kidneys, tummies and shots, oh my!

Brad had to take C to get his RSV shots this morning. I wasn't able to go, so here's the picture he sent me via his phone right after C got them. Poor baby has to get 2 shots now, one in each thigh, because of his weight. Speaking of weight....he has finally broken the 10 kilo mark! A whopping 22 lbs, 2 oz. WOO HOO!!!

C had a follow-up with his Nephrologist (kidneys) last week. The Dr. said he was thrilled with how great C looks. He sent C for a follow-up kidney ultrasound and said that we wouldn't have to come back for a whole year (we've been going every 3 months), unless something came up on the ultrasound.

C was a perfect angel during the ultrasound, as always. I sat on the examining table and held him while they poked, pushed, and prodded around at his kidneys and bladder. About 10 minutes into it, he fell into a deep sleep. I can't say that I blame him because it's dark in there and the only noise is the quiet humming of the ultrasound machine.

A few days later, we received a phone call from Nephorology and the NP told us that we will need to return in 2 months for a follow-up ultrasound. C's always had some issues with his kidneys thanks to ECMO (the heart-lung bypass machine he was on), so this wasn't too much of a surprise, just a let-down. He has some scarring in one of his kidneys, likely from the clots he's had, but the Radiologist noted something in the Left kidney and he was uncertain as to what it is. So, they want us to return in 2 months so we can keep an eye on this "uncertain something." They told us that it's probably nothing to worry about and it will probably disappear as he grows. We are certainly terrified bummed about this, but we're not going to dwell on it because we know all to well that it could be so much worse. We really could appreciate your thoughts and prayers that this turns out to be nothing of concern.

If any CDH/ECMO parents have any experience with this and don't mind emailing me, I'd appreciate it. I don't want to go into the details on the blog, but I'd love to hear your experience.

Doesn't look like C is very worried about it!

Waiting for Santa...

C learned a new skill this week. On second thought, I should have taught him "where's your diaphragm?" haha (just a little CDH humor)

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What A Long, Strange Trip It's Been

After 18 long days, Carter made it off ECMO today!!! He was decannulated around 3pm and his first blood gasses came back looking good. It's going to be a long night for Mom & Dad hoping that Carter continues to do well. There's so much more room around his bed and I'd forgotten how little he is. He had gotten fairly swollen and now that he's back to his normal size, he's so tiny.

When we were first told that Carter needed ECMO, we were very upset. We knew that it was only used for the sickest babies and we had hoped Carter would go to repair surgery quickly without the need for ECMO. We were able to make our peace with the machine, after accepting the fact that it was necessary to allow Carter to rest and prepare for the next step. Now that it's gone, we feel like we're missing a member of the family--it's been with us almost as long as Carter has been. Don't get me wrong, I was thrilled to see the machine go, but I miss that security net, too! Keep your fingers crossed that Carter continues on the right track to coming home happy and healthy. He's certainly not in the clear yet, but we hope he's on his way :)

Carter's last night on ECMO with all his friends cheering him on--even that ugly old Blue Devil!

No cannulas in my neck!

Look Mom, no ECMO!

Just Me!

Carter's still chugging along on ECMO. Just a few new pics. We don't know anything about surgery yet...we're still working on getting off ECMO and we're just taking one day at a time, enjoying every minute we have with him. He's letting us know who's boss and it's not one of us!

Praying For My Little Brother

Lucy said her prayers tonight for her little brother, Carter. She is ready for him to come home because we promised her that he will throw her tennis ball as much as she wants!


Yesterday, we were able to see monkey without tape on his face for the first time. Just wanted to share yet another picture.

Happy 2 Week Birthday!

It's hard to believe that just 2 weeks ago, Carter was born. It seems like it's been a lifetime already! Don't think I'm nuts, but I miss being pregnant.

He's still doing well on ECMO--just hanging out and getting the rest he needs. He is improving and we're all waiting for him to let us know he's ready to come off of ECMO. Sorry there's not much more to report, but we'll take boring any day :)

Good Day

Carter had a great day today and his lungs have shown dramatic improvement over the last 24 hours. He was wide awake tonight so we caught a little video to share.

Thank you to everyone who's been on Carter's cheering squad. We appreciate all of your support and help. Please keep him in your prayers--they sure are working!

We also want to ask for prayers for a little girl named Bayleigh. Her parents are friends from home, Carrie and Derrick Ipock, and Bayleigh has an appointment at Duke on Monday to determine if she needs another surgery.

Awake!!!

Carter finally opened his eyes for us today. When we arrived, he was sleeping peacefully. We were talking to the nurse when Brad realized that Carter's eyes were wide open! We were able to spend about an hour with him awake before he snoozed again.

Peeking

We've decided that Carter will only open his eyes when we aren't there. We got a little peek last night, but as you can see in the video, as soon as he sees it's Mom and Dad and not one of his nurses, he quickly closes his eyes. He's playing a silly game with us!

Look at that cute little smile!

Here's Lookin At You

We came in tonight and Carter's night nurse informed us that he had opened his eyes early this morning! He waited until Mom and Dad weren't there so he could get a look at his cute nurses! What a flirt. Luckily, she was sweet enough to capture the picture and send it to us. He's still just hanging out on ECMO, enjoying the ride and hopefully getting lots of rest.

Chugging Along

Another boring day in the life of ECMO, which is what we LOVE to have! We hope those nurses, docs, and RTs are bored silly with Carter. Everyone who stops by loves his rock star hair. Just wanted to share a few pics.

Oh, I forgot to mention that mommy finally got to see those baby blues 2 days ago. His nurse opened his eyes so I could get a peek because I had not been able to see them yet.

I just barely caught a big ol' smile--must be gas!!

Chunky Monkey

Monkey is still chugging along on ECMO. We don't have much to report, which is a good thing for us. He's getting a little bit swollen, but not like we expected him to be. He has his Daddy's big ol' lips and they were sure poking out today. We were also able to share some Pirate and Tarheel Pride with him today.

We want to make sure everyone who is caring for Carter at Duke knows just how much we appreciate what you do. You are the reason he is alive and you will be the reason we get to take our sweet baby home. We hope your days and nights with him are long and boring, and that this blog will help keep you awake!

Lucy wants to thank Grayce, Carter's future wife, for her present. Grayce is expected to make her grand appearance into the world any day now and we are keeping our fingers crossed for an easy delivery for her mommy Meg. Meg and I have pre-arranged their wedding for them, so we hope they don't mind :)

One last thing. Please keep Brad's supervisor, Michelle, and her family in your thoughts and prayers. Her husband leaves today for another tour of duty, from which he just returned only a few months ago. They have two small girls at home who are going to miss their Daddy terribly.

OUR FIRST FAMILY PICTURE!!!

God is watching me and my cool hair!

Carter's nurse washed and spiked his hair today. We can't get over how much hair he has and how adorable his new hair style is. Also, he has the "window seat" in his room (he is sharing with another ECMO baby) so his view is of Duke Chapel. Now it's really like God is watching Carter through the window! And yes, I did wear my Carolina shirt to Duke!!

Where's Carter?

Today was a much better day for Carter, which means a better day for Mom and Dad. He's responding well to ECMO and is not yet showing some of the side effects that most babies have. His respiratory therapist was thrilled with his progress. We understand that the machine is doing all the work, but it's a good feeling to know his good lung and his heart are getting to rest. We need them to work really well after his surgery so rest up! The doctor thinks he'll be on ECMO about 7 days before we try to wean him off of it. We'll go to surgery after he's off ECMO, so we have to get through this phase first. Carter is a very sick baby, but we're hoping and praying that ECMO will get him through this rough phase and he'll begin to heal and progress after surgery.

Now let's play Where's Carter? Can you find him?

Can you believe ALL this for one little baby?

Oh no, not ECMO

We recieved the dreaded phone call last night to come back to Duke for a talk with the docs. We knew what was coming (insert scary, horor movie music here)...ECMO.

We chose to put Carter on ECMO last night--it's not like he gave us much of a choice. For those who don't know, ECMO is a heart lung bypass machine that removes all the oxygen-depleted/used blood from Carter's body, pumps it through a series of tubes and devices, one which acts as lungs and oxygenates the blood, and one that acts as the heart and pumps the blood. He has two large cannulas surgically implanted in his neck which remove and return the blood to the body. The newly oxygenated blood is then pumped back into his body to circulate. It allows his heart and lungs a chance to rest prior to repair surgery. ECMO = extracorporeal membrane oxygenation.

When we got there, they told us that Carter is a very sick little monkey (well, they called him a baby!) and that without ECMO he would only live another day or two. His pulmonary hypertension (explained in a previous post) is severe and they just couldn't get his oxygen saturation under control. He would go from fantastic readings (150) to horrible readings (30) without the doctors making many changes in his support settings. The Dr. said they had exhausted their options with life support on the high-frequency vent.

The good news is that we're using ECMO as a "bridge" to get to his repair surgery. They believe that if we can get his repair surgery completed, the pulmonary hypertension will be resolved for the most part and he'll finally begin to heal and make steps toward coming home. The plan is to use ECMO for a week or more to allow his lungs and heart a chance to rest.

Your thoughts and prayers for Carter are more important than ever now. Please keep them coming, we are feeling all of you with us!