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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.

Draft Day

Today was Carter's very first NFL draft day. Anyone who knows our family, knows that this is a VERY big day for us. Luckily the nurse had dressed him in a football sleeper to get him prepared. He had a great day! They decided that since he's been doing so well on CPAP, they took him off of the rate part of it. That means that the mask no longer blows extra air into his nose every few seconds. Instead, it just keeps a constant pressure. As long as he does well on this, he should be moving to the high flow mask in the next day (let's keep our fingers crossed). Daddy got to hold Carter first today, and they got some "guy" time. Poor Carter is surrounded by women all of the time, so it's good for him to hang with his dad. I'll post some pictures of their bonding tomorrow. Nothing else has changed. It seems that our updates are getting shorter, but that is DEFINITELY a good thing. We can't wait for the day that our post just reads "he's home".

Massage and Genes

Carter is getting be quite the big boy. When we showed up today, he had a new music player in his crib. He really seemed to like it! The physical therapist showed up and taught us some new massage and stretches to do with Carter to help him from being so tight. She was very impressed by how far he has come, and anxious to get started on bottle feeds. Carter will need to graduate from the CPAP first, but it's nice to know that the bottle feeding is around the corner. He did really well today, and it's obvious that he loves to be held. The therapist also talked to us about his cleft lip/palate surgeries, and got us started on applying for early intervention for when he comes home. It feels good to make some progress.
We also met with the geneticist, but didn't learn much more than we already knew. Carter is a unique case, and will most likely end up in the medical books. We plan to just let Carter tell us what he needs and give him everything we can to let him live life to his fullest potential. Overall it was a great day. I'm going to post some new pictures later tonight.

Making Up For Lost Time

Carter is still doing well. He wasn't quite ready to be taken off of CPAP this morning, but he was all bundled in some very cute onesies. I got to go in at 2:00 and held him for 2 hours straight. That's right...no breaks from mommy! We had to make up for some lost time. He just cuddled up to me and relaxed. Daddy is up there visiting right now, so let's hope that they are getting some bonding time in too. Also his labs came back free from any respiratory viruses. His cough is most likely from being taken off and put back on the vent so many times. He will get another echo of his heart done tomorrow, and we're supposed to talk to the Geneticists about the results of his second round of Chromosome tests.

To Be Held

It was another great day for Carter. He's been doing so well on the CPAP that they are going to try and move him to a high flow oxygen mask in the morning. His weight stayed the same (at about 5 lbs), and he seems to be tolerating the higher calorie addition to his milk. When I went in tonight the nurse handed him to me and told me to hold him while she changed his bedding. It was such a relief to have my tiny baby in my arms again and I hope that Michael will get the chance to hold him tomorrow. It's weird that I thought he was looking so big in his bed, but when I held him I could tell how tiny he really is. The nurse told me that she is going to start dressing him in a sleeper tonight to keep him warm, and she took his bed scale out because the bed scales are only for "really sick babies". Our little guy is growing up. He has developed a cough which they think is just irritation from the ventilator, but they are testing him for a respiratory virus just to be safe. We should have the results tomorrow.

Cutie Pie

The little one is still doing great. He got put back on CPAP today, and seemed to be doing even better than he did the last time he made the transition. Maybe he's becoming a pro at this breathing thing?!?! He did lose a few ounces over the last few days taking him down to 4 lbs 15 oz, so they are adding a calorie boost to the milk in his feeding tube. Both of his scans from yesterday came back clear, so now all that Carter has to concentrate on is getting bigger, eating, and breathing. The nurse set a goal for us to hold him tomorrow. We're keeping our fingers crossed.

Here he is chillin' with a paci.

Little Guy

Today was a very busy day for the little guy. He had a CT scan of his brain and a bone density scan scheduled for this afternoon. They had to put him back on the ventilator just to transport him downstairs for the both of them. We don't have the results from either, but did get the results from his Echo on Friday, and the mass is continuing to shrink (Yay!). When we arrived after his scans he looked beat. Poor little one. He is going to start on steroids tonight to help with the inflamation of his airway from being put on the ventilator, and will hopefully be back on CPAP by 8:00 am. Nothing much more to report.

Sunday

Overall he had another good day. He's still struggling on keeping some of his numbers good enough to stay on the CPAP, so it's possible that he'll be back on the vent tomorrow. The doctors may possibly put him back on it just for his MRI, and then back to CPAP. We'll just have to see what the day brings. Little Carter even sucked on a paci for a little while today. He'd better keep practicing so he can start drinking from a bottle.

We also wanted to give another thank you to all of our family and friends for pulling us through all of this. We really don't know what we would do without all of your love and support. Our sweet nieces made some cards and poems for their little cousin, and we wanted to share one of them with everyone. This was written by our darling niece Samantha who is in the sixth grade:

"Sadness is like the color blue.
All I can think about is Carter.
I see pictures of him.
I feel the window.
I smell the hospital.
I hear people talking about him.
I taste the salt of my tears."

One Less Tube

Well, Carter got off of the ventilator today, and was put back on CPAP. He seems much more comfortable, and it's good to see him without all of the tape around his mouth. At first it looked like he may have to go back on the vent, but he managed to push through and is doing excellent now. We're praying that he can stay off of it, but know that it's possible that he'll be put back on it. Nothing else to report today. We had a great week, and hope that it continues on to next week.

3 Weeks Old

Carter had the scope on his airway done today, and it came back clear. Yay Carter! He should be weaned off of the ventilator tonight. That means that we might be able to hold him tomorrow. He also had another echo, and the tech said that the mass definitely looked smaller, but we're still waiting on the official results. It was another good day.

Thursday

It was another good day. Not much has changed since yesterday. Carter is still being weaned from some of the medication, and he got his central line put in. An Opthalmologist visited him today, and says that he sees nothing wrong with his eyes. Tomorrow is a big day because he is getting a scope sent down his throat to check for any abnormalities in his airway. Keep your fingers crossed that it's all clear!

A Good Day

Carter had a really good day today. When we showed up, he was all bundled in blankets with another one over his head. Apparantly his room was really busy today, and he definitely didn't like the commotion. His little cocoon helped him to relax, so he went almost the entire day without sedation. I guess we'll be purchasing a bunch of swaddling blankets.

The doctor told us that Carter is heading in the right direction now. His cultures have come back negative since the 11th meaning that there is no infection in his blood. He will be getting a central line put in tonight which will eliminate the other IVs and will make it easier for the nurses to administer his medication. That means less "stings" for Carter. They also said that they have weaned him off of his nutritional supplement since he is doing so well on his feedings. He is starting the weening process of another medication, and the ventilator as well. As for the mass in his heart, the doctors have decided to keep a close eye on it for a little longer. He should be getting another echocardiogram tomorrow. He is scheduled for a scope on Friday to check his airway. On Monday he will have an MRI on his brain to check on the Meningitis. He will also have a bone scan to be sure that the infection didn't compromise his bones.

Tuesday

There really aren't many updates from today. Carter had another echocardiogram, and they believe that the mass may be getting smaller. We'll hopefully have an update on the plan tomorrow after the cardiologists have their meeting. He's also stayed negative on his blood cultures which means that his body is still fighting off the infection. Mikey and Jovie went up to the hospital today for a "sibling hour". A nurse showed them pictures of the NICU, and explained what all the monitors and tubes are for. The kids seemed to really enjoy it, and seemed proud to talk about Carter. They were so cute!