THE JET!

This machine is "the jet." Yes it is keeping my son breathing, but how I loathe it. It is the first thing I see when I visit Luke, and takes up half of Luke's area. There are as many as 5 tubes running from it that then goes into one tube into Luke's mouth and down to his lungs. This is the machine that we have been trying to remove Luke from for the past few weeks. The number on the left (26) is the one that the doctors are trying to lower to around 20-21. The machine to the right is the conventional ventilator. We need that to run the jet. We are hoping to remove Luke from the jet without going to the conventional, it can be done, but usually they step down from the jet to the conventional. From these machines we can go to the CPAP or maybe the CiPAP. Won't really know till we reach that point. Enough about the machine, I just wanted to show and explain a little more about it, and of course "vent" (haha little joke) about this machine that is driving me crazy.

Back to Luke, he is up to 2 pounds 11 ounces and still getting 23 cc's every three hours. Hopefully the feedings will go up more tomorrow when his regular people are back since his weight went up. Knock on wood we aren't having too much of a problem with his feedings. There is usually zero to 1 cc residual when the check before feeding him again. Tonight Luke wanted to move around so much. I don't know if he was uncomfortable to just thought he should squirm all over. At one time we were watching him and he picked his head up from looking to the left on his belly and tried to move it so he was looking to the right. Of course this didn't go well, due to the ET tube from that darn jet. Joey, his nurse, had to actually sit there and hold his head till he relaxed a bit. They say preemies get really strong neck muscles, and I would agree after seeing that. Tomorrow at 8am we try again to turn down the jet settings depending on Luke's blood gases. Lately his has stayed around the same, but we need his CO2 to lower so they can lower his vent settings. Also IF all goes well, we might be able to hold him if Melody is his nurse. Fingers are crossed! Thanks everyone for the continued prayers!

Jordan

Another Day Down

Another day in the books. We weren't able to bring down the ventilator settings today. His morning gases weren't fantastic so they left the settings along. They were going to do another gas at 2pm, but opted to wait till the morning. They did a little change, but honestly I don't really understand it so I don't even want to try and explain it. He had an really uneventful night that led into today. We did a little oral stimulation today with a tiny pacifier. He looks like he is starting to suck a little, hopefully we can keep it up when it is time for a bottle. That was about all that went on throughout the day. Tomorrow will be the start of week 7, the half way point till his original due date. It is hard for me to think that I would still have 7 more weeks with him in my belly if everything would have went like planned. However, even through all the craziness, I wouldn't change what I have for anything. Please pray for Luke to move forward towards removing the ventilator. Thanks everyone for the prayers.

Jordan

Superficial Grooming

What can I say about today...it was pretty standard. Nothing too big to report. The ventilator settings remained the same for the day, which is good. At least we did not go back up from the other day. Hopefully tomorrow we can go down another step. That is the plan according to the NNP when I spoke with her earlier today. We are still at 23cc's and hopefully we can go up some more. He isn't leaving much if any residual, so it should be pretty easy to move him up. Luke seems to be tolerating his feeds nicely. He was still doing his "desatting" and brady, but not as much as we were the past 2 days. I am still praying for him to get stronger and heal some of his lungs so the transition will be soon from ventilator to the next step. When Melody (his favorite nurse) got there tonight she made him lay on his back looking straight up, and if you know Luke this is his LEAST favorite position ( 3rd picture). However it had to be done, the kid is starting to have a toaster head as they call it. He refuses to look straight up so he is always on the side of his head, leaving the sides flat. We also had some special tape added to his ears which is present in the first two pictures. This is precautionary as we prevent the Watson ears. If you are a Watson you know what I am referring too. Sometimes they are sticking straight out since there is hardly any cartilage yet. I would just like to train them early if possible. The last picture is of Luke and his new BFF that he has yet to meet, his new cousin Quin. I am told they look a like, however I don't can't really tell with all the tape on his face. That was pretty much his day, mostly superficial grooming took place. I am praying that tomorrow we can take the vent settings down again, and move closer to getting off the vent.

Jordan

Down and Back Up

Today was another typical day by Luke. They are trying slowly to work him off the ventilator. They lowered his PIP down to 25 from 26. I'm not going to try and explain that cause I don't even really understand it. All I can say is that we were at 31 a couple weeks and we need to get around 21 before we can try to come off the Jet. They change other numbers every once and awhile, but that is that main one. It all goes on his expansion of his lungs. That was the main thing for the day. He is up to 2 pounds and 9 ounces, hopefully we can either speed up the gain or at least keep it constant. He was having some more "desatting" and bradycardia issues every once and a while. That is still a preemie thing, but it can drive a mother crazy. I'm getting better at ignoring the beeps, but I still tend to look. Sometimes it can be due to the ET tube and other times it is just him. I watch other preemies around him do it without a tube and they are older by a couple months. Luke's NNP showed Jonathin and I Luke's x-rays from when he got here to now, and he has grown. However, I did't really know about all she was showing us, other than the chronic lung issues. That is what they are mostly showing us.  That was the major issues going on now. We are praying for his lungs to heal so we can move off the jet. Thanks everyone once again the continued support.

Jordan

A Little Testy

Today was another "desatting" kind of day. The little man would go up and then come down, then go back up and then go down. However, at 9:30PM we might have found and answer, the kid slobbers. Apparently they suction out his mouth, but he had a bunch in the back by his throat. After that he has been fine. We were finally able to get rid of the crazies that were in our module today. The one mom was so loud that I think it actually bothered Luke. It didn't help that she was right next to him. I know it is good to read to your kids, but to sing and dance and clap was a little too much for me in a NICU. After they were moved the room was so quiet. I don't think I have heard it that quiet in a couple weeks or ever. Luke did lose his preemie friend Lily. She was discharged today, Luke gave her a salute by "desatting" as she was wheeled out. After I gave Luke his "bath" he was wide awake. That is where the pictures came from. Hopefully tomorrow we will be able to do some more weaning on the ventilator. Slowly we are working our way off the thing.

Jordan

Day 45, phew!

The days are really starting to run together. I forget what day of the week it is and exactly how long we have been going through all of this. Like the past few days we have went up on our feedings to 21cc's every three hours and are on extra nutrients. This will continue to go up as Luke gains weight. Today he weighed in at 1120 grams which is 2 pounds and 7.5 ounces. Slowly but surely we will get there. He seems to have more better days than bad days. We were lucky and found his happy place for most of the day and which a little oral morphine the kid took a wonderful nap. I didn't want to wake him for his 5 o'clock feeding he looked so peaceful. We did a little more work on the Jet today. His nurse Liz, said sooner or later the doctor will decide that he has had enough and will aggressively work to get Luke off the Jet. Apparently they just wake up and decide today's the day to start. I don't want to push him too hard, but a little action needs to take place sooner or later. Luke was lucky enough for another visitor to stop by and see him. It was really nice for me as well to see Jenn, especially since it had been almost 2 years. Apparently Dad thinks I'm going crazy and the people are getting to me, so tomorrow I get to get out of the hospital and go to the office with him for a few hours. At least I can escape the hospital for a little bit. Thanks for the continued prayers.

Visit from Memorial

Nothing too exciting that will blow you away today. Luke is up to 19cc's and tomorrow we should be up to full feeds. He had not pooped in 2 days so they decided to give in a glycerin chip suppository. His nurse Nicole had placed it while we were gone, and we came back in Jonathin thought he should be on poop patrol. So every 5 minutes it seemed he had me checking the diaper. Then one time I noticed this little clear thing, that almost looked like a clear bead. Instantly a light went off in my head, it was the glycerin chip. Some how it made it outside the diaper and was just sitting on the leg part of the diaper. So Nicole had to once again administer the chip. About 20 minutes later Luke gave them what they were asking for and did so the rest of the day. We also had a visit from Kiam from Memorial. She was transporting another baby down that ended up right next to Luke. Kiam thought Luke looked really good and wondered why we hadn't brought him back to Memorial. At that thought Luke decided to "desatt" pretty low, I think that was his answer to her. It was nice though to see a familiar face. Also Luke might be moving up in diaper sizes soon. He is growing out of the tiny preemies and moving to real preemies. He will be tiny for the next size, but we have to start somewhere. Have a good day everyone!

Jordan

6 Weeks = Moving Day

Today was a big day, Luke FINALLY was stable enough to get a new isolette. They like to give a new isolette after a few weeks, but he has been riding his roller coaster so today Lauren his RN thought was a good day to finally change it. It is kind of a production to change the isolette. They had to unhook Luke's wiring from the isolette along with all of his breathing tubes. Then I was able to pick him up and hold him against me while they moved out the dirty one and brought in the new one. All together it took around 5 minutes. The first 5 minutes I have held him in over 5 weeks. He looks so big now, but when you are holding him you realize he is still so tiny. He did wonderful though through everything. He never "desatted" and just laid there and looked up at me most of the time. Jonathin was soooo jealous. He doesn't understand why Mom always gets to do all that stuff. So, I let him have the dirty diaper when we were finished. Just so he felt included...haha! Other than his move, Luke went up to 15cc's in feedings and today was his last day of TPN. Tomorrow he will be back up to full feedings after his little hiatus.  They weighed him at 1100 grams which is very close to 2 pounds 7 ounces. We are moving right up there. He is also 14 inches long. Luke just had a great day all around. He didn't "desat" nearly like he has been doing and hopefully this is letting us work towards getting off the jet ventilator and moving towards CPAP and us being able to hold him. Thank you all again, it was a good weekend all around.

Jordan

Working Our Way Up!

Luke is up to 10cc's of food, slowly we will be back to full feeds, probably on Monday. He has been doing really well with "desatting" lately. Nothing too low, around 70, then he brings himself back up. Things were so calm yesterday that we let Gammy babysit while we went and saw Harry Potter. It was nice to be away, but still your mind still wanders back to him. It is sad, but also is a good thing, that there isn't much to talk about. The post for Sunday will have a little more to it, we are changing his isolette! Finally he is stable enough. And tomorrow is a measuring day, so we will see how tall he is now. Praying for continued great days.

Jordan

Nice and Easy

Well after a complicated week, we had a pretty laid back day. The cultures came back negative after 24 hours. They are still going to try growing them for a couple more days, but his nurse said I was probably right that he just needed blood. They discontinued the antibiotics. They also pulled and IV, so that leaves one to run TPN for the next day. They started him back on feeds, at 5cc's to begin with and hopefully after another negative culture we can go up quickly. I think he is a little hungry...haha. Jonathin finally had to take care of a poopy diaper. He was all about changing the diaper at 4:30PM until he opened it up. Then it was confusion. He had no idea what to do with it...I give him credit, at least he knew to keep wiping. Pretty much that sums up the day. Luke has to be on his best behavior this weekend, his Gammy Watson is here for the weekend, and for some reason he doesn't usually act up for her. Thanks everyone for the support this week, I'm very grateful.

Jordan

Thank You Bloody Thursday!

After a not so great night Luke is looking like a whole different kid today. He is active and awake and is tolerating all of his care. Now if we could just get back to feeding him. Jonathin had been saying he looked pale for almost a week now and his numbers showed he needed blood, now why we waited so long I don't know. When I walked in and saw him this morning his belly looked so much better. I am still sticking to the idea that he just needed blood. We are still waiting on the culture to come back to see if there is an infection, but I'm betting there isn't one. This isn't the first time we have had this same problem and the kid just needed some blood. Once the culture comes back negative we can stop the prophylactic antibiotics (thats for all my nursing girls, see I did pay attention), and we can start feedings again. They aren't going straight back to 19cc's, but will quickly work their way back to that point. His "desatting" has decreased with the blood also. I just think until he can make enough blood, this is going to be our biggest problem to keeping him comfortable along with the ventilator. Compared to last night, today was pretty mellow. Jonathin is coming down tomorrow morning to sit with me through rounds, he wants to voice his concerns on how things were handled last night. I know they had to do what they were doing, but there could have been a better way to go about it. Hopefully we don't have a night like that again. Thanks again everyone!

Jordan

One Step Forward, Two Steps Back...Maybe

I'm writing this a day late, sorry, I had a late night with my little man. Throughout the day yesterday Luke was having a good day other than his "desatting" and even that wasn't nearly as bad as before. He would rebound himself quite well. They even lowered his vent settings. His blood gases were doing well also. Even at midnight those were near perfect. So I decided to go out to eat and get away from the hospital for a few hours.  When I got back I decided I would spend the rest of the evening with Luke since I was alone down here for a few days. When I got back up to his bed they were doing x-rays of his chest and belly. This is nothing new to me, we have at least one a day for his chest to monitor his ET tube and lungs. However, this was the first one in awhile for his belly. His nurse Kayleena however told me that his belly was looking "dusky" and they were just monitoring it. They also were watching his hematocrit and might give him blood. I don't know if this is where things started to hit me. After 5 weeks of being around all of this putting on a happy face it finally wore on me. Everything they did after that just bothered me. All the poking and prodding to get blood from my little man just make me sick to my stomach. When the NNP was talking to me about his belly, just made me crazy. I know what is going on here, that is the reason we are down here, but being here is finally hitting me full bore. I know they had to do what they were doing, but I don't being on the parent side of things I know it will change me as a nurse once we are all through with Luke's hospitalization. So back to Luke...I stayed till midnight and they were getting ready to retape his ET tube AGAIN, because he spits a lot and he doesn't have much room for it to move. We were waiting on blood to arrive so they could start that. They had also started IV antibiotics just incase his cultures came back that he was getting sick. Last time this went on with his belly it was worse, he was loopy and wasn't eating. This time he has been eating with no residual, pooping, and his belly is soft. I'm hoping that the blood is all he needs for things to level out. This should help his "desatting" also. I just am wondering why we waited this long, since his hematocrit was low this past weekend. Not to mention Jonathin was talking about his pasty look earlier and that he needed blood. I know this seems like a venting blog and I don't mean for it sound that way, it just finally got to me. This is totally coming from a parent, not at all for the nursing student side. I know they are doing what needs to be done, and doing everything they can. It is just when your son looks at you with big eyes and bandages all over from being poked and prodded you just crack. I am praying that this day goes a lot smoother and there is no growth on the culture and that his belly looks good again. I know this is asking a lot, but it sure would be nice.

Jordan

Blame it on the Tube

Last night was not one of Luke's finest. Apparently he "desatted" twice so low that they needed to bag him to bring him back up. Then they retaped his ET tube and they think that may have been the problem, because he didn't have that problem again. It is just another reason why I can't wait till we are done with that tube. Throughout the day there wasn't too much going on. A few "desatts" but other than that. I had a conversation with his NNP on the outlook for his future when we go home. There is a 99.9% chance he will be on oxygen and that might be for at least a year. Also if his trachea does not mature like it should due to the ET tube we might have a tach tube. That is the worst case scenario. Also since Luke is being fed by NG tube that might continue or even a G tube when we go home. This could be due to Luke's lack of using a bottle. I'm hoping we won't have this problem due to his love of sucking on his thumb. Once again the quicker that tube comes out the earlier we can practice with a bottle. I knew we were going to have it rough when we went home, but the more she covered the more it hit me that us leaving the hospital doesn't mean we are back to normal. This little man is going to get a lot of attention even when we get home. Hopefully we can handle it. I think it will change a lot for Jonathin and I, even more than just having a child. Thank you all for the thoughts and prayers the past few days, they were well received.

Jordan

Slow To Get Up

Today was another one of those low days on the rollercoaster. It started last night apparently. Luke just didn't want to keep his oxygen saturation in normal range. So Kayleena, his nurse, had to keep turning up his oxygen saturation. On his good days the saturation is around 30. Last night and today it was around 55 most of the time. He would then still have times where he would bradycardia near 60 bpm and his oxygen saturation was all the way down in the 30's. It would take a long time to finally get back to normal levels and the one time it had me really nervous.  I don't know if it was the new oral medication or what but he would be so lethargic during these time. I was holding his hand during the one bad episode and he was just like a limp noodle. I almost wish the PICC line was still in since we were used to the IV pain medications. However, I know that we need to take the PICC out and get used to this new method. Also his CO2 was really high during the day. It should be near 35, however it started the day at 65 and raised all the way up to 109. Last time it was this high was during that really bad night about 2 weeks ago. However they decided it was due to the position he was in for awhile. After they moved him from his back to his stomach his CO2 dropped to 85 in an hour and then went all the way back to perfect. So after a rough day, we are looking at a pretty normal night. Hopefully I'm not jumping the gun here. Also his feedings were increased again to 19cc's every three hours. Also it is now half milk and half formula. Hopefully this doesn't slow things down in the GI tract. That pretty much sums up our day here. Thanks again for the prayers.

Jordan

Wow! 5 weeks!

Well the little man is 5 weeks old. I don't know if I feel like it went quick or if it has went slow. I honestly don't think it has hit me all the way what we are truly going through right now. I still think I will wake up in my own bed with a pregnant belly waiting for September to get here. We had a nice surprise today. Luke's PICC line was removed today. I had no idea it was coming out either. Dad just happened to go see him and came out to tell me that all of his IV things were gone. Apparently he messed all over the bandages and that helped to make the decision to take it out today. Oh well! So this means that there are no longer any IV medications going in him. His hydrocortizone and pain medications are now given by mouth with his feedings. I think I'm most happy with the idea of no more needles at this time. However, there is a chance he might get a blood transfusion tomorrow, so I'm not quite sure why the line was pulled today. Everything else has pretty much stayed the same. He was worrying some earlier in the day since he had not pooed all day, but he has already made up for that I am told. So, we are still in growing mode. Looking at him now I can't believe how much he has changed in the past 5 weeks. We might have some more issues with a closed module this week. Just due to the fact that one of the babies might come off ECMO (bypass) as early as tomorrow. I am happy for that baby, but sad it prevents me from seeing Luke. Hope everyone had a good weekend. Stay out of the heat this week. It is supposed to be 98 down here this week. Thanks everyone!

Jordan

Fortified to Grow

Well knock on wood, the module stayed open all day. It was like we were back to normal, besides all of the machines we have to walk through to see Luke. The little man is up to 940 grams which is 2 pounds 1 ounce. The closer we get to 1000 grams the better. This is where they seriously start working on removing the vent. This is only a couple days away due to Luke gaining at least 20 grams a day usually. We were once again upped on his milk intake to 16cc's every three hours and now he is getting fortified calories at 24 calories. This can go up to 30 calories if he needs more and more. He is only on two medications as of now, Q-bar and Hydrocortizone. The Q-bar is an inhaled steroid that is given to him twice a day through his ventilator. It is to help with asthma like symptoms. The Hydrocortizone is still going to work on his blood pressure. The BP isn't a problem now, but they have learned that things need to be tapered off slowly so he is being taken off very slowly. This will help his body's cortisol take over. The ventilator settings have not been touched and it seems we have found his happy place. His
"desatting" is nothing like it has been in the past. Also the occasional bradycardia episodes have also diminished. Only when he is being suctioned does his heart rate drop some now. Also on a side note, Melody is back. I don't know if I'm happier or Luke. He seems to have great nights when she is watching him. Thank you everyone for the comments and the thoughts and prayers once again.

Jordan

One LONG Day

There wasn't much Luke/Mommy time today. The module was closed from midnight till 10:30PM today. Jonathin wasn't able to see him before he went back to work either. There were three new babies brought in over the past few days that are in serious condition. All three are on lung/bypass machines till they have surgery hopefully this week. Otherwise we might be having this problem till they are moved. With these babies being here, there is not very much room next to Luke for us to sit with him. I was just happy that I was able to see him for a few minutes. Even with us not there we were able to get some good news. Luke has hit 2 pounds...YAY! One goal has been accomplished, now were heading on to 3 pounds. On that notes, we are finally at full feedings. This means depending on his weight he will be increasing his amount of milk as he grows. As of right now we at 13cc's and might go up again within the next day or so. The ventilator has pretty much been left alone. They just want him to grow and heal his lungs so they can start to work him off the ventilator. That was about it for the day. Hope everything keeps on the up and up.

Jordan

Out it Came!

The little bugger pulled out his ET (Endotracheal) tube, in other words, his breathing tube. The respiratory therapist and his nurse Jodi were retaping the tube and he decided he had enough and yanked it out. They had to give him oxygen till they could insert a new tube. Apparently it all happened in a matter of minutes. I could have guessed this was going to happen sometime, just by the way he is always messing around his mouth and pulling on the tape. Let's hope this doesn't happen again though till it is time for the tube to come out. That was pretty much the excitement for the day. We are just trying to grow on the ventilator hoping to come off soon, but not today soon like Luke thought. He is still at 10cc's, but hopefully will move up again this weekend as he gains weight. Lily the other 26 weeker that has been here since April might go home next week, so jealous. Her mom and I were talking last night,  I guess she was on the ventilator forever too. She thought the vent would go to preschool with Lily. The plan with Lily is to be going home on oxygen which in the long run looks like our plan as of right now too. Luke could also have asthma also due to all the lung issues we are having. We will cross that bridge when we come to it. Hope everyone has a great weekend. Thanks again for the prayers.

Jordan

Short and Sweet

The title pretty much sums the day up due to the fact that I didn't get to see Luke much. His module (room with 10 babies) was closed all afternoon and is still closed. We were allowed in for 20 minutes just to see him before we came back to go to bed. They were about to do surgery on a baby at the bedside. But enough on that let's get back to Luke. He is up to 10cc's every 3 hours and they have stopped his IV feedings of TPN. So he is receiving his nutrition completely from breast milk. He was weighed this morning at 1 pound and 14 ounces, we are still gaining. They are still watching his lungs closely and are still manipulating his ventilator. Honestly that is all I really have for tonight. Hopefully I can get more information and get to see him most of the day.

Jordan

Happy Birthday Superman!

Well the little man is a month old, and he keeps amazing me. Today we were upped again on feedings. Luke is now getting 8 cc's every 3 hours and tomorrow we are looking at 9 cc's or higher. By Thursday we should be on full feedings which is dependent on his weight. Today he weighed in at a whopping 1 pound 13 ounces. He is so close to 2 pounds. He is usually adding around 60 grams a day, so he might hit the mark by this weekend. That is if everything goes well. The only problems we have been having is his lungs still. Today he was up higher on his O's as they call it. ( The percent of oxygen they are giving him.) He stayed around 40-45%. He was also a little fussy at times, which called for some morphine. I think he is just as annoyed with the tube down his throat as I am. However, the doctors says it looks like he might have some chronic lung issues due to the ventilator. Which means he will be on the ventilator longer than I would like as they help his lungs recover. I know it really doesn't make much sense, but I figured that might be the case just because he is so small. I have been reading a giant book on preemies the past 3 weeks and that was an issue that could come up. So we just roll with the punches. Right before I left tonight an x-ray was done just to check maybe why he was needed so much oxygen. However, as soon as Luke heard an x-ray was coming he lowered his O's to the lowest all day. I'm telling you, this kid is smart. I was able to get a taste of how our relationship might go in the future. He was "desatting" and I went to hold his hand to calm him down some and the little booger pushed me away. So, I made him take my finger and I held on till he finally understood how this was all going to work. Luke also made the nurses work for their paycheck again as Jonathin put it. Donna his nurse, had been hoping for a poo all day since they upped his feedings. She got her wish around 3pm. She noticed he was squirmy and went to check on him and found he had made a mess. As my dad said, he had his first "blow out." I don't know how such a little thing can make such a mess all over himself and his bed. Let's just say it was a good thing his dad wasn't here to clean him up or the broken thumb would have been used as an excuse. That was pretty much all of the excitement for his birthday. Thank you all again for the prayers and concerns. I can't wait for the day when we can finally introduce you all to our little superman.

Jordan

Bulking Luke Up

Like the title says today we once again went up on the amount they are feeding Luke. He is now up to 6cc's every 3 hours. The way we started I didn't think they would up things so fast, but apparently he is holding his own. We just would like to see a little movement in the bowel regions. It doesn't seem to bother the doctors, but it is in the back of our minds. Especially since that was the main reason that brought us down to Indianapolis. As long as things keep moving forward, or down in this case I will be happy. Luke did some of "desatting" still today, but once again that is a preemie thing. However we once again were able to lower his ventilator settings. Slowly (the way Luke likes it) we are going to get off the vent if that is the last thing we do. I'm so tired of all the tubes and the constant beeps from it. The sad thing it is only 4 weeks in, the beeps don't phase me anymore. I just want my little man to be able to suck his thumb like he desperately tries daily. Depending on how the tubes are positioned that day Luke is either happy or very very disappointed. On those days, his arms seem to find his ears to play with, and if you have seen the Watson ears that he could inherit, he doesn't need to help pull on them.  That was the excitement for today. It still astonishes me on how many people read the blog and know Luke's story. People that I have never met even. I can't say thank you enough for all the concerns and prayers. I know they are all doing wonders for this little guy. Tomorrow will be his 1 month birthday. I honestly can't believe that we have been on this rollercoaster for a month already. It sure seems like it has went fast, but at the same time if feels like a lifetime ago I was laying in a hospital bed. Thank you again everyone!

Jordan

4 Weeks!

Well everyone, we have doubled our feedings to 4 cc's every 3 hours. I hope this sticks cause the little man needs to add some weight. He was measured today at 13 inches long and 1 pound and 11 ounces. He was this weight before, but he has lost water weight this past week. It didn't surprise me that he was an inch longer since his last measure, he looked long too me today. His vent settings were also turned down 2 notches today, and his gases were still good. Another step in the right direction. He is still doing some "desatting," but they are impressed that he can recover himself. Today he decided to be a daddy's boy. If Jonathin was holding his hand he would be fine. When he would hold mine he would "desat." My thoughts are that he was so excited to hold my hand that he couldn't breathe. Oh well his Daddy has to go back to work tomorrow so it is back to Mommy/Luke time. There is a preemie here named Lily that was born in April at 26 weeks and she is giving me hope. She has been here almost 3 months and they are preparing her to go home. I can not wait for that day to get here, even though I will be more nervous then than I am now. At least I have time now to prepare. Sorry there isn't more eventful information today, we are just in a long haul. Thanks everyone!

Tiny Bits of Weaning

Well we are still going strong down here. He has tiny tiny bumps every once in a while, but nothing like last week. Knock on wood! The doctors are SLOWLY working Luke off the ventilator. One day at a time, and only one little move at a time. They finally understand that Luke does not tolerate changes so much. He is still "desatting" occasionally. (Dropping his oxygen level) The nurses don't seem to worry that much, it isn't a big thing around here. They still believe it to be his ET tube that is rubbing. We have only had one missed meal. Luke had a little too much residual left before his dinner at 5pm yesterday. So they held off that meal to see if he would have a bowel movement. That was successful, so he was able to continue eating at 8pm. It was a busy day in the NICU. 3 babies moved out of Luke's Module and 3 babies came right in. Luke's new neighbor is also a Luke. I now know the way Jonathin and I looked that night we got here. All around the NICU Lifeline was bringing in babies and large groups were everywhere. We were also able to get out for a bit yesterday and stumbled onto a Buy Buy Baby store. It was like Babies R Us meets Bed Bath and Beyond. Finally we were able to find tiny preemie onesies for Luke when he can wear clothes. Mom thinks we might have to head back there right before Luke goes home, due to the wide selection of IU apparel. That seems to be all the big stuff that has happened. Hope everyone had great Homecoming. Thank you for the continued concerns.

Jordan

We Survived!

Like the the title says, we survived our first night not being in Indy. I was able to run home Thursday night and Luke was okay. He actually had a very good day and night. Over the past 2 days he has finally began pooping regularly. This is a big thing, now we can keep feeding him on his 2, 5, 8, 11 schedule. The nurse practitioner even said that if everything continues like it is now we will be able to up the food. This will help chunk him up as they say here. Also, they are slowly working the last of the blood pressure medications away. Like I said before, he does not like change. He is like his mom. However, they are taking a different approach this time. Instead of changing the dose from every 8 hours to ever 12, they are changing the dose entirely. So he is still getting the hydrocortizone every 8, but slowly the amount is lowered. Hopefully his cortisol from his glands near his kidneys will kick in to gear this time and we can stay off it entirely. Finally they are SLOWLY working down his Jet settings. Hopefully!!! they will be able to take him off the ventilator in the coming weeks. This is a very big thing to me. This means we will finally be able to Kangaroo Kare him again, or just hold him entirely. It has been over 3 weeks, and I'm so ready to hold him again. His finger is great, but the whole baby would be better. When I got back this afternoon I was surprised to see that the last of his puffiness was gone. So we are back to normal finally. A funny thing happened right when I got back. The NNP came over to tell me that he was doing "better" and was "good", but didn't want to say them loud enough for Luke to hear. Well apparently he knew what was going on. She didn't get it out of her mouth when he dropped his heart rate and O2 saturation. I'm telling you this kid is starving for attention. I hope everyone has a great Homecoming back home. Eat an elephant ear for me and grab some candy from the parade too. Oh and congrats to my dad, Uncles Jack and Tom for being named Citizens of the Year! Thanks everyone for the continued support and prayers. I really didn't know how many people were keeping track of my little man, until I stepped out of the Riley bubble...haha.

Sucking Away

Luke was all about thumb sucking today. He was so in to it he would make so much spit that it would affect his O2 saturation. The respiratory therapist kept having to suction out his mouth. That was just another reason for his dropping O2. We are still fighting the O2 problem, but we are a lot better off than we were a week ago. Today was also the last day for Luke's antibiotics. Ever since they removed the PICC line his cultures have been negative. Finally we are over the infection that brought us down to Riley. Let's hope it stays away. We are still able to feed on milk. We are breaking records here. Now if we can just get his whole body working in the right direction. He is really turning into his own little man.  Let's just hope we have a good 36 hours. I have a feeling it will be harder on me than him. Keep us all in your prayers to see how we get through till Friday.

Jordan

The Milkman Has Arrived

WE ARE EATING AGAIN! Fingers, toes, and everything else is crossed that it continues. Luke is getting 2 cc's every 3 hours. When we left the hospital he was up to 4 feedings so far. This is a big step in the right direction. Also we learned his new weight. They had not been weighing him lately because he was sooo fussy, but yesterday we were told he weighs 1 pound 12 ounces....whoa! Some of that might be water weight and his IV, but still. He is looking so much like a little man now. I can't get over how much he changes and I see him everyday. His lungs are still the same. The doctors think they are zeroed in on his Jet settings, I can only hope. Once we find those for awhile maybe we can wean him off the ventilator. Tonight is Melody's last night for 10 days. I am bummed! I can honestly say she is my favorite nurse. I was hoping she was going to be there Thursday night to keep him calm. I am not telling Luke that I am going to try and run home for a night. They warned me not to tell him, who knows how he will react. Also tonight Luke became and "BIG" cousin. Jenn had Quin E'lynn Evans at 6 pounds 13 ounces, a monster compared to my little man. They were able to see pictures of each other, even though their eyes were closed. I'm glad they are this close together, this way they'll be in the same grade. Hope everyone had a great night, cause we did. Thanks again everyone!

No Fireworks for Luke

Luke had a pretty normal day. When the NNP just looked at me during rounds and says, " I really don't have anything new to tell you," I wasn't expecting much. And that was okay with me. We are still watching the ventilator settings. They are now just changing a little bit as he changes. He is off Dopamine AGAIN, hopefully he will stay that way this time. His blood pressure is still okay and he is still urinating. So all around he had a pretty good holiday. Luke is still finicky, if light hits him in the face and the nurses start touching him his O2 drops some. The nurses all think he is a little stinker. Apparently preemies are not known to play well with others. So even with the fireworks outside, Luke didn't have many inside, yay! On the note of fireworks, Dad, Jonathin, and I were able to see Indy's fireworks from the top of the Riley parking garage. They were pretty neat, but the best part were all the kids. Nurses were able to bring a lot of the kids up in red wagons to see the fireworks. All around you saw lit up IV polls, it was awesome. Thanks everyone for helping up start another week down here. Hopefully we can have some smooth sailing.

Jordan

Happy 3 Week Birthday!

The little man had another good night. It wasn't perfect, but anymore I don't expect that. We are still fighting with the ventilator.  He can not find a happy medium. Either they have it turned up too much, or they have it turned down too much. His CO2 is still all over the place, but they know how to work that out so far. Today we were back to his O2 saturation dropping into the 70's and situations of bradycardia. Bradycardia is when his heart slows down. First his saturation would drop then the heart rate would follow.  His nurses and nurse practitioner (NNP) believe it could be due to his endotracheal tube (the tube down his throat). When they listen, they hear a wheeze. This could be due to him growing, or the position he is in. The wheeze is from air going around the tube. They could replace the tube, but they aren't planning it and I'm not really big on that. So for right now they are just using the vent to overcome the wheezing. I hope that works. They however might have to replace the tube if he grows too much and his is still on the ventilator. I hope by that time we are finally off the ventilator. He is finally loosing some of the puffiness that was leftover from this weeks problems. Just in time for his dad to see him. Jonathin doesn't care for the "marshmallow man" look. So far so good on the negative cultures. Hopefully we can finally overcome the infection that brought us here. There are still no plans to start feedings again anytime soon, which really bums me out. The more I look at him, the more I see more defined features. He is really starting to look like my little man. For being a Sunday things were pretty calm, knock on wood, the night isn't quite over yet. He is back with Melody tonight, so lets hope another one of her pep talks sets him straight. Hope everyone has a great 4th tomorrow. Hopefully we will be able to see some fireworks from the parking garage tomorrow night. Thanks everyone for helping us get through this past week, the support was amazing.

Jordan

Slow morning, but picking up momentum

This morning wasn't looking too promising on the urination front. When we arrived at the hospital his nurse said that his urination had slowed down to almost nothing again. I was not ready for another day of no pee, not to mention the little man was a little puffy. Also his chest x-ray wasn't looking too stellar. The doctor believed that in all of the excitement yesterday the doctors turned down his ventilator settings too much. So...his lungs once again might have collapsed a bit. She vowed to not chase him all over the place today, and instead try her hardest to level him out today. Well so far she has done a good job. His numbers haven't been all over the place AND he started to pee again. They believe that his body still thinks he is fighting the infection so his veins have become leaky. So all of the fluids are leaving his veins and arteries and going into the tissues. So they started a blood transfusion late in the day to help with the "dry" veins as they called it. Also his blood pressure lowered again over the night and the transfusion was to help with that too. We also were able to place a new PICC line, I'm grateful for that. Hopefully this cuts down on all the IV poking. So as of right now he has a PICC line in his right leg and they are placing a new peripheral IV somewhere else to finish the other half of his transfusion. So hopefully things will level out enough that he will continue to have a good night. Also I thought I would pass on that last night at work Jonathin fractured his right thumb. I told him he just couldn't let his son have all the attention. Thank you all for the support again.

Jordan

Keep Moving Forward

Well our day started out at 11pm last night. I tried to go to sleep early yesterday to catch up on sleep, well that didn't happen. The doctor called and told me that Luke still had not peed and his CO2 was ridiculous high and they were chasing him around with his Jet settings. I instantly didn't know what to do, I started pacing the room and finally decided to walk back over to the hospital to sit with him. I know, I know I'm not supposed to walk there at night, but last night that was the last thing on my mind. After about 30 minutes of me being there a blood gas was drawn and his CO2 went from 110 to 52.  What a little goober! That little man was already getting better. I stayed with him till 2am then rode back with the security guard. He still had not peed when I left, but his gases were already getting better. I had told the nurse to call me WHEN he peed, but when I left to go back this morning I still hadn't received a call so my hopes weren't high. However as soon as I walked in the module his nurse practitioner broke the news, HE HAD PEED! I got tears in my eyes. I wanted to kiss that little man (Luke) so much.  The doctors can not quite explain what is going on, but they know that Luke is fixing the situation without their assistance. His numbers change before they can change the treatment. They also believe the urination problem is due to a low blood pressure. Once his blood pressure reaches a certain level he pees again.  So he is back on Dopamine for the weekend then we will try again to ween him off again. The issues with his CO2 is stemming from the collapsed right lung. His numbers were high because he was not able to rid his body of the CO2. Once his lungs popped back open his numbers drastically changed. Now today his numbers started at 19, low, because he was ridding himself of too much CO2. So as of right now we are just chasing him around by changing his Jet ventilator.  So after a pretty eventful night, we had a pretty uneventful day. I let him sleep and he let me read. He stayed on 21% oxygen most of the day and his oxygen saturation never dropped below 85, which is a yay! Sorry this blog isn't more in depth, but sleep in on my mind right now. Thank you all so much for the prayers, once again they were heard and the little man is going strong.

* notice the picture is Luke sucking on his thumb...hehe*