May 31, 2009
May 30, 2009
May 28, 2009
Jovie hasn't been up to too much lately. Mostly just hanging out with me, asking about a gazillion questions every chance she gets, and being Mikey's cheerleader. She's been trying very hard to learn how to swing by herself, and can finally reach the pedals on her tricycle. Hopefully by the end of Summer she'll conquer those two tasks. She's turning into quite the young lady, and is very excited about the idea of not being the youngest anymore.
I got to snuggle with him for a long time today, and it was so nice to imagine what it will be like when I can snuggle with him at home. He also took 8 cc's from a bottle for me. I think he could have done a little more, but he had such a big day that he got tired really quickly.
He also had another scan on his kidneys today to see if his urine was refluxing back into them. They found this problem when he first arrived at Primary, so they were just checking to see if it was still a problem... and it was. This just means that he'll have to stay on a low-grade antibiotic until he either outgrows it, or he gets it fixed with surgery. The antibiotic is to prevent a urinary tract infection. It's a fairly common problem, so it's just something that we'll have to continue to get checked. Not much else to report. He's going to have a sleep study done soon to determine if he has any sleep apnea.
May 27, 2009
He's still working toward the picnic, and is down to minimal settings on his oxygen.
I got home so late last night that I completely forgot about the blog. Ooops! Carter had a good day yesterday. They are getting all of his tests and stuff done before the big day comes. He got his immunizations, another echo, and started his hearing test. We haven't heard the official results, but the nurse said that he didn't "completely pass" on his left ear and they haven't tested the right ear yet. We'll take "completely pass" as a good sign that he at least has some hearing on that side. Anything is better than nothing in our opinion. They didn't do the right ear because they needed some different equipment for it. Carter also passed off his car seat test, so now we just need to wait for him to get his feedings condensed before he takes a journey out of there.
May 25, 2009
May 24, 2009
May 23, 2009
May 22, 2009
Here is what his g button will look like in six weeks when they put it in. We'll have a tube that we hook up to it to give him his feeds. His is actually more to his left side. The diagram in the right corner shows what it looks like from a side view. We're hoping that he won't have it for very long.
May 21, 2009
May 20, 2009
Michael talked to the nurse practitioner today, and she told us that they still think that Carter has acid reflux even though the test didn't show it. They are going to continue to treat him for it, and see what happens. Right now it sounds like they are leaning toward sending him home with an NG tube which is a tube that goes into his nose and down into his stomach. Michael and I will have to learn how to place it in case Carter pulls it out. No problem... if it means that Carter can come home then we can handle it. The NP also told us that the thing that we need to concentrate on most is getting Carter to keep improving on the bottle. He can come home as soon as he has shown that he can take a lot of his food from it.
He did another amazing thing today. Tonight I was holding him in a sitting position to practice his head control, and he actually held his head up by himself for quite a long time. He did it three separate times. If he can keep improving on that, it will mean that he's not too far behind on that milestone. Carter says NO to developmental delay. I'm telling you... this kid's amazing!
May 19, 2009
Mikey had a big day today too. He started T-Ball which I think he really liked, and he had his preschool program. I'm going to post pictures tomorrow.
May 18, 2009
On another note, Carter has a little friend named Gavin. Gavin was born a couple of days before Carter, and his daddy has been a friend of mine for 14 years (yes Chris, it's been that long). They were in the NICU together at the hospital they were both born at, and Gavin actually got to go home a couple of weeks ago. Unfortunately, he's now very sick with pneumonia, and is at the children's hospital with Carter. Their stories have been intertwining since the week they were born. Please keep little Gavin and his family in your prayers. He's a tough little kid, and is going to be just fine, but he could certainly use some prayers to help him through it.
May 17, 2009
May 16, 2009
Mikey had his last soccer game today, and he scored a goal. He's had a blast playing, so it's going to be kind of sad to be finished with it until Fall. We start T-Ball on Tuesday so hopefully he'll like it just as much.
May 15, 2009
May 14, 2009
May 13, 2009
May 12, 2009
May 11, 2009
I guess that Carter has decided that he doesn't like Mondays. I went in for his feeding at noon and he did not want anything to do with the bottle. He was still very cute, and is doing well on his other stuff, but just didn't want to try eating. It could have been that they had turned down his O2 rate and finished his oral care right before we tried. His therapist comes back tomorrow, and we'll find out what she would like to try next with his bottle feeds. Overall, he still had a great day, and was even awake for most of it. He's now up to 6 lbs. 7 oz. Still 4 oz lighter than Jovie when she was born. Sorry about this spastic video. I don't know what was wrong with me today.
May 10, 2009
May 9, 2009
Our little sweetie had another good day. The nurse from last night said that now that he's on medicine for acid reflux, he's like a whole different kid. It's crazy that something like that can really affect him so much. Even his cough that was likely caused by the acid sounds so much better today. We tried the bottle again, and we really think that he's starting to get the hang of it. He managed to get almost 7 cc's from it today. The video is Carter concentrating very hard on his crib toy. We keep telling him that we have much more entertaining things at home, so he'd better keep up the good work.
May 8, 2009
May 7, 2009
Carter had another small setback today. He's started to to go through periods of not breathing when he is lying on his back. The doctors think that there's possibly something in his airway obstructing it. The ENTs came and checked him over, and they want to do a procedure on him but we missed their phone call so we're not sure if it's another scope or what. We should find out tomorrow. He did take 2 cc's of a bottle this morning which was not too bad for his third try. I hope that Carter has a better day tomorrow.
The zoo is only a couple of miles from the hospital, so I took the older kids on a little outing today. It was really nice to get out with them.
May 6, 2009
He's also being dressed in clothes again to keep his body temperature up. His night nurse was hoping to get him into a crib tonight, but we're not sure if that's going to happen yet. I also had a meeting with the coordinator of early intervention. Early intervention is a program through the school district where a therapist will come to our house twice a month to teach us different exercises and things to do to help Carter developmentally. We're excited to get started on that stuff. Here's a new video from today. Notice how far the sleeves are rolled up...it's a size newborn!
May 5, 2009
He had another good day. They tried him on a bottle just to see if he would swallow properly. The therapist said that Carter was very anxious to try it, and did OK for his first try. He drank about 1/2 cc of it. That's to be expected for his first try. He's not quite ready for the swallow study, so they're going to work with him every day for a few days to see what happens. The nurse practitioner threw the idea of a G-Tube at us today. Basically it is a gastric feeding tube inserted through a small incision in the abdomen into the stomach. It works the same way that his feeding tube through his nose, but is safer for Carter. The NP said that it's possible that he will have to come home with one until he can learn to bottle feed which is very common for babies with cleft palate. We certainly don't want Carter to have to stay in the NICU because of bottle feeding, so we're fine with this idea if it comes to that. Carter's a rock star though, so he might just shock all of them and learn the bottle quickly.
He was awake and alert again which was very nice to see. Since everyone seemed to love the other video, here are some more from today. Just so you can get an idea of how tiny he really is, the onesie is a size Newborn. The size on it reads 5-8 lbs and it's still huge on him. He's wearing his splints that help him to learn to straighten his wrists. He absolutely hates them, but they seem to working.
May 4, 2009
May 3, 2009
If you want to see the video larger, you can click here: http://s75.photobucket.com/albums/i287/bundypunk/?action=view¤t=VID00076.flv