy lets me write a blog again, finally I can tell you about my day.

Luke

Daddy's Turn

Hello to all, for the fans of mom, I have sad news. She's not feeling well tonight due to the loss of IU and Notre Dame...lol. So she was crazy enough for me to tell all of her followers what happened through the day with Mr. Lucas.
Today, was pretty exciting for Luke and probably more exciting for us, we are finally starting to learn how to take care of the little guy from a feeding point of view. Jill, Luke's nurse, is attempting to teach us about  placing the feeding tube, how to check his residual, and what to look for if the feeding tube has moved from one reason or another. Luke doesn't seem to mind mom and me doing this, which a very good sign that the little guy trusts us (scary I know).
Well enough of our excitement, Luke has been struggling to dirty his diaper from the back end, but all came loose today while mom was weighing him. We were able to weigh the big guy at 4 lbs 12 oz up 5 grams from yesterday. As mom, was about to pick Luke up, he decided to let go of a massive poop that seemed to stink up the whole module. As I started to laugh because it was mom's turn to clean him, Jordan was quickly wiping him down and changing his diaper to hopefully control the stinkfest that Luke created. In other Luke news, he has officially started to get his feeds from a feed pump, which controls the flow of his food for an hour to help his reflux.
Hopefully tomorrow the little guy will continue to keeps his O's up and oxygen concentration low....we need this low concentration so we can reduce his vapotherm to 2 liters/min.
In all, Luke would like to express his concern over the ND game, he and dad can not take much more of the backyard play.


Love to all.

Dad

2:30 AM Relief

Well late last night Luke finally found some relief. He was able to finally have a bowel movement at 2:30 AM. I walked in to a nice little note from Tori on Luke's information board. He then was able to go two more times this morning. Apparently he looked so comfortable after everything. Hopefully he can keep it up now. Otherwise his day was pretty laid back. We held Luke during 4 of his feedings today. They are trying to prepare us for Parent Care. We have to pass it to go home. Hopefully Luke can keep it all together this weekend so we can try to turn down some oxygen this coming week. Once we are on oxygen we can talk about preparing to going home. Well Jonathin and I are getting up early to get Luke all around for the big games tomorrow. We discussed tailgating here at Riley for Notre Dame. I don't think they would appreciate that. However he will be dressed to impress tomorrow. So GO IRISH and GO HOO-HOO-HOO-HOOSIERS!

Jordan

Feels Like Week 1

Well the big issue today is poop. Luke hasn't pooped since yesterday and I believe it is due to the change to formula. I know he needs to get used to it, but it is slightly stressing. I know he is struggling with it too. He acts like he wants to poop badly, but can't go. He is taking all of feedings, but his belly is swelled up. It is still soft, so no worries, just need poop. Today was a zero events kind of day. Luke didn't brady or "desatt" lower than 79, which is great. He does very well with his new parameters but that is due to the increase in oxygen. This decreased the stress level a little. Hopefully he can keep this up. Luke also thought he needed a new bed three times today. First two time he spit up on this sheets. The third time was when Luke decided to pee all over the bed. All of a sudden he has found out he can make a mess. Hopefully tonight Tori will get Luke to poop, fingers crossed!

Jordan

Speed Bumps

I know we are in the home stretch, but these little things that keep coming up are going to drive me crazy. The "desatting" and bradys are still there, but of the three he had today he was able to pull himself right back up by himself. It is hard for me to watch when he does it. I seem to hold my breathe until it is over. The nurses know it upsets me and the worst part is I'm going to have to get over that. I need to prepared if that happens when he is with me. We were able to keep him on the formula...thank goodness. He seems to be doing okay with it. It has slowed down his digestion, but they say that is normal. Also he isn't pushing it back up his feeding tube like he was before. However, now he occasionally spits up. I know a normal baby does that, but it just feels weird to me. I seem to worry a lot all of a sudden. The big joke with Luke's nurses is that I will be the crazy parent calling them at all hours with questions, after we have been home. I told them I might call till he is 6 years old. The oxygen parameters were raised today to 93 -97 which is leaving Luke's oxygen need higher. I don't really know if I agree with the move, but they base everything on studies down here. I guess I will see how it works. I feel like we are dinging more because we are high than because we are low. I look at Luke and all that he is doing and worry if it is normal nowadays. I hope that stops, otherwise I am going to go crazy. Hopefully things go good the rest of the week so maybe Jonathin and I can get out one day and do something. Sorry I haven't posted more pictures, maybe I'll get some new ones tomorrow. Thank you for your support.

Jordan