Geesh Lots to Talk About! Day 106!

6 pounds

Look at this boy he is 6 pounds. Thankfully his eating patterns are still allowing him to gain weight steadily so we know he is getting the nutrition that he needs to grow up. There has been a lot of talk and a lot of plans in order to get him out of the hospital and on his way home and that is definitely our goal. So feeding's have been a pivotal part of everything that is happening here. He failed on the Dr. Brown bottles and nipples, he moved from that to an evenflo system which was even worse, and then they put him on what they call volume feeders that are only available in the hospital, we cannot buy them, but he was so successful on them. He went from taking 20's to 30's to 60's in ml of volume, it was like day and night. They said that since he was tolerating those that the closest thing to them was playtex pro vent's so we went out and purchased a couple of those to test them. He took them today well, he took 55 ml and 45 ml while we were visiting with him. He has to be consistently successful on them for 48 hours before we can consider the bottle and nipple combination good enough for him to go home on. 

On Friday I felt like we were kinda running in place. I mean I know that Calen is close to coming home but nobody had actually came in and talked to us about a plan to get him there and what we needed to be prepared for when he does come home. We asked if we could talk to the doctor and he happily came in and talked to us for a while and gave us the whole layout of what to expect and the plan at this point, which was great it really cleared the air. We talked about a possible discharge date and what we will need at home. Once the holiday is over and people come back to work on Tuesday then we just need the seal of approval from Occupational Therapy that he is eating well. If the feeding is good then the other concern is whether or not he needs to have surgery before he comes home or if they are willing to wait a while. I am in support of surgery before home because I just want to go home and stay home. Ohh the surgery, he will need to have inguinal hernia surgery. He definitely has one and it is currently easily reducible and it may stay like that but there is no doubt that surgery will be needed because there is to much abdominal pressure on the hernia to let it heal it's self. The surgery will be done at Children's hospital, hopefully just in Dayton, maybe Cincinnati not really sure. Doctor asked us if we are comfortable with taking him on oxygen and sleep apnea monitors and medications and we said we were, we will try to get the oxygen company to our house this coming week in order to get the training on all the new equipment that we will need. This came to a surprise to me but you don't actually have to take your child home on oxygen or medications, they will keep them admitted until they come off of all those things if the parents so choose, I really couldn't believe that but some people do that.

 

Me and Calen doing our normal sleep sessions. 

We started to put Calen into baby swings. When we leave at night we have been putting him in the swing and turning on his music therapy. We hope that it helps him sleep good and relaxes him. It plays an even bigger role though in determining that he will be able to sit in a car seat. The position that they sit in the swing and the car seat are similar. He still needs to have the car seat test, which he will just need to be placed in his car seat for 1 hour and ensure that he does not have any vital sign trouble. Due to the fact car seats are not well designed for premies there can be an issue with there neck being out of line and restricting there airway. We think he should be fine because he is up to 6 pounds and he tolerates the swing well. We are hoping that maybe Sunday or Monday we can get the car seat test knocked out and then we are hopeful for a Wednesday discharge but it could be later than that , we definitely do not know for sure. They want us to come to medical rounds Sunday morning in order to possible get a definitive discharge day, we will be heading there for medical rounds in the morning, Grandma Dot Birthday party is tomorrow night. 

I thought I had so much more to talk about but that might be it. His eyes are fully matured now and we don't have to worry about seeing an ophthalmologist for another year. He has possible hearing issues in his left ear that we are going to follow up with out patient. All of Calen's medical records are being transfered to Dr. Horn our pediatrician, we will have to see him within one week of discharge from the hospital. It is going to be very busy for us once he comes home, at least for a while it will be. 

Holly and I are both healthy and well at this point. We are excited about the summer and ready for the weather to get nice again. We have been using every nice day outside and we have been able to keep the lawn work up and we have even got our garden fully planted. 

Night everybody. Hope everyone is doing well!!!!!

Tubes and Car Seats! Day 103!

5 pounds 13 ounces

Well I think they are saying that Calen is just been here at the hospital far to long so they are crash coursing him now in order to get him out of here or at least know for sure what they have to do so they can get him ready for home. They decided yesterday that they would go ahead and remove his NG tube. It is official out and he just eats when and how much he wants and we just need to continue to monitor it and ensure that he is gaining weight by doing this. He is still not taking 100% of the volume but he is at least still at the 85% mark so he is not have any regression at this point. Holly is getting ready to feed him now, so hopefully she will be able to get a full bottle down him. 

They made the attempt today to take him completely off oxygen. It didn't get past 10 minutes though before he was desaturating a lot and they were forced to place him back on oxygen at his regular rate of 0.25L/min. We didn't know they were doing to do this, they just informed us that the had attempted him today. This is reassuring the need for oxygen at home, we are going to have to make plans for the Fidelity company to come and get his oxygen set up here in the next days. 

Help Me Grow! Day 101!

5 pounds 10.8 ounces

So I went back though the calender to count up all the days we have been in the hospital since the day Calen was born and I had to correct my day count in the subject line. Wow 101 days, crazy!

Calen is continuing to improve with his bottle feedings. There was a bit of a change on his bottle feeding, they changed him over to a evenflo bottle with a formula designed nipple. Holly has completely quit breast-feeding at this point. She wasn't even coming remotely close to making enough milk to supply for him and there was the improvement when she was on medication but once she took the medication she was so tired that she wasn't able to function. So bottle it is. He is drinking, he is showing improvement. They are making the recommendation tomorrow to remove Calen's NG tube. They feel that they could pull it, let him eat the amount's that he wants to eat and wait and see if he gains weight. Sounds like a awesome idea to me so we shall see what they decide to do. 

We went to a program tonight called Help Me Grow. It is a state wide program that runs via independent components in each county. They offer help to people that have children with needs get public assistance and seek all available programs and resources. It was an interesting program and we got free food and we spent about 45 minutes making scrap book pages for Calen's Help Me Grow album. The book they provide us with gives you a guide to how to keep track of all of Calen's important information so it will make it easier for us in the future when we are visiting doctors appointments and what not. 

The Drive Home!

It Just Takes Time! Day 98!

5 pounds 9 1/2 ounces

So Calen is still working on sucking down those bottles. We came in today and the nurse had just started to give him his bottle. I took over and it took me 30 minutes and a lot of encouragement but I was able to get him to drink the entire bottle. They looked up his averages and he is 85% on his intake. He does have to be  at 100%so he is getting closer. 

I took the time through his feeding in order to burp him. We have discovered that if we burp him through out the feeding he takes the bottles a lot better. Even with those fancy Doctor Brown bottles he still gets all that air in his tummy. It was funny, I worked so hard to burp him and he didn't and then I handed him up to Holly and all of sudden a nice burp came out of the little dude, he was being particular. 

That's it. That is all that is going on. We are just working on this feeding business and then be prepared to bring him home. 

Few Changes all Pointing in the Right Direction! Day 96!

5 pounds 7 3/4 ounces

They made some changes on Calen's oxygen, they took him off his oxygen blender and went to straight 100% o2 off the wall. They have him at 1/4 liter. This means he has a lot more oxygen concentration flowing but there is no more positive flow going. This is exactly what he will need to be on for the transition home. I am not sure if this sparked his appetite or if he was going to do this without any oxygen changes but so far today he has taken 2 full bottles in a row. We were so super excited to hear that. Everybody keep your prayers going because the end is close, we need to rally for the finish line now please!!!

 

Old mixer system that they have now replaced.

Simple basic oxygen supply with some water to help moisturize it. 

Hangin with Momma!!

Arcanum old fashioned days tonight. I have drill this weekend. Talk to you all on Monday!!

Sittin in Neutral! Day 95!

5 pounds 7 ounces

Mr. Calen what are we going to do with you. Still living the high life here at the valley. Calen is still not really progressing on the bottle very much, he is taking two full bottles a day at a max which would be 1 during the daytime and 1 during the night time. That means he still needs to drink at least 6 more full bottles a day without needing someone to pipe it down his belly for him. Seems like a lot of work for such a tiny baby but that is the make it break it deal to get him out of here. His oxygen needs are still present, the concentration is not changing when it actually comes to the amount of supplemental oxygen he is receiving which is 30%, 9% more than normal air around us, but they are making decreases on his liter flow, taking away that constant positive flow and making him work that much more to expand those lungs. He is down to 1/2 a liter flow so this is fantastic. Since we are working into the extended care package here at the hospital we might get to see him off oxygen before leaving, we shall see. 

There was a little rumor that we heard about yesterday and that was if he was to get to 43 to 45 weeks and was still needing to be in the hospital then they would have to transfer him to Children's. Really not super exciting news, I really think a change of venue would be super stressful on us, but there is a lot of optimism that we should not end up in that position. 

We now have some mature eyes. The last eye doctor visit showed that they were fully grown and good to go so now he doesn't have to have his eye's checked out again for another year. WooHoo, thats another landmark down. His hearing, I am not sure if I have talked about this before, but he was failing his hearing test in his left ear and passing in his right, they said they feel it was due to him crying and being very upset, but we have to followup outpatient with an audiologist to have that checked out once he leaves the hospital. 

I was working on burping him, if I hold him like that though he tends to fall asleep. 

Well then a lot of times if I am in that chair I fall asleep too!

We learned today that there is possibly an inguinal hernia that has developed on Calen's left side. It was not  noticeable or palpable today but there was just a note that someone had felt there was a possibility of one. It could have just been a pocket of fluid or something but we really don't know. That will just have to be simply monitored and if he really did have one it would have to be surgically repaired so lets hope for no hernia. He is still on lasix everyday with no potassium replacement and vitamins and I think those are the only medicines.

 

Mom and Calen sharing some smiles.

Today is bath day, we love bath days, get to unhook all his gizmos and he smells so good afterward. Today he was extremely flatulent and had several bowel movements, one of which was on his bath blanket, luckily it wasn't projectile or momma would have needed a new shirt. Maybe if he clears out his bowels he will start eating a lot more. 

Calen stopping to pose during his swaddle bath.

Mom, daytime primary nurse Stephanie, and Occupational Therapist Marie. Marie came in to follow up on his neck to make sure he is looking both directions which he is so it was a quick and simple visit. 

Another Day! Day 92!

5 pounds 3 ounces

I was so proud to say yesterday that we have made it to 5 pounds. This is a milestone, this is when people get ready to take there babies home. We have went multiple days lately preparing to visit Calen and expect to hear some new plans for Calen but for over a week now at least there has been no real changes on him at all, we have kinda plateaued. I am honestly not complaining about this, because no news is good news in most places. He is healthy, he is getting stronger all the time and he is becoming more and more like a real full term baby, which makes us very excited. 

We are still all over the map when it comes to his eating. He takes all of his bottles one time and the next time maybe half is we are lucky. In the overall though he is making increases, just not as fast as we would like because we are getting ants in our pants. Eating is the only obstacle to complete though, I could be wrong about that, but I am pretty sure. His oxygen hasn't changed at all, we are still sitting at 1 liter of o2 low mixed to 30% on room air. So I don't know if there is any plan to change this at all before going home, as we are making some understanding he will be going home on o2, so we shall see. 

So on Friday night Joey stated to get a fever and was acting kinda off. Gave him some Motrin and he went to bed. Woke up Saturday to Joey still feeling lousy and he still had a temperature. We were able to make an appointment at Dr. Horn's, greatest pediatrician around, they are primed pediatricians in Huber Heights in case you are looking for one. He has strep throat again. So he got stated on Amoxicillin and we all stayed away from Calen then on Saturday. Holly went back Sunday as I had work to do and then we were both in to see him today. Oh and Joey is doing much better, in fact he is rather mischievous. 

Along with everything stated above we also gave him a bath today, I love giving him a bath, we give him massages and he really likes that, and the best is that he stops stinking. He gets a bath every 3 days and between dirty diapers and more so formula he really works up a stink. 

Alright so that is all the info. Try to keep you posted. Hopefully we will hear some awesome news of going home really really soon. 

Getting Pretty Close! Day 91!

5 pounds 1 ounce

Yeah we made it to 5 pounds. He is just packing on the weight now. The bottle is really working out more and more at this time. He is increasing his intake everyday. He is taking 40 ml every 3 hours well and we have discovered that it helps to burp him during the feed in order to get it all down. He just needs to keep it up and he will be out of there. It has been a few days since I have been at the hospital and I should be back Monday and will get new pictures up. 

We are Catching UP! Day 86!

The look he was given right here is hilarious. I am not sure if it was because mom was kissing him or i was taking his picture, who knows, but it was a great photo either way. 

Thank you all for your thoughts and prayers and for the many people who have messaged me with plans to help out. We did receive help, majority of which was from our family but we have caught up many of the task that needed to be completed. I actually posted my stressed out post on Friday, ended up making a trip to Lowes to buy what items we needed to complete Calen's room and then was just going to wait for my next day off in order to work on it. Well I ended up getting off work on Saturday which worked out great as I had purchased everything I needed for his room and now I had a day to do it. Holly and I both did not go to the hospital to see Calen on Saturday and we worked all day with our Aunt and cousins and by the end of the night we had a completed room. It was so exciting to have this project completed and probably not to much of a moment to soon. As for the mowing deal, we got that done too. Family member came out and mowed the lawn today and tonight I actually fully completed repairs on my mower and so I can mow again myself, yeah for that, I actually forgot how nice cut grass is, it was a pleasant site to come home to. I have a team already lined up to work on the roof issue. Normally lots of people would be needed to work on a roof, however, our roof is fine except for 1 sections which is probably about 8 foot wide, 8 foot long, that is all that we are going to be replacing, so at this point I have plenty of help with that. My car's are also not a problem any longer, luckily when we bought the tires last Monday we bought insurance on all 4 tires, so we got a brand new one for free, that was very awesome. 

This is his room, it still needs a couple more pieces of trim board which I plan to pick up tomorrow when I am returning a bunch of stuff I don't need anymore,  and then we need to just put the changing table and what not in it, then it should be ready for him. 

4 lbs 11.75 ounces

Weight is doing well, he is really right on target. Progressing quickly to that 5 pound mark, not that it matter's to going home, I just like the idea of every pound he gains. His overall weight gains though means that he has much more energy, is much more able to stay awake for important task such as eating with breast feeding or bottle feeding. Holly bottle feed him today and he drank half of the breast milk, which was 20 ml, they have recently increased his volume to 40 ml every 3 hours. He making strides in his eating patterns, just need to work a little more with him. 

Holly holding Calen up over by the window. He had just eaten and she was working on burping him. 

Holly was not nearly making the breast milk to keep up with his needs though. She had started to take some herbal supplements which really have had no real effect on her production volume. She talked with her OBGYN and was started on Regalen. The Regalen has created some unwanted side effects to Holly, such as making her arms feel very heavy and tingly, she says she feels like she needs to punch something ( I do keep an eye on her when she is next to me), but worst part is that she becomes extremely tired, almost incapacitating. We hadn't seen any changes in her breast milk production for a week and then today I was like well it's not helping and you feel terrible, so stop taking it, all of a sudden she pumps this morning and gets over double her normal supply, it was like crazy. The trend didn't continue through he day though, so we talked to the doctor about making some changes and he said we could continue and stop in 1 week or just decrease her dose while she is on it, so we are moving to 5 mg twice a day, during awake hours and then taking 15 mg at night prior to bed. We shall see how it goes with some more time. Holly's health otherwise is fabulous, her blood pressure's have been perfect and things are all well. 

Calen looking pretty sleepy. He did have an eye exam today and his eyes are stable. They stage him actually as great ad maturing normally, w have learned though that depending on which ophthalmologist comes in dictates how well his eyes are, they all have a different opinion, it's very interesting. 

Calen has made it into a crib, it is really cute. His room is so much larger to now that they have removed everything from it, no more feeding pumps, IV poles, isoletts, just a little crib and him. Temperature wise he is doing fantastic, after being out for 2 days in the crib and with the room temperature set to 75 degree's he is still holding temperature's of 99 degrees. 

So external swelling is much better, they had him on Lasix 1 time a day though for some time, yesterday they have increased him back to twice a day Lasix because he is experiencing some pulmonary edema. The fluid on his lungs does make him require more oxygen which they are mixing to 30% on non high flow oxygen, but with that he does really well. As far as I understand at this point, the pulmonary edema is being caused by some immature lungs and other constrictive lung issues, I hope this is true because the lungs have a solid 7 years to mature and fix all there own problems, if it is being contributed because the heart then um that doesn't really repair it self, so please pray that there is no problems with his heart and that we are only dealing with some minor lung issues. This Lasix ordeal though has it's own set of problems, particularly that it depletes his electrolytes, potassium can be severely depleted and cause heart problems (they have him on a potassium supplement) and it can leach calcium from the bones, as they don't have enough in there blood to prevent the body from using the bones supply to maintain blood levels. This will likely slow development of his bones, keep them kinda soft for some extra time, probably no super long term effects though. The nurse today said that if a baby goes home on Lasix they sometimes are on it for up to a year, that is a long time so let's pray for  a quick run on the medications. 

Altogether we know that we are moving in the right direction. Home will be here before we know it. I cannot wait for the day so that we can start the experience with the comfort of our own home. Thanks for sticking with us all this time, it means a lot knowing that so many people are keeping up with the journey and most of all praying.