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