Side By Side

His New Face

The final scab fell off of Carter's lip today, so we get to see the complete results of the surgery. He is pretty darn cute, but I still find myself missing the cleft at times especially when he makes a certain pouty face. I managed to sneak the Oxygen off for another pic so you could see his new face.

Healing

He seems to be back into the groove of things. After his strike on sleep (that lasted 48 hours) he finally crashed last night at 8:00 and didn't really wake up until this afternoon except for his meals. Part of the glue they used on his lip fell off today, so now we can get a better look at the repair and for only being 8 days I think that it looks awesome! Carter has also been feeding really well all day, so that hurdle may have already been overcome.

First Smile

Evidentally nobody informed Carter that he needs to sleep. He was up all.night.long and most of the day today. I think that part of the problem was a little trouble with his tummy. He still seemed to not feel well throughout the day, but perked up this evening when I fed him with the original bottle he started on in the NICU. He hadn't been doing very well with the other bottle, so I decided to give the first one a shot and I'm glad that I did. He downed it without much effort. I think that feeding could be a lot easier for him now...it's just a matter of getting used to it again. I'm so happy to see him feeding himself because I hated using the G Tube. He's now hanging out in his swing and smiling at his toys. His new smile is simply adorable. It tried to catch it on camera, but of course he got camera shy. Here's a half-smile anyhow.

Home

Carter is home! He hasn't slept all day. He's just loungin' in his playplace and enjoying his toys. New pics to come tomorrow!

Day Five

Carter is out of the PICU!!!

We couldn't be prouder. He is back to his basic Oxygen levels... in fact he seems to be doing better than when he went in, so we're hopeful that the surgery really did help him with his breathing. He needs to spend the night in the infant unit, and should be home tomorrow. He's doing exceptionally well, but is pretty bored with being in the hospital. I assured him that his brother and sister will take that away within the first hour of being home.

Day Four

Carter is still keepin' on. He had a good day today although he was pretty fussy at times. I think that he's just sick of being there, and he had some loud neighbors. We're pretty sure that the suctioning of the fluid and placement of the ear tube has helped his hearing because he seems to be overly sensitive to noise. Imagine what it must be like to wake up hearing much better than when you fell asleep. He was still on high flow when we left, but he's supposed to be switched to regular Oxygen in the next couple of hours. If he does well, he will be moved to the Infant Unit in the morning. My best guess is that he will need to spend the night in there before he can come home, but we'll have to see what the docs think. He's continuing to heal well (sorry no pic today), and is looking more and more like Mikey now. It's really an amazing transformation.

Day Three

Carter had a pretty good day today. He was really fussy, most likely from the pain. He would get upset if you touched any part of his face which is why he looks so grubby in these pics. I tried a couple of times to clean his face, but no matter how gentle I was he would start to cry. They eventually weaned him down to 5 liters of high flow Oxygen and plan to take him down to 4 tonight and stick with that until morning. They also started his feeds, but only at a quarter of what he usually takes. The doc said that he *thinks* that Carter could get transferred to the Infant Unit tomorrow. That is the next step before coming home.

Day Two

He started off the day looking like this. A little less swollen, but still on the vent. They extubated him at about 1:30 and it went smoothly, but soon afterward Carter was having to work very hard to breathe. They loaded him up with more steroids and they helped a little, but not enough. The docs ended up putting him on a high flow Oxygen. They may start trying to wean him off of it tomorrow, but we really need him to have a good night for that to happen. Carter is still a little sedated and very sleepy, so we haven't really seen him awake yet...mostly just a little wimper here and there. I really want to hold him tomorrow, so I'll be sleeping with my fingers crossed.

The Big Reveal

The surgery went really well. They took him in at about 7:30, and he was finished around 12:30. The doc said that Carter had an unusual cleft, but that he felt the repairs went very well. We haven't been able to see the prosthetic palate yet, but are excited to when we can. After the surgery Carter was sent to the PICU to recover. He decided to help out the docs by pulling out his breathing tube before he was really ready. The docs had to put another one in, and expect that he'll be on it until tomorrow morning at the earliest. Carter just has to get off of the ventilator and back to his baseline on his O2 to come home... we're not really sure how long that could be, but are furiously PRAYING that it could be before the weekend. As of right now he's being sedated and will be until they are ready to take the tube out. They just want to be sure that the swelling in his airway has gone down to prevent the problems that we had the last time. The plan had been to try out the Bipap and do a sleep study, but nobody took into consideration that Carter wouldn't be able to do it with all of the wounds in his mouth. We'll just have to deal with that portion in a couple of weeks. Carter did have a really good CO2 level today, but we're not sure if it was the ventilator helping it or if he is just getting stronger. Some of the indicators are that he had improved since the last hospital visit, but we're trying not to get our hopes up. On another positive, the Cardiologist looked at Carter's echo and decided that we don't need to have another visit with him for six months... Yay!

So...... are you ready for the big reveal??? Keep in mind that he's still really swollen. Let me explain a few things too. First the little cut looking thing on the left side of his lip is just dried blood. They didn't do anything there. Second, there is a blue string coming out of his mouth that is taped to his cheek... that is connected to a stitch in his tongue that they use to pull it so it doesn't interfere with all of his new hardware. That stitch will be taken out tomorrow. The nasal stents are in his nose to help shape it to prevent the one side from sagging. He'll probably have to wear them for about two weeks. His oxygen canula should fit inside those holes.

Morning

Carter was not happy AT.ALL with not being able to eat, but he eventually settled down. That is after about 45 minutes of non-stop crying. Poor little one. He's in surgery now. The ENT already came back to tell us that they successfully put the tube in his left ear. Carter was going to have an echo, and EMG, and then they will get started on the lip/mouth stuff. I'll update again after we see our little guy's new face.

Schedule

We got the call. Carter is scheduled to be there at 6:00 am with surgery at 7:30 am. It is supposed to last 3.5 hours. Good luck little man!

I'm Sad

I'm just really, really sad today.

I don't want Carter's adorable face to change, and it's going to very soon.

Could he possibly get any cuter than he is now :)

Friday

We have to be at the hospital at 7:00 am tomorrow morning to check in for Carter's tests. We've had a lot of questions as to what these tests entail, so here is a basic explanation (from the world of Wiki lol!). A cath lab is when a catheter is inserted into a large artery, and various wires and devices can be inserted through the body via the catheter which is inside the artery. In Carter's case they will be doing this in his heart to measure the pressure each chamber is giving when it pumps blood. The doctor doing this is actually a specialist in Carter's heart condition (pulmonary hypertension), so hopefully he can come up with a really good plan to treat it. Since Carter has that small mass in his heart, this procedure is a little risky, but we're confident that he's in good hands. Hopefully since he's one of the first ones scheduled for tomorrow, he won't have to spend the night.

I got some one-on-one time with Mikey today. He's getting big so fast, and talked my ear off. Unfortunately it was to take him to the doctor. The poor kid just barely started to complain that his ears were hurting, so I took him in to get them checked. Yep, he has a double ear infection. I'm really glad that we took him in when we did because he's starting to really act sick tonight. The meds should kick in soon so he'll be feeling better.

Carter Jay

We just got back from our appointment with the Perinatologist. Thank god that the ultrasound came back clear, and everything looks great. Also we found out that we've been blessed with another boy. We had already expected that, so it really wasn't much of a shock. I'm so relieved that our little Carter Jay is healthy, and he is growing right on target. We can't wait to meet him, and hold him in our arms. Until that day, we (OK I) will be shopping for all of his needs. Now to figure out which bedding we want to do.