Showing Our Love And Support

Michael had these very cool bracelets made up to show our love and support for Carter. How cool are they?

If you would like one, send me an email at teamcarterjay@gmail.com with your address and what color you would like. The only stipulation is that I need a picture of everyone wearing them in return. Nothing in life is free, right?!

A Day In The Life Of Carter. Part 1

I've been wanting to do a post like this for awhile, but just hadn't quite got around to it.

I want to show what a day in the life of Carter is like. To my readers that have medically fragile kids, this is going to seem all too familiar. To my readers who think that all of this stuff looks really overwhelming, let me tell you that there are a lot of mommies out there dealing with a lot more...we really have it easy. We don't have nearly as much equipment, or medications to give as we could have.

To get a feel for how a typical day goes for Carter, I have to tell you about some of his equipment.

Here is Carter's "corner". Yes, he still sleeps in Mommy and Daddy's room. He'll probably be here for quite awhile since his room is on the other side of the house. Luckily, his crib fits nicely into the corner. Michael put a shelf above to hold his monitor, G tube dressing supplies, headbands, and diapers. No worries, that shelf is bolted VERY well to the wall, and isn't going anywhere. Yes, that's a DVD player in his crib....he's so spoiled!

Here's a look at his feeding bag and pump. We hang the bag from a hook on the wall to prevent having to use an IV pole. We just put the formula in the bag, and the pump pushes it through the tube...

,,,and into his tummy through his G Button. This is how he gets his medications as well...I just inject them into a med port in his feeding tube. Lucky for him he doesn't need to taste those disgusting smelling vitamins. He only gets fed this way once in the early morning, and sometimes right before bed. I'll show you how most of his daily feedings go on the next post. Aww. Look at that scrumptious belly!

Here's his hearing aid battery tester. I test it every night before I shut off his hearing aid. I usually have to change the battery once every 3 days.

Here is Carter's BBG machine. It sits on our bathroom counter which is right by his crib. We use it to suction all of his lovely secretions out of his nose and mouth. I typically only have to use this right when he wakes up in the morning unless he's got a little cold, or bad Acid Reflux. It sounds like an air compressor which is always nice at 3 am. The hope is that we won't need to use this as much once his soft palate is repaired on May 19th.

Here is Carter's "red foot". This is a sensor that he wears which hooks up to his Oximeter. He used to have to wear a blue cover over it, but our home care company sent us this new type that doesn't require the cover. This measures his heart rate, and how much Oxygen is in his blood. It works great most of the time....as long as Carter doesn't move at all. Even the slightest movement can make the sensor get a false reading.

Here is Carter's Oximeter. This is the monitor we use to read his heart rate and Oxygen levels. The number on the top right (98) shows the percent of Oxygen in his blood. Ideally we want to keep that above 92, but the alarm doesn't sound unless it goes below 86. The number under that is his heart rate (102). The wavy line on the left shows how good of a signal the monitor is getting. You typically want even peaks and valleys. If the waveform is all over the place then you know that you're getting a bad signal which can give a faulty number reading. Carter used to wear this monitor all day every day, but now that he's bigger and moving around so much it's constantly going off. He typically only wears it when he's sleeping, when he's having a bad day, or when we're driving to the hospital since it helps me to keep an "eye" on him while I'm driving.

More to come tomorrow!

Lord Of The Bracelets

Carter's slowly getting better. He was supposed to have Occupational Therapy today, but got tired very quickly, so we had an easy day. Ughh! This month has been so frustrating because I feel like Carter is getting really bored like he wants to get rolling and sitting, but he physically can't even try when he's sick. This is how it is quite often for Carter...two steps forward, one step back. Like our motto says, we just need to keep on keepin' on! Michael had some Team Carter bracelets made, and here is little C showing off his grabbing skills with one.

"My Precious" ... this picture reminds me of The Lord Of The Rings.

Carter got some exciting things in the mail today too! He has a little crush on our friend Kathy. She's always on the lookout for him, and sent him these awesome glasses to help protect his little eyes at Mikey's Soccer games. I PROMISE to get some better pics of him in these adorable glasses, because honestly this pic doesn't do them justice, but I had to show you. Thank you Kathy! XOXO from Carter!

The kids have also been getting some letters from a doggie named Chico (pics of this cutie pie to come soon). Chico is telling his story about how he had a bunch of surgeries, and how they helped him to be healthy and happy. Mikey and Jovie are loving it, and I think it's helping them to understand what happens when Carter has surgeries. Thank you so much to our cousin Pat for taking the time to do this for them. We really appreciate it!

I Was Wrong

It wasn't a vaccination fever.

He wasn't getting any better by Friday, so I took him in. Again. I feel like I'm spending WAY too much time at the Peds office lately, but that's OK. Could be worse!

Either his UTI never went away, or he's got another one. The doctor gave him an injection of Antibiotics and put him on another round of oral antibiotics. Hopefully it will knock it out this time because I really miss my baby's smile.

He's slowly getting better. I'm praying that he'll be more like himself tomorrow. We really need him to kick this infection quick so we don't have to postpone his surgery.

Since he hasn't felt much like playing, Carter's got himself a new favorite pass time. He's LOVIN' Baby Einstein videos right now. It's so cute to see him watch them.

Everyone else is doing well. We've had a low key weekend playing in the yard and planting flowers. It's so nice to be in the sunshine.

If you have a moment, could you please spare a prayer for little Carly's family? She went to heaven on Friday which was a huge shock to everyone. Our prayers are most definitely with this sweet family.

Feverishly Cross That One Off The List

I tried to come up with a unique title, but I'm not sure if it really worked.

Anyway, Carter's got a fever.

Again.

It started yesterday morning with a little fast breathing and developed into a fever within an hour. He was pretty miserable for the rest of the day and through the night. The good news is that I'm pretty sure that it's a reaction to his MMR vaccine that he received on Monday afternoon. With my other kids the fever develops that night, but as we all know...C likes to be different. He shows no other symptoms other than those caused by the fever, so I'm not too worried (hopefully I don't need to be). He's acting like himself today, so it may be gone by now. I've been giving him meds, which is keeping it in check.

We got some good news today. Carter's bloodwork from last week came back normal, so we don't need to see the Endocrinologist anymore. We actually get to cross a doctor off of our list for once! WOO HOO!

Ninja Carter

Apparently this is how Carter prefers to wear his headband these days. Who needs to see, when you can hear?!

I've been terrible at this blogging thing lately. I even need to get caught up on my blog reading!

Today we took Carter to watch Mikey play Soccer. It was so much fun to be in the sunshine as a family. Mikey's moving along with his Soccer skills although he tends to follow the pack most of the game. He did score a goal last week! Here are some of my favorite shots from today.

Take that girly pink ball!

Taking A Break

Oh the frustration!

Carter's still working on gaining back his strength. His airway still sounds wonderful too! I got a call from the hospital letting us know that the Opthalmologic Plastic Surgeon is going to be able to piggyback onto his other surgery in May. He's going to be loosening that right eyelid to make it more uniform with the left eye. Really the point of that procedure will be to make it so his eyelid closes more while he's sleeping. The doctor warned us that Carter's going to look a bit like Rocky for about three weeks after the surgery, but that's OK...it's for the greater good right?

It's funny to see how Carter cycles through the things that HE wants to work on. Last week it was standing, and this week it's rolling. He's got a ways to go before he'll have the strength to do back to belly, but at least he's trying. He's never even tried before so that's pretty exciting to me.

I laid him on the floor propped up on his elbows, and guess what he did today...he rolled from belly to back!!

It took him about two minutes, and wasn't a fluid motion, but he did it! TWICE! I know that it's going to be harder for him to learn when he's completely flat, but I'm confident he'll figure it out. I love it when he learns something new. Ahhhh, it's the small things. Here he is working on it yesterday.

I'm going to be in SERIOUS trouble for posting this next pic, but I can't help myself. It's simply perfect!

Bad Blogger

I know, I know. I left you all hangin'

Carter's feeling MUCH better now. He started acting more like himself on Saturday, and just keeps getting better and better. He has been sleeping a lot, but that's not surprising since he went through a whole week of sleeping about an hour a night.

We had Occupational Therapy today, and Carter did so well! He's certainly lost a lot of strength from being sick, BUT his airway sounds SO good.... I hope I'm not jinxing anything, but I think we *might* have finally found the right combo of drugs to keep his acid reflux at bay. Today was the very first time that Carter has been able to make it through 45 minutes of therapy without any breaks due to heavy breathing or whistling in his throat. We're just going to keep on praying that he keeps it up.

He's got a somewhat busy week this week. He has two more therapies tomorrow, a blood draw on Wednesday, and a follow up appointment with his pediatrician on Thursday.

We got an exciting thing in the mail today. I posted awhile back that I was asked to write a quarterly article for Michael's work newsletter, well, my first issue arrived in the mail today. I think it turned out pretty cute...the bear they put on there is so cute!



Here's the article:

Did he just smile at me? There is no way that he just smiled at me. After all of the trauma that he had been through, there was absolutely no way that he could be smiling at me….but there it was again. Was it a smile? My thoughts drifted back to the minutes after he was born. The doctor looking at me over the top of his glasses. The way he told me that he was sorry, but our baby had a cleft lip. His nervous voice as he told the nurses to get the NICU in there. The distraught look on my husband’s face as he told me that our baby, our son, was missing an ear. The sounds of the nurses pushing on his chest and telling him to breathe. I nervously waited for at least one little whimper. It was a whimper that never came. I could only take a glimpse of him before he was whisked out of the room. How had all of this happened? Why was our baby born like this? We didn’t deserve this…he didn’t deserve this.
In those moments I wasn’t sure if I was strong enough to do this. I wasn’t sure if he was strong enough to make it through. Life had taken us all by surprise and left uncertainty in its wake, but we were here now and I think that he might have possibly just smiled at me.
He had spent ten weeks in the hospital. That was 83 days of waiting for him to come home. There were 1,992 hours of having our baby live one hour away from our home. His brother and sister hadn’t even seen him. During that time we had no idea if he would ever get to come home. Infection had taken over his little body making him so sick that he couldn‘t even cry. The machines were doing everything for him except making his heart beat. How does a five pound baby overcome serious illnesses like Spinal Meningitis and Endocarditis? We could see the worry on all of the doctors faces, and the doubt when they told us that they didn’t know why he continued to stay sick. They did not think that he would make it. He was poked and prodded relentlessly with needles. His knee began to bulge where infection had started to attack his bone. His foot had been burned from the inside of the vein out to the top of his skin where medicine had eaten it away. We would visit him, and he would be unrecognizable at times with all of the tubes, wires, and masks that were covering him. We could not hold him, we could only stroke his hand and pat his tiny head. If he was smiling at me now, he was telling me that he was OK. That he was going to be OK. How could he possibly be OK after all of that? He couldn’t have just smiled at me.
Finally the day came when he started to get better. His body began to heal. We learned that he had a genetic disorder which would give him many struggles in his life, but we knew that our little boy was special. We still believed that we did not deserve this, but in a different way. We did not deserve this blessing. He was much stronger than anybody had given him credit for, and now he might be smiling at me.
We had named him Carter which means “one who carries or carts”. Yes, he has a lot to carry in his life, but we will be there to ease the burden. We will be there to support him, and love him, and watch him change the world. He will carry us on this journey. We are part of his team. We are Team Carter.
He had been home for three months. I’m talking to him and waiting for his Occupational Therapist to come for a visit. I think that he just smiled at me. The therapist comes into our home, talks to Carter, and asks “When did he start smiling?”

What A Day!

Well, we ended up in the ER, but we're home now with some answers.

As I was getting Carter ready for his appointment today, he started to turn a very pale gray color and his lips were very blue. Typically that would mean that his Oxygen levels were low, but according to his monitor he was at 100%.

Then he started crying, and he wouldn't stop which is VERY unlike Carter. We decided that it would be best to take him to the children's hospital, so we started out on the one hour journey. About half-way there, Carter was freaking out so badly that I took him out of his car seat and held him the rest of the way. Anyone who knows me, knows that I'm a freak about car seats, so that should tell you how bad it was. When we got there, he finally fell asleep.

We were fortunate enough to get a Resident Doctor who had done a rotation with the Infectious Diseases team while Carter was in the NICU. He remembered Carter before he'd even come into our room. I don't typically pay much attention to Residents, but this one was on top of it. On our way to the hospital, Michael and I had discussed different things that we thought it might be, and we thought he may have an Urinary Tract Infection. Carter takes a low dose of Septra (an antibiotic) to prevent those since his urine refluxes back into his Kidneys. When he was sick last week, the doctor put him on Amoxicillian and told me to hold off on the Septra until the Amox. was done. Evidentally the Amox. wasn't strong enough to fight off UTI's because that is exactly what he had. After a respiratory viral panel and chest X-Ray we got the positive on the urine cultures. We're really lucky that we got this particular doctor because he agreed with our theory and tested his urine while the Attending thought it was probably a waste of time and was pushing for something respiratory.

All is good. We're home now, and he's sleeping peacefully.

A Little Prayer Please

Carter has been doing fabulous the last couple of days. He's been extremely smiley, and playing like crazy! He really hasn't slept well, but that's common for him after he's been sick.

Today he woke up with a fever of 103.5. It's freaking me out since he's been on antibiotics for almost a week now. We have an appointment in a few hours.

If you wouldn't mind could you say a little prayer that the doctor will have the wisdom to figure out what is wrong, and that it's nothing too serious.

Thank you for all of your positive thoughts and prayers. I'll update again when I can.

Our Easter & The Unveiling

This was Carter's first Easter at home. He still wasn't feeling all that good, but he sure did enjoy some of the prizes that were in his Easter basket.




This next pic was taken before they tore into everything. Carter wasn't quite awake yet!

Carter certainly enjoyed hanging out with Papa! He loved trying to grab his mustache.


On another note, I've finally finished designing our Team Carter T-Shirts. What do you think?

They are going to be printed on white short sleeved shirts. I'm so excited!

Better

The little guy is starting to get better. His Oxygen needs went from 1/2 liter to 1 liter last night, but by morning he was back to normal. He seemed a lot more like himself today although he still wanted to cuddle a lot (I'm not complaining...I promise!).

He was absolutely thrilled to help the older kids dye Easter eggs today.


This is Carter saying "Get your hands off of me woman!"
Look at that boy! I just want to pinch his cheeks...but he's told old to let his Momma do that now.

Such a sweetie!

Are we done with this whole thing yet? What are you doing to me?!