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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!

First Day

Doesn't he look like a teenager in this pic? Mikey's first day of Kindergarten was yesterday. Well, it was kind of like a "faux" first day of school. I had to go with him and stay for 45 minutes while the teacher told us what to expect out of the year. He had to go back today for a quick test to show his teacher what areas he needs to work on, and now he's done until his first "official" day of Kindergarten on Monday. He seems to like his teacher, so hopefully he'll have a fun year.

Tomorrow is the BIG day for Carter. I still don't know the surgery time, but am assuming it will be in the morning. I have some pics of Carter and his daddy to post too. I finally got some done even though the baby cried during the whole thing. When I say the baby, I'm not referring to Carter. We will update when we can tomorrow, and are excited to post Carter's new look! Thank you for all of the prayers and well wishes.

Mikey

It's official! Mikey is now six years old. Part of me is so proud of him and the other part is a little depressed that he's getting so big! We had a small family celebration on his actual birthday followed by his party on Saturday. Michael set up the pool and waterslide, and Mikey had all of his cousins and some of his friends over. The kids had a blast! There was even an Optimus Prime pinata. Thank you everyone for celebrating our little man's birthday with us. It was definitely one that he'll remember forever. He started school today, pics of that to come tomorrow.

If you're wondering where Carter was for the party, he spent the day tucked away in my bedroom. No worries though, all 3 of his Grandmas made sure that he was well taken care of.

Pulmonologist

We went to the new Pulmonologist doctor yesterday, and it was a good visit. There was a lot of information discussed, but I'm not going to get into all of it right now. Basically, the plan is to get Carter started on BiPap while he is in the hospital next week. BiPap is a machine similar to the CPAP that he was on in the NICU. The difference is that first the mask is larger and will cover a lot of his face. It really looks a lot worse than it it, and honestly it's only while he's sleeping so what's the big deal?! I know that my little boy will get used to it, and knowing that it's going to help him be more mobile during the day is definitely worth it. The BiPap machine forces air into his lungs, and then also helps him to exhale. The doc thinks that once we get that working for Carter he could possibly get off of Oxygen during the day. I can't even imagine life with Carter not on Oxygen. It would be pretty awesome! She also thinks that a lot of his breathing problems are being caused by the cleft palate. She thinks that things may improve when he gets the prosthetic put in next week, and that POSSIBLY he could outgrow all of this. That is the condensed version. Now we sit and wait until his surgery. Luckily we'll be celebrating Mikey's sixth birthday this weekend which will make the time go by a lot quicker. I'm trying to enjoy every minute of it before Carter has to stay in the hospital again.

Small Prayers

Over the weekend, it was just windy enough to fly some kites. The boys learned a hard lesson when Jovie and I got her kite in the air quite quickly while the boys struggled with the million dollar kite Michael had bought the boys a few years ago. Go Team girls!! The kids thought that it was just about the funnest thing ever!

On Sunday I took Mikey and Jovie to get their haircuts for school. I finally caved in and got Jovie the most adorable little bob cut. She looks like she's about 14 in this picture. What happened to my baby girl :(

The rest of the weekend was spent trying to catch Carter's smile on film before it changes next week. We came close, but these aren't quite it.

Things are getting really crazy right now!! Today Carter had an appointment with Opthalmology, and it went really well. The doc said that Carter's vision is fine.... actually his vision in the right eye (the one he can't blink) is perfect, but the vision in the left is a little far-sighted. It isn't surprising that Carter is going to need glasses at some point, but we are thrilled that there aren't any other major issues. I've been nervous for this appointment for a long time, and it feels wonderful to finally have it over.

We have another appointment with a Pulmonologist tomorrow. We weren't too impressed with the one that was assigned to us during the last hospital stay, so we did some research of our own. We've been given a blessing in that one of our neighbors has a little girl with a rare form of Apnea. She recommended a doctor who happens to be one of the top Pulmonologists in the state (and comes highly recommended by some other people I have talked with). Luckily, although this doctor wasn't accepting new patients, our neighbor was able to get Carter in. YAY! He was scheduled to see her on September 9th, but we got a call today that there is a cancellation tomorrow. I've been praying that we'd be able to meet with her before Carter's surgery so that we could have a game plan in place and let her make any decisions that may come up during his stay, and it came through. God is so good! I will update tomorrow when I can.

Our next week is filled with the doc appts, Mikey's back to school night, Mikey's birthday, Mikey's party, and Mikey's first day of Kindergarten. All of this is followed by Carter's surgery. Yay for chaos!!!

New Outfit

I got the most adorable outfit in the mail today. It was sewn and sent to me by one of my dear "britch" sisters, April and her mom. Here is a link to her Etsy shop if you want to check out her stuff. She is VERY talented ;) http://www.etsy.com/shop.php?user_id=5369558 . Thank you for sending it... we LOVE it! <3

I really wish that Mister Carter would have been in a better mood for picture taking, but it just wasn't happening. I didn't even really get a good one of the entire outfit before he fell asleep. Once he was out, it was impossible to mess with him. Oh well, that's how it goes.

On the feeding front he's still kickin' some booty! I've only had to use his G tube a couple of times in the last week with the exception of his continuous feed at night. It's been really nice to just hold him and feed him without the help of a machine.

Mikey's birthday is coming up next weekend which kicks off a month of pure chaos in our house. Mikey starts Kindergarten the following Monday, Carter's surgery is a couple days later, and then Jovie starts dance and preschool. When did my kids get so big?

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 :)

Stats

Carter visited Dr. Silas today for his 4 month check-up. Our little guy now weighs 10 lbs. 4 oz, and the doc is very happy with that weight gain. He measures 23 inches long. The doc was most impressed with how well his head has grown. Carter is in the less than 3rd percentile for height and weight, but in the 25th for head circumfrence. The doc said that's a very good sign that Carter's getting the nutrition that he needs. The poor little guy got his vaccinations today, so I'm sure that he's going to have a long night of fussiness if he reacts to them like he did last time.

Yesterday was another successful feeding day. I only had to hook him up to the G tube pump once the entire day. I really think that he's got this feeding thing down. I'm just praying that he doesn't revert back to his old ways when he gets his surgery in 20 days... 20 days....wow, it won't be long before my little guy is going to get a different look. The thought of his face changing still makes me want to cry, but know that it needs to be done.

Full Feeding

Just a quick note to let everyone know that CARTER TOOK A FULL FEED FROM THE BOTTLE!!!

We could shout it from the rooftops! A full feed for Carter is 80 cc's which is almost 3 ounces. Yesterday he started taking 50 cc's at every feeding which was a major improvement over the 25 he had been consistently taking. It seems as though something has finally clicked with him, or that we finally found the right nipple/bottle combination. Whatever it is, I'm dubbing the bottle he's currently using the "lucky one", and it will be washed and used over and over until it completely wears out. I so hope this isn't a fluke and that he continues to feed like this. Keep on keepin' on little guy!

Weekend

It was a super busy weekend in our household. We threw a huge yard sale on Saturday and got rid of a ton of stuff. Now we have room to work on finishing the basement. It's going to be a slow process, but at least we can get started. Mikey and Jovie had to fill a box of toys that they didn't want for the sale, and were fine with that until Mikey saw his T-Rex walk away with a lady. He ran in the house to tell grandma that his "heart is broken". Poor little guy. We made up for it by letting him pick out a new toy with the money that he earned from the sale. Everyone had a pretty good day. Today we took Carter to his very first birthday party. We had to go to Michael's sister's house for a celebration for Grandma Geri. He's going to be on a huge lockdown again once RSV season starts, so we need to get his litttle outings in when we can.

Carter has a slow week planned for next week. He will have an appointment with his pediatrician on Thursday followed by a meeting with his hearing specialist on the same day. I'll update with his stats after that. Overall he's been doing wonderfully. Carter has been rolling from side to side a lot more, and starting to keep his hands open instead of clenched into a fist. He has also been sleeping through the night (for the most part) and is definitely on a set schedule now. I'm also going to try and get some new pics this week and will post those as well.