Just a Few Problems

Today started off calm and a few things started to add up to send me a little nutty. First thing Luke was high on his oxygen when we got there this morning. I know it shouldn't bother me, but I feel like we worked our way down and we are taking steps backwards. Throughout the day he was worked down again, but then we had a brady. Apparently when Jonathin and I left to go have dinner Luke didn't appreciate us leaving. His heart rate dropped along with his oxygen saturation. They didn't bag him, but they did run oxygen by him to bring him up. He had been dropping occasionally during the day, but would bring it back up. When this happens it just worries me. Another thing today, we have a sore, bleeding tushy. I noticed it during his 11 o'clock change. So we had to start a protocol on his rear. Twice a day we have to clean it with a special soap. Then we powder it, barrier it with this stick, then we cover it with ointment. I think just after doing it for a couple hours it looks a lot better. The nurses think it might have to do with his extra calories in his milk and the added fortification. Which brings us today another new change. The doctors decided to take back what they did yesterday. We are back to 37 cc's every three hours, but we are now at 30 calorie additives. This way we are adding less fluid, but still getting the calories. He was able to get one feeding it with this new formula till the nurses raised the question...was the milk fortified all the way before it got to Luke? The labels are confusing. Usually the nurses fortify it at the bedside, but sometimes the formula room does it before they send it. Well at 8PM the formula room was closed. So instead of giving Luke too much they decided for the night to use the 30 calorie formula. Hopefully he does okay with the change. If he does I would like to talk about keeping him on the formula. I don't like all the changing with his tummy. Not to mention a days worth of milk is a $1000...haha! So throughout all of these things today I was a little stressed, but I was able to end my day with an hour of snuggle time with my little man. That made the day a lot better. OH! Almost forgot Luke's ROP exam. Nothing new, same old thing. We will be watch closely and are scheduled again for next Tuesday. Hopefully tomorrow will be a little more calm.

No Brady's!

Today was a more relaxing day. Jonathin and I made sure to make it to rounds this morning, cause it was "new doctor day." We now have our last doctor's wife, and wow they are different. She didn't think Luke was ready to turn down the vapotherm, instead we started inhaler steroids. We are also getting a x-ray in the morning, just because we haven't had one in a while. This x-ray may lead to a daily regime of diuretics if his lungs look "wet." This will help with his casual "desatting" hopefully. We were also planning on starting formula at 38 weeks gestation, which would be Sunday. However, she would like to wait till 40. I might ask about that tomorrow, because I want him to be as comfortable as possible when we go home. I would like most of the bugs out of the system before we leave. I think Luke is finally getting used to the big boy crib. He didn't have any bradys today, which is great. They always leave me tense when they happen. It is just a preemie thing, I know, but still. He did drop his oxygen once today while Jonathin was holding him. That doesn't sit well with me, but that is just him. I notice a lot more little things Luke does now since he is out of the box. I never really realized he would get red and push his food back up his tube some, or that Luke doesn't cry. Every once and awhile he will let out a noise, but in all honesty, crying isn't a big thing for him. The nurses are calling him the "golden child" of the module. He doesn't cry, he isn't needy, he just hangs out. Not to mention, I think they like it that we are there a lot to take care of him. Finally with the crib I feel like a mom of a baby, not a boxed up surprise. I can love on him and take care of him like we are home, but still be surrounded by help. I pretty sure the next step is for us to start learning more of his feeding tube care. I'm comfortable with pushing his food and caping off the tube when we hold him. However, now we need to learn to place the tube and check placement. I did this in school, but it is a little different now since it isn't a dummy, it is our child. Jonathin seems a little iffy on the idea, but if he plans on going home it is a must. The nurses are ready for me to learn how to mix his formula also. This isn't your typical "just add water" formula. Luke has donor milk, then protein is added at the pharmacy before it is shipped to us. Once it is in the room, they measure it out for his daily feedings and add more power for the extra calories. There are A LOT of little packages that go into the one bottle. I will have to add this at home. Right now he is still getting 27 calorie, but when we go home we will probably be on 24 calorie. That reminds me, Luke's feedings once again went up today to 42 cc's every 3 hours. This is due to his weight gain to 4 pounds and 10.5 ounces. Hopefully we have another good day, and have a good x-ray in the morning. We are in the home stretch, which might seem like the longest. We are on day 78, I would love to be home by day 110 but I don't want to push him...

Jordan

A Little Rough

Luke had a slightly rough day. It started off okay, he was able to keep his temperature and stay in the big boy crib. He also gained, not a lot, but it is better than losing weight. So hopefully that weight gain will increase up once he has become comfortable with the big boy crib. He had one not so good episode today. He dropped his heart rate low and did the same with his oxygen saturation. I'm pretty sure it has something to do with some reflex with his food. He has been pushing his food back up a little more than he used to. Either way I don't like when he does this. I know, I know it is a preemie thing. However, he looks to comfortable when he does it though. Hopefully these episodes go with his discomfort for the crib. On a side note, I think Luke is on a pooping schedule that coincides with his feeding schedule. Every three hours we change him, clean his mouth, move his oxygen probe, and take his temperature. It never fails he starts to poop at the same time. On average we go through 3 diapers a change with his bowels are moving. I swear, we move the legs and think he is done, then BAM he surprises you. I am really rethinking where the changing table is in his nursery. The worst part, he never does it for his dad, always me. I was always for warned about him peeing everywhere, but nobody told me about the other...Thanks everyone for the continued support. Tomorrow we start with a new doctor. The nice thing is she is our last doctor's wife, so we have only heard good things.

Jordan

Big Boy Bed!

Well the little man did it, jumped another milestone. He is in a big boy bed. He had to reach 2000 grams, and be able to hold his temperature today. So starting at 10 AM the top came up on the isolette and he spent the day out in the world. Every 3 hours we would check his temperature and see if it was okay. He is a little on the low side, but it seems he has always been like that. His body seems pretty toasty, especially in his Halo swaddler. And I would like to add, if you are expecting or have a tiny baby these things are great. Luke loves it, especially when his hands are right by his face. He doesn't wiggle nearly as much and he isn't trying to escape. But anyways, Luke was finally given the okay to move at 10 PM tonight. HOORAY! So now I don't look so sad sitting by a box, instead I can really see him. I am praying that he can still keep his temperature up and continue to gain weight, or back to the box he goes. All the nurses that took care of him when we first got here can't get over how much he has grown. Tomorrow will be his 11 week birthday, 76 days. Who would have guessed. Apparently we aren't completely crossing off his due date. If all of a sudden Luke figures stuff out, it could happen. I have a feeling we are in for a wild couple of weeks, if all goes well. So keep those prayers coming for us to be home before the cold weather starts to get here. Thanks everyone.

Jordan

Testing his temperature throughout the day.

Top Off

All snuggled in

Gotta love his license plate his favorite nurse brought him.

Didn't even wake up for the move

2000 Grams!

Luke has hit another big milestone, we are 2010 grams. This equals 4 pounds 6 ounces. He is HUGE now. I mean think about it, he was a 470 grams when he was born!!! We are now about the limit to move to a big kid crib. Melody wants to wait till Tuesday, because his isolette isn't bad till then. However, I might work some magic tomorrow. It is just nobody wants to go against the pregnant nurse. I figure he needs to join the real world. Not to mention I can sit by him, not the box everyday. The nurses pretty much let us take care of him. We do all of his care when we are there, they just listen to his chest. We get him out and put him away by ourselves. When his vapotherm acts up, we are the ones to fix it. I guess that just comes with the time of being here 10 weeks. On Monday there is talk to turn his vapotherm settings down to 2 liters a minutes to see how he does. I have a feeling he will struggle just a tad like usual. However, he can't go home on vapotherm. Also he can't try a bottle till he is off vapotherm and just on oxygen. When we say that we hope to be home around the beginning of October that may seem forever, but in actuality that isn't so far with all we want to accomplish. Hopefully Luke can keep up the growing.

Jordan

Hohumm...

Today was another day of lockouts. We didn't get in to see Luke till nearly 2 o'clock. Once we were able to see Luke, Jonathin took over and held him most of the time while I did Luke's laundry. Just once Luke had a little spell again where he got way too comfortable. They turned up his oxygen and we had to talk to him and wake him up. For some reason he only gets like that with his dad. Luke weighed in at a big 4 pounds 5 ounces. Apparently the doctors wanted to put him in a crib today, but the nurses told them no. They would like to wait till Tuesday; that is when his isolette needs to be changed any way. As much as I want to protect him, I'll be happy once we can be done staring at the plastic box all day long. That pretty much summed up our day. We were once again closed out tonight, but at least they didn't do it till 9:30PM. Thanks for the continued support and encouragement.

Jordan

Weight Gain Wednesday

The big thing today was the 80 grams Luke gained since yesterday. Thanks makes him a whopping 4 pounds and 4 ounces, 1920 grams. We are getting closer and closer to that 2000 mark when Luke can come out of the box. I am a little apprehensive for the move. This crib will have him using more energy to keep warm, which is less weight gain. The crib also means there is more of a chance germs. I might just be an overprotective mother, but I would just like to play it safe. More and more Luke is getting better with his oxygen use. We can hold him now and stay in the low 40's. Just last week we had to turn him up to the 50's for him to be okay. The same kind of thing when he is laying on his back. Now Luke will stay in the upper 30's most of the time when he is sleeping. It is so nice for him to barely ever ding his alarms. Today the doctors stopped Luke's oral caffeine. He was getting a small dose daily just to help him remember to breath. Knock on wood I haven't been around for any apnea episodes so hoping that keeps up while the caffeine is gone. Hoping for another good day tomorrow.

Jordan

Birthday Blockade

Sorry it has taken me so long to update today. The internet is down at The Ronald McDonald House. The good thing is that there isn't much to report. I was locked out of the module all day long until 10PM last night. I was able to see Luke for 30 seconds in the morning. His nurses allowed me to sneak in and see him before they started all the surgeries. Luke even left me a nice note for my birthday. They did his ROP exam on his eyes yesterday. Nothing has really changed, the arteries are still in zone 2. The doctors are still watching for the arteries to move to zone 3. That pretty much summed up the day. I was able to call and check on him, apparently he spent the day sleeping. The more sleeping the more growing will take place.

Jordan

Relaxing

Not too much happened today. Jonathin was able to hold Luke again before he went back to work. So hopefully tomorrow I will finally get to hold him again, since it has been since Thursday. Also today Luke's chest x-ray looked a little "wet" as they call it. So for one good time they decided to give him a small dose of Lasix (diuretic) to help with that. Hopefully that will help also with the the slight "desatting" he has been doing every once and awhile. We finally had our first conversation about planning for when we go home. We are on donor breast milk as of right now and we can't go home on that. Well they were trying to decided when they should switch to formula due to the fact that the breast milk is over a thousand dollars a day. We are going to plan on going to half donor milk and half formula at week 38, so 2 more weeks. They also are going to start getting things around for me about learning how to mix his formula when we go home. They are planning to go home on 24 calorie additives, so I will have to add that to formula. This is the first thing where we actually feel like going home is going to happen in the future. Hopefully everything will work out and we can have conversations more and more like this. Luke is up 4 pounds 2 ounces. Maybe, fingers crossed, we will be in a big kid crib this weekend. They want to hit 2000 grams first and we are at 1840 as of right now. Tomorrow Luke will have another ROP eye exam, I'm praying that the vessels has moved to zone 3. That is what they are hoping for. His doctor says that is his biggest issue at this time. Hope everyone had a great Monday.

Jordan

Weekend Away

Well if you haven't figured it out by now, I was able to go home for the weekend and leave Luke to the nurses. The weekend was pretty easy for Luke. They went up on his feedings to 35 cc's every 3 hours. They also lowered his oxygen. He is now on 3 liters every minute compared to the 4 he was on before. When we returned today, Luke was out of his snugglie and into a swaddle. They now have him wrapped up like a burrito. So far he seems to like it. Tonight we had a little scare while Jonathin was holding Luke. It seemed Luke was way too comfortable and he kept dropping his oxygen concentration. Well, it appears that Luke cannot multitask. He was being held, fed, and needed to poo. After we laid him back in his bed, he relieved himself to the point that he had Jonathin on his knees laughing. It is for sure he did learn that from his father. Needless to say, Jonathin earned his gold star today for that diaper. Also the nurses must have been bored during the weekend. I came back to a little sign and photo of Luke, and Jonathin was replaced by Darth Vader in our picture. Luke's shelves are starting to look like a shrine, that is what 10 weeks can do to you.

Jordan

Luke in his swaddle, wrapped like a burrito.

The back story, Jonathin thought he was funny when Luke was born with the comment, "Luke, I am your father." He made the mistake of talking about it in front of the nurses. They wondered how long it would take for him to notice.

Apparently this took a large photo shoot for the one picture, but isn't it cute?

Lazy Day

The title pretty much sums it up. Luke and I didn't really do much today. There were no new orders or changes. We have officially hit the feeder and grower stage. That is the one job for my little man, to grow. I think he is finally getting the hang of the Vapotherm. His oxygen level has been a lot lower lately. Most of today he was in the lower 40's to high 30's. We haven't been this low since the dreaded Jet ventilator. Luke did have a visit from the occupational therapist today. Yes, I know what you are thinking....occupational therapist?? What? Well, apparently she comes and does some stretches with Luke weekly. Preemies are knows to be in the froggy position a lot, so she will come and help him move to the "normal" positions. She didn't do much with him today, but she has him penciled in for another visit. One nice added thing from today, we were able to move a spot down from our original spot in the room. This way we are a little farther from all the excitement. Apparently we are in the "launching pad." Hopefully this will help Luke grow a little faster so we can go home. I'm going home for the next two days so the blogs will be a little sparse. Hopefully the little man will continue the track he is on while I'm gone. Thanks everyone for your continued prayers.

Jordan

Simple Day

Today was nothing too special. Luke's feedings went up to 32cc's every three hours with the 27 calorie additive and protein additive. When the doctors round they don't stay too long at Luke's bed. I'm pretty sure he is the 2nd to healthiest one in his module now. I know he has the chronic lung, but compared to what is all around him we are a breeze each morning. I'm not saying to any account that we are out of the woods, but the surrounding areas are in a lot worse shape. Two of the other babies are going home tomorrow, so hopefully we can move in the room. I am comfortable where we are, but wouldn't mind a little more space between Luke and the busy babies as I call them. Especially when Luke moves to a crib, due to the lights never dim by the busy babies. Luke and I have become really comfortable with our routine at night. After his 8 o'clock feedings we spend Mommy/Luke time together. I'm pretty sure the 2 hours I hold him at night is the most relaxed he is during the day. He curls up real tight on my chest and just sleeps. Hopefully he does just as well when his Daddy comes home this weekend.

Jordan

Dinne Time

Emergency Isolette Change

Luke had a pretty eventful day. He received his last of three immunizations, which went well apparently. He also had his third ROP exam. The same results as last week,  still in zone 2 with mild ROP. Then this evening got a little eventful. I was sitting with him for about an hour when he began to get a little fussy. Usually this means he has messed his pants. So I preceded to change him. Well for the second time this week he decided he wasn't quite finished yet. Last time I blocked it with my hand, this time the isolette did the blocking. Who knew a 3 pound baby could do so much damage. Then to add to it, he finished his excitement by peeing on everything. So around everything, I had to clean him up, and change his cute little outfit. I was then punished by having to hold the little bugger. A simple clean could not take place, they had to bring in a brand new isolette due to the catastrophe that took place. Luckily Luke did not hit the picture of BBF Quin, she was first to move to the new isolette. After all of this ordeal, Luke was comfortable and happy and we spent a good 2 hours just the two of us. I give huge kudos to Kaylene, Luke's nurse, tonight. It never fails, when she has Luke something happens. At least we could joke about it. It also seems a little funny how all of this is happening while Luke's Daddy is up fishing in the great wilderness. Hopefully he saves some fun for his dad when he gets back Sunday.

Jordan

Check out that rear.

Kaylene after the isolette switch

Pooped after an exciting day.

Strutting His Stuff

His feet are only at the knees of the onesie.

If you can't tell by the pictures, today was dress up day. It was like the first day of school for Luke with all of his outfits. I was surprised when I peeled back his isolette cover to find my little man all dressed up. Melody, Aunt Mel if you ask her, had surprised me. I thought they would make me wait a little longer. However he is now 3 pounds 8 ounces. He also was blessed with 2 of his 3 immunizations. Apparently he did okay, but the worst of the 3 is tomorrow. He is allowed some tylenol afterwards if it bothers him. They did a blood gas on him today just to check up on him. His CO2 was a little high, but he was adjusting well. I think he is just a kid with high CO2 due to his chronic lung issues. I'm hoping tomorrow morning when they do another they don't try and put him on CPAP. For some reason the CPAP hat doesn't agree with his head. I think we are going to have a sensitive kid. I had a nice conversation with his nurse Dana today. She told me not to get my hopes up for a September 18th home date. Just because they needed to get his breathing controlled before he can go home. They aren't saying no, but we are most likely looking at October. That will of course be the beginning of flu and cold season, which will leave us as shut-ins once we are home.  Luke and I will be sure to wave if you drive by to see us. There is also a 75% chance we will go home on only tube feedings. Just because his breathing might impair Luke's bottle feedings. We will then have to come back periodically to work on feedings and his lungs. As much as I am ready to get home, I'm pretty sure I am going to miss this place. Thank you all again for the continued support and prayers.

Jordan

Rubber Ducky!

Today's big event...bath time. You wouldn't think a 3 pound baby living in a plastic box would be dirty, but stinky he is. Today was his first actual scrub down bath. We didn't actually put him in a tub, they don't do that here, but he was wiped down and scrubbed. Liz, his nurse put a waterproof linen down and we scrub the little man down. His skin is so fragile I was afraid to actually rub, but he needed it. I guess when we just open up the portholes you don't notice the smell, but when you open him all the way up...wooo! I hope we can do a big boy that more often, because we are not raising the smelling kid in the NICU.
Luke's weight went up to 3 pounds 7 ounces. They want to weight just a little longer to put clothes on him. He is still getting used to the vapotherm, and they don't want to stress him out. I was able to hold him tonight while he was fed. It isn't the same when there isn't a bottle, but that is close as we are getting as of right now. He was wide awake though throughout the feedings. It is so crazy to look at him now and back when he was born. I guess I don't see the changes like everyone else since I'm with him everyday, but wow!
Luke has also learned a new trick...army crawling. It all started with him turning his head all around, but now we are on the move. This morning when I flipped back his curtain he was all the way on the other side up again the way near the porthole. He had crawled out of his snugglie. I had to pick him up and move him back to his area and "burrito" him back in. I can only imagine what he going to be like once we are home. Him and the dogs will be into everything. Lots of safety precautions will need to be taken care of. Hope everyone had a great weekend!

Jordan

Luke was pooped after his big bath

Ta Da...Vapotherm

What a surprise today was. Like normal I went and check on Luke this morning. Everything was normal, nothing had changed other than he put on some weight. I left for a bit to visit with Angie (my friend from Logansport) and her little girl. Next thing I know, my mom is telling me the nurses wanted to show me something. Luke had been taken off of SiPap and was placed on vasotherm. I had joked maybe this could happen while Jonathin was away, but I sure thought there would be some working down on settings first. Nope! The vasotherm is a oxygen with humidity and warmth, with some slight pressure. It is even more up to Luke to breath on his own. The best part, we can see most of his face! The big head piece and hat are gone. Now Luke just has a small clear tube that runs under his eyes into his nose. This is really the first time I am seeing his whole face. I'm almost positive he has Jonathin's eyes, but everything else is mine. He is set at 4 liters a minute and has been down to 48% oxygen. They do not want to up the liters anymore, so if he has problems and struggles we might be back to SiPap or CPAP. My fingers are crossed that he will grow comfortable with this like he did the Sipap. The only thing left after this is just pure oxygen. That would be huge. I was able to talk to Jonathin tonight and his having a great time up fishing. I'm just glad he is still able to check in with me. I think he would be a little bummed if he didn't know all of this. Thank you again for all the prayers, they are working like crazy. Especially that one big prayer from the Pope, thanks to Luke's Great Aunt June...haha!

Jordan

Look at that face! 

Happy 2 Month Birthday!

All I can say is that these posts are beginning to become pretty boring...haha, and that is a great thing to me. The main thing today was Luke's 2 month birthday. It came and went without any big problems. The only concern is that Luke is losing just a tad bit of weight. I think it is because he doesn't want to wear clothes. We were so close to clothing him, but he is slowly going the other direction. The nurses believe it is because he is using more energy now to breathe on his own. I guess I can agree with him. So if he loses weight again tomorrow we will move up on our calorie additives. From what I have been told, it is like vegetable oil...yuck! At least Luke doesn't have to taste it. Luke has become a totally different kid over the past week. All of a sudden he is ready to grow up. He is awake more and is acting like a newborn. He has his big eyes open taking in everything. It is so nice to see a kid that doesn't need drugs constantly to feel comfortable. The prayers that have been sent our way are outstanding and encouraging. Thank you again everyone. If I could just that you pray for a friend of mine that went to IU with me. She delivered last night at 29 weeks. Her little girl is 3 pound 3 ounces and is now in Indy while her parents are in Muncie. She was doing well enough that Riley was not needed. Those prayers would be great.

Thanks, Jordan

Up We Go Again

The only big news today is that Luke's feedings were moved up again. He is now at 30cc's every 3 hours. This is once again due to his weight gain. I thought today was the day we would finally be able to put on some clothes, but Luke had other ideas. He ended up losing 20 grams, so we are back to 1460. Maybe tomorrow he will put on a total of 40 and we can start the fashion show. Luke did a lot of head therapy today. Most of the day he was on his back trying to round out his head. He is able to handle his back more and more. The need for more oxygen has decreased a lot for his back. He is still a tummy baby, but hopefully he will tolerate his back more. Tomorrow is a big day for Luke, he will be 2 months old! I can't believe that already. I am in such a routine down here that it crept up on me. Hopefully we get to celebrate with more than his immunizations. I don't want to get too picky now though. Sorry we aren't too exciting down here right now, just growing. Thanks everyone.

Jordan

All Smiles

I don't think Luke wanted to face all the Notre Dame that his dad was wearing.

Luke's arms are so long.

As you can see from the pictures, Jonathin finally got to hold Luke for the first time in 8 weeks. It was funny, Jonathin was all cranky and tired before but as soon as they put him in his arms he was happy as a clam. Luke was able to hold a good temperature for two hours while Jonathin held him. They didn't do kangaroo kare. Instead he was placed in Jonathin's arms while he was still in his snugglie. (the shoe looking thing that he is always wrapped in.) Luke hardly "desatted" during the time. And if he did he only went down to the mid 80's. I don't want to say much, but it seems that Luke is finally turning corners and is ready to just grow up and start acting like a little normal baby. That is a normal baby with a SiPap. Last night Jonathin left for his fishing trip and won't be back till the 21st. He will be getting a daily check up text message. Hopefully by the time he gets back Luke will be moved to another machine, either CPAP or Vasotherm. I don't want to push him too much. He is now 3 pounds 4 ounces. He is so close to clothes, that he might have them on by Friday. Woot Woot! I hope he doesn't hate clothing too much. I am writing this a day late due to company at the Riley. Today (Thursday) Luke's "little" 5 week old cousin is having surgery here. Hopefully it is nothing major with Quin, but at least she is down here. That pretty much sums up Wednesday. Hopefully another good day today. Thanks everyone for the continued prayers.

Jordan

Finally Feeling Comfortable

It has only taken 5 days, but finally I think Luke is feeling comfortable on the SiPap. When I walked in last night, his oxygen saturation was down to 38% and he was "satting" high 90's. I haven't seen him this low for over a week when he was still on the ventilator. Also, his respiratory rate is finally in the "normal" spot. He is staying between 40-80 breathes per minute. This is wonderful. He was sometimes in the 100's, which means he was breathing way too much. Hopefully he will become so comfortable that they can lower his settings soon, and even switch him to CPAP or Vasotherm. I'm just happy we aren't worrying about putting him back on the ventilator. His ROP exam wasn't fantastic, but it could be a lot worse. As of right now we are in zone 2, but we have mild ROP. He can grow out of it as of now, but we really won't know till they check again next week. Nothing too serious as of now. He gained another ounce yesterday, so we are 3 pounds 2.2 ounces. Hopefully the up and up continues, especially while his dad is gone for 10 days. On Wednesday, Jonathin will finally be able to hold Luke. I'm just hoping he can stay warm as long as he can while Jonathin is holding him. Thanks everyone once again.

Jordan

Another Lock Out

Today wasn't too exciting. Luke did a lot of laying around and honestly looked the most comfy he has in a while. We met his new doctor, Dr. Troutman. Riley is a teaching hospital and the residents switch every three weeks. So this will be our 4th doctor since we have been here. His main goal over the next 3 weeks is to grow Luke. Luke is following the growth chart, but is below the curve due to his size when he was born. They are giving him extra calories to try and bring him up to the curve and maybe even be larger than the curve. His goal is an ounce a day. As of right now we are getting around an ounce and half a day. I have a feeling 30 calorie additives will be here soon. Also his 2 month immunizations are coming up very soon. However, Dr. Troutman wants to wait just a little longer to try and get more meat on his bones for his shots. Also on Tuesday Luke has his next ROP eye exam. They will be weekly. Luke's arteries in his eyes are in zone 1 and we need to move out to zone 3. They are just watching to make sure the arteries don't cross and clump together. Dr. Troutman will feel better about his vision once he gets moving into zone 2. Once again this is all due to is small size. Hopefully soon we will really hit a growth spurt. Even with all this information, I wasn't able to see Luke much. Another sick baby came in and shut the module down for 6 hours. Hopefully this can slow down for a bit, it gets a little frustrating. Not to mention things get chaotic for Luke and it disturbs him. We really need a relaxing time as much as possible. That is when he has the least amount of oxygen concentration and his respiration rate is lower. Hopefully next time I can report on another good ROP exam and a good oxygenation day. Thanks everyone!

Jordan

Kangaroo Kid

Luke had a little bit of a rough night last night. They were worried about his respiratory rate and his oxygen  concentration. The doctors decided to do a chest x-ray just to check on things. Everything seemed just fine so the let him be. Today he had his comfy times and his anxious times. Even when he gets a little antsy they are able to calm him without giving him medication. This is really good, due to the fact he would get something almost once every 6 hours when he was on the ventilator. Today was also a great day for myself, finally after 7 1/2 weeks I was finally able to hold Luke again. I wanted to make sure he was up to it, and they wanted to change his isolette. It was a little rough at the beginning, but we got the hang of it by the end. I was able to hold him for a little over an hour. They call it kangaroo kare, because I hold him against my bare skin and he is only wearing a diaper. We never had an issue with him getting chilled, which is really good. Every once and awhile I would hear a little whine from him while he moved around. He also left a nice slobber puddle on my chest. Things are finally starting to feel right to me again. However, there was still the part of me that couldn't stop looking at his oxygen saturation on the monitor. Even when things are coming to a close here, I don't think I will ignore that monitor. Jonathin is jealous because he wasn't able to hold him yet, but he is going to make a quick trip down here Wednesday and says that Luke better be ready. Also they bumped Luke's feeds up to 27cc's every three hours. I really think he could handle more, but they are keeping with his weight. He is still a little over 3 pounds and today he measured 15 inches long. Other than that his day was pretty normal. Sorry about the pictures being sideways, but they are all from our kangaroo time. Thanks again for all the encouragement, as the little man grows up.

Jordan

Mr. Pacifier

We are still doing well on the SiPap. I understand that last night might have been a little rocky, and his oxygen saturation got a little high. However today Luke was a champ. At one time they were down to 42%, which is great. Sometimes they have a little problem with the seal of his nasal cannula or mask. Third picture is the mask that he has placed over his nose. It is pretty small in comparison to a penny. Every three hours they switch between the mask and the nasal cannula, trying to prevent breakdown of the skin on his face. The main thing they were watching today is the tubes that run the SiPap are apparently giving him marks on his head. To help stop that problem they placed padding under his hat, so now he looks like a football player. Today was a big day for the pacifier. We have tried before, but the ET tube was in the way. Today Luke really seemed to enjoy it, along with his hand some. For about 3 hours straight he sucked on his pacifier while he was wide awake. It keeps him calm and his numbers stay steady. The only down fall is sometimes his pacifier will move his mask and break the seal of the SiPap. Today I was able to hear some noises coming from Luke. They aren't too loud, more like a little whine, but they are there. He is also sneezing every once and a while. He is like his dad too, sneezing numerous times in a row. We are hoping for a good night tonight and another good day tomorrow. We are taking one day at a time, hopefully slowly we can move right along the line of breathing apparatuses. Thank you again for the continued prayers, thoughts, and encouragement. It all means so much to us.

Jordan

Huge Day, Just HUGE!

Well if you can't tell by the excitement, Luke's ET tube is GONE!!! During rounds they originally just wanted to turn down the ventilator 2 and see how that went, but then I think they saw how let down I was. So Dr. Leicty asked me how I felt if they just tried it today. I started to cry. Until today I haven't seem Luke's entire face or heard him make a nose since he was seconds old. This is huge to me. They decided to put him on SiPap. The machine is a lot like CPAP for snoring people. It goes over his nose and pushes air into him, but he has to breathe himself. The difference in this machine is it alternates on the amount of air Luke will get. So every other breathe is a 9, then it goes back to 6. When we go to CPAP it will be set at 6 most likely.
The nose piece is help on his face with straps that are tightened on a little hat they put on him. Also all the tubes are Velcro on to the front of the hat. He looks a little like Smurf according to my mom, just without the blue. The switch happened so quick. They loosened all the tape and removed it, then gave him three quick breathes and pulled the tube. Quickly, Liz his nurse, placed the new piece on his nose. He didn't seem to like it at first, but quickly calmed down. He didn't "desatt" during any of the action. They got relaxed, and fed him, then went back to everyday things. He hasn't seemed to struggle at all so far, knock on wood. They did a blood gas an hour after the switch and his CO2 had risen a bit, but they said that was normal. So as of right now there are no blood gases scheduled unless he seems to struggle some. They are now watching his respiratory rate to make sure he isn't trying to breathe too much. They are also watching the concentration of oxygen that he needs to prevent "desatting." So far we are good, nothing too bad. He also hasn't had any pain medication today, and he seems to be doing okay with that.
Now just because he is doing well now doesn't mean that tomorrow he won't be put back onto the ventilator. He could change quickly. Usually they watch really closely for the first 72 hours, but so far we are doing good. In other big news, Luke is now 3 pounds! This might be contributed to all the blood he received yesterday, so he might lose some tomorrow, but he was there today. We are so close be being able to dress him. It is still early in the night so hopefully we still have a good, calm night. The prayers are doing huge things down here, thank you everyone so much from all of us.

Jordan

Pictures: The first one is Liz, Luke's nurse, getting everything ready.

 Luke has his hat on, just waiting for the tube to come out.

 They are trying to get Luke comfortable after the switch. The only tube that is now in Luke's mouth is the feeding tube.

 He went back to sleep real quick after all the excitement.

The nice thing about the hat, it holds down his ears. No tape needed!

 Sorry the picture is sideways, but this is the SiPap. Sure is a lot smaller than the Jet and the ventilator.

This is the cutest little apron that my friend Gloria made for Luke. She worked at Home Depot with Jonathin and I and made Luke his own apron. It could fit him right now. I love the Superman artwork!

A Little Rocky

Today started off a little rough. Luke's 8AM blood gases weren't fantastic. His CO2 was up in the 70's, and they would like them in the 40's or 50's. So this development meant the ventilator settings were going back up to 24. His NNP, Kelly, wanted to watch closely since we are so close to trying to remove the vent. So he then had another gas at 11AM and his CO2 had come down to the 60's. Kelly didn't want to wait till tonight to check the settings, so she ordered another blood gas at 5PM right before she left for the evening. Also we had been watching his hematocrit levels. They had dropped to around 27, so they asked me about giving him blood. Before they could get the whole question out I had already answered with a "YES." I do not want to wait till his tummy changes colors and we worry about an infection again like last time. They are finally listening to me, haha. Just kidding, the team is great down here. Kelly also believes the blood will help when we pull the tube. Just a little bit of an extra boost. They also began giving Luke a dose of caffeine. This is just an added assistant to help him remember to breathe. When they do pull the tube, he will need to breathe on his own, so this will help. When 5PM came around Luke's blood gas was back to the 50's, so Kelly just maintained his settings for the night. We will see how his gas is in the morning, and they will make the decision where to go from there. It is still up in the air if the tube will come out tomorrow or sometime this weekend. It is all up to Luke at this point. I wanted to baby the little guy, but now I know he is getting way to comfortable on the ventilator and we need to push him a bit. So tonight I am praying that tomorrow will be the day and that we will finally get to see his whole face without a bunch of tape on it. I just hope that if we can pull the tube, he will be able to maintain himself and not have to go back on the ventilator again. Thank you everyone for all the support. Hoping tomorrow that I can post of great pictures.

Jordan

Fingers, Toes, and Eyes Crossed

BIG NEWS! If Luke's blood gases maintain till Friday and his need for oxygen stays like it is right now we will be off the ventilator and jet on Friday! This is huge, huge news. This morning he blood gas was so good they took him down 2 on the jet. Then at 2PM they took another gas and it was even better than the 8AM gas. I am praying that this all works out. I know that there is a chance that he will be put back on the ventilator, but a chance to be off is great. He will then be put on CiPap, I really can't explain it, but it partially like a CPAP. It forces air into his lungs, but he has to breathe on his own. I think he is just as ready as I am to get off the jet, always moving his head around. The CiPaP will fit over his nose with straps that will go around his head. I will be excited to finally see his face mostly. We will also be able to hold Luke. They tell us we will be able to hold him once a day for a couple hours as long as he is warm enough. So you can understand my excitement. Other than this big news today was pretty common. Luke is getting pretty good at "crawling" around in his snugglie they have him wrapped in. They have his isolette covered and when they opened it back up he has moved at least 2 inches. They wrap him back and he moves again, like Houdini. We are just hoping for a calm day tomorrow that leads into Friday. Thank you for all the prayers, this is such a huge step for Luke.

Jordan

A Real Eye Opener

Today we spend most of the day locked out of module 1. There was a new baby that was flown in from Ft. Wayne this morning and this evening there is a pretty sick baby coming from University just down the street. We are still the sick module due to the ECMO still taking part in our module. Hopefully the baby tonight won't be as sick as they think and we can see one more time tonight. Today Luke had visitors from Northwest Indiana. Camisha, Denise, and Amber from school came down to see him. I was just happy that we timed things right and we slipped in before they could close again. It was good to see my friends. Luke's morning gas was outstanding, but good enough to keep him maintained where he was. Which I'm happy that we at least did not take a step backwards. He will have another blood gas in the morning at 8AM. Today's big excitement was Luke's ROP exam on his eyes. ROP stands for retinopathy of prematurity, and it describes abnormal blood vessels and scar tissues over the retina of the eye. There is a greater change of occurrence the smaller the baby, so Luke's chances are high. They once thought large amounts of oxygen given to the baby might be a factor, but they don't really know. If there were these vessels the worst case scenario is blindness, but usually just glasses would be needed. However, Luke's test came back great. There wasn't much to worry about, they however will be watching and checking him occasionally over the next few weeks. It is just another hurdle the little man has leaped. Hopefully tonight isn't a long night and we continue to move forward.

Jordan

FINALLY!

We were finally able to wean down the jet ventilator today. At his morning blood gas Luke's CO2 was low enough they comfortable to turn down the PIP. Now Luke is sitting at 25 instead the 26 I discussed yesterday. He had another blood gas at 2PM just to make sure he was handle the change, he passed. Now we will have another blood gas at 8AM tomorrow, fingers crossed we will get to turn it down again. Our little man has become feisty. If he isn't knocked out, he wants to move all around. I think the ET tube is finally getting to him. He likes to fidget and try and move his head more and more. I think he has outgrown the amount of pain medicine they are giving him and has grown a tolerance. That pretty much sums up the day. I thought with the pictures tonight would show you a little about Luke's area. The first picture is Jonathin standing by Luke's isolette while he is holding Luke's hand. This is the normal area we sit or stand at during the day. The second picture is of the area next to Luke's isolette. This where we put the cards, notes, and all the emails he has received. There is also our picture, just in case Luke ventures a look. The third photo is the screen that we look at when we are not looking at Luke or when the chime rings. The top number is Luke's heart rate. The second number is the oxygen saturation. This is the number that they mainly watch. They like to keep it between 91 to 96, otherwise it will ding. The third number is the breathes per minute, however since he is on the jet they don't track it due to inaccuracy. Hopefully this can give you a little bit of an idea about our surroundings. Thank you again for the continued prayers. We can sure see them working.

Jordan