Waterslide

We took the kids to the hospital today, and as a prize for being well-behaved we let them come home to play on the waterslide. They invited their neighbor friends over and had a blast! Carter's still hangin out in the NICU. Just waiting for his final stuff tomorrow and Tuesday.

This is Jovie saying "Seriously?!?! More pictures?". I have no idea what Mikey's doing, but it cracks me up!

Sorry

I'm sorry that I was a slacker last night, and didn't post an update. Carter's still doing great! He's just working toward the picnic. Michael and I have pretty much finished up the stuff that we needed to complete in order to take him out of there. The doctor told us today that they wanted to do a sleep apnea test on Carter on Monday night, and besides that he's pretty much done. They're working to consolidate his feedings into shorter periods of time during the day to make it easier to feed him. We were told that the picnic should definitely happen by Friday. We really just need little Carter to stay healthy in the meantime. Everyone should just keep their fingers crossed.

Mikey and Jovie

I feel like a bad mom for not posting much about our other kids, so here goes.

Mikey's definitely been one busy kid lately. He finished up Soccer only to start right in with T-Ball. His last day of school was today, and his class had a little picnic. He told me that he had a really fun time. I can tell that he's going to enjoy his summer now that he's got friends in the neighborhood to play with. It's pretty likely that we'll be spending a lot of time at home this year, so it's a good thing that we have that cool new swingset.

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.

Vaccinations

Carter had kind of a rough night last night. He was running a low grade fever and having minor respiratory issues. My first thought was that it was probably because he had gotten his vaccinations the night before. The nurse practitioner felt that was probably the case as well, but they have started running blood cultures (to check for infection) just to be sure. He seemed to be fine when we were there today, so I'm going to keep the faith that this was truly the problem.

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.

God Is Good!!!

Thank you, thank you, thank you God for giving our little boy hearing! Today was a HUGE win for Carter. We got the results of his hearing test, and he has hearing in his left ear. The audiologist says that he can hear a typical conversation, but nothing quieter. She tested his ear drum for fluid, and says that he has a lot of it. That means that when he gets his ear tubes put in (to help keep the fluid drained), it's very possible that he'll only have a minor hearing loss. His right ear doesn't show any hearing, but it's possible that the fluid could have something to do with that as well. One is much better than none, so we are beyond grateful and thrilled at the same time.

He's still working toward the picnic, and is down to minimal settings on his oxygen.

Two Posts

Here's the update from yesterday, and I'll post one for today later tonight.

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.

Coming Along

Carter's still plugging along on his journey to the picnic. He had a very good day today, and got weaned down to the oxygen level that he'll be using when he gets out of that place. He's still not quite up to full feeds, but probably will be tomorrow. For some reason he was extra cute today too!

Almost 7 lbs.

Carter is almost 7 lbs. now. He's at 6 lbs. 15 oz. I can't believe that he's gained 2 lbs already! He had a pretty good day although it started off rocky when he wasn't digesting his food. Once he got some through his system, he was totally fine and has been doing well the rest of the day. They may try to increase his feed again tomorrow.

8 Weeks 1 Day

Carter is such a rock star that he actually got off of the ventilator last night. It was a lot quicker than we were expecting, and he's doing just fine back on the nasal canula. We went to see him today, and he was quite cranky. Who wouldn't be? He hadn't eaten since yesterday, and his IV went bad so they had to poke him a few times to start a new one. Since then he's started feeds again, but they are only at a quarter of the volume. Hopefully he can work his way up to full feeds again soon. We're very proud of our little guy!

Surgery

Carter had his G Tube placed today. We got there just as they were about to give him medication to sedate him while they put him back on the vent. Unfortunately, he had a bad reaction to it, and stopped breathing while he was in Michael's arms. It was pretty scary, but luckily the respiratory team was standing right there when it happened, so they got him breathing again without any problems. His surgery went really well.

Right now Carter has this foley catheter that we will administer feedings to. It looks a little worse than it eventually will because it has a surgical dressing on it.

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.

G Tube

Well, there has finally been a decision made. Carter is having a G Tube placed tomorrow. This is a feeding tube that is inserted into the stomach through a small incision in his side. A little tube will come out of it, and we'll administer his feedings through that. The doctors feel that this will get him home a lot quicker than waiting for him to be ready to come home on an NG tube. There is a long list of reasons why they feel that this would be better, and although we're a little disappointed it's good to get the ball rolling on this. It probably really is better for Carter than the NG tube would have been. He will still be able to bottle feed, and as soon as he can take all of his feedings by mouth, he will have it taken out. The doctors told us to expect his picnic sometime next week IF everything goes smoothly.

26 CCs

Carter had another AMAZING day. First, he took 12 cc's out of a bottle for his therapist this morning. That's the most he's ever taken for her, so she was quite proud. I went up tonight and he took another 14 for me. Hopefully he can start to build a little more stamina to take more at each feeding.

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!

What?!?

So, Carter had his upper GI today and what do you know... It didn't show any acid reflux. We are beyond perplexed on what is going on with this little guy. He seriously shows all of the signs of reflux, and nobody seems to know what else it could be. We have no idea what this all means, or where we will be going from here. Hopefully we can get some answers tomorrow. The good news is that Carter's therapist was very impressed with how much he's been taking on his bottle feeds, so she upped them to four times a day as long as we, she, or one of his primary nurses does it. I still think we're getting closer to going on a picnic, but I must admit that I feel a little frustrated today.

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.

Amazing

That is the one of the words I use to describe little Carter. I swear that I fall more in love with him every single day. He might have a lot of challenges ahead of him, but I just know that he's going to be simply amazing. He was certainly amazing today when he took another 15 cc's from a bottle. I really think that he could have taken more, but he had a serious diaper issue going on. His upper GI got postponed until tomorrow, so we need to keep our fingers crossed for good news. I think that Carter's almost to his finish line in the NICU... he just needs to keep up the amazing work.

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.

He's a stud

Carter downed his entire bottle today! We started with 10 cc's, and the nurse added another 15 which he took 5 of. He started out not too interested in eating, but then took off like a champ. It seemed like he's really getting the hang of it. His biggest enemy right now is the acid reflux, so he's going to have an upper GI done tomorrow to see what's going on. This will give us some answers on what we can do to help him with it, and also to decide what kind of feeding tube Carter will need. If he can keep downing his bottles, he won't even need one! ;)

6 lbs 10 oz

That's how much Carter weighs now!

Carter had another good day. He's still struggling with the reflux, so they're going to do an upper GI scan on Monday. He took 6 ccs from the bottle today. Here's some new video, and a couple of pics since I haven't posted any in awhile.

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.

7 Weeks Old

Carter had his swallow test today, and did excellent! They are going to increase his bottle feeds, and start to decide what type of feeding tube he will be sent home on. The doctor told us that the mass in his heart is doing what they expected it to do, and will eventually be absorbed into his body. We just need to wait for him to finish his antibiotics before we can talk about "going on a picnic". We're starting to see the light at the end of the tunnel, but don't want to get our hopes up too much.

Almost 7 Weeks Old

I can't believe that Carter will be seven weeks old tomorrow. He had another good day. His echo showed that the mass is still staying the same size. We're not sure what that means, but will be asking a lot of questions tomorrow. I got to bottle feed him tonight, and he took 4 cc's. He started off like a champ, but tired out quickly. He had been awake for awhile before I started though, so I'm sure that had something to do with it. He will have a swallow test tomorrow, and I'm hoping to talk to his doctor to see what the plan is, and if we have ANY type of timeframe for when he might be able to "go on a picnic" which is our code for coming h.o.m.e.

Wednesday

Not much to report today. He had a great day! His swallow test did get postponed until Friday. He will have an echo tomorrow to check his heart. Sorry for the short post, but there's just not much else to say. Honestly, that's a good thing :)

Stupid Reflux

Poor little guy had a bad day with his reflux. He was fussy for a lot of the day especially after his feedings. He tried the bottle again this morning, and took 8 cc's for the therapist. That's the most he's ever taken, so that was a positive. He's going to be getting a swallow test done tomorrow to make sure that he's protecting his airway when he eats, and also to see if he's aspirating on any of the reflux. Not much else to report... we're just hoping for a good outcome tomorrow.

I Don't Like Mondays

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.

Mother's Day

We went to see Carter this morning, and to feed him his daily bottle. The nurse had him dressed in a pretty cute onesie that said "My Mommy Rocks". How cool is that?! He took a tsp. from it which isn't too bad, but seemed to be getting the suck/swallow/breathe routine down a lot better. I'm looking forward to trying it again tomorrow. He gave me the best Mother's Day gift ever when he turned his head toward me to give me HUGE puppy-dog eyes that totally said "I love you mommy, take me home". Even the nurse told me that I'm going to be in a lot of trouble if he keeps giving me that look. He's going to be spoiled with whatever he wants. He's still doing well with all of his other stuff. We don't have a set date for when he'll "go on his picnic" (we don't like to say the h-o-m-e word because we don't want to jinx anything), but we can't help but feel like it's going to be soon. Keep up the good work sweet-pea!

Saturday

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.

Six Weeks Old

It's hard to believe that he's already six weeks old although it does seem like a lifetime since he was born. Carter had another very busy day today. He started out the day with another echo on his heart. They found that the mass has stayed pretty much the same size as the last echo which is better than it getting larger. They plan to still keep a close watch on it. When we went in, we learned how to use Carter's bottle, and everyone who said it is right....it's really not as hard as it seems. I got to feed him while Michael helped to keep Carter awake. Carter managed to get about a tsp. from the bottle before he just got plain tired. We're really proud of him, and think that he can get this feeding thing down with a little more practice. The therapist wants us to do one bottle feed per day until Tuesday when she will come back to re-assess what he's doing. A little later in the day he got a scope of his throat to see if they can find any reason why he's recently started to have trouble with his breathing. They found that his vocal chords were quite swollen, and his throat is pretty irritated. The ENT says that these are both classic signs of acid reflux which wouldn't be surprising considering our other two kids had this as babies as well. They started him on medication, and it seems like it's already helping him.

Obstacles

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.

Bottle Feeding

He tried the bottle again today, and was a little more successful. Mommy even got to feed him for a little while. He ate 5 ccs which is about 1 teaspoon. Carter has to use a bottle called the Haberman feeder. We have to actually squeeze the milk into the back of his throat. I put a picture of one below. It's going to take a little while to get used to, but we'll get the hang of it soon. A therapist is going to feed him from the bottle again tomorrow, and then we will be trained on how to use it on Friday. They want us to administer one bottle feeding per day throughout the weekend.

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!

Rock Star

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.

Monday

Another good day under our belt. He didn't try the bottle today because it was decided that he should have a swallow test done beforehand. They just want to be sure that he protects his airway and doesn't allow the milk into his lungs when he swallows. He'll have that done tomorrow, and if it's clear he can try the bottle. He's still doing well on all of his other stuff, and is also now up to 6 lbs. What a chunk!

The Best Things

We visited Carter today, and it was by far the very best visit that we've had with him so far. He was awake, alert, and happy. It was the first time that I really felt like he was just a baby and not a sick baby. As I type this my heart swells at the thought of our little baby looking at me. Needless to say, it was really hard leaving him today. He was switched to a smaller oxygen mask, and the doctor really wants to start bottle feeds tomorrow. We're hoping that he can progress to that because we know that he would really like it.

Here's a video of him playing with Daddy. Check out Carter's awesome sneezing trick... who else can do that with one eye open?!

If you want to see the video larger, you can click here: http://s75.photobucket.com/albums/i287/bundypunk/?action=view&current=VID00076.flv

Sleepy

Carter's still holding his own. He looked really comfortable today, but is still really sleepy. We can tell that he's still a little sick. The good news is that his cultures have all stayed negative, so they think that he just has a little bug. They are increasing his feedings because he's been on half-feedings for the last day, and are starting the weaning process on his high flow oxygen again. If he can continue to do well, it's possible that he'll try a bottle on Tuesday. We're going to stay hopeful but not count on it. Carter definitely needs to just take things at his own pace.

Five Weeks Old

Carter had a really busy day. He got another echo, another x-ray, and did his physical therapy. When we got there he was sleeping, and did so the entire time we were there. The poor little guy needed to catch up on some much needed rest. His echo came back saying that the mass is still shrinking which is good news. His cultures have also remained negative, so hopefully they stay that way. The therapist showed us his cleft palate today which was pretty cool to see. It makes it a lot less daunting. She also taught us a technique to start doing which will help him to learn where to put his tongue when he gets his first bottle. He caught on to that really quickly once Mommy helped him (ha!). What a sweetheart!