Forgot to tell you....

Brad just realized after reading the previous post that we forgot to tell you Carter had been extubated on Wednesday. He's been satting in the upper 90s with no additional support. He has his little hissy fits when he's mad (like when he's getting a bath) but he settles down on his own. He's very hoarse from the tube, so he makes the cutest little tiny noises when he coos, sneezes and has hiccups. They removed another PICC line, so he's only tied down by one PICC line, the leads to monitor his heartrate and breathing, and his pulse ox. Sorry for leaving out that very important detail.

Sorry For The Long Post

First, I want to thank all of you for your prayers for my co-worker's family. On Monday, he and his wife officially became the legal parents of their daughter. I've never heard him happier than when he called to share the great news. They have been caring for her since she was an infant and it's so wonderful that they can sleep a little easier now knowing that she's forever safe in their loving home and family.

Carter had an eventful week--it may seem boring to most of you, but to us, it's very exciting. These small milestones are huge steps for CDH babies.

First of all, we now know that his bowels work and he has earned quite a reputation in the ICN for the smells that emanate from his cute little body. I'll save the details, but basically when his food goes in one end, it makes its way out the other end. We never imagined we'd be so excited about finding THAT surprise in a diaper, but with CDH it's such a wonderful achievement!

He's also on "full feeds" now (1 1/2 oz. every 3 hours) and completely off of TPN and Lipids--this means that he's getting ALL of his nutrition from mommy's milk and he's keeping it all down! Keep your fingers crossed that we don't run into reflux issues.

Finally, the plan is to extubate Wednesday. He's doing well, so we're all very hopeful that he'll succeed this time. He's actually tried to pull the tube out himself a few times, so we're taking that as a sign that he's ready to have it out. It would be wonderful thing to add this to our long list of things to give Thanks for on Thursday.

Carter is so long that he doesn't fit into his clothes! These pant legs are supposed to be long, but are like capris on him so we had to buy him 3-6 month size clothes.

He is obsessed with staring at his new mobile

Daddy giving him a bath--you can see Carter does NOT like it

One of his favorite nurses from the PICU dropped this off for Carter--now the ICN has some competition!!! Thanks so much for the onesie :)

Awake

We were definitely a little disappointed that Carter had to go back on the vent, but he has been such a joy to be around the past couple of days. The Duke staff is confident that he got stronger during his trial run off the vent a few days ago (he lasted almost 24 hours!) and should be much more prepared for another trial in a few days. As Carter continues to be weaned off of his sedation meds, he is becoming more and more alert, mobile, and interactive with us. He will follow us around the room with his eyes and Kellie's antics even elicited a few smiles and giggles from the little guy last night. We can't wait to see little dude without the wires and hoses in a couple of days, but we are absolutely thrilled to be in the position we're in right now. We think Carter is as eager to get home as we are to get him there!
P.S. He now weighs 9 lbs, 2 oz.

Hi!

Small Setback

Carter had to be reintubated this morning because he was having labored breathing. His vocal chords began to swell due to irritation from the tube being in this throat for so long, and the inflammation was constricting his airway. They have him on steroids to help with the inflammation and he's on very low setting on the ventilator. They hope to try again in a few days after he has a chance to rest and the swelling is reduced.

We think he overheard us talking about giving him a real bath for the first time this weekend, and as a typical boy, he prefers to be stinky and dirty. So he told us he was not getting a bath :)

Please send good thoughts, lots of prayers and keep your fingers crossed for a successful extubation!

The good news is that they have increased his feeds, so he's getting milk every 4 hours now. He's a hungry boy.

All By Myself

So I thought after all the commotion the last few days with holding and feeds, I could take a break from blogging for a couple of days. But, Carter had other ideas and as of 8:00 am he's been breathing on his own!! They extubated him this morning and he's breathing room air without the help of a cannula. He's doing very well and seems to love being able to sleep curled up on his tummy--although he can't get too used to it since he can't sleep that way at home. He had a few bouts of desatting about 4 hours after extubation, but they quickly figured out that his vocal chords are a little swollen and now he's under a "tent" that gives him moist air + a breathing treatment. That seemed to work, so hopefully the inflammation will reduce soon and he can come back out from under the tent. There don't seem to be any lung issues since he's satting very high and is on no oxygen support. It's such a treat to be able to FINALLY see his face without tubes and tape.