Thursday, April 28, 2011

Swelling Finally Gone! Day 75!

3 lbs 12.75 ozs

So there is 0 doubt that he has lost a lot of weight, on the other hand it is amazing how good he looks now. A lot of his weight was associated to him being very swelled up. It was difficult to tell because the onset was so gradual and we were just used to him looking like that, but it is amazing how he looks now that the swelling is gone. They have been giving him lasix, which is a diuretic, helps pull off unneeded fluid. It helped his breathing out a lot too and they have been able to wean his o2 down to 2L flow and he is staying at around 22% oxygen. 



There has been some mild increases in his feeding volumes that they are zipping down his tube now, well actually we are doing it, we have to hold the tube normally to feed him, it can be a time consuming job. He has a tendency to have some spit up but it has been pretty mild and what is just considered normal spit up for any baby, even more so with Calen because we are putting air in his belly with the feedings. 

They were working on target practice today. It's giving Calen a chance to find moms breast and to be stimulated by the taste of the breast milk. He actually tried nursing a couple times today so I think he will catch on soon. 

We gave him his Thursday swaddle bath, that was nice and just today we got there and we kept him out of the isolett the entire time we were there. It is so nice to be able to get there, get him out and just hold and him and care for without any time restraints, really making everything feed normal. 



We went down today for a CPR class, they taught us how to do the basics of infant CPR and chocking issues, want to make sure we are tiptop ready to go before he comes home. 


Monday, April 25, 2011

Big Changes! Day 72!

4 lbs

You see it correctly, he weighs 4 pounds now. How awesome is that. It is really official he is really being considered a term baby and are wanting to really push the envelope with him and get all of his needed issues addressed, fixed, and give him the boot to home in the very near future. 

Changes that have occurred in his feedings at this point are one that he is up to 32 ml of breast milk, they are no longer delivering it over a feeding pump, he is now on gavage feedings and they are just pushing it in his belly by hand or gravity which ever is going to work over 15 minutes. He is taking this well, which means that after he has done it for a few it will be time to breast-feed. They have to get him out of the isolett every 3 hours in order to feed him, this is to encourage him to wake up and get stimulated every 3 hours so that he is practicing to do the same thing when he is strictly breast feeding. Mom is no longer making enough milk to supply Calen with what he needs, so is starting to receive lot's of Similac, but she is trying her best at it. 


Loading him up with some breast milk while Mom holds him. 

With all the big push to get him out more often means that I can hold him now the same day that Holly does. So like today Holly did skin to skin with him for about 3 hours and she gave him a feeding at the beginning of her holding him. After the 3 hours we placed him back in the isolett and the nurse did her assessment, and we changed his diaper. Then I got to hold him but I didn't have to do skin to skin, just cradle hold him and hold the tube in the air. It is really nice to be able to do that, much more convenient and adds more time for us to spend with him. 



So they are now only wrapping him up in light blankets. This is to prepare him for the crib. I think the crib will be happening extremely soon, we are thinking by the end of the week he will be out of the isolett. 

They were able to decrease his flow on his oxygen down. He is flowing at 2.5L now instead of 3. This is great, he appears to be handling it just fine. He stills seems to be having continued problems with gastric reflux and since he is on gavage feeding, they placed a new larger feeding tube down his mouth. 


The goal is that when he is out and being held for feeding's that he try's to stay awake and alert so he can eat. He was doing a great job of it here. 


He is swollen, but still too cute!!




Thursday, April 21, 2011

Check His Blood Work Please! Day 68!

3 lbs 10 ozs

Goodafternoon. It was nice to see the sun shining today. Our room today was freezing, had to crank the heat up in there so that Holly and I didn't have to sit around in blankets the entire time. No changes for Calen today, there was a plan to decrease his liter flow for his oxygen but he is still battling some desaturations and heart rate drops so they didn't mess with it. When we came in today, his heart rate was higher than usual, running around 200 when he is normally around 170. He was requiring 24% o2 from the last setting of 22%. I asked when his last blood test was to check his blood count and it was Monday. The last time he did this he needed a trasfusion, so my thinking is that we might be heading that direction again, I would just like to catch it early instead of waiting till Monday that way he does not end back up on CPAP. The desaturations though are not that bad, he never really falls below 88% so it isn't really terrible.


Picture of Mommy and Calen. I was just playing around, I find myself getting bored at times in the room. 


He has some crusties on his mouth that we soon removed when we gave him a swaddle bath. The swaddle bath was pretty nice today for most of the time they let us alone in the room to take care of him, which was great just because it gives us a sense of confidence that we know what we are doing and are ready to care for him. 


After his bath. He now has a clean mouth and a new outfit on. I messaged his back and legs and arms today,he really enjoyed it. He all together loves getting those swaddle baths. 


We saw this hanging in his room today. Not sure who created it, they think that it was one of the night nurses, 
but really how cute is that. 

Been nice catching you all up, back to work at the house for the rest of the evening. 

  

Tuesday, April 19, 2011

Rest and Grow! Day 66!

3 lbs 10 ozs

Yes I know repeat titles. But that is all that is left to do. He is growing like a weed and they are working to just pump him full of breast milk now so that they can meet his growing need for nutrition. They have made an increase to 30 ml every 3 hours now with that 30 ml going in over an hour and then a 2 hour break. Do you see the trend? He is going to be a preprogrammed eating machine when he gets home, kind of nice, this will reduce randomness and should bring some pleasant harmony to the feeding plans. 



I did hold him today although it was very short. The ophthalmologist is going to be here today to look at his eyes. With that said at 1 pm they had to put him in the isolett and shut all the lights off so that the nurse could instill some eye drops to dilate his eyes. The eye doctor is supposed to be here at 2 pm so we are planning to hang out here until they come because we have never been here when they have, rumor has it, it is not very pleasant to watch because they have to put springs in there eye lids to keep there eye's open and babies don't really like that to much. So it is super gloomy outside today and now we have to sit in the dark in his room, blahhh, talk about depressing. 




There appears to be less swelling his his eye's today then usual so that is exciting, I hope it really comes off and stay's off. I was talking with his nurse yesterday about the swelling and she said at this point that it really isn't very common and she wasn't sure why he had it so bad. So it really doesn't seem to be affecting him that much so that is good and hopefully we will see a nice steady drop. I think it had to do a lot with him being on SiPAP and  CPAP so long that the straps of the mask caused the swelling. 




I can't think of anymore changes than that. We have been working very diligently at home to get his room all done. It started out as a simple project of putting up a wall and now has become like a complete remodel of the entire room. So many new walls up and I just finished the bulk of mudding them, they are ready for paint. The project isn't really that bad except for it is happening in our living room which means that our front room is a mess and second we have a real hard time getting anything done when Joey is awake, therefore we have to start work after 10 pm when he is in bed. So we are up till 2 am every night working so that it will be done when he gets home, craziness. In the room that is becoming Calen's there was large shelving system that was for us a book shelf. Pulling everything off of it really made me sad because I was able to look through all the book's Holly and I used to read but has went to the wayside  with just being so busy with life. A lot of the books we had on the shelves for stored in Rubbermaid's headed for the garage, but I took all of our good books and built a new book shelf last night to put them up in our bedroom. Maybe sometime we will actually start reading again. 

Our nurse is rather hilarious. Her name is Candice and the nurse practitioner was Caroline, and of course Calen is Calen so there was all these C's up on he bored. She decided to fill in C's for the respiratory therapist name's as well so they went by CRachel and CSean today, they were completely satisfied with this. 



Ok so we waited it out for the eye doctor to come in and they did his eye exam. It actually wasn't that bad really. They put the little device in his eye's to hold it open, then used a cotton ball swab to kind move his eye around while they look. They said that babies normally cry when it is happening but then quickly relax afterward. It didn't really seem to bother him at all though, he took it like a champ. The results though were not so great. He is actually starting to develop some Retinopathy of Prematurity (ROP). He was getting 0's but they have since increased to 1. So right now they will do nothing, they will check him again next week. Doctor said if it continues to worsen then possible laser surgery to fix it, we shall just wait and see. There is a association though that babies who are on oxygen for a long period of time have increased problems with ROP.





We are Moving in the Right Direction! Day 65!

3 lbs 8 ozs


So we shall start with Calen's food as normal and it has changed quite a bit. They are really preparing him now for the changeover to breast-feeding. They make changes often in order to get him to this point. They started him back on his feedings after his little blood issue last week and they have fully resumed him back to his full 28 ml dose and have got his kilo calorie fortifier back up to 24 kcal. The biggest change all together is that they are switching him from receiving this amount over 2 hours to just giving it to him over 1 hour with a two hour break. They are moving towards what they call bolus feeding's which would be a common feeding regimen for an adult. So the plan will be to move him from feeds over 1 hour to decreasing it down to like 15 or 20 minutes, he will receive the total volume. Holly will be here at the hospital for 72 hours here soon in order to attempt breast feeding every 3 hours, this is will be an exhausting ordeal I am sure. 



We have made it back to high flow o2. He is sitting at just 3.5l flow and 22% oxygen air mix. So this is only 1% above normal breathing air and they will plan to decrease his flow over the next days to eventually see if he can wean down to no o2 at all. In regards to his breathing I was asked some question as to weather he would need any special devices at home or anything like that, and my understanding at this point is that if he was to go home on o2 or caffine then we would have an alarm system that would go off  if he was to stop breathing, so the answer is yes it is possible that he would need these things, we will just have to wait and see. The nurses that were asked about these questions say that it is pretty rare but it does happen sometimes.




Holly held him today and they are saying that we need to continue to do the kangaroo hold as we have been but that he is getting big enough and that he is holding his temperature so well now that it is possible that for example I wanted to hold him but didn't want to kangaroo hold him that it is possible that I could do that. 



We gave him another swaddle bath today. They are very enjoyable I think for both us and him at the same time. He becomes very relaxed during the bath and we get to see him without anything on him, I mean he is not inside of a box (the isolette) nor is he pressed up against someone's chest. It took Holly and I both today in order to give him his bath today. Our nurse wanted us to do it together so we would know what it would be like doing it at home. So it was fun, I did the washing, Holly held his head, and maneuvered him around so I could wash him all up. 





Friday, April 15, 2011

Late Arrivial's, Early Departure's! Day 62!

3 lbs 8 ozs

Good afternoon everyone. Came in late today, we slept in today, we stayed up late last night working on Calen's room making best efforts at getting it done so that when he is ready to come home there is actually a spot for him to go. I thought that there wasn't much to do but we really added several new projects to the list last night so with a quick trip to Lowes, I managed to drywall a wall and start running some new electric, pretty exciting stuff, have to finish the bulk of the build tonight I will be gone the weekend so Holly will be left to paint hopefully. 

News on Calen isn't to much. They officially started him back on fortifier today at the lowest 22 kilocalorie amount and will just monitor that. They will likely increase every other day or so, not sure of the plan. They are planning to switch him onto high flow oxygen tomorrow, we are very excited for that, so please pray that he is able to take on this again. 

Well we are coming to the end of another day. We are leaving early so we can get back home and finish up some work around the house before I leave tomorrow morning. Take Care Everyone!

Thursday, April 14, 2011

More Swaddles and There is Talk of Home! Day 61!

3 lbs 7 ozs

So we got to the hospital today fairly early. It was just before noon. We were there when the doctors were rounding and there was no new changes to his regimen today. He is at 28 ml of breast milk every 3 hours with no fortifier in it. They had planned to restart fortifier today but he ended up having some residual milk in his belly this morning so they decided to hold off. After Holly held him today though the residual had cleared up from the prior feed and another feed after that so tomorrow they will start him back on fortifiers. Swelling is still pretty bad, they are continuing to watch it, they are not making any changes due to this, so it is just there.  


The CPAP is officially on him, they didn't not put him back on bubble CPAP as they usually do, they just have him on CPAP that is just positive pressure that is controlled by a ventilator. He seems to tolerate this a whole bunch more. 


They had him off CPAP for a while today while Holly gave him another swaddle bath. She bathed him in the nice warm water and then after that they dried him and gave him a nice full body massage. He was very relaxed after that, he just dangled when Holly held him up, he enjoyed it. While off the CPAP he did really well. Have no idea what his sats were because he was off the monitor too but his color was great and he appeared to be breathing just fine. There is plenty of talk about getting him back to hi flow o2 this week so hopefully by Saturday we will be at that point. 


Mom working on drying him off, He is fresh out of the tube, still has some soap suds on him. 


He he was nice and relaxed getting a massage from mom. They also did neck turning exercises with him so that his neck would not be stiff and it helps with muscle development. 


So this talk of home. Dr has been in and talked to Holly, they have started getting information over to the pediatrician. She said that he is getting big enough that it is time to really pick up the pace and be ready to leave, maybe in the next 3 weeks or so. So God willing he is able to handle being off o2 and all that ,then he should be good to go. Holly will have to spend 72 hours here soon staying at the hospital to nurse Calen every 3 hours to prepare him for actual breast feeding. That should be a real fun time. 

We are out for the day, on another side note if you are Military, Fire, EMS, or Police and you tell them at Chic Fila, you get 50% off your meal, it is an unbeatable deal that I sadly only learned of today. 


Tuesday, April 12, 2011

Where We Have Been and Where We Are Going! Day 59!

3 lbs 5.25 ounces


Today Calen is 2 months old. What an amazing experience this is to us. We feel overwhelming blessed by the support that we receive from everyone, and the simple fact that it has been 2 months and everyone continues to help is a true testament of God's love. I know it has been a while since a post, 5 days actually, I will be getting everything caught up with this post. The truth is, nothing has been changing really, I mean there has been now but for a while things were pretty consistent.



So on Thursday we ran into some issues with Calen having blood in his stool, which at that point was noticeable just by looking at it, and now he still has blood in his stool but it is only occult (we cannot see it, it's microscopic). X-rays showed no problems and the blood test did indicate a low hemoglobin and hematocrit which required transfusion. He received the blood transfusion on Friday night after he was 24 hours out from having any food. Holly said that Friday when she went in to see him before he got the blood transfusion he was looking pale and his breathing was pretty bad. After the blood on Friday he was doing much better come Saturday. They were able to wean his o2 back down to 24% and he wasn't having any heart rate drops as he was before. On Saturday we thought maybe he would be able to resume his feeding's but they continued to keep him off feeding's until Sunday. Sunday came and they resumed his feeding's at half the rate that he was at, so they took him to 14 ml every 3 hours and they have removed all fortifiers from the milk.



As of today, Tuesday, they have made several changes. They have increased his breast milk feedings to 24.2 ml today so he is very close to the full 28 ml dose every 3 hours that he was getting. So he should be back to 28 ml every 3 hours tomorrow and then I would suspect that he will be back on fortifier on Thursday. So today they were able to start weaning Calen's breathing machines back down. He is off SiPAP now and he is back down to CPAP, they are using the SiPAP machine just on CPAP mode. He has tolerated it well all day and they are going to be changing every thing back over to high flow o2 rather quickly. He could go home as early as 3 weeks from now, 4 weeks from now will be his original birth date. It is going so fast, I can not believe we are preparing him to actually come home to us, it is pretty exciting.



We saw the OB today for Holly. Her blood pressure's are great and things on her part are doing spectacular. I also gave the office a gift today which was a 16x20 canvas of Calen at birth, that will now be hanging in there office, which is really exciting to see.

A couple videos brought to you by Aunt Susan below

video


video


On Monday Holly got the chance to start something new wit Calen and that would be a swaddle bath. These baths are using nice warm water in a rubbermaid container and then wrapping him in a blanket and then soaking him in the water. Then you wash him body part by body part and then just rewrap him as you go. Very neat process and Holly said that Calen really enjoyed it, in fact she believes he was complaining about it when they were done. 



Apparently since Calen is growing so much that they decided that he was a flight risk so they placed an ankle bracelet on him so they know if he tries to leave the unit. 

Thursday, April 7, 2011

Printing a Retraction! Day 54!

3 lbs 1 oz

We only had some gram increases today, not enough to get us up another ounce but we are in the right direction. Busy day today, had senior pictures in the morning in Indiana, then back to Greenville to finish our taxes and then to Dayton where we are now to see Calen. Not a lot in terms of long term changes but he has had some frequent stools so they are starting to put some zinc oxide on his bottom to prevent breakdown. He is having some issues with keeping his head always pointing right, they say this can be normal because they find it comfortable to lay in one direction and do not realize they can actually turn there head the other direction. A Occupational therapist just came in and saw him, they worked with some pressure point exercises to help relieve any discomfort he may be experiencing from laying his head to the left side. By not moving his head around it will create a soft spot on the side of his head that he favors, thus the importance of movement. 

We hung out at the park for a while with Joey. He really enjoyed it, he tried climbing up some monkey bar things that lead up to a slide that mom hated him being on thinking that he was going to fall, but he soon realized that the higher he got up the more he started to dislike it, so he cried a bit until I helped him onto solid ground, and then he came back down and did it again, crazy kid!!!

So when we started Calen's Assessment today it was noted that he had some blood in his stools. This did raise some alarm since he has not had any blood in his stool up to this point and so they ordered a abdominal xray along with a couple blood test. So far the xray was unchanged from April 5. They will look into his blood test just to make sure that he is not appearing to be developing an infection, Necrotizing Enterocolitis is of huge concern in premature babies which is an infection in his stomach, can be vary serious, in cases can require surgery. We are praying for nothing to be wrong of that nature, so we will let you know when we no more, but for the time being they will keep things the same which means we will continue his feedings. The retraction that I must print is that yesterday I said he was receiving 23 ml of breast milk every 3 hours, he is and was actually receiving 28 ml, my bad I am not sure where I got that messed up at. 

Ok so Dr. Belcastro stopped in to give us some new information about Calen. He does not think that he has an infection at all, he does think that maybe the fortifiers in his breast milk are causing the bleeding possibly due to some intolerance. They will be placing all feeds on hold at this time for a couple of days because they did see that his blood counts are down and it is time for a blood transfusion. So late tomorrow they will start the blood, he needs to be 24 hours from food to get the transfusion. 


Wednesday, April 6, 2011

Growing! Day 53!

3 lbs 1 oz

We did it, you may now blow your party straws and throw you hats into the air. Calen has made it to 3lbs. Wow it is amazing how far we have come, it does not even make sense in my head.I am glad we are moving along, we are getting closer to the beginning of something awesome. Holly and I attended the taking your premie home class tonight. I was a bit of a skeptic because we went to the labor classes and they were about as useless as me trying to read a book about giving birth in Chinese. This class though was provided by an Occupational Therapist and she did an excellent job covering many topics that are probably pretty common, so in the all and all we were pretty happy with it. Calen is still on the amount of feedings which 23 ml every 3 hours. 


Here is Calen with his SiPAP on. Don't really like this thing all strapped back on him but it is ok I guess, whatever it takes to keep him healthy is fine. It is causing some breakdown on his nose which they are attempting to loosen the mask to help out with this, problem being that when they loosen the mask, he has a lot of desaturation issues. So as for now the mask is back on snugly. 




Hanging with mom. Holly is continuing to be the majority of the time skin to skin person. He enjoys being on her, he really goes in to a deep sleep on her and becomes very comfortable. His temperature is much more maintained by mom and therefore saving him valuable energy that can be used for growing. He also can hear her heart beat and her breathing pattern and this helps him remember that he must do that as well. 

Be back tomorrow, will be late, we have a pretty full schedule early in the day. Goodbye everybody.