The Waiting Room! Day 19 and 20!

Calen's weight is looking pretty good, we have broke into a new tenth place digit today. He is on his breast milk feedings now, he is still receiving 1cc of breast milk every 3 hours which is improving because he is only leaving a small part of that 1cc in his belly when they aspirate it out. We are unsure if we will see any increases tomorrow but I kinda hope so, need some progress back here please. 

Calen is a fighter, he really is and God has given us so much to be thankful for. Although the past few days have been tough because Calen is going through so many problems, but we know he will get through them. They made an effort to decrease his assisted ventilations on his ventilator to give him more chances to breath on his own today, it didn't work out so well. His blood test were coming back very poor so they had to return the ventilator settings to where they were, giving him 40 breaths a minute. No new signs of infection, although they didn't even draw a blood count today to look, but from what I now so far, his blood cultures are negative for bacteria. So with any luck in just a couple day's he will be doing better and be pulled off the antibiotics and start seeing some breathing improvement. 

One of the nurses holding onto Calen's head. So he had a PICC line in his left arm. It has been there for a while and they have had no issues with it. They use it around the clock to give him TPN and lipids. Some how the PICC became dislodged and was working up towards his head instead of his heart where it is supposed to be. They needed to reinsert a new one which they did today, the problem was it took them 4 attempts to get it in. They apparently had him all hoped up on pain medications and several people made attempts until they had success. The new one is inserted in his ankle. During all the attempts Holly and Susan had to stay out in the waiting room. So each attempt takes like 1 to 1.5 hours each time, so the time really adds up that they spent out in the waiting room. 

There he is all all sprawled out. Well back to sleep for me. I have to get up early on Saturday because I have to go get Calen registered onto my military stuff so that he officially falls under our insurance, which would probably be a really good idea. We will be back at the hospital tomorrow afternoon.

Infection? Day 19!

Good evening! We had a late night at the hospital tonight and then it was off to the parents house for dinner tonight so thus a late blog entry which is my norm anyhow. To start we had our favorite nurse and respiratory therapist tonight which is always a good start to the day. Calen's condition is what I might call shaky at this point. It is truly amazing how fast these small children's health can change so incredibly rapidly. We are still progressing in his weight which is awesome, although at this point he is not on any feedings due to multiple health concerns. Due to earlier issues that he was not absorbing the breast milk that he was getting, they decided to just hold off on feeding's all together now. His hemoglobin is started to drop again which means another upcoming blood transfusion. I asked today about why he is having a drop in his hemoglobin and they said it is common due to neonates bone marrow being unable to make enough red blood cells to make lovely oxygen carrying hemoglobin. 

So other problems that have been getting progressively worse is his breathing. He has just been becoming more and more lethargic and not moving as much. He is continually having problems where he is just not breathing and his heart rate is plunging down, when simple arousal used to work now it doesn't and they have to use other measure to get his heart rate back up. Due to these problems they have decided that we cannot hold him, at least until they figure out what is going on. They are thinking that he has an infection starting to brew which is what is causing his problems. His blood draws are showing that he has increased white blood cells (WBC) and this could be indicating an infection. They did a chest xray today to ensure that his Endotracheal Tube (ET), which is his breathing tube, to ensure that it was in the right place and it checked out fine, they also took an xray of his belly to see if any problems there and this again came back fine. So this leaves us with the possibility still of an infection, most likely in his blood which they would call septicemia. They have started him on some pretty intense broad spectrum antibiotics which are Vancomycin and Fortaz which he will receive every 12 hours and will be given probably at least for the next 48 hours until the blood cultures come back to help control an infection now if he has one.

A bag valve mask is up on top of Calen's isolett. Since he has been having these continuous episodes of not breathing and most means of stimulation are not working they are resulting at times to manual bagging. They placed the bag valve mask onto the ET tube and push air rapidly into his lungs to stimulate lot's of oxygen which does stabilize him. He seems to be having a lot of mucus secretions in his lungs, and chronic suctioning down the ET tube is also required which improves his breathing as well. 

I had just finished checking Calen's temp and changing his diaper. Holly snapped a shot of me holding onto his little feet and head. I am counting on all of you reading to ensure an extra prayer goes out for Calen the next few days so that he pushes through this ordeal. They told us we would be on a roller coaster, and we just have no idea how high the first hill is to climb. Goodnight!

Paperwork! Day 18!

We just arrived here at the hospital. It's 2:00pm. Calen's nurse said he was having trouble absorbing his breast milk feedings last night. He wasn't really absorbing any of it, so they stopped it for a few hours and plan to do it again here in a little bit to give his stomach some time to prepare. He was at 5cc of breast milk every 3 hours and they are dropping him back down to 1cc every 3 hours. So they may have to increase him from 1cc and back up the chain again, we will just have to see. 

The subject is paperwork. They seems to be dumping tons of papers on us from every outside agency out there. Stuff I wasn't expecting, so today before we came we spent sometime getting all those sheets filled out and making some appointments in the near future to work out his social security and things of that nature. 

So new and surprising information to us was that we can hold Calen when he is intubated. Thanks to nurse Bridgette for letting us in on this secret because none of the other nurses offered this to us, so we are super happy that we got the chance to hold him. It was not for a short time either, Holly just held him for about two and half hours and he did great. They just put him back in the isolette and they disconnected the vent for a short time and he really struggled for a time getting his heart rate up and breathing adequately, the respiratory therapist bagged him for a minute until he caught up and they was able to place him back on the vent and he stabilized. I am thinking he was just angry because he wasn't being held anymore.

They did recheck his absorption of the 1cc of breast milk that he was given and they still drew out 1cc, they really think that it is a lot of mucus rather than breast milk but I don't really know. They nurse practitioner said that they can continue to feed him as long as they are not drawing out more than they they are giving him, so we shall see how he does over the next day or so. 

We close on another day. This room we are in is small, there is just enough seating for a few of us. We have nothing to do but look at him, hang out, and for me play on the internet for a while, and some how times still manages to fly by. I am really not sure how that works, but it amazingly does. I think I will be back to the hospital tomorrow, I am working tomorrow but not all day so probably be here in the evening. Goodnight!

Quiet! Day 17

Calen's weight remains the same today. He is still resting on the ventilator today. Holly got to hold him briefly today while the nurse changed his incubator out for a new one. I didn't get to see him because I worked today. He is back on breast milk feedings but they decreased his amount from 5cc every 3 hours down to 3ml every 3 hours. Not sure why they did this but that is apparently what they did. Holly and I will both be back to the hospital tomorrow, I might not take many pictures (maybe) I am considering shooting a video (maybe). That is all for tonight. Goodnight!!!

Bumps in the Road Day 15 and 16!

Good evening everyone. I am back in town and here to get you all caught up on Calen. Today there was a lot of news for me to learn about. His weight is still doing well, a bit of fluctuating but really for the most part looking at the whole graph he is stable. As of today (Sunday) he is back to not being on any breast milk feedings. He is receiving 15ml of blood, his hemoglobin was once again low. They tested his stool for blood to check for any gastric bleeding and it has came back negative so at this point the drops in hemoglobin are unexplained.

This is his blood transfusion that was going in tonight. It will run over 3 hours. It is only 15ml, which is a tablespoon. They will check his blood again in the morning to see if his hemoglobin is back up to normal. 

During Calen's first blood transfusion he had an IV started in his arm. They were not using it after that point and it was removed to help prevent infection from developing. Since he was receiving another blood transfusion they had to start a new IV. It took 3 nurses and 4 attempts to get a new IV placed which marks his first scalp IV. Most likely not his last that he will ever have to receive but really sad that he had to get it, I liked feeling his head and his hair, now he has stuff in the way of doing that. Most likely once his blood counts are good again, that IV will be removed until another one becomes needed. 

Holly told me on Saturday to be praying for Calen because he was really having trouble breathing. He had his SiPAP increased a few days back to 15 breaths a minute from 10. They decided it would be a good idea to increase the size of the prongs that were going into his nose which worked for a while, but as the night went on he continued to struggle with his breathing. So down to the next picture... 

At 10:30pm last night (Saturday) they had to intubate Calen. This is an extreme down side to all the positives we have been seeing, but we kinda knew it was coming, we were really hanging onto the fact that he might do so amazing that he would never require it. It happened and he is tolerating it well, he seems to be very much at peace and calm in his incubator. He was just so tired. He worked for 2 full weeks prior to not being able to make it on his own, so we are very proud of him and thank God for the time he was able to work on his own to build his muscles. They said since he did very well prior to this event, they feel he might only be on the ventilator for about a week. Please continue to pray for his rest so he can resume normal breathing soon and be healthier and stronger because of it.

Nothing But Good! Day 13 and 14!

I am really sorry for not posting yesterday, I was just super sleepy and really didn't have it in me to upload and mess with any pictures. Today's post covers the updates of Feb 24 and 25. 

Look at that boys weight go. He is really starting to take off with his weight, we are so very excited to see this steady increase. I would guess it because his breast milk feeding are everyday being increased. He is currently receiving 4ml of breast milk every 3 hours. He is tolerating the amount very well and as long as this continues they will increase 1 ml each day. A question was answered today and that was when will Calen be taken off the TPN and lipids that are infusing in his PICC line? The answer is that he has to be tolerating 80ml of breast milk every 24 hours. He is currently getting 32ml every 24 hours. That is really exciting, in possibly 6 days he could be off IV feeding and strictly on breast milk. So lets pray that Calen does not have any set backs, they only feed him when he is doing well, if they have to do test, or give him blood, or pretty much anything, they always stop feeding so it slows the process. They also increased his caffeine levels today, he still is having apnic spells, they made some changes on his SiPAP from getting 10 breaths a minute to 15 breaths a minute, hope this helps all his breathing issues. At any rate though he is doing amazing for his size, he will have held out and be breathing on his own for 2 weeks tomorrow. 

This was today the 25th of February, Holly was getting ready to hold Calen and the nurse and respiratory therapist were getting everything unhooked and doing all the needed things to get him out of the incubator. She said that she got to hold him today for 3 hours. That is a record. His temperature's were doing great, his vitals were more than steady so the longer the better. She quit at 3 hours because she was really starting to get uncomfortable from sitting in the same spot for so long. 

After he was placed back in his incubator from being held by mom they wrapped him all up and got him comfortable and gave him his mommy smelling bear to snuggle with. He really likes to move that hand up over his face a lot. We got an official result on Calen's brain ultrasound and the scale is normally 1-4, 1 being a spot of blood and 4 a lot of blood. They said his official results was "0". Yeah, they found absolutely no evidence of any bleeding. They said that he had some layering, I am thinking this has something to do with the shape of the skull, really don't know, but they said it was nothing that really made any difference. He potentially may have to have another brain ultrasound later down the road. 

Another day down in the NICU. Thank you for everyone's continued support that is getting us all through this day by day. 

No News is Good News! Day 12

T-Shirts are in. Shirts are $8 each and we have a small supply of them right now. If you like them please pay via the donate link at the top of the screen. Once you have sent a $8 donation then send me an email to the timclopp@embarqmail.com address that is listed at the top of the screen and let me know that you paid and what sizes you need. If we do not have the size in we will have to order it, I am not handling this process myself, I am not sure how long it will take but I was told that it would not take long to get them in. The shirts say Team Calen on the front, they are white. Let me know how many you would like and we will get them sent out as we can. 

His weight remains steady today. I am really glad to see that. He is back on his breast milk feedings which will start back today at 2pm, he will be resuming the same volume as before 3cc every 3 hours. As I understand it his echocardiogram today showed that his PDA has completely closed after receiving his doses of indomethacin yesterday, praise God for that awesome news. They said he did not have as many "spells" today with his heart rate dropping, that is also awesome, so I am hoping the heart rate drops were associated with the PDA but I really have no idea. No official results on the head/brain ultrasound, but this is why no news is good news, they said that if you don't hear anything right away then there probably isn't anything to worry about. 

Holly had a doctors appointment today as well. Her blood pressure was looking much better now in the office and so we are able to cut her blood pressure medicine in half. She is doing very well, she feels a lot better and she really isn't having much pain anymore either. 

Dad held Calen today. This is only the 2nd time that I have held him, he doesn't really tolerate being on me as much as mom. He really surprised me today because I was able to hold him for a good one and half hours. He temperature was very shaky the entire time but Stephanie (nurse) was keeping plenty of warm blankets on top of him so that he would be able to stay out as long as possible. 

I really was able to relax with Calen today. Normally I am to anxious and can not hold still long enough but today I was able to and that made me very happy. We got so comfortable that Calen fell asleep and I was in and out of sleep. I was feeling so tired when he was lying there. I will not be able to see him until Tuesday this next week. I have to work and then go to Army drill over the weekend, then back to work on Monday. With all that, the blog may suffer some. Holly is really good though at writing stuff down so I can come back and write the updates. That will be the plan while I am away. 

They removed Calen's oxygen gear today so that they could do a skin assessment. They were checking him for breakdown, and problems associated with the plastic laying against his skin, they gave him a head message before they put all his gear back on. We took this picture straight to Meijers after leaving the hospital  and we got a couple prints made of it. We gave one to Joey so that he could actually have something he could look at and learn about his brother and we hope he will make some connection as to why mom and dad are gone all the time.