Service Information

I think that we finally have Carter's service information set.

Viewing: Wednesday, June 2nd from 6:00-8:00 pm

Lindquist Mortuary
3333 West 5600 South
Roy, UT 84067

Funeral: Thursday, June 3rd at 9:00 am. (almost exactly one year since we brought him home)

St Rose Of Lima
210 South Chapel St.
Layton, UT 84041

We will be burying him at Clinton City Cemetary right next to his Grandpa Mike. There will be a luncheon at the church after the graveside service.

Fly baby boy....fly high! Fly right into the arms of Jesus!!

Our very good friends, The Mitchells, brought us this gorgeous sketch to us tonight. Thank you, and we love you so much. It will be the new focal point of our home. Thank you Jill for taking the time to do this....you are amazingly talented!

Thank you for all of the support everyone has shown us over the last few days. Our little guy was so loved!

The Newest Angel

At 12:45 today, Carter was called home.

He grew his little wings very peacefully in his mommy and daddy's arms.

Carter, I love you more than anything in the world. You have been my life for 14 months, and every single second was well worth it. I would do it all over again in a heartbeat. I never knew what love was before you were born. I never appreciated the little things before you were born. I never had so much faith in the lord until you were born. Thank you for all of the wonderful gifts you blessed us with. I love you baby boy...save me a place next to you in heaven. Have fun partying with your Grandpa Mike!

Blessings And Goodbyes

Today was a truly blessed day.

We had the priest come to give Carter the Anointing of The Sick (also known as The Last Rites). The majority of our friends and family came up to say goodbye to the little guy, and we spent the entire day just celebrating Carter. It felt as though love was enveloping him, and I'm so glad that we got the chance to do that.

A photographer from Now I Lay Me Down To Sleep came and took some pictures. I can't wait to see them...especially some very sweet ones of Little C and his Daddy.

Carter looks as adorable as ever, and seems to be prepared for whatever is to come tomorrow.

We love you little Carter. Thank you for showing us what real love is. Of course we want you to stay with us in this life, but we understand if you feel that it's your time to move on. Thank you for choosing us to be your Mommy and Daddy, you have no idea how happy you have made us.

Sunday

We heard back from the Cardiologist and Cardio-Thoracic surgeons today.

They do not believe that a surgery would help Carter's airway. His airway is so damaged, and the part that could possibly be compressed would not make a difference. The ENT said that this is the worst airway he has ever seen. With such a very low chance of this surgery working, we have chosen to not pursue it. Our baby boy is suffering, and it's time to put a stop to all of the torture he's been through.

We have chosen Sunday as the day that God will choose whether Carter will continue to bless us in this life, or grow his little wings and join his Grandpa Mike in heaven. The doctor will remove his breathing tube, and see what Carter does. If he is struggling, they will give him some medicine to make his passing painless. As bad as all of this sounds, we really are at peace with this. We feel like our little guy has been through enough, and we pray that if he does pass...it will be quickly.

Tomorrow is a day filled with blessings, visits from friends and family, and a photographer from Now I Lay Me Down To Sleep.

Thank you so much for all of your prayers and support. I know that some of our readers have been with us from the very beginning and have shared in this journey with us. This sweet boy has touched so many lives in his short 14 months. I am going to ask you one more time to pray for little Carter. I'm asking you to please pray for peace for him....whether that be from breathing without a machine, or growing his little wings. The little guy just needs peace.

No News Is Good News...Right?

As I had expected, we did not hear from the Cardiologist today.

He did stop by Carter's bed early this morning, and discussed the scans with the Attending doctor. It sounds as though they both agree that a surgery could be helpful, but he needed to pass the case on to a Cardio-Thoracic surgeon. As a test to see if taking the pressure off of Carter's airway would help, they put him on his tummy. Amazingly enough, his pressures and breathing were instantly better. We think that's a good sign.

The surgery involves tacking Carter's Aorta to his chest wall. We didn't hear too many details about it, but do know that it is risky....but not quite as risky as open-heart surgery since they will not need to put him on bypass. In our opinion, it is our only choice so we are hopeful that the surgeons are willing to try.

Hopefully tomorrow we'll be able to talk to the surgeons, but until then Carter will be sleeping peacefully on his tummy.

Along For The Ride

What a day!

When we arrived at the PICU, the Attending doctor came to have the Do Not Resuscitate talk with us. After talking to the ENT, she had changed her stance on Carter needing more time. His trachea has collapsed so much that there is no way that he wouldn't need a trach with a vent. The Attending had decided against the chest CT yesterday because she felt it was unecessary, but went ahead with it today.

In the afternoon we called Carter's Pulmonologist doctor and talked through it with her. Unfortunately, she felt the same way except she thought that with time he may be able to come off of the vent.

We continued to struggle through the decisions we had to make. Should we trach and vent him, or should we just let him go. I hate that we are in this position...I just don't feel like we should have to be the ones to decide the day that our baby grows his wings.

At six o'clock the ENT finally came to talk to us, but first he took a look at the CT results.

What he found gave us even more hope.

Carter's heart and blood vessels have shifted to the right which is causing his trachea to collapse.

The ENT told us that there is a possibility that a surgery may correct it, but he would have to pass the case to the Cardio-Thoracic surgeons. We will probably hear back from them tomorrow or Friday. He said that he didn't want to give us false hope, but that he knows that they do surgeries like this a lot. Whether they can fix Carter's shifting or not would be up to the heart docs.

The surgery would be extremely risky as it is basically an open-heart surgery, but it's better than the alternative in my mind. Especially since the shifting will most likely only continue to make his airway worse.

We have renewed hope, and I feel as though we have some direction as to which path god wants us to follow.

Thank you again for all of your prayers and support. Honestly, they are what have been helping to keep us going the last few days. Please continue to pray for Carter and that the doctors find the wisdom to be able to do a surgery to save our baby.

It's A New Day

When we woke up this morning, we saw that the sun was shining which gave us the feeling that with a new day came a new hope. In comparison to the dreary snow that we saw yesterday, this was a welcome change.

We got to talk to the Attending doctor over Carter's case. She gave us a small glimmer of hope. It's a longshot, but it's enough to keep us going. Everything that she was saying fit Carter, and completely made sense. She believes that he just needs more time to heal before coming off the vent. In comparison to the talks we had with the doctors the night before, this one was very positive. Yes, we still need a miracle, but we've seen them happen before...after all, Carter is a miracle in himself!

We did not get a chance to talk to any of the ENT's today, but that's OK. We don't think that it would have changed anything they were doing with Carter anyway.

The plan for right now is to give him time...and keep him as sedated as possible. That little sucker has a lot of fight left in him, and does not like it when people mess with him.

We appreciate all of your prayers and support. I am overwhelmed by the huge response we have gotten on our blog and Team Carter page. We do feel the love that you are sending to us and to Carter. Thank you!

I can't even think of a title for this post.

My heart is broken, and I don't even know where to start.

We got the worst news possible today after Carter's scope of his airway.

They found that he has severe Tracheomalacia. Basically the cartilidge that holds his airway open has collapsed by 90%. It's along his entire airway, and is so bad that they aren't even sure that a tracheostomy would help him. The doctor thinks that it's been progressing for awhile, and this last intubation just sent the little guy over the edge.

We are stunned.

The doctors can't believe that he's been breathing on his own so well for this long, and it sounds as though they aren't sure that he'll ever be able to breathe on his own without a ventilator.

They are doing a chest CT on him tomorrow to be sure that no major blood vessels are causing the malacia, but the chances of that being the problem are pretty slim and even if that is the problem, it would mean a pretty major surgery that we aren't sure would work. We just don't know how much more we can put Carter through.

We have some major decisions to make over the next few days...decisions that I thought were at least years down the road. We know that God has a plan...he always has for Carter even if we wish it were different.

PICU Day 5

Little guy had a pretty good day today. His breathing looked MUCH improved over yesterday, and he was pretty much doing everything on his own. He mostly just rested and enjoyed his good drugs.

Tomorrow is a huge day for him. The docs have already come to talk to us about the possibility of a Trach. They wanted to know if it would be OK to place one tomorrow if Carter fails his extubation. We just aren't ready for that step yet, so we told them absolutely not! We would appreciate a ton of prayers tomorrow. The little guy needs them.

Our niece, Erika, gave us a one of the best gifts ever today. She had to do a project for her art class, and chose Carter as her subject. Check it out! It looks just like him! Thank you so much Erika, it's so good to know that you love the little man. We're putting it on our mantle for everyone to see. Thank you, thank you, thank you!!

Picu Day 4

Sorry, no picture today. He looks pretty much the same as he did yesterday, except his eye looks a little worse.

They kept him very sedated and pain free. I'm pretty sure that when he opened his eyes and looked at me, he was actually seeing the elephants on parade. The good news is he got a good rest which was much deserved. As one of our friends said..."even the strongest need a day off".

I forgot to mention that we got the results of his Echocardiogram back, and everything looks pretty good. The doctor called me yesterday and told us that we don't need to go back until the end of Summer. We also got the results of his hearing test on the day of surgery, and I forgot to tell you that his hearing has actually gotten worse. He had been hearing at about 60-65 db, and now he's hearing at 80-85 db. The good news is that this does not affect his hearing aid since the bone conduction bypasses his eardrum. The Audiologist thinks that there is still fluid in his ear which is affecting how well his eardrum moves. At our last ENT appointment, the doctor was aware of the fluid, but chose not to do anything about it for now. With this new piece of information his opinion may change.

The on-call ENT came to have a chat with us about Carter's airway. They do want to do a Bronchoscopy on Monday before they try to extubate again. The little guy had one done when he was in the NICU, but it seems as though his airway has changed since then so we think it's a good idea. A Bronchoscopy is a procedure where they stick a small camera down his airway to see what is going on in there. The plan is to take Carter into the OR on Monday and possibly place an ear tube, then do the Bronchoscopy, then extubate him to high flow Oxygen if everything on the Bronch looks good. I'm really glad that we are doing this because I feel like maybe we can find some answers to his breathing issues, but I'm also scared to death of what they might find. One of the positive things about this is that they were able to schedule it with Carter's ENT, and not somebody else. I'm so happy that we can have some continuity of care.

Until Monday, Carter will be enjoying his visit from the Candy Man. The house is way too quiet without the dribble of water from the Oxygen tank, and the beeping of his monitor.

PICU Day 3

Today wasn't exactly the best day. For any of you who are regulars there, you know that your entire day in the PICU revolves around how good of a nurse you have. Right off the bat we knew we were in for a long day just by talking to the nurse.

When we got there the docs were concerned about some of the readings we they were getting off the vent. Carter was also having some Bradycardia (slow heart rate) which was getting them worried. We were fortunate to get a really good Attending doctor who had faith in Carter and wanted to extubate him anyway. She warned us from the beginning that it was highly possible that he would fail, but that she still wanted to try. They took the poor little guy off of pain meds and sedation because he needed to be really awake to get extubated. Unfortunately that just led to "super grumpy Carter" who kept on clamping his chest down to where even the vent couldn't help him breathe. After a couple of hours of Carter crying and thrashing around, it was finally time to extubate.

He just couldn't handle it.

They had to reintubate.

They think that he has some swelling in his Subglottic area. He was trying so hard to breathe, but his airway just wouldn't let any air through. It was pretty sad to watch.

The new plan is to keep up on the steroids, and keep him sedated and on a Morphine drip until Monday. Then they will try to extubate him again.

Today was very much like those scary days in the NICU, so we are glad to have it over with. Tomorrow is a new day.

PICU Day 2

Carter looked a little better today. His eye is definitely swollen, but he did wake up and look at me long enough to give me that "What did you do to me, and why aren't you cuddling with me?" look and then started freaking out.

They started him on steroids to get rid of the swelling which I asked them to do yesterday, but what do I know? They want to extubate after he's been on the steroids for 24 hours which would mean tomorrow. I sure hope they can because he needs some serious cuddle time!

We snuck a peek at his Echocardiogram results, and from we could tell it looked as though nothing has changed which is GREAT NEWS....but we aren't docs, so there could be something in there that isn't good. I have a call into his Cardiologist, so hopefully we'll find out some info soon.

Here's a comparison of how his eye usually looks when he's sleeping, and how it looks now. It used to be slightly open and now it's completely closed. Success!

Again, thank you for all of the prayers...it warms my heart to know there are so many people who care about our little guy. As you can see, we're not out of the woods yet, but I think we may be on our way.

In The PICU

Carter is recovering tonight in the PICU.

Mommy and Daddy came home to get some rest. That was a LONG nine hours...on all accounts!

Carter is doing OK. They tried extubating him while he was still in the OR to try and send him to the regular recovery area. He had a hard time, so they ended up reintubating him. I really wish that they would have never attempted it, but they were giving him the chance to have a shorter stay in the hospital.

Seeing him afterward was REALLY hard for us. We haven't seen him intubated since the end of August, and that seems like a lifetime ago. I know that he's hurting a lot, and he was crying so hard but no noise was coming out because of the breathing tube. If you look at the top picture you can see the stitches on his upper eyelid, and the two bruises on his forehead which made him look even more in need of some lovin'. I could tell by his facial expressions that he just wanted to be snuggled by Momma, but there was nothing I could do. I couldn't even hold his hand because there were IV's in both sides. They upped his pain medications and gave him some sedation, but when we had to leave (due to shift change) he was still pretty upset. All of these surgeries are painful on their own, and the thought of them all together gets a little overwhelming. We truly believe that doing them all together is still in the best interest of Carter.

We get a lot of questions asking when Carter gets to come home. This all depends on him. They discussed trying to extubate him tomorrow, but it will really depend on how swollen his airway is. On one hand I hope that they attempt it to get him home quicker, but on the other I know that the poor kid needs a break and needs time for that little body to heal. Thank you so much for all of the prayers and well wishes. We appreciate them more than you know!

Another Update

Echocardiogram = Check. Still waiting to hear the results though, so please pray for good ones.

Eyelid = Check. Carter's going to look like Rocky. The doctor said that his eye will be so swollen that he won't be able to open it for a few days, and he has stitches on the top and bottom lids.

Urology = Check. Still waiting to talk to the doctor about it, but it seems to have gone well.

ABR (hearing test) = Check. His hearing has gotten worse. They think it's due to fluid behind his eardrum. We have an appt with ENT next month, so we'll talk about it more then. Luckily, this doesn't affect his hearing aid, so he can still hear with it on.

Plastic Surgery = In Progress. They have taken the mold for the new prosthetic hard palate, but the plastic surgeon has not started on the soft palate yet. Hopefully not too much longer.

The nurse says that Carter's doing great. Keep on Keepin' On little buddy!!

Surgery Update

He's doing well so far.

They took Carter back at about 7:40, and the nurse said that his intubation (inserting the breathing tube) went well.

They finished the Echocardiogram, and his eyelid. Urology is in there working on him right now.

So that's one surgeon down. One working on him now...and one to go.

I'll update again when I can.

Walking And Waiting

Carter went on his very first walk yesterday. Michael helped plant a garden in my parent's yard, so we had to go up and water the plants. It's only a few blocks away, so we decided to take advantage of the nice weather and go for a walk. Contrary to what this picture shows, he loved feeling the breeze between those little toes. We get to do this every day during the Summer.

I'm just trying to tie up loose ends today. It's tough when you have no idea how long you're going to be away. I can't spend the night with him while he's in the ICU, but plan to once he transfers to the floor. I'm still waiting for the call to tell us what time to be up there. I'm guessing that it will be early in the morning since one of the doctors has to perform his surgery before his clinic appointments. I'll keep you posted. Since we're going to have a long wait, and the hospital has WIFI, I'll be updating on here and Facebook throughout the day. Any prayers and good thoughts are appreciated.

The Colt Stampede

On Friday, Michael participated in our niece's school 5K. He took 13th overall in the race, and 2nd in his age group (old man). The kids and I stayed behind and waited, but we will be participating in the next one on Memorial Day as long as Carter is up for it.

Here's Michael stretching with our niece Emily (the author)




Mikey showing off his one missing tooth. He's lost the other one on top since then.

My other niece, Samantha (in her awesome Team Carter shirt), brother-in-law Justin, and sister-in-law Stacy.

At the finish line!

Way to go to all of the runners in our family. Even Grandma Geri finished the 5K. You guys are amazing!

Just a heads up to anyone who doesn't know. Lacey is holding an auction over on Makayla's blog to raise money to bring this little sweetie home. Take a peek and see if anything catches your eye. The bidding ends tomorrow!

Counting Down

My heart is racing, my chest is tight, and I feel like my head is spinning.

That's how I've been feeling A LOT lately.

I'm so nervous for Carter's surgery.

Well, I'm not so much nervous for his surgery, but for the days afterward.

I HATE the idea that he will have to be intubated again, but I KNOW that this surgery is going to be life-changing for him. It's for the greater good, so I'm trying to keep my eye on the prize.

He's going to have three different surgeons working on him along with a few tests...I'm guessing that it's going to be about eight hours when everything is said and done. The Plastic Opthalmological surgeon is going to be loosening his eyelid, the Plastic surgeon will be completely repairing his soft palate and replacing the hard palate prosthetic, and the Urologist will be working on a few things. Cardiology will be doing another Echocardiogram (which I'm EXTREMELY nervous for), and Audiology will be performing an ABR (hearing test). We have no idea how long Carter will be in the hospital. For a "typical" kid this would be a one/two night stay, but for Carter it will depend on how his airway is after they pull the tube out.

I don't remember being this nervous for his last surgery, and I think that it's because he had only been home a couple of months, and had already spent nine days in the hospital during that time. He's SO much a part of our family now. I just know that this is going to be hard.

While I was explaining to Mikey and Jovie how next week was going to happen, Mikey told me that he's going to be really sad when Carter leaves. That might not sound like a big deal to people who don't know Mikey, but to those that do...it is! He rarely expresses much emotion unless it's excitement over a video game. We're hoping that once Carter gets transferred out of the PICU, the kids will be able to go up there for a visit. I think it might be good for them to see where Carter is.

Carter has been kicking butt developmentally lately. He's making all kinds of new sounds, and is getting so much stronger when you sit him up. Even his feeding has been going well....I've hardly had to use his G Tube at all. It will be exciting to see what he does after his soft palate is repaired. It should help him to eat a lot easier.

So, here we are in countdown mode. In less than a week, we'll be back up at the hospital. At least we're going there for a surgery and not for a sickness. I hope that this whole post doesn't come across as whining, because I truly do not mean it that way. We are very lucky. There are a few kids out there who could use our prayers right now.

First, there's sweet Ella Grace. Isn't she the cutest?! She is one of our little friends with an extra chromosome, and is very sick with Leukemia right now. She could definitely be lifted up in prayer right now.

Also, one of Carter's therapist friends had a new baby who is in the NICU battling an infection.

As always thanks for your love and support!

Feelin' Sad

I feel sad.

There have been a few events over the last couple of days that have made me feel sad.

Why would I feel sad when I have this?

Because, I feel sad for the rest of the world. The people who will never have the opportunity to have somebody like Carter be a part of their family. In my opinion, his chromosomes being shuffled around differently only makes him perfect.

He is perfect.

That perfection emits a perfect love.

The love is so much greater than I can describe with words, and it reaches out beyond just our immediate family. It has touched grandparents, great-grandparents, aunts, uncles, cousins, distant cousins, and beyond. If only I would have known during those first few weeks when we were mourning who we thought Carter was going to be. I had no idea that his differences were something to be celebrated.

We are the lucky ones.

We are so blessed.

Not only do we have Carter, but we have an amazing family who accepts him and loves him just the way he is. We couldn't ask for more. Carter is so lucky to have such a wonderful group of people to rally around him.

We went to my niece's birthday party tonight. Emily just turned 10 years old, and is simply sweet. . During the party, she showed us a book that she had written as a project for school. I want to share the book with you, because it brought tears to our eyes. The pictures truly don't do this justice. It is simply beautiful.,....and perfect.

The book is titled "All About Carter" and was written and illustrated by Emily.

Check out the adorable Oxygen Cannula across his face.

My cousin Carter was born March 27, 2009. Carter has a lot of problems like he has one ear, has a feeding tube, has Oxygen, and has a cleft lip. But under all of those things he's just a unique baby.

My cousing Carter warms my heart every time I see him. He's the cutest baby in the whole wide world.

I think Carter is very special because he he's very unique and has problems. But just because he has problems, doesn't mean he won't be able to do things that other can babies do.

My cousin Carter was in the NICU for a long time because he needed special care before he could come home. A NICU is where babies stay if they need special care or are very sick.

Carter has a special bottle to get fed out of. Some of his feedings are from a feeding tube. (for the record, I LOVE the little G tube too!)

Carter is home now and sleeps in his crib.

It was flu season, so we couldn't go and see him at his house because we didn't want to take any chances of getting him sick.

Now flu season is over and we can go see Carter.

Carter is 11 months old. Just about one year old. He's getting big.

Now, isn't it just so sweet?! To think that she could write about anything in the world, and she chose Carter. Thank you Emily! You made my day, and I KNOW that it warms Carter's heart to see you too!

Emily's older sister, Samantha, showed her love for Carter in a different way. On Friday, she participated in a 5K race with some of our family (more pics of this to come later). She wanted to show her support for Carter by making her very own Team Carter shirt.

It reads: "Sam and Bam (her BFF) are with Team Carter". It has a picture of her and her friend on the top, our logo in the middle, and a picture of Carter on the bottom. As you can see, this shirt took a lot of work, and it was AWESOME! Just like the book, the pictures don't do it justice.

Thank you girls for loving Carter. He loves you too!! I can't wait to see what kind of trouble you all get into as you grow older.

Rambling

It's past midnight here, and the little guy has decided that he wants a late night playing session. I tried joining him, but he's more interested in talking to his firefly than talking to me. I'm hoping that his UTI isn't coming back. He woke up pretty upset, and it took a long time to calm him down. He does have a pretty nasty diaper rash, so that could be something to do with it, but I'm really not convinced. I took his PJs off to check him over while he was having a fit, and he's fine as long as I don't try and put the PJs back on. I guess he just doesn't like them tonight. If you were to come to our house right now (which would really freak me out because who comes to your door at 12:30 am??), you'd see a baby playing on the floor in nothing but a diaper. Don't judge me.

I'm sitting here wondering what the morning brings. Today was such an awesome day, and it's been a while since we've had one like this. Carter had physical therapy, and it was one of those sessions where his airway sounded perfect and he worked really hard while making it look easy. It's so cute to see your baby start to develop muscles...I never really noticed it in my other two, but with Carter I can see that he's getting forearm muscles and calf muscles. He's like my little body builder! I think that he's finally regained most of his strength from being sick all month, and with that I can see him improving on his head control and sitting. I am simply amazed at how much his hand eye coordination has improved as well. If you dangle a toy in front of him, he can usually get it within three tries. That's huge!

OK, enough rambling. I hope that everyone has a great day tomorrow....I think that I should probably set the timer on the coffee pot...I'm going to need it! I'll end this post with a few new pics.

Goals, Goals, Goals, Goals

Well, it was that time of year where we set Carter's yearly goals. He did a good job in achieving most of the goals that were set for him when he first came out of the NICU because....well.....he's amazing!

I just barely signed the paperwork to confirm the goals. One of them was...."will sit unassisted".

Do you think that we may need to re-think our goals for this year?

It was for about 15 seconds, but there was not one wobble until the very end. Go baby go!

As you can see from my sidebar, we started a fund for Jenn and Yan. They did not have insurance, so everything is a complete loss. If you would like to help them out, you can ChipIn. Thanks for your prayers...they are very much appreciated! Amazingly enough, they got so much help from friends and the community, that they were able to clean the house out completely in six hours! Jenn and Yan are now in a basement apartment and are starting to rebuild their lives.

Jenn And Yan

If you have a moment, could you please spare a prayer for my friends Jenn and Yan.

Jenn is a single mom who adopted little Yan from Hong Kong. Yan has Down syndrome. Jenn and I met on an Ebay selling forum about 4 years ago, but didn't get very close until this last year (after Carter was born). She is a Speech Language Pathologist, and has always been very helpful in steering me in the right direction to find help for Carter. Jenn has been a tremendous support to me, and I thank her dearly for that.

They live in the Nashville area where all of the flooding is going on. Here is a picture of her house when it started to flood (I believe hers is on the left).

Here is a picture of her house a few hours later. The water rose as high as her door handles, and actually picked up her furniture and moved it around her house. Her fridge was completely tipped over, and as you can imagine...she lost almost everything. She is very grateful that she and her precious angel are safe, but could really use some prayers right now. Poor little Yan does not understand why they can't just go home. So, if you could just send a good thought, or a little prayer her way, I know that she'd appreciate it.