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.

Feeling the Pressure

I should really have my nose in a book, but a blog is a must right now. Last night was a hard one, where the past few weeks finally got to me. If you haven't been on facebook or even on here I have talked about Luke's aversion to his bottles. I know that I talked lightly about it, but in actuality it is finally getting to me. When Luke gets up in the morning he takes a bottle and it can be from 2 ounces to 4 or so ounces. We then go to cereal later in the day so we can still work with a spoon. We then another bottle the rest of the night. Sometimes we have great success and he takes the whole thing. Other times he either plays with it or just pushes it away. I know this little boy has to be hungry, sometimes it is 7 hours between feeds. However, he doesn't act hungry. He naps and is happy. Right now he is sitting next to me in his Boppy talking up a storm after taking just 2 ounces this morning. He hasn't eaten since 8pm last night where he took 2 ounces also. It just eats me alive. I feel like I am failing him in some way. I have talked to his Riley Pulmonary team. They placed him on Prilosec to see if reflex could be a problem. That wasn't it, he got worse on the medication with spit up and throwing up. We changed formula to the dismay of our team. They want Luke to get the preemie formula due to the extra calories. We are now back to the original due to the continued spit up. I have also stopped baby food to try and gain more calories. He did so well with spoon feedings and now we are slowing that down. I have tried numerous new bottles and nipples. Sometimes he likes them for a couple feeds, but then we continue with the trouble. My mind is only filled with the idea that we will be going back to an NG tube and if he has problems we might end up with a G-tube. This is my worse fear now. However, this week happens to be National Feeding Tube Awareness Week. I have been following Jack's mom's blog this week. I have mentioned Jack before as a preemie from Montana. Life With Jack She has opened my eyes that it might not be horrible, but still it weighs heavy on my mind.

I am so fortunate to have made a great friend in the NICU that I vent to and she does the same to me. We spend nearly 2 months together in the NICU with only becoming friends the last few weeks of her daughter, Lily's stay. They live in Terra Haute, so visiting isn't easy unless we happen to be at Riley the same time. However, thank you to texting, we check in with each other a couple times a week. I know that I have plenty of friends and family that are here for me, but someone that is living through it gets it. Life with a healthy newborn is challenging, but life with a preemie with a whole different world. We do the normal things too, but there is more going on at our house. We have to monitor Luke so closely with is feeds, lungs, and the fact that we are stuck in our house. We also have all Luke's appointments that I have to try and schedule around school, Jonathin's work schedule, and life in general. If I can't get things around Jonathin's work I take Luke alone. It might not seem like much and to be honest it isn't always bad, especially now with no extra equipment. However, it seems here lately we never get all great news and that is hard to hear continuously especially when you are alone. I am left them to take Luke to the car and sit quietly on the drive home mulling over everything they say.

We have the ongoing therapy work for Luke. He is slowly working towards goals, but slowly is the key. As much as I want him to catch up quickly, I have to keep reality in check. Luke's schedule is tiresome on occasion and can be a struggle that has to be done. My life has taken a backseat to this little boy and all his needs. I am not upset about his needs, I just want him to succeed in everything. I don't want to speed things up, however, I'm ready to see what all this little man can do. I'm excited about seeing his future, but I know we need to get through these struggles first.

When possible, I have to place all those feelings in he back of my mind and enter a world of student. The pressure to finish in 12 weeks weigh heavy on me. So much seems to lay in waiting for me to finish school. Needless to say I am feeling the pressure and have seemed to crack last night.

AND.....we're FREE!

On Thursday we packed up Luke and headed to Riley. We had a pulmonary appointment. I went into the appointment thinking that we would stay on oxygen just a little longer at night, because of that wonderful sleep study...if you can't remember here is a look back. Sleep Study = Emotional Mommy Well apparently it wasn't as bad as I thought. We never received any results, so I never really knew what to think about it all. Luke slept 421 minutes of 490 minutes of testing....don't remember that! He also spent 29% of that time in REM (deep sleep) sleep. That is really good according to Nancy. They wouldn't have accepted the test if it would have been lower than 20%. He did drop his oxygen saturation to 81% once, however he was only that low for .04 seconds then brought it right back up. That also took place during the REM sleep. Nancy explained that is where everyone's oxygen saturation will drop, because we are in such a deep sleep. His average oxygen saturation during the whole test was 97%. WOW! I never would have guessed that. He also kept his CO2 right in range most of the time. I guess I could have slept a little easier that night, as long as he did the same. So with those results there was not other option, but to rid ourselves of oxygen completely. No more when we are in the car on long drives. No more at night. I no longer have a giant 50 foot tube running from my kitchen to our bedroom. I no longer have to put patches on Luke's sensitive face. Our bedtime routine has been cut in half. I don't have to worry about the tube getting wrapped around him. I don't have to worry about the tube coming off and him sucking on it at night. However, I know have new worries. I now lay in bed and listen to him breathe when I go to sleep. I want to hear it. I also have to watch to make sure he doesn't put his blankie over his face. Before, I didn't worry as much with it since it is crocheted and he had oxygen just in case. No however I am always checking on him. Instantly Jonathin was ready to move him into his own room now. I am not that ready. For one thing it is all the way across the house. He has a video monitor, but it still worries me. Not to mention he still wakes up in the night when he loses his pacifier and it is easier with him in our room. I know the day is getting closer though. Yesterday I packed up all home medical things and am just waiting for them to be picked up. It took us a month to get our own pulse oximeter and I used it for less than a week and it already goes back this week. I now feel like we can live like a "normal" family now.

Our biggest thing now is gaining weight. Luke has been giving us problems lately on taking bottles. He is supposed to take 20-24 ounces daily. We are lucky to get 15 in him. He just won't take a full bottle. He only eats every 5 hours or so. He has a problem playing with the bottles. We have tried other bottles and we find one that he likes. Then he changes his mind. I have asked if it the formula that he is on. Everyone tells me he needs it because of his prematurity. However, if it is giving him problems, I would rather him eat then not eat. Pulmonary has us watching it closely and are going to talk to a dietitian to see what to do. It worries me that they will make us go back to an NG tube for a bit. I just want him to pull things together and gain some weight. Pulmonary thought maybe he is having some reflux so they put him on prilosec. So far it hasn't helped with him taking more formula. I just don't get it. Hopefully we can figure things out soon. I am at the point where I will try new formula just to get him to eat.

Also, just a quick note. Could I get a few prayers to our friends the Morgans. They are a family we met and I have became really close with while in the NICU. Their daughter, Lily, was diagnosed with viral pneumonia yesterday and have taken her to Riley last night. She will probably be there a few days. Thanks!

Jordan

Would'ya Look At That!

When you see Luke every day you don't really notice the changes unless you look at pictures. Tonight, however, we got some of his preemie clothes out...WOW! I never would have believed it without the proof. 

Luke is now 10 pounds and some ounces. He is wearing 3 month clothes.

This is the first outfit Luke was allowed to wear at 3 pounds 8 ounces. His feet only came to his knees in this outfit. I cried that morning when I walked into the NICU and saw my little man dressed to the nines. He worked so hard to get to this point and now look at him. I would never guess how much laundry this little guy would make, but I'm happy to do it. 

This isn't Luke's first hat, but it is the same size of Luke's IU hat that he wore during the flight to Riley hospital. Like the outfit, I can't believe how much he has grown. 

This was taken right before he was loaded to the transport isolette for his big flight.

I have heard Luke known as a lot of things and miracle comes up a lot. I always knew he was special, and after looking at all we have been through, MIRACLE pretty much sums it up. 

On a quick medical update. This Thursday we will be back at Riley for a pulmonary appointment. I never did hear how his sleep study went, so hopefully we can get some answers then. We also had a meeting with or First Steps coordinator, Liz. She suggested Luke have physical therapy along with the occupational therapy he is currently getting. The PT will work with Luke to catch up to his actual age (7 months) instead of his corrected age (4 months). So this week, we will learn more about that, and how often Luke will have it available to him. We also talked more about Luke's hearing aids. I know the state of Indiana can have problems, but they are good to us now. The First Steps program is available to us due to Luke's birthweight. They cover all of Luke's hearing needs, from appointments to the hearing aids in general. It is just a weight lifted off of us at this moment. Especially since our insurance isn't real helpful at this point. 

We think that we might have finally figured out Luke's tummy issues. Up to the beginning of this week, Luke has been fussy and had almost stopped taking a bottle. Apparently the Miralax that he was given daily stopped working due to low amount of fluid being taken. So we started taking Cultrella. We have to break open the capsule and Luke has to take it with juice. It seems to work fantastic. He hasn't had any crying spells and he is back to eating 4 ounces each bottle. He is also FINALLY regular. The most he has been since we came home. 

I'm not a fan of only updating weekly, but I still hope to get more pictures up soon. 

Jordan

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

Sleep Study = Emotional Mommy

Last night I could easily say was one of the longest the past few months. I felt like I was back in the NICU on the night where Luke wouldn't urinate and his blood pressure was so low. I had some pre-warning on what was in store for us, however I thought Luke would handle things a little better. He had been sleeping so well the past few nights...that came to a dead stop last night. We check into the Riley sleep lab at 8pm last night and had 45 minutes of prep time. And by prep time, I mean 15 electrodes all over Luke's head, prongs taped up his nose, oxygen nasal cannula on his face, probes on his chin and near his eyes. Don't forget the 3 electrodes on his chest, 2 elastic straps around his chest, two electrodes on each leg, and last but not least...a pulse oximeter on his foot. To hold on the electrodes they had to coban his entire head. He looked like a football player in a leather helmant. He was upset from the very first electrode being placed on his head and never calmed down. He would scream and arch his back. When he finally would fall asleep, it would last for 45 minutes or so, then back to screaming he would go.   To add to the screaming, I was left in this room in the dark with only Luke's heartbeat beeping on the monitor. Also I could watch Luke's pulse ox numbers. I know never to watch the number, but it was like torture. It seemed like a test for parents just as much as for the babies. We weren't able to finally get some sleep till 4am or so. We had to swaddle and elevate his head. He also did better then too. I am not a doctor or know exactly what they were looking for, but he did let his oxygen drop down to 90 occasionaly. It would happen at the same time as his heartrate would slow. It got to be so much in the beginning I had to leave the room and go down stairs for a bit to call Jonathin. I had a good cry, then returned upstairs. I had to keep telling myself that he was fine, and we just had to get through that one night. The good thing, even though he was dropping his oxygen, the didn't have to put oxygen on him. We will get the results in 7-10 days. I am not leaning towards off oxygen completely, but I am just hoping we won't have to do this test again. If we do, Jonathin will be in the room with him. I have never been so happy for 5am to come and neither was Luke. We got home around 10am this morning and slowly Luke is getting back to his old self. He was ready to eat, because once again he wouldn't eat there. He is lounging around now waiting for IU/Michigan game tonight. Hopefully he stays up for it, so he will sleep tonight. Thank you everyone for the comments and prayers for the past 24 hours. It might seem like just a little test, but it really upset me to see him like that. He wasn't himself either. He was a whole different baby. I hope my little boy is back tonight.

Jordan

Starting to remove it all.

Who could sleep like this?

Medical Chaos

Sorry it has been awhile since we last updated, but it has been pretty calm around here...till today. We finally got some answers from our doctors that we have been waiting for. First let's start with pulmonary.
We saw them two weeks from yesterday. That is when Luke was taken off oxygen during the day and turned to low at night. We were ordered a pulse oximeter during that visit along with being ordered for a sleep study. We are still waiting on that pulse ox. Last Monday our home health care called to let me know they were working on things with our insurance and they would let us know when things would change. I then called them on Friday to see if things had changed. Well, they then tell me that they needed our NP's signature or something and they had faxed the paper twice and still nothing came back. So....I then go to call Riley, but they closed for the holiday till Tuesday. I woke up this morning with this on the top of my list, along with scheduling the sleep study since that was never done. Apparently the paper was signed on the 28th, but it takes 7-14 days to process. Which blows my mind, since our friends got theirs the very next day... On a good note, we might not even need it. We were scheduled for an overnight sleep study tomorrow night. So Luke and I will be traveling to Indy tomorrow afternoon. He has to be at the lab by 8pm and they will wire him up. I was told he should sleep like a baby with all of the beeps. Apparently it will bring him back to his NICU days. Hopefully we will be a little early so we can visit our night nurses if any of them are there. I am told that we will know Luke's results in a week. Realistically I should know in the morning, cause they will put oxygen on him if he gets low. Fingers crossed and prayers said it goes well....then no more oxygen!

Another phone call on my list was to the hearing doctors. Since Luke's CT scan we have never heard anything from them. We are getting dangerously close to when they wanted his hearing aids on full time. Right before they called, our First Steps coordinator called to schedule a meeting. We go through them for our special hearing aids also. She said she had never received anything either from the office. So...after finally speaking to the assistant to the doctor we are moving again. Apparently, they never received word that the CT was done and that we were going through First Steps. So we are now scheduled for a hearing aid appointment the first week of February. More balls are rolling now.

Other big news around here...Luke is sleeping in the travel crib. For the past three nights we have been swingless. Just in time for his sleep study. He does pretty well with it. Two nights ago he slept for 11 hours straight. It was crazy! He just needs his two crocheted blankets and he is ready to go. We aren't moving the swing out of our room just yet, but hopefully it is in the near future.

Also the little man is eating like a champ. We have moved from just cereal to some fruits and vegetables. He really likes it. I've been making him fresh food with my baby bullet, and it's pretty easy. You can tell he is getting more hungry and wants more food. He has upped his formula intake at times, but eating 2 servings of vegetables or fruit during his dinner. A far cry from what the developmental pediatrician crying NG tube last month. We have run into some constipation, but we will take what we get.

Hopefully we will have some great news on Thursday morning to pass on, fingers crossed.

Luke's IU overalls

Riah's  reading to Luke with Watson the Raccoon 

11 hour night

Jordan

Cordless...during the day

Long story short...NO MORE OXYGEN DURING THE DAY!  Starting tomorrow morning, Luke will be completely free of any tubes or wires during the day. It might not seem like much, but wow the freedom that is in store. He will still have to wear his oxygen at night and when he is in the car, but not when we are awake and around him. On occasion we will have to spot check him with a pulse oximeter, but his NP was pretty happy with the little man. He also decided to perform today unlike Thursday. He was all about lifting his head to look at us when she asked him to. He also did well eating while we were away and did well in the car. Hopefully things will keep this way since we are back home. We are scheduled to see the pulmonary department at the end of January. Before that appointment we will have a sleep study done. Luke will have to spend the night and one of us will stay with him while the other spends the night in a sleeping room. That will be down here soon. Also, as soon as we are done with oxygen, Luke can have his hernia surgery. It will be nice to cross another thing off our list. So, right now we are relaxing after being gone for nearly 9 hours. I've thrown in a picture just to brighten your day. Luke's Great Aunt Pam crocheted him some cowboy boots and we decided tonight was the day to break them in once we got home.

Jordan

Cereal Testing

After Luke was told he might have to go back on NG feeds we are determined to prove the doctor wrong. Today we started working with a spoon. I can't say it went fantastic, but he gave it a good try. I am ecstatic that Luke actually opened his mouth for the spoon. This is huge to me. All I have heard is how preemies, that were on ventilators, can have oral aversion. He however did well with this originally when we moved to the bottle. I think there was more cereal on his face than in his mouth, but hopefully we can work on it more daily.

Also, after being told that Luke was weak and couldn't hold his head up that is all we have been working on. He has been blowing it out of the water. If we are holding him up, his is looking all around. Hoping that maybe by the end of the year he can sit in his bumbo.

Tomorrow we go back to Riley for a pulmonary visit. Fingers crossed that things will go well. I am 99% sure we will get turned down to .25 liters, however a bigger turn would make me jump for joy. I am just hoping for a good visit and that Luke behaves. We aren't telling him where we are going tomorrow. Maybe we can catch him in with surprise. The good thing is it is only a day trip and we will be back tomorrow night.

Hope for good news!

Jordan

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

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.