Thursday, January 12, 2012

Theo's Second Super Hero Surgery

Theo loves when dad rubs his head
Theo has continued to make progress over the last week.  He looks healthy, and acts healthy.  He passed the 9 lb mark at the start of the week, and now weighs 9 lbs 5 oz.  We've passed one milestone: newborn clothes are now too small for Theo!

The upside to throwing up on yourself: naked time!
Progress has been made on the dialysis front, as well.  Theo's dialysis fill volume is now up to 150 ml, and he is now only on dialysis 18 hours per day.  Ideally, the nephrologists like to have 50 ml of dialysate per kilogram of body weight to ensure that the Cycler (the dialysis machine) works properly, which would put Theo's ideal fill volume around 200 ml right now.  For perspective, 200 ml is equivalent to almost 7 ounces.  That's a lot of liquid to put into a 9 lb body!  The Cycler should work well around 40 ml per kilo, though, so we are basically right there.  However, Theo has not started the Cycler yet.  The team is waiting until he has recovered from tomorrow's surgery.

Surgery is scheduled for 7:30 am tomorrow morning.  The surgeon will attempt to insert a PEG tube, which will be our means of ensuring that Theo gets all the calories and medications that he needs.  The PEG tube is a feeding tube that is inserted endoscopically.  One end will be placed inside the stomach, while the other will exit through the skin.  As Nick says, this will be Theo's second Super Hero tube, in addition to the catheter for the dialysis.  Theo will be put under for the surgery and intubated to ensure that he is breathing, and will have to be off of dialysis for a couple of days following the surgery.  The nurses have warned us that he will not be very pleasant for a day or two following surgery, either, because he will be hungry and uncomfortable.  For those of you who like pictures, here is a visualization of the PEG tube:

An inviting set-up!
I will post an update following surgery to let you all know how it goes.  We've heard excellent things about the surgeon, and we feel comfortable with the procedure.  We're glad that we will have a way to feed Theo so that he will grow, since he does not eat enough on his own.  Plus, it will allow the nurses to remove the tube in his nose, which he absolutely hates.  Once we confirm that the PEG tube works well, we will be another step closer to bringing Theo home.  The final step will be ensuring that the Cycler works, and then Nick and I will need to be trained to operate it each night.  Personally, my hope is that Theo will be home in time to watch the 49ers win the Super Bowl.  But, I know that we could have more setbacks between now and then, and my timeframe is already a little aggressive.

Deep conversation with Grandpa Dave
We have been surrounded by family recently, which we love.  My parents were in town over the weekend, and it was so fun for me to see them with Theo again now that he is more alert and has made such progress since his first week of life.  They are excellent grandparents, and Theo seems so comfortable in their arms.  Grandpa John and Grandma Gilly (Nick's dad and stepmom) flew into town last night from Mexico, and they are already completely in love with Theo.  We love having them here, and watching as they meet their first grandson.  We also love introducing family to Theo's nurses.  His nurses are incredible.  We feel like they have become part of our family over the last 6 weeks.

We live an incredibly good life.  We have such wonderful family and friends, we live in a great place (seriously, we love Charlotte!), our faith has never been stronger, and we couldn't ask for a more perfect son.  We know that we have a long road ahead, but we are excited for the adventure.

I hope that you are healthy, happy, and enjoying the start of 2012!


  1. Theo is absolutely adorable and I love reading about his superhero adventures! You will all continue to be in my prayers, especially over the next few days as Theo goes through surgery and then recovers. I am so glad that you all are surrounded with such amazing family, friends, and medical staff!

  2. He has a Stomp the Frog Happy Blankie! I love it!

    Theo is so blessed to have two positive and optimistic and dedicated parents. He is beautiful.