Back Online and Wow am I Behind! Day 83!

4lbs 8 ozs

Well here I am again. I know you all probably thought I fell off the face of the earth especially if you read this without using facebook. Since Monday May 2 Holly and I have been at the hospital staying the night so that Holly could breast feed Calen every 3 hours. Today is Thursday and we will be leaving this afternoon back home. Calen didn't really progress much in terms of feeding's, he still needs lots of practice before he will be able to actually breast feed on his own, we will probably be starting him on bottles today or tonight, so that way the nurses will be able to feed him when we are not there. We are hoping he takes to a bottle better than breast so that he will be ready to go home, he won't be able to go home with a tube down his nose for food, so that will have to improve. Since my last post I see that there has been a large weight increase. Amazing how fast he can gain weight, so he will probably be around 5 lbs when he does get released from the hospital.

 

So we have had just a fabulous time living in the family sleep room. Holly never left here 1 time since Monday so I feel bad for her. I didn't get here until really late Monday because I worked and then Wednesday I had senior pictures, so I had some breaks from the hospital air. There has been the benefit that we really know our way around Miami Valley, we have had lots of time to explore this place, like when you get hungry or were really feeling the need for some coffee. For some odd reason getting up every 3 hours here and if you have to do it at home are much different, like we were extremely tired, more so last night than any other night. The feeding times were very strict, we had to feed him at 3,6,9,12 around the clock. We had to go in and get his assessment done, then Holly attempted to breast feed from 10-20 minutes, then we had to gavage feed him through his tube, another 20 minutes, then Holly had to pump, another 20 minutes, cleanup and head back to the room for some sleep for maybe 2 hours if your lucky. Pretty much no fun, makes me wonder how I made it through the Army. On Wednesday night though we had a great nurse who said since Calen was not really breast feeding well that we could take a break and not come in from midnight to 6 am so we got some pretty straight sleep, felt great. 

Today, Thursday May 5, 2011 Stephanie our nurse felt that Calen needed to make some more progress so she talked the doctors into taking him off high flow oxygen. So they have moved him down to a standard nasal cannula at 1.5L of oxygen. He could go home on this. He is tolerating it just fine right now. Give him a day or so to ensure he has made the transition ok and hopefully we don't have to worry about that anymore, his room is really starting to look empty. 

Well now it is May 6, 2011 and we are back visiting Calen right now. Today was the first day that Calen attempted to drink from a bottle with his nurse and he did amazing. His volume is 35 ml per feeding and drank a good 25 ml of that out of the bottle. This is a really positive accomplishment. As long as he is able to drink from a bottle consistently then they will be able to pull his nasogastric tube out and that means we will be that much closer to home. A common question of oxygen at home still remains and it appears more and more that it will be the case, they said that being on oxygen will not keep him here, only the feeding issues will, so as long as he still progresses with feeding then homeward bound is within eye sight. 

I will make some attempts of keeping the blog going strong till the end, I just cannot beleive how much stuff there is to do. I am back doing pictures regularly now which is a huge time consumer, I have not mowed my lawn 1 time this season because I have a flat tire and cannot seem to get the tire off the mower to get it fixed, our roof, specifically over our bed was leaking due to all the rain and it is in need of repair, I had a flat tire on the car about a week ago, got brand new tires placed on the car to 4 days later (last night) end up with a nail in one of them and it go flat, and Calen's room still needs to be finished, and we really need to steam clean the carpets before he comes home because I have stirred up so much dust in the house working on it,  it's like wow, how much craziness at one time can we have. 

We are all together ok though, holding it all together very well. Please keep us in continued prayer as we near the end of this and could be dealing with this all much harder at home than we do here. Goodnight!!

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. 

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!!

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. 

  

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. 

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!