The Special Needs Feeder

Carter finally got his new bottles in the mail today.  Hooray!

He has to use a special bottle because of his cleft palate.  Actually, several special needs kids use it even if they don't have a cleft.  It is called a Special Needs Feeder formerly called the Haberman. This bottle actually didn't work very well for Carter until after his surgery.  Before the surgery he was using a different type of nipple called a Pigeon nipple.  I had hoped that he could stay on the Pigeon because they are much cheaper than the Haberman.  The Pigeon nipple runs about $6 and is sold at our children's hospital.  The Haberman is $17 and I have only found it at two stores in our state. I know that doesn't sound too bad, but these nipples wear out after about 6 weeks, so it adds up quickly.  I'm not complaining one bit because I'm just grateful that he can eat anything by mouth.

Here's what one looks like.

While Carter sucks, milk comes into the nipple and can't flow back out into the bottle.  This way every time he pushes the nipple against his prosthetic, milk will go into his mouth.  You can also give it a little squeeze occasionally to give him more.  It truly becomes a little dance that's a little difficult to perfect.  Here's what the top part looks like taken apart.

The while membrane sits on the yellow valve. This is what releases pressure to let milk into the nipple. Pretty cool huh?!  When I say $17 for the nipple...that's exactly what it's for. Just the nipple.  If we want the yellow collar, valve and membrane then the total comes to $22 with an 80ml container (Which is too small for C), or $26 with a 150ml container.  Luckily, I found a deal on these through a small drugstore in Alabama. I got two of them for $47 shipped.

Christmas

Here is the completed Nativity.  Isn't it precious?  Thank you to our Secret Family for making this holiday season extra special for us. Your notes made us reflect on what Christmas is really about.

Our Christmas was spent at home this year. On Christmas Eve Michael brought home a new Wii game, and we made a bunch of finger foods.   We had a few visitors throughout the day which made it even more fun.  Here are the kids in their new Christmas jammies.

Carter looked so cute in his big boy jammies.  It cracks me up because they are a size 3-6 months.

The kids woke up at about 7:30 Christmas morning.  Carter slept in until about 8:00, and then he wanted in on the action.

Major sleepy eye.

Carter loved his new floor mirror.

Check out these gorgeous gifts!

A Secret Santa snuck these gifts into the back of Michael's truck.  How sweet is that?!  You won't believe what was inside of each one.  Each of the kids got some REALLY nice outfits that included socks, pants, shirts, and hoodies from our favorite store.  Carter got a very soft blanket too! Then one of them had a huge box of chocolates, a Christmas CD, and a photo keychain.  The card was very nice telling us to believe in Santa Claus, and there was a letter that told the story about "Yes Virginia, there is a Santa Claus".  I am seriously floored at how kind this person was to do all of this for us.  Your generosity is too much! Thank you from the bottom of our hearts. The kids loved their outfits, and they were the perfect size. You'll never know how much this act of kindness has meant to us.  We feel very blessed.

We spent the rest of the day hanging out in our pajamas. It was the best Christmas ever!

Carter is nine months old today.  Can you believe it? Nine months old. He's moving right along with things.  I've noticed that I've been lacking in his therapies for the last couple of weeks with the holidays, so for the last two days we've been doing some major workouts. 

I started him back up on cereal, and as you can see he loves it.

NOT!  This is Carter saying "Are you trying to kill me?!?!"

He's actually doing pretty well with it.  I just need to stick with it so he can keep getting better at it.

Pumpkin Patch

We took the kids to the pumpkin patch today.  Carter came too, but fell asleep in the car on the way there so we didn't want to bug him.  I really wanted to get a pic of all of them together, but I'll just have to try and get some at home.

Mikey's first choice of pumpkin was a huge one that wouldn't even stand up.  That kid always goes for size and definitely not for shape or looks.  We talked him into a smaller one.  Jovie, on the other hand, will pick the smallest pumpkin that is practically impossible to carve.  It's funny to see how our kids have such different personalities.

Carter had an appointment with his Pediatrician yesterday.  Everything went well and was uneventful.  I think that the ped is finally on Team Carter.  He told me that he was shocked by how well Carter is doing and by how far he has come.  He said that he truly believed that Carter would surprise a lot of people in his life. We've always believed that, but it was cool to hear it from someone else.

We tried out some rice cereal today.  He took about a teaspoon which I thought was really good.  His goal is to get up to at least a tablespoon by February, so if he can keep it up we're on our way there!  I snapped this pic this afternoon.  I just love those cheeks!  He looks a lot like Mikey in this picture.  Actually, this was Mikey's outfit but he outgrew it when he was 3.5 months.  The pants still fall off of Carter all.the.time.

Dysphagia

Today was Carter's appointment with the Dysphagia clinic.  It was to discuss his feeding with a physician, feeding therapist, and dietician.  All three of those ladies thought that Carter was a Rock Star!  He now weighs 11 lbs 3 oz which if his birth weight were an average weight, he would be in the 97th percentile.  Yay for Carter!  They watched him feed from the bottle and Carter decided to show off for them and took 90 ccs.  The feeding therapist gave him the clearance to start on solids in a couple of weeks. The dietician told us to slowly increase how much he gets during his G tube feeding at night to maintain his weight gain.  We go back in four months, and will hopefully get a plan in place to get rid of the G tube permanently.  Tomorrow is his appointment with the pediatrician and his hearing specialist.  Our little guy had one busy week!

BAHA ~ Bone Anchored Hearing Aid

I met with the new ENT yesterday, and was very impressed by his plan for Carter.  He thinks that it would be a good idea to get Carter started on a BAHA implantation during his next surgery.  The doc thinks that even if Carter has perfect hearing in the left side, it would be an advantage to him to have this placed as well.  So far, Carter would be the perfect candidate for this procedure, but we won't know for sure until after the big hearing test next week.  Here is a link to the information about the surgery: Bone Anchored Hearing Aid .  If you scroll to the bottom, there are pictures to give you an idea of what it looks like.  There is one little negative to this which would be that Carter will have to wear a very soft headband to hold it in place until he turns 5 years old. It's not as bad as it sounds, and I wish that I could find a picture online, but I can't seem to find one.

I also talked with Carter's Pulmonologist today.  He's been doing much better since the steroids, but still struggles at times.  I explained to her what he was doing, and she's decided to put him on an inhaled steroid.  It's a type that they typically give to Asthma patients and will be administered through a puffer with a spacer.  Hopefully this will help him.

Not much more going on.  Carter's been giving his Daddy smiles all night which Michael is just loving.  He's also increased his feedings from 80 ccs to 140 ccs (which is a little over 4 ounces). Holy cow!  He's really starting to pack on the pounds now!

Teeth?! Really?

OK, so I've been terrible about Blogging lately.  Sorry. Here's the update on what our little man is doing.

First, Carter was on steroids for five days to try and strengthen his airway.  They have seemed to work and he's doing much better although he still has an occasional bout with it tightening up.  Those moments are really scary so we're glad that they are declining although we would be happier if he didn't do it at all. We're just going to give him more time to heal.  The weaning of his Oxygen is going pretty well.  He's comfortable at a 1/4 liter which is about where he was way back before the Heart Cath.

Developmentally Carter has been doing some VERY exciting things.  He's started to focus on objects and turn his head to follow them.  He's also taken a liking to the TV (especially Football....not sure where he got that from lol!). As I type this, he's playing on the floor and looks like he's so close to rolling onto his tummy. His eating has been going well, and he weighs about 10 lbs. 10 ounces now.  The last week I've actually felt like I've had a "normal" baby for the first time.  He seems to be like a 3 month old which is about where he should be for his adjusted age.  Our next feat is to get him to start batting at objects.  He seems to be so close to doing it.

Today while I was playing with him I noticed a little white slit on the top of his gum.  I can't believe it, but our little guy has actually gotten his first tooth!  It is on his upper right.  I'm not sure which tooth it is because of the way his gum is shaped on that side, but I'm guessing it's his front right.  He's growing up quickly now!

On Monday he has an appointment with an Audiologist to find out how his hearing is now that the tube in his left ear has been placed. We're hoping for good news.  It would be nice if his hearing was excellent because it would mean that we might not have to do anything for the right ear.  We can only pray!

Mikey and Jovie have been enjoying school.  Life is certainly a lot busier once your kids are old enough to have activities.

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!

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.

Bottles

Carter started off the day with a huge bang when he took 28 cc's from a bottle. That is a HUGE step for him since the most he's ever taken is 20 and that was on a rare occasion. It wasn't even so much the amount he took, but more his enthusiasm for taking it. I can see that he's really starting to enjoy bottle feeds which can only help him to improve. His Occupational Therapist wants him to try taking the bottle with every feeding during the day. We only got to try it a few times today because of a doctor's appt, but at his night feeding he took another 35!!! That's half of a full feeding for him. We couldn't be prouder of our big boy.

He had an ENT appointment today, and it went pretty well. Nothing much happened except for making a game plan for Carter's future procedures. The doctor told us that he's going to wait until September to fix Carter's lip and put a tube in his ear. We were told in the NICU that it would happen in a couple of weeks, and the thought of a hospital stay so soon was pretty daunting so I must say that we feel relieved that Carter can have some time to just grow.

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.