Stable!Day 10

Calen's weight shows some increase today. I really didn't know why his weight was down to begin with but I think I learned the reason why today. Yesterday they checked his caffeine level and it was a bit high, so today they have decreased his caffeine level, but I think it is the caffeine that causes his weight to fluctuate,  have no idea the rationale behind this but that seems to be the reason. The caffeine is given to him intravenously in order to keep him stimulated to breath, well at least aids in that effort

. I was hoping to be here when they gave him blood but we missed it, they ended up giving it to him through the night. So now that the blood is in he should be able to resume getting feeding's of breast milk tomorrow. 

So Calen apparently has dad all figured out. The first thing I do when I come in his room is take a picture of him and the above is what I got from him today. I mean come on is he really going to be that camera shy with me. It was super cute though, I am pretty glad he did that. So if you look at the bottom of the picture right beside the orange tube there is a little light blue pad with tape around it, that is his IV. They had to start a peripheral line for the blood administration, it's a 24 gauge needle that they started in his right arm. I learned that the catheters to the PICC lines are just to small to use, nor can they draw blood from them because they will get clogged up to easy. 

Here he is again. He was letting his arm drop down giving me some access. He is such a strong baby. He continues at the same settings on his SiPAP. They are pulling him out of the incubator right now to do the kangaroo hold with Holly. Today is his bath day so that may dictate how long she gets to hold him because of temperature issues. We will see as time goes by. Holly is doing most of the holding, He needs a lot of heat and a place to cuddle and I just can't easily provide that, plus I can't hold still for more than 2 minutes, so it is really difficult to hold a baby when he is connected to a bunch of stuff and you can't move or take a break, cause a break means back in the incubator and once he is back in he is not coming back out, it takes like 10 minutes to get all his cords situated and his machines in place to move, plus 2 staff members, it a lot of work. Of course for us, it is all worth the effort. 

The sonagrapher who came in to do Calen's ultrasound, she is the same one who did his first one. They were doing the second one to recheck his ductus arteriosis that was small and not a problem on the first ultrasound, but he has developed a more significant murmur that they are investigating. I will hopefully post tomorrow what the results are. 

The three of us at the hospital with Holly holding Calen. It's his first family picture, unfortunate at this time Joey can not join us, I thought about doing one where I photoshop him into the picture. 

Goodbye everyone, enjoy the ice falling on Darke county!

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Just Got on Board the Roller Coaster! Day 9

Calen's weight is down today. There has been several new changes that will have taken place or will be taking place tomorrow with Calen. Just to get started, he is still holding up very well and he is still doing most of his own breathing and we continue getting to hold him, and we praise God for all those things. 

So we got to talk to the nurse and doctor today about what is new with Calen. Two days ago I posted that he was having some breathing issue's that were affecting his heart rate and they had been monitoring it. I called them Saturday morning because we were not going to make it to the hospital and at that time he was continuing to have some breathing difficulty and then I called again at like 1230am on Sunday and they said the breathing problems were still continuing but at that point no changes had been made. So we made it back to the hospital today around 3pm and the above picture is what we saw when we got to him. They are preparing him for space travel, okay maybe not but it is a bit more of a complex bipap machine that I had never heard of called a SiPAP. I looked up a little information on and it and they told us about it, essentially it is a non-invasive (not inside him) breathing machine that let's him breath as much as he can on his own but when he stops breathing adequately which would normally drop his heart rate, it kicks in and gives him breathes, right now set to 10 times a minute. This is an in between measure from the CPAP and a ventilator. It has really been helping, as soon as he stops breathing and his heart rate goes down, the SiPAP gives him a push of air down the mask that is sealed around his nose that causes his lungs to expand and his heart rate goes bak to normal and it kinda gives Calen the realization that he is not breathing and he picks back up on his own. They took his hat off so the mask straps would fit better so I like being able to see his hair and his eyes. He is going through some testing now, so they ensure that they are not missing any reasons why he would be having breathing problems outside of him just being tired. They are checking his blood with a complete blood count (CBC) a couple times a day, they are looking for a possible increase in white blood cells (WBC) to see if he may be getting an infection, so far nothing is showing up, his hemoglobin (HGB) , oxygen transporters, to see if they are down which would indicate the need for a blood transfusion. His HGB is down on the low side, so they are planning to give him blood transfusion tomorrow. This is another thing that is extremely common with neonates at his size so it was just something that was coming. The doctor said that he is starting to have a audible heart murmur that has definitely changed in the last couple days. They are planning to do another ultrasound of his heart tomorrow to check on his patent ductus arteriosis (PDA). They said the murmur could be there because the hole is getting larger or it could be there because the whole is getting smaller and it is causing some turbulence through the hole. If the ultrasound shows a smaller hole then great, if it shows a larger hole, treatment starts with giving him a medication called indomethacin to attempt to close the hole up. 

The machine above is the SiPAP. From what I can tell this machine is only used on infants with respiratory disease's or premature babies with inadequate lung function. It seems to be doing the job for Calen so we are really happy about that. I really want him to stay off the vent if he can work through all of this. 

So this is Calen's feeding pump. This is what has been pumping Holly's breast milk into Calen's belly. The feedings have been going great, they have had nothing but good increase with them. The problem is when his blood counts are low (his HGB low, which it is) his body will start to shunt blood away from non important organs to vital one's (brain, heart, lungs, kidney, liver) this will result in less blood going to his extremities (arms,legs), and stomach. So with that the feeding pump is not running now and the are not going to resume feeding's until they know his blood counts are back to normal, perhaps 24 hours after his blood transfusion. If they were to continue pumping milk into his belly and his body was shunting blood away from it, the milk would run a great risk of not being metabolized and causing Necrotizing Enterocolitis (NEC). NEC is a bacterial infection that infects the lining of the stomach wall, this can kill the tissue in the stomach and cause issues with the babies intestines. Other plans this coming week will include an ultrasound of his brain, this is standard among premature children and it is to check for any bleeding on his brain. So far there has been no signs of that as of now, but it is a routine test that will be preformed. 

We really like all the staff here at Miami Valley. The nurse in this picture Stephanie is one of our favorites so far. She is awesome, she explains everything to us right away, she let's us do as much as possible for him ourselves so we get time to touch him and be close to him. She is very attentive to our needs as well while we are here. She is starting to work on taking her GRE so that in 2012 she plans to start the Neonatal Nurse Practitioner program. Holly is holding Calen, you just can't see him buried under a bunch of blankets. 

 I took these pictures while Holly was holding Calen. He had his eyes open for me. He does so well when he is on Holly, he doesn't cry or anything, he could probably lay there all day. I got to touch his head since he doesn't have his hat on now. 

Another one of Calen once he was resting comfortably. 

Busy Day. Joey's Birthday. Day 8

Today was good and bad all at the same time. The bad first though. We were planning on leaving early in the morning to go see Calen because we were going to be having Joey's birthday party today. Since Joey was having the party today we were pretty sure he was not going to be getting a nap, so we wanted him to sleep for as long as possible so he wouldn't be grumpy for his party. In order to do that we needed our sister to come over and stay at our house while we visited Calen. The plan kinda fell through so we were not able to go to the hospital today. It is the first time Holly hasn't been there but in a way not terrible because she desperately needed the rest. Our parents Harvey and Lynne went to the hospital today and visited him though, so I am glad someone was able to be there for him. I called the nurse to ask how he did and they said that the problem he was having last night with his heart rate dropping he continued to have problems with. They said that babies at his weight really always end up intubated and they feel we are heading that way in a couple days. He just doesn't have the muscles to keep up working so hard to breath and he just might need a break in the near future. So please pray for him to stay strong and continue to breathe on his own, I hate to see him on a ventilator when he has been doing so well, on the other side we were told to be prepared for a roller coaster ride, but we promise we are staying optimistic. Other than that read below to check out his weight, he is doing awesome. 

Do you see what I see? In 1 day Calen has gained 2 oz. He is up to 1.55lbs. He is only 0.5oz away from his birth weight. So please continue to pray for Calen, keep him growing, he is really starting to need the muscles to keep going strong. They were able to once again increase his breast milk infusion, he will be getting 3ml of breast milk every 3 hours now. They were able to shut off his bilirubin light again, but this seems to easily change day by day.

Joey is 2 today. Horray!!! We had a good time at his party and thank you to everyone who made it happen. Holly and I really just couldn't organize it but because we have an amazing family and friend support system it happened. Thanks to our sister Susan for your tremendous help and support. Susan watches Joey so we can go see Calen, she makes dinner, she drives Holly everywhere. She does so much for us, despite the grief we give her we do truly love her and appreciate all that she does for us. Holly's parents for being there for us to watch Joey and to be with Holly as a support system. For helping get everything together to get Joey's party going. The Mears, all three of you girls, you are all so busy yourselves but continue to make time to make sure Joey has a place to go when we need to do something and taking care of Joey's party, and the Wootens, you are such awesome friends, without you guys there are many things we would never accomplish. Everyone one of you have helped us some many times and please know that we are so grateful of that and we will never forget your support. 

Tomorrow (Sunday Feb 20) Holly and I will be at the hospital around 2pm or so. We plan to spend pretty much the entire day there. If you would like to visit with Calen please drop me a message or call me at 937 459 6859 and let us know, we welcome those who would like to visit. Goodnight Everyone. 

Daddy Gets His Chance to Hold Calen Day 7

 After a very long day at work I finally got to Miami Valley Hospital at like 9:15pm. Holly's sister had dropped her off there and I was then going to take us back home after visiting with Calen for a while. I did get my chance to hold him tonight which was so awesome but I will talk about that when I actually post this blog tomorrow. I am very sleepy it is pushing 1am and we are getting up early to head back to Miami Valley because we want to see Calen and tomorrow is Joey's 2nd Birthday, so we need to get back ensure that everything for his party is set up and spend the day with him. I will post today's full post as well as tomorrow's from the NICU sometime late morning.

 He is up 0.5oz today which is awesome, we are starting to head in the right direction. He is currently receiving 2ml of breast milk into his feeding tube every 3 hours. The breast milk pumps in over 2 hours then it stops for 1 hour, the nurses aspirate the fluid from his stomach to see if it is being absorbed or staying in there to determine if feeding's should continue or be held. At this point he is doing great and they continue to increase his dose.  

I got to hold Calen for the very first time. Holly has been able to hold him twice so of course I was pretty jealous. I got my self all ready to go and the nurse put him on me. I am apparently not hot enough though cause he cried several times, he did take his pacifier a couple times. He needs to maintain temp while out of the incubator, at least 97.5F, but when we checked his temp it was 96.9, so after only about 15 short minutes he had to go back into the incubator. It as okay though we will do it again, hopefully Sunday. 

Calen has been super strong all these day's, he will be 1 week old tomorrow. He has not required a vent, which is so awesome. Right when we started to pack up to head home he began to have periods of bradycardia (slow heart rate). It was dropping into the 90's he should be around 160. They tried arousing him several times to stimulate him to breath deep and therefore recover his heart rate. It was working extremely temporarily and so the nurse started to suction out his nose and then they deep suctioned him to pull up any secretions down low in his airway so that it would increase his ability to breath. It worked, his heart rate was coming back up and staying up as we were leaving. Such a simple problem, to bad he can't just blow his nose. They also placed him up on his side, to help raise his heart rate, take some of the weight off his lungs. He remains stable and his weight is actively rising, we are extremely excited about that. 

Daddy First Day Missing Out Day 6

Today is the first day that Daddy was not able to be at the hospital with Calen. I had to go back to work. Mom went back with her sister and mother. Her sister was in charge of the camera, and she took my camera which was not a good idea because working it can be a tad difficult for someone who has never used a DSLR, so we are not posting any pictures from today, I did a training session with Susan tonight in order to prepare her for better pictures next time she is in charge of the camera. So in leu of this I am jumping back a few days to right before Calen was born. 

Well we experienced another small weight loss today. He is down to 1.3 pounds. I am sure actual weight gain is going to take a while but we are already getting pretty anxious about it though. He is still on TPN and Lipids through his PICC line and he is tolerating the small doses of breast milk that they have been giving him through the OG tube. They have officially starting to give him 1ml of breast milk in his OG tube every 3 hours now. They placed just a tad bit of milk in his mouth and they said that they are doing that so he starts to get used to the taste of his mommies milk. Holly was able to give him a bath today, this was her first time that she got to do the entire bath on her own. Calen will get full body baths every Monday and Thursday. 

 

This was on Saturday in the Perinatal Intensive Care. This was probably no more than 1 hour away from the c-section. Holly was feeling absolutely miserable and in order to keep anywhere near calm it required constant washing of her face with a cold wash rag. She was sick and was on magnesium to prevent seizures, and extremely scared so with all that together it made for a very difficult moment in the day. Most of our family was present at this point and with me beside her and all brothers and sisters also next to her we waited to get wheeled down the hall to the operating room. The room was extremely tense at this moment, everybody had the lingering feeling of the prognosis of our child, so we just had to be by her side to comfort Holly.

We are very goal oriented, so I was glad to see that Miami Valley Hospital invested in this awesome dry erase boards so I could get my goals written out, at the point of writing this, it was defiantly a "short" term goal at this point and it quickly became a "long" term goal. When I look at the situation now that Holly and I are out, I am actually very happy Calen is there because I am so overly pleased with the staff and care he is receiving at MVH, I would much rather see him grow in a proactive environment and be a healthy child then see him develop incorrectly, we must protect his future as much as possible, and we are so thankful to God and those he has appointed to ensure that happens. 

Daddy looking good prior to heading into the OR for Holly's C-Section. I had to sit in the recovery room and wait until they had her prepped and draped so I had some time to take a super cool self portrait. 

Thank you God for giving us individuals who are skilled to take care of us when we are sick, and safely bring into the world those are not ready too. Their steady hands save lives and have given us an amazing gift. 

 The doctors at work, I started taking a lot of pictures in the OR eventually cause Holly had a regional block and not general anesthesia but she still fell asleep. Holly soon awoke while still in surgery and she was very cold, which is just a normal side effect of being in a cold OR, and blood loss, and medications. The Nurse Anesthetist was very sweet and laid a warmed Lactated Ringers bag against her neck and face to help warm her up. Genius Idea.

I will be back to the NICU tomorrow night once I get off work. I will take more photographs as available. I know most of you just want to see that baby. Continue with your many prayers, the told us that the NICU is 2 good days and 1 bad, it's a roller coaster ride. We have had nothing but good day's since he has been out, and at this point seeing his progress I am not sure if Holly and I could handle a bad day. Thank you everyone.

There will very soon be a different way to help support Calen and our family finically. Team Calen tee shirts are being screen printed now, hope to see them next week. We will be selling them for $8 each. I will post a picture of them when they come in. Goodnight!!!

Mom and Dad Heading Home and a Special Surprise Day 5

Holly and I are heading home this afternoon. She has been discharged so I feel that this is when things are going to be getting hard with travel and what not. We didn't get into the NICU until about 1:30pm today because of the discharge process and they wanted to make sure Holly had her blood pressure checked before she left because she is on an increased dose of her medication. The nurse hadn't done his assessment yet so it worked out for us and I got to do his diaper change and take his temp again today. These things seem so small but it is one of the times when you actually get to reach in the incubator and touch them so it is nice. 

His weight remains unchanged today. Hopefully here soon we will see some positive trends on this thing. I did learn that they weight him at 1200am daily so hopefully I can keep track of it everyday.

This was him and his room when we came in. His incubator was covered and lights were turned down. This was a good thing because this means that his eyes are uncovered because his bilirubin light has been removed completely. Now when we see him we will be able to see his eyes. He cannot see anything out of them, his retinas are hardly developed so from what I understand he is essentially completely blind. They said full term newborns can really only see shadows so it will be sometime before his vision becomes intact.

So today he was a little stinker. He whales his arms around a lot and takes out whatever objects that stand in his way. We were supposed to give him his 1cc of breast milk down his oral gastric (OG) tube, but if you see the orange tube in the nurses hand (her name is Karen) this would be his OG tube that he pulled out. The nurse did reinsert it and at this point we have not given him his feeding and as you read the next part you will know why we didn't give it to him yet.

Yes, you are seeing it correctly, mom is getting to hold her baby. He was still a little underweight by about 150 grams to be out without a doctors order but the doctor approved so they got everything set up and out he came. They are doing kangaroo care, skin to skin contact. He is tolerating it extremely well, his body temp quickly increased, his breathing and sats were checking out great. Of course mom's heart was racing too as she gets to hold him.

Pictures of this moment are a bit difficult to get as he has to stay on the CPAP and he has to be heavily covered up. I was able to get super close to him and his head is so tiny, I mean it is unexplainable, I never really was able to grasp the size of it until he is right there a couple inches from you. He started off a bit reluctant to sleep as he squirmed around some and was making some noises. He stared to fall right to sleep though within just a few minutes. We learned something about him though and that was he sleeps like his mother. He likes to hold his mouth open. Probably not his fault, gravity kinda effects him pretty harshly however I had to close his mouth several times and then ended up putting a towel under his chin so that it would hold his mouth shut cause when his mouth is wide open the CPAP blows all the air straight from his nose out his mouth which makes his heart rate quickly drop. Nothing a little towel couldn't fix so he is good to go. 

Mom and Calen enjoying some 1 on 1 time together. Holly gets to hold him as long as possible, well as long as he is tolerating it, which he is without any issues at this point. They have been doing it for over an hour now and Mom and baby have fallen asleep, it is so sweet. 

As long as Holly and I are still feeling good when we leave here we plan to go to outback steak house for our anniversary dinner, pretty excited about the change of pace. Then it will be off to home to reorganize things and best of all spend some time with Joey as we really miss him. Check back late of Thursday, I will not be at the hospital tomorrow because I am going back to work (at a different hospital unfortunately) so Holly will have to take over the blog entry tomorrow. Have a goodnight. Bye!

Calen's Aiming High! Day 4

Good-evening. Sorry I am posting so late today. We had a positive day which with all the positives meant a lot was happening. So enjoy today's post. 

I am starting a new item to the blog. I will be posting a weight graph so that everybody can see how he grows. This will most likely be posted everyday as long as I have the new data to enter into excel that day. They always weight him everyday but they do not measure him so I will not be posting any of that information cause their just isn't any updates on it. He had his first decrease in weight today, which is fine, it is most likely related to a drop in water weight and now it will be time for us to start seeing upward motion. 

In the past days Calen should have been getting baths. However he was really having trouble keeping his temp up so they couldn't give him a full bath. They started out with his left arm yesterday and were unable to continue, but today he was really doing well. His temp was up at like 99 which they said was normal and the nurse was able to give him a complete bath and he tolerated it very well. So above is his bath check off sheet, all checked off. Yeah, no more stinky baby!!! More so, Yeah for stable temps, now we can think about holding him!!!! Ohhh while on the topic of cleanliness, Calen had his first bowel movements today. He had one early in the morning that the nurse said was good size and he had another prior to his 12pm diaper change cause I changed that one. So we know his bowel's are starting to work which is great news.

In the incubator there is a little doll. This little doll was given to us right after Calen was born. It is used to help condition Calen to smell of mom. Holly wore in on the inside of her gown for 2 days so that it would start to smell like her. Then it was placed in his incubator. When it was first placed in there they placed it over top of his eye's but have since moved it just into the incubator. It is a really neat idea and hopefully will help relax him when she first holds him.

So they left me alone in the room today and I was really curious as to what his heart and lungs sounded like so I stole a stethoscope and took a listen. Couldn't hear his lungs sounds for the life of me, everything is a bubbly in there because he has a bubble CPAP machine that vibrates his lungs. I could on the other hand hear his heart beat which was so cool to hear that little heart beat in that little body. On another great medical note they were able to remove his large bilirubin lamp. He is just down to the small white spotlight, so once again another great note about the day. 

Calen had his echocardiogram today. His nurse (front) and the echo tech (back) put him through the test. They were preforming the echo to check primarily for a Patent Ductus Ateriosis (PDA), a common heart abnormality that is more prevalent in premature babies. We actually forgot to ask this evening what the complete results of it were but the neonatalontologist that we had today Dr. Belcastro said right after the echo was done that Calen did have a PDA but it was very small and they would not being doing anything about it. They would check it again like 3 weeks or something like that to make sure it hasn't changed.

So somewhere throughout the day Calen managed to pee outside of his diaper but this had a positive side too it. Well a couple actually, one is that we know that his body is working and he is effectively making urine. The second great thing was is that Holly got to reach in and pick him completely up while the nurse changed his bed sheets. This was the first time we got to do something like this so it was really awesome, it made Holly really excited. She ended up getting to do it again later to weigh him, so hopefully I will get my turn tomorrow. In his left arm you may notice that their is a syringe hanging off his arm. He got a PICC line placed today. He priorly had an arterial and venous line in his umbilical cord but these were removed today and the new PICC is fully functional. They hooked up his TPN and lipids to it right after it was placed. This is a crucial step in us being able to hold him to continue to drop his risk of infections. It did take a really long time to get that thing in though, we waited in the family lounge for like an hour, but working with little people is a tough job.

The next great thing we got to do today was feed Calen breast milk. It was a trial day to see if he was going to tolerate it being in his stomach, and he did have to pass his meconium prior to getting it. We gave him a whopping 1ml of breast milk through his OG tube. Holly got to push it in. We spent a lot of time with him today and he did not have any gastric distention or spit up so it appears he tolerated that, tomorrow he will go to 1ml every 6 hours and once he is good with that after 24 hours they will move to 1ml every 3 hours and then it should progress from there. 

Holly had not yet got a chance to see Calen's eyes or top of his head yet. Since he was doing so well today his nurse took everything off of him so that she could see him. It was amazing to see what our baby looks like. He has a lot of hair already so we are pretty sure he is going to be just like Joey and have a pretty thick head of hair. He did attempt to open his eyes too, I don't think he managed to get them both opened up though.

In closing for tonight we would like to thank Katelyn Shellabarger, she is a student at the University of Dayton and she is studying music therapy, she is also a native of Arcanum. She provided us with several CD's that have a variety of music on them that have certain rhythms that when babies hear them it helps them generate better heart rate and breathing patterns. We put a CD player in his room and started playing the music while we are in the room with him. Thank you again everyone for your prayers and thoughts. God has been so amazing to us as everyday has been an amazing journey. We are going to be released from the hospital in the morning so Holly and I will be heading home. Tomorrow is our 3rd Wedding Anniversary, so we really have many things to be thankful for in our marriage.