On the CICC floor!

Well around 5:00 pm, we officially got moved upstairs to the CICC (Children's Intermediate Cardiac Care)! I never thought I'd say it's great to be back in any hospital room/floor, but this is kind of like the "celebrity" floor because the rules are so lax, plus there are full bathrooms and a fold out couch in each room, so we have the option for one of us to sleep here with Ethan if we want.

We saw both of Ethan's heart surgeons early today when we were still down in the PICU and they were both amazed at how fast Ethan's recovering! His main surgeon, Dr. Mill, told us yesterday in the debriefing that post-Glenn surgery patients usually spend 2-3 days in the PICU then 5-7 in the CICC. The main thing we "work on" is the eating, but Ethan's been doing pretty well with that, at least up until dinner time. Now that he got moved up here, he's only been interested in eating 2oz. instead his normal 4oz. I think part of it is that he's "clogged up" - he hasn't pooped since yesterday, so that's our big goal for the night - getting unclogged so he'll have a normal appetite again! LOL

Wednesday Morning

We arrived at Ethan's room about 10:15 am to find him wiggling about, keeping two nurses busy. Gone were the chest tubes and his arterial line in his left arm. He's got a central line in his neck and another IV line on his foot but they are just pushing enough clear IV fluild through to keep the lines from getting clogged. We were expecting to see a NG tube for feeding him. Instead, we received report that he had already taken 2 ounces of formula via bottle. Awesome!

He is very aware and we even got some smiles from him! Julie gave him 4 more ounces from a bottle - that is a regular feeding for him. Can you believe that? He is off of morphine and started a much more mild, extended release type pain killer. It was great to see him so lucid today. He is progressing faster than expected. One of his Drs said he should move up to the CICC today. The CICC or Cardiac Intermediate Care Center is the step-down unit from the PICU or Pediatric Intensive Care Unit (where he is now).

We are so grateful for how well Ethan is doing. It is wonderful to have so much support from friends and family. Your prayers have been a priceless gift that have made all the difference in the world. Many have asked how they can help us financially. We have set up a Medical Trust Fund through the Mitchiner Law Firm to provide a vehicle to ensure Ethan's long-term heart-related health care needs are met. If you would like to give to the Ethan Miles Medical Trust, please make your checks out to Ethan Miles Medical Trust and mail to Monte & Barbara Miles, 4905 Latimer Rd., Raleigh, NC 27609. The trust is set up so that any funds received must be spent only on Ethan's medical heart-related expenses. To date, Ethan has received just over $2000 dollars to help with his bills. Thanks so much!!!

And now for some fresh pictures!

First bottle that mom got to feed me after surgery!

Another view of me being fed by mommy!

Mommy fed me at 11am and Daddy fed me again at 2pm. I'm only on 24 cal/oz, still thickened feeds, instead of 26 cal/oz like at home but I've got a healthy appetite. My 11am bottle, I took my normal 4 oz. and at 2pm I took 5 oz.!

We just got word that we've got a bed upstairs in the CICC so we should be up there within the next couple of hours! Praise the Lord for such fast recovery this time around!

Another Update

Ethan's ventilator has been removed! He is still asleep. Hopefully we will see his eyeballs tonight. He is still doing very well. He is only on pain medication and 2 other "heart helper" medicines that he was on with the last surgery. He only has 2 chest tubes verses 3 last time. He might get these off tomorow.

We did get into the Ronald McDonnald House which is great. We're doing the Lucy and Ricky thing (twin beds) which is MUCH better than the full size we were in for 24 days last surgery. Can't wait to sleep in them tonight after having been awake since 4:30 am!

The Results Are In

At noon one of Ethan's surgeons came bearing good news. Ethan's surgery was a complete success! Everything went very well with no complications. They were also able to successfully increase the diameter of a section of the aortic arch which will allow his heart to maintain proper blood pressure with less work for the heart. Thanks for your thoughts and prayers! We still haven't seen him yet - hopefully in a few minutes. We'll keep you posted.

Surgery Tuesday

Well it's late and we need to be getting to bed, we've got to get up in 5.5 hours to finish packing our car to make the hour long drive to be at the hospital by 6am. We'll get checked in and Ethan will get prepped/anesthesized then surgery will begin around 8 or 8:30 am. The surgery shoud last until 12 or 1 pm. We'll post another update as soon as we here more tomorrow. In the meantime, thanks for all your prayers and support for us and Ethan!

Some thoughts...

So far Dan and I haven't really been putting too much thought into the fact that Ethan's 2nd surgery is quickly approaching. I don't know if we've just been in denial or what. But being back at UNC yesterday really made reality set in for me. I barely slept last night, thinking how the surgery is getting so close and how it's going to be strange not getting to hold and play with Ethan as much for the next couple of weeks as I have over these past 4 months of being home with him. He has stolen my heart and competes with his dad for being the love of my life. He looks so normal and healthy and it's hard to give him up and know that my healthy looking baby will soon be cooped up in the hospital, hooked up to tubes and wires once again. I know we're doing the right thing by proceding with the surgery but it's breaking my heart (I sit here trying to see the screen through my tears as I type). I've really been making the most of every single moment with Ethan the past week and I praise God multiple times a day for every single day I've had with him so far. This journey has helped me to not take life for granted and to give all the glory to God for blessings He's given us so far. For an HLHS baby, Ethan's been very healthy and his surgeon described him yesterday as a "perfect candidate" for this surgery - he's a good size and he hasn't outgrown his shunt yet so we have a lot going for us as we go into surgery!

We also praise God for the great surgeons, doctors and nurses and feel we couldn't be at a better hospital than UNC! Dan and I are at complete peace once again that God's will be done with Ethan during surgery, it's just the recovery time that I'm not looking forward to. Please pray for us to have peace about the recovery process and that we can get home again very soon. In the meantime, we're going to do our best to enjoy these last couple of days together as a family before Tuesday morning. The forecast is for 1-3" of snow this afternoon/evening so that's a bright spot to thank God for!

Pre-op appointment...

Well all looks well to continue as planned for surgery on Tuesday! The pre-op appointment at UNC Hospital took about 4 hours. Dan, unfortunately, had to work so it was just me and Ethan. I first met with the cardio-thoracic surgical nurse, and she drew out exactly what would be happening in the surgery. Basically, they will be removing the shunt that was placed during the first surgery and have the de-oxygenated blood coming from his head go straight to his lungs instead of traveling through his heart first. This will take a lot of work off his heart so he won't be burning calories as fast. This is will result in a quicker growth rate for Ethan and also higher oxygen saturations! For the visual learners who want to see the diagram, click here. I was encouraged by the surgeon today that he called Ethan a perfect candidate for the surgery and thinks things should go very smoothly! The surgery is only about 4 hours instead of 6 like last time so that's good too!

We'll do our best to keep everyone updated about Ethan's recovery process after surgery. Please just continue to keep us and the doctors in your prayers over the next couple of weeks! Thanks!