Team Carter

He had a better day today. His cultures are all still negative which is a really good sign since the last time he was sick they were coming back positive within 12 hours. They gave him some blood because some of his levels were low. Probably because they've been taking so much from him lately. When we went to see him he looked a lot better. He had a day of rest from feedings, and they restarted them at 5:00. He seems to be doing well with them so far. We're going to keep praying that he continues to improve.

Bad Day

Carter's having a bad day. Last night they noticed that his temperature was very low, so they tried bundling him more, but that didn't seem to help him. Unfortunately typically an infant will get cold when they are trying to fight off infection rather than hot like older kids do. They ran some tests to see where his white blood cell counts were (these are the cells that are sent out to fight infection), and they did increase from last night to today. The doctors decided to just keep an eye on him since his other numbers on the labs were fine. Now, he's not digesting his food which is a very indicative sign that he's sick again. They are going to do another lumbar puncture (drain spinal fluid from his spine) to check for Meningitis again, and are starting him on yet another Antibiotic. Please pray for Carter. Our poor little guy really needs to catch a break.

Still Growing

Nothing much new to report. Carter's still just hanging out, and growing. They didn't start the bottle feeds today, but are hopeful to attempt one at 11 am tomorrow. Hopefully he'll really like it. For some reason he's been really irritable the last couple of days. His physical therapist seems to think that bottle feeding could really help him. It's almost like he's bored with his surroundings. He just needs to keep growing so we can bring him home. I'm sure that his brother and sister can provide hours of entertainment.

Big Boy Bed

The little guy has made another transition. He was switched from the warming bed to a crib today, and is doing great! He also got some splints for his wrists to help him to keep them straight. He hates them, but he needs to just suck it up and get used to them :) Since he is doing so well on the oxygen, they may try to bottle feed him tomorrow. Hopefully we'll have a great update tomorrow.

High Flow Oxygen

Here is Carter from yesterday. He was pondering being put on High Flow.

He finally did it! Carter was put on the high flow oxygen mask this morning, and seems to be doing very well with it. It is very nice to see his cute little face and head again. We both got to hold him for quite a while, and even passed off some of the videos that we need to do in order bring him home. We know that it's going to be a while, but at least we have them done. Here are a bunch of new pics of his new look :)

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!

Baptism Day

Carter got baptized today. Although it wasn't in a church, or with all of our friends and family, it was still very special to us. We were able to have his godparents, Marty and Nelva, there for the event. Carter had to be sedated because he was thrashing around like a mad man about 20 minutes before his big event. We really think that the little guy is starting to feel better because he's definitely got a lot of spunk and attitude. He certainly did NOT like being messed with today.

The cardiologist came to meet with us again today, and they've decided that since Carter's cultures have been taking longer to grow bacteria, and since his blood counts have been coming back better that it would be best to wait for the surgery. It seems as though Carter is finally starting to fight off the infection, so the doctors want to just wait and keep a close eye on the mass in his heart. They will be meeting again on Wednesday to discuss his case. Until then, Carter just needs to keep fighting, and he'll get another echocardiogram tomorrow. On another positive note, he's now eating 28 CCs (or 1 ounce) per feeding. That's amazing to us since 10 days ago he was only eating about 3.

Easter

We had a pretty good Easter day. The kids woke up early, and enjoyed their prizes from the bunny. They thought that it was very cool when they saw that even Carter got some gifts. Afterward we took them to Carter's hospital to see where he was staying. While we were there, we talked to the Cardiologist about the infection. There is a small mass next to a valve in his heart that they believe is infected and why Carter can't seem to get better. They feel that the only way to get rid of it is to do an open heart surgery. The scary part about this is that the location of the mass is pretty rare (go figure), so this surgery is pretty complicated. He will have to be put on a heart and lung bypass machine while they do it. While we don't like the idea of our little guy undergoing a huge surgery, we know that this is probably the only way that he can get better. The Cardiologists are going to meet again tomorrow to see if they can find any other options, but it definitely sounds like the surgery is going to be the best one. If we decide to do this, it will happen in the next couple of days. With this new information, we've decided that it would be best to get Carter baptized tomorrow. A priest is coming at noon, and Carter's godparents will also be present.

Coming Along

Carter's cultures came back positive for infection this morning. We could tell that he didn't feel very well today, but we're guessing that it's because his knee was hurting him. The doctors are still deciding exactly what they want to do with the infection in his heart. His CT scan of his chest came back clear yesterday meaning that none of it has moved to his lungs. They think it may be an infected clot, and are considering putting him on blood thinners to get rid of it. They drained the knee this morning, but it was already starting to get puffed up when we left. The doctors are kind of waiting to get a game plan together before they do anything else. We did notice that Carter is starting to open both eyes a lot more, and is moving his arms and legs more. It's good to see him becoming more aware of his surroundings. I assured the little guy that the Easter Bunny would be visiting him, and he seemed to like that plan.

Thanks to the sister britches who just sent us an Easter blessing. You know who you are ;)

Two Weeks Old

Carter had another very busy day today. We were told that it would be a quiet day since they cancelled his scope, but as we've learned with Carter, that's never the case. When we arrived he was getting another echocardiogram on his heart AND an ultrasound on his knee at the same time. He developed an abscess on his knee during the night which will most likely be drained tonight. The echo showed that there is a mass that is sitting on one of the valves in his heart. The doctors have been watching it closely for the last couple of days, and believe that it could be a vegetation from his infection. They noticed that it actually got smaller today which either means that the medication is working, or a piece has broken off and gone into his lungs. He got a CT scan of his chest a little later to see if any of the mass is in his lungs, but we haven't gotten the results yet.

The best piece of news that we got today is that his blood cultures came back negative for infection. His white blood cell count also stayed the same which could mean that he's finally beating this infection. Let's hope that he keeps it up tomorrow. Our little chunk also now weighs 5 lbs. 5 oz. He's packin' on the pounds!

Day 13

Carter is still battling the infections, but we're hopeful that he'll start to improve over the next few days. When we showed up he looked like he had a little more spunk in him. His physical therapist showed up to teach us some exercises to do to help Carter with his motor skills. Carter seemed to really enjoy them, and we could even see some improvement afterward. They gave him some sedation and paralytic drugs for his MRI, and it was so sweet to see his little face all relaxed. Here is a picture of it.

His MRI showed that he doesn't have an abscess on his brain which is really good. It just means that we still don't know where the infection is coming from. They believe that it could be in a valve in his heart, but the fifth echocardiogram hadn't come back yet. If this is the case, then they feel they are treating it correctly. We just need to keep waiting to see if the treatment is going to work.

As for the unofficial news... this is actually a kind of funny story... When Carter was in for his MRI, his oxygen monitor on his hand wasn't working correctly. The doctor decided to put it on his ear, which he soon found out Carter left somewhere in the womb (along with his gall bladder). This sparked the doctor's interest, so the nurse asked him to see if there was an inner ear on each side. She told us "unofficially" that Carter does indeed have inner ears which we hope means that he will be able to hear some day. While we know that he still needs an exam by an ENT to confirm this, we'll take a win wherever we can get it!

Sick Boy

We still haven't made any progress on his infections. The doctors have ordered all types of MRI's and Ultrasounds to try and figure this out, but they just don't have any answers right now. It seems like with every test we learn more about this puzzle of a boy. Today we learned that he may not have a gall bladder which is really no big deal, but it just adds to the questions. The good news is that he has been tolerating his feeds really well, and he is up to 5 pounds 1 ounce. He also had a period of time today where he had both eyes open, and looked at us. Tomorrow we have an appointment with a physical therapist to show us some exercises to do with Carter to help him develop his motor skills. We're hopeful for a very good day.

Please Pray

Today was a not so good day. Little Carter still isn't getting any better with his infections. He now has it showing in his spinal fluid meaning that he has a form of Meningitis. The Infectious Diseases team assessed him today, and think that one of his IVs may be the reason that he wasn't getting any better, so they stripped him of any unecessary IVs and the catheter. Our wish came true, and he did lose some luggage, but not in the way we wanted. Sometimes you really do get what you ask for. They think that he may have an infection in his heart as well, and are going to do an echocardiogram tomorrow to see. His liver is also very enlarged, but is functioning properly so he will be getting an ultrasound on that tomorrow as well. They switched up his antibiotics to see if that will help. He really needs prayers that he can shake this infection.

We also met with the ENT, and as soon as Carter is better they want to do the scope down his throat. They want to check his airway for any possible clefts which could explain his breathing problems. This is tentatively scheduled for Friday.

The Geneticist got the Chromosome tests back, and confirmed that Carter has an abnormality in one of them. I'm not going to go into all of the mumbo jumbo, because quite honestly, I didn't understand all of it, but basically Carter has a small part of one of his chromosomes missing and it is replaced by something else. They are going to do further tests to find out what it is so we can get an idea of what Carter's future looks like. The Geneticist told us that since he has a Chromosomal problem that there is a 95% chance that he will have some sort of mental disability. There is a wide range from mild to severe that he could have, so we are going to stay hopeful that it is in the mild range. Either way, we know that Carter is a very special little boy and we are going to do EVERYTHING we can to make sure that he lives life to his fullest potential. We know that all of our family and friends will help to support us in giving Carter the love and care that he needs. God most definitely sent us this little blessing for a reason, and we are ready for the challenges that lie ahead. While we know that this was important news, we want to focus our efforts on getting him past this infection so he can improve on his eating and breathing. We're very ready for him to come home.

CT Scans

Our little guy looked really good today. He did well with his feedings throughout the night and today. We are glad to see that he's making steps in the right direction with that milestone. Carter had a really big day today. He started off with a CT Scan of his head and chest. We only got the results of his chest CT and it shows that the blood vessels don't constrict his airway, so we still need to figure out why the little guy has trouble breathing. We're hoping to find out about his ears tomorrow. His chromosome test came back as well and did show a small abnormality, so we need to do further testing to find out exactly what it is. That test is going to take a couple of weeks to get results. Otherwise, he just rested. His blood cultures still came back positive for infection, so he's still trying to fight it off. The Neonatologist did say that he thinks that Carter may be ready to come off the ventilator soon. He is on the lowest settings, and he seems to be breathing fast which makes them think that he's trying to breathe without the help. We're going to keep on praying for good news tomorrow.

Nine Days Old

Today was a quiet day for Carter. He really needed some rest, so they gave him sedation to help him relax. Carter is still fighting off the infections, and had to be given some platelets and red blood cells to help him on his way. Those have really seemed to help, but we really won't know until his cultures come back in the morning. Since he is on sedation, his bladder started to not work properly, so they gave him a catheter. Every time we visit him it seems that he gains more luggage... he's now up to 3 IVs, 4 monitors, a feeding tube, a ventilator, and a catheter. Hopefully he'll start to drop some soon. The doctors started his feedings again, and he seems to be tolerating them rather well. He really looked pretty good today, so we're taking that as a really good sign that his body is doing what it should. Tomorrow is a big day for the little guy. He'll be getting a CT scan to see what exactly his inner and middle ear look like, and also to see if the blood vessel across his airway is impairing his breathing. Let's keep our fingers crossed that we'll get some answers.

We also wanted to thank everyone for their prayers and well wishes. Thanks to all of our friends and family for the MANY ways that you have helped us through this, and thanks to Michael's work for your generosity and for the cookie bouquet. Those aren't going to last long around here.

Square One

Well, we're back to square one on a few things with Carter. Last night he was having a lot of trouble breathing. They think that it's because of his infection, so they decided to help him out by putting him back on the ventilator. We're glad that he's getting the help he needs, but a little sad to see him take some steps back. Hopefully now he can concentrate on getting better. They are also suspending his feedings again until he starts to feel a little better. His cultures came back and show that he has a Urinary Tract Infection, and an infection in his blood. His platelet count is a little lower than they would like, so it's possible that he will have a blood transfusion tonight. He's really a sick kid right now, so please pray that he can overcome this quickly.

Today

Today was a pretty good day. Things got a little scary for us when on the way up to the hospital, the doctor called to tell us that Carter has an infection. She wanted permission to take some spinal fluid from him to test for Meningitis. The doctor thinks that it's unlikely that he has it, but they want to cover all of their bases. Poor little Carter got sent through the ringer today. He had a VGUC this morning which tested his bladder to see if any of the urine was refluxing back into his kidneys. We found out that his actually does, so that is just one more thing to add to his list. I guess that this kind of thing can cause a lot of urinary tract infections, so they believe that could be the infection that he has. We won't really know for sure until all of the labs come back on Monday. The treatment for that problem is to be on a low-grade antibiotic until he either outgrows it, or has surgery to correct it. The doctors didn't really seem to concerned about it at this point.
We also got the results of the echo back, and found out some problems. First, he had a valve that should have closed at birth, but was open a few days ago. The echo from yesterday shows that it has almost closed on it's own, so we have nothing to worry about as far as that goes. The second thing they found was a valve that crosses across his airway that really shouldn't be there. They are going to do a CT scan on Monday to see if that is what's preventing him from coming off of the high-flow Oxygen mask. If that is the problem then it will need to be corrected soon to help him with his breathing. If not, they acted like it was nothing to worry about. They did suspend his feedings when they found out about his infection, but fed him 10 ccs when we left. Hopefully he'll digest it.
The Plastic Surgeon came to visit Carter today, and told us that they would repair his lip at the age of 3 months as long as he weighs 10 pounds. His palate will be repaired at age one, but will require two different surgeries. His prostetic ear will be done at about the age of 5. All in all, it was a good day, and it was nice to feel like we're making some progress on everything.

One Small Step

There really aren't too many updates from today. The nurses said that he had a great night, and was perfectly content as long as he was on his tummy and had a pacifier in his mouth. He also got to stay on the prong mask which was awesome. Carter had an ultrasound on his heart, but we haven't heard the results quite yet. They did initiate feedings again. His tummy didn't digest much from the first feeding, but it did work on the second and third one. This is a huge milestone for him, and we hope that he keeps on improving. Another good thing was that he managed to pull himself out of all of his episodes of not breathing without any help. As soon as he can stop having those episodes for a week and continue to feed we can bring him home. Keep on going Carter! Your brother and sister REALLY want to meet you.

The Big Move

Carter was transported to Primary Children's Medical Center by ambulance today. It was quite the process to get this little guy into a small incubator, and get him there safely. He definitely enjoyed the ride, and slept for most of the way. The transport team was very sweet, and even took some pictures with a disposable camera of his ride down south. After I get them developed, I'll post some pictures of it. When we arrived, there were a slew of doctors waiting to see him. It's amazing how much faster paced this hospital is, and you wouldn't believe how many tests and exams he had today. He has a few more scheduled for tomorrow. The doctors decided to take him off of the other type of ventilator and put him on a high-flow prong mask. He definitely liked it a lot better, but it's pretty likely that he'll be on the old mask by tomorrow morning. Since it's a lot easier to hold a baby in a prong mask I got a chance to hold him for the first time since Friday night. It was awesome, and I wish that Michael would have had the chance to do it too. Unfortunately, Carter decided to have one of his episodes of holding his breath, so our cuddle time got cut short. The doctors also noticed that he has a dimple on his lower spine which they said could cause him to have trouble walking, or possibly paralyze him. Luckily, the ultrasound showed that this is not the case, and he shouldn't have any problems in that area. All in all, it was a pretty good day, and we really feel that he's going to get much better care at this facility. Tomorrow they will be doing a test on his Kidneys just to be sure that they are working properly, and he will also have a tiny camera check out his ears and throat. Hopefully we'll have more news on his hearing. Thank you all for your continued prayers and support.