When Daddy's Away, Mommy Will Play

Brad's been home for work the past few days, so I've had Carter all to myself! We have had fun just hanging out and talking. Brad has a lot of diaper changes when he gets back to catch up with me though.

At one of the Super Nurse's suggestions, the docs stopped adding formula to mommy's milk for Carter and guess what...no puking since! They've increased the volume he gets to 92cc every 3 hours and he's taking it like a champ. He's improving each day with learning to eat by mouth. He's not taking a bottle yet, but he's very good at working on his fingers, the paci, and mommy. He swallowed some milk today with no problems--no choking, aspiration, desats, etc. and he didn't spit it up later. He has to get this eating thing down before the docs at Duke will let him go home, so we need lots of prayers for Carter to be a little piggy with the bottle.

I asked one of his Doctors today about the "plan" and she said it's (1) to continue weaning the Morphine, which should be finished in the next 1-2 days (then he gets his last PICC line taken out) and (2) to get him to eat from a bottle. That's it!!!

Here's Carter in his bouncy seat. He likes to have his arms swaddled, but not his legs and feet. He even kicks off socks if the nurses try to put them on.

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!

Good Times

Since Carter's been off the paralytic, we've been able to spend a lot of awake time with him. Yesterday, we got a couple of smiles (gas, again!) and even a few yawns. He also sucked on a paci for the first time! There's not much room in his tiny mouth for the breathing tube AND a paci, so Brad had to hold it in there for him, but he seemed to like it. We also found out that he LOVES to have his back rubbed, just like his Mommy. You'll see in the picture below that he looks drugged while Daddy rubs his back.

He had an echocardiogram (ultrasound of his heart) that showed the pressures are not increased on the right side. This is great news because increased right side heart pressure indicate pulmonary hypertension. So, they are removing the Nitric. They are not planning to put him on sildenafil (Viagra) at the moment, but if the pulmonary hypertension recurs/worsens, then Viagra it is. Keep the baby Viagra jokes to a minimum because I've heard them all from Brad already! :) He's also still being weaned from the morphine and versed, but don't tell Carter because he still hasn't noticed. His incision is healing nicely and each day his abdomen feels slightly less tight.

Carter just keeps continuing to amaze us and we continue to feel so blessed with his progress.

Wiggle Worm

Carter's sweet nurse was able to finally give him a bath this morning and he smells much better! I wish we had smelly-vision so you could smell him; that sweet little baby smell is intoxicating. The paralytic is gone and Carter's been wiggling around like a "real" baby. He was very aware by this evening so we got this short video. He's also moving his arms, kicking his feet, and sucking on the breathing tube. They've been weaning the morphine and so far he hasn't noticed, so don't tell him. It's like he's in baby rehab! The plan is still to extubate this week if he tolerates it. We're also hoping for the all-clear from the surgeons to begin feeds soon. My Dad was feeling much better so my parents made it up to visit today. Brad's Mom and Grandma were up earlier in the week. This is going to be one spoiled little boy!

In other news, there was a scuffle in the NICU yesterday between the UNC Bear and the Blue Devil and this was the result--the Blue Devil was so jealous of the UNC shirt, he stole it from the Bear and put it on himself. One of Carter's docs threatened to kidnap the UNC Bear, so if it winds up missing we know where to look! (We'll send Betty after him)

Carter, The Tank

Carter is more than 24 hours post-op and he had a good day. They've been able to wean down on the vent settings, wean down on his morphine, and cut the paralytic in half; O2 still at room air. We hope they will be able to remove the paralytic Saturday and slowly begin feeds next week. His incision looks great and is healing well. His abdomal measurement was smaller today, a good indicator that he's not swelling and peeing off the extra fluids given to him during surgery. He's just chugging along like a tank :)

Kellie's parents were supposed to come up and visit today, but part of the way here, they had to turn around and go home. Her Dad has a kidney stone! I know they were so disappointed because they were looking forward to seeing Carter, but hopefully they will be able to make it this weekend.

Also, the little girl we told you about before who was Carter's ECMO roomie, M.G. (I don't want to use her name without her parent's knowledge), is supposed to be extubated today. Please keep your fingers crossed that it goes well!

Update

Carter continues to do well. He's now breathing room air (O2 at 21%) and he's breathing over the vent, showing that he can at least do some of the breathing on his own. He was much more awake today, but still very drowsy from the sedative and pain meds he's on. He's scheduled for Surgery #4 Wednesday morning for the wound closure. The surgeon isn't 100% sure he'll be able to close Carter's abdomen, but he won't know until he gets in there. Please keep him in your thoughts and prayers--we're hoping for a smooth & speedy recovery.

Here are a few pics from today. Monica & James should recognize the blanket he's on :)

The Little Baby That Could

Carter now weighs 8 lbs, 8 0z. and is 23 inches long, not fully stretched out--He's gained over a pound and grown over an inch! He looks like a toddler!

We had a very good day. When we arrived earlier today, he had been taken off of his paralytic and the last antibiotic, and his Nitric was down to 2. He didn't require any extra boluses of meds when he was handled or suctioned, and he's lost the earphones and shades because he's not as sensitive. His bowels are working, but we won't go into those details--you can figure out how we know that. ;) We also made an improvement by replacing that old Blue Devil with a UNC Bear. They plan to slowly begin weaning his pain meds and sedatives tomorrow. Brad was able to do a little OT on Carter when the nurse allowed him to help reposition Carter, change the bed linens and measure him. What a proud Daddy!

Tonight, his nurse told us that he'd opened his eyes for her. Of course, he once again peeked at his cute nurse, but was sound asleep for Mom & Dad. :) He did eventually open his eyes for us, which was the first time he's been awake in 2 weeks. He was looking all around the room, just taking in the world, and stayed awake for quite a while. Kellie got to rub Carter's head until he fell back asleep. It's so wonderful to be able to interact with him without the stimulation causing him to desat.

Happy Birthmonth Carter!

Carter is one month old today and we are truly amazed by his strength and by all the support we've gotten. We love all the comments on here, the emails and cards--they help to keep us going each day.

Luckily, I don't have much to report. They continue to slowly wean the support Carter is receiving. As of this afternoon, he was essentially breathing room air on the conventional vent. We've heard chatter about starting to wean his sedation, but that makes mommy and daddy nervous. He doesn't seem to be quite as sensitive and when he does get upset (his blood pressure goes up for a few seconds), he is able to quickly recover on his own without the help of additional meds. I think I forgot to mention that the surgeon wasn't able to completely close his abdomen, so he has a patch covering that opening that they plan to close up on Wednesday--surgery #4!! It certainly doesn't seem to be bothering Carter, but we'll be glad when his insides are actually on the inside :) We're happy he didn't need a silo and that everything almost fit inside.

We have to say a very special THANK YOU to our Carolina Therapy Services family. You have gone above and beyond to make this easier on us and we appreciate you more than you'll ever know.

Also, thank you to those who have made donations to the Parker Reese Foundation. I promise to work on the thank-you notes as soon as I can. The Foundation has not only given us a home, but also an extended family in Jes & Ashley. The Foundation has a new website at: http://www.theparkerreesefoundation.com/

Please keep James, Monica and Connor McGuire in your thoughts, prayers and finger crossing. Connor has Autism and had been diagnosed with Infantile Spasms. It seems that his spasms are getting worse and the new medication he's on for seizures has some yucky side effects. The strength and patience they have shown with Connor (and especially some of his nurses and doctors!) is inspiring to us. The link to their blog, McGuire Family, is to the right or click here: http://connormcguire.blogspot.com/