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.

Roll Over, Sit Up

Our weekend has been filled with Luke working on head control and rolling over. Jonathin has been great with him and working on his stuff while I was studying. He isn't the biggest fan of working on these things, but oh well. We have put him in his jumparoo, to his dismay. I think things will be better when he is just a little bigger. Otherwise we have to prop him up a little. He has also been working on his Bumbo chair. He is a little stronger in that one since he is snug as a bug in it. I think we might have had a little bit of a bug this past week that added to his spitting up and formula problem. He also didn't gain any, but didn't lose any either. Hopefully this week will be a little more relaxed and we can get back on the gaining track. Sorry it is once again so short, but I hope the pictures help. This warmer weather has got us counting down the days till we can go outside soon and bust in our new wagon.

Jordan

Quick One

I would just like to say...the home health equipment is gone!!! They came and picked everything up yesterday. I think Jonathin was the most excited.  We can now light candles again in the house. That is a big deal to us. 

Also, on Monday we were given the okay to switch formulas. I don't know how well it is going. He is gaining, however he seems to spit up a little more than usual. He still has to take the preemie formula for his cereal, but we get to try something new. We now have a goal to gain an ounce a day. We even went out and got a scale to weigh Luke daily. This goal puts us on the growth chart on Luke's 1st birthday. 

Tomorrow we go back to the audiologist to begin the fitting process for Luke's hearing aids. Wish us luck, because I am not looking forward to this. He doesn't like his head messed with, especially his ears.

Jordan

I promise to have some pictures next time, sorry I'm slacking.

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?