Day 24

Calen's weight is stable today. He actually lost about 10 grams but for all practical purpose there is no real change. He is receiving 6cc of breast milk every 3 hours now. This started today and he seems to be tolerating well, they are giving him that 6cc right now as we speak. They are going to assess him and then I will be holding him today. This will be my third time and how long he will be out will just depend on how long he is able to hold temperature. He continues on the SiPAP and is still tolerating that really well, he does require a lot of suctioning to keep his airway clear but as long as they do that, he is really stable. 

Holly had a doctors appointment today. It was really just to check her blood pressure. Her pressure was 118/80 so they are once again decreasing her blood pressure medications down to twice a day and then we will check it again in 2 weeks. We are going to reduce down to once a day in 1 week and then not take it at all the day of her appointment to see if her blood pressure is fine then, if it is we can stop taking it all together.

Calen this afternoon when we first got to his room. He still has a lot of dependent edema. The swelling started in his legs and is now moving all over, I believe this is still normal, normal for swelling anyhow. They said that his swelling is in which ever area is the lowest, elevate his legs, upper body swelling, and then so on and so forth. With all hope and prayer he will just start loosing the swelling and we don't have to worry about it 

Dad held Calen today. Only my third time holding him. I am making waves though I was able to hold him for about 2 hours and his temperature actually went up and not down and we didn't need 15 million extra blankets. It was enjoyable, I think Calen liked it too. He sneezed like 5 times though, hope he is not allergic to me that would be bad!!!

Holly captured this nice candid shot of me and Calen. I really liked it, she did a great job. 

About every 14 days they do an isolette change in the Calen's room. Once they bring in a new isolette they swap everything out. They get new bulb syringes, stethoscopes, blood pressure cuffs, thermometers, tape measure, tubes, and suction, all nice new stuff. I really like his new isolette it has a different outside cover, picture will be up tomorrow. 

I wanted to post this picture yesterday but I forgot to. We were very tired, Holly was falling asleep with Calen, I was falling asleep, and then I have no idea who took the picture. It is kinda hard to sleep there though, I have a tiny couch I do not fit on length or width wise, I had to add a rolling chair to hold my feet. 

Joey has his 2 year appointment tomorrow so we will get to the hospital late and we will have Joey so it will limit the time we stay at the hospital. Goodnight all!

Back to the Good Side of the Roller Coaster! Day 22 and 23!

TEE SHIRT ORDERS! I will be sending out for an order of the shirts. If you want some please let me know. They are $8 each. Send me an email if you want one. Thanks.

I am sorry that I am a couple days behind on posting. I am here to tell you if I work, I really don't have it in me to sit down and get a post together. So I will be more than happy to catch you all up today. Weight chart above is unbelievable. Just 3 more ounces and he will be at 2 POUNDS. Just the thought of the number 2 is so exciting, it is a true sign of improvement. Every time we look at him though, we can tell that he is getting bigger and his skin is starting to get smoother and his color is much more natural. Calen is up to 5.2ml of breast milk feedings every 3 hours running though the OG tube, he is absorbing it well and he is having significant weight increases because of this. They have started to decrease his IV TPN and lipids also, so with all prayers he will be off TPN and lipids in about another week. He has to be getting 80ml of breast milk in a 24 hour period in order to shut off the TPN and lipids. 

Yesterday March 7, this was Calen's last day on the ventilator. They decided that they would extubate him and put him on the CPAP and see how he did. After correcting his ET tube the other day he did really well over a full 24 hour period making it seem that he didn't really need it. 

So here we are on March 7 with the CPAP on. He went for about 3 hours on the CPAP. The first hour went well, the second hour he experienced a multitude of apenic spells and heart rate drops, he was doing a really good job of bringing his heart rate back up on his own though. It seems as though the 2nd hour was so hard on him that he was to tired come hour number 3. So the 3rd hour he had less spells but he was struggling much more to recover from them. 

They decided to place him on the SiPAP. This is what he was on before they decided to put him on the vent a couple weeks ago, but since he has been on it, he has not had any problems. We are really happy that he is tolerating being off the ventilator now and we ask you all to pray that he is able to stay off. 

This was during his transition phase. They had both machines in the room as they were deciding which machine was going to be the most appropriate for him. 

If you look at this picture, he is a weird position. His legs are all elevated. He started getting some swelling in his legs and honestly in this picture I can see the swelling in his leg. Yesterday the swelling was pitting edema (you could push on it with your finger and it would leave an imprint). They decreased his overall amount of IV fluids and are decreasing the sodium in his TPN to help him get rid of the excess fluid. His chest x-rays have been clear, not showing any fluid on the lungs. They said that this can be normal in prematurity and sometimes has to be treated with diuretics (medicine that helps get rid of excess fluid). Elevating his legs have helped drain the fluid out of his legs and they are also giving him 5 minute leg massages with each assessment to help decrease the fluid in his legs. 

Moving Quicker than we Thought! Day 22

Sorry no pictures tonight, the site is working very slowly and my images are not showing up correctly. His weight is still rising, he is at 1lb 10oz today. Holly held him again for about 3 hours. They have him at 3cc every 3 hours of feedings and is tolerating really well. His breathing has been great and we thought it was going to be another week before they would attempt removing his breathing tube but they are doing it TOMORROW. They started him on caffeine again today to prepare him, so pray all morning for a successful extubation. Goodnight!!

Rough Start! He is 3 Weeks Old! Day 21!

Weight looking good, he is up a few grams today. Feedings are still going they have increased him from 1cc every 3 hours to 2cc every 3 hours. Holly and I are both with him today, Joey was supposed to be going to jumpies today so I am sure he will be excited about that. We got to Calen really early today, much earlier than we ever have. We got here at 9:30 this morning. We got up early so that we could go to Wright Patterson Airforce Base in order to add Calen to my military dependents. I have been to the facility that does this stuff twice and both times I have waited like 5 hours because the place is always really busy. They are open from 9am till 1pm one saturday a month and this was that saturday. We left early so we could get there early enough to get in line so we didn't have to wait forever. We got there 30 minutes early, and then they let us in the building earlier than 9 and then got Calen added to the system really quick and I was back on the road at 8:59 this morning, I was completely done before the placed was supposed to open. So if anybody wonders why my facebook say's I love the Airforce that is why!!

Upon arrival Calen was laying on his side in the incubator doing all the things he is supposed to be doing. Wasn't a few minutes after that his alarms started going of because his blood oxygen levels were dropping and then his heart rate started dropping and there was nothing stopping it, he just kept declining, normal he comes back around with some encouragement or manual bagging, but nothing was working. They called in the Respiratory Therapist (the ladies in green) they decided to pull out his intubation tube thinking that it had come dislodged, turned out it was full of mucus and it had finally fully closed off the tube from air passing through it. There is really no way of knowing this without pulling the tube so it was great that they did. 

They quickly got a new tube placed and then confirmed it's placement (the nurses listening for equal breathe sounds) the RT continued bagging him to catch up his breathing, he went without much oxygen for probably 2 minutes, I mean by the time they had the new tube in he was down to like 19%. I definitely cannot say enough about them, they worked so well together, everybody was calm and they had him all fixed up in no time. 

After the new tube was in, they suctioned him out with a french catheter to get way down towards those lungs and clean his airway out. After that he was of course in a really bad mood, they got him all settled back into the incubator and tucked him all in so he could rest and warm up as he had lost a few degrees in the process of being out in the open. 

Here he is with the new ET tube in place and him breathing a whole lot better. I almost think this event was good. He has been having a lot of breathing trouble even since he has been on the vent and they couldn't really tell why, well it could have been because he was working off the reduced work flow of the vent because his tube was clogging up. Since the new one has been in, he hasn't had to may issues with breathing or heart rate drops so hopefully he will start coming back around this next week and they can take the tube out . 

 They had to shoot a quick xray to confirm the placement of the new ET tube. We had to leave for a bit while they did this. 

The doctor came in today during medical rounds and talked to us. We asked about the blood cultures and the antibiotics and he said at this point that they have had no growth on the blood cultures which is good, they continued his antibiotics due to not really knowing if he was infected or not , he has 3 more days to go on the 7 day regimen so they said they would just finish them. There is talk that they might try to extubate him this coming week and get him back on the SiPAP or CPAP but there is still a lot of uncertainty in that. For the time being I hope all together with the tube changed and the antibiotics working at there peak that we start seeing some large improvements. 

Really happy that he is stable enough to be held again. Holly is doing really well, she has been holding him for almost 3 hours now. She had to skip lunch to do that but she was more than willing. They tried something a little different today. Normally the nurse just opens the side of the incubator and pulls Calen out and places him on Holly, the nurse today raised the top of the incubator up and dropped the sides and then just let Holly pick him up and then sit down. It was much better, they didn't have to unplug a bunch of hoses and he rested a little better on Holly since she got to arrange him while standing up.  

Altogether a decent day. I am slightly upset in that I had my heart set on a Big Mac Extra Value Meal for lunch before I miss out on the $3 deal but since we got here so early, we didn't get to pick up lunch prior to coming. Oh well maybe another day! Hope everyone has a good rest of the day, is it still raining? 

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!