Tuesday, December 20, 2011

The "H" Word

Today the nephrologist said it.  The "H" word.  That's right.  "H", of course, standing for HOME.  That's the first time that anyone has talked about Theo coming home and not meant it as some far off, hypothetical time.  Before anyone gets too excited, there is still a lot of progress that needs to be made.  But, we are getting closer.

Theo continues to make slow but steady progress.  Some days are better than others.  For example, Theo ate like a champ on Sunday.  He took a bottle at every feeding, and was able to finish between 45-55 ml of each 60 ml bottle, meaning that only a little bit had to be given through the feeding tube. Then yesterday, he had a tough feeding day.  He threw up a lot (not just baby spit-up), and was obviously uncomfortable.  (Grandma Ronni brought a bunch of bibs when she visited this week, and they have come in handy!) So, the neonatologists decided to back off his feeding by bottle a little bit and give his stomach a longer period of time to digest each meal.  Like we have been warned from the doctors and other NICU parents, progress is usually made with two steps forward, followed by one step back.  The good news is that he has finally started to put on some weight.  He has been hovering around 7 lbs for the last week or so, but over the last few days has climbed up to 7 lbs, 7 oz.  Almost back to his birth weight!

Chick magnet. Indeed.
The big news is that the nephrologists are planning to increase his dialysis volume by 10 ml every other day.  He is now being filled with 60 ml of dialysis fluid, up from 50 earlier today.  Once he gets to a fill volume of around 100 ml, he will start on "the Cycler."  The Cycler is the dialysis machine that Nick and I will be trained on so that we can do Theo's dialysis at home.  Side note: Nick and I are sticking with the superhero theme. How cool is the name "the Cycler" for the dialysis machine?  (We did not make that up.)  Once home, Theo will need to be hooked up to the Cycler for 10-14 hours a day so that the "SuperJuice" (aka dialysis fluid) can supercharge our little Super Hero.  The nephrologists are hoping to start the Cycler sometime next week, and it will take several weeks to make sure the machine is working well and Theo can handle the higher fill volumes.

The second main issue is Theo's nutrition.  We need to make sure that Theo is eating well and growing well before he can come home.  Kids with kidney failure do not naturally grow as well as kids with healthy kidneys, and they usually don't like to eat.  It is pretty common for kids with renal failure to have a surgically placed feeding tube called a G Tube to supplement what they will eat by mouth.  The neonatologists and nephrologists have decided to give Theo until the first of the year to determine if he can forgo the G Tube.  My guess is that Theo will need a G Tube, but I'm happy that the doctors want to give him a little more time before doing the surgery.

We have been so pleased with Theo's progress, and we are so happy that the only issue he faces now are kidney problems.  What a long way he has come in 3 weeks!  Nick and I spend most of the day with Theo at the hospital, and he is so much fun right now.  He is alert and wide-eyed, and it still surprises me how serious he seems to be.  He does not take after his dad yet!

We hope you all have a very Merry Christmas.  Nick and I cannot thank you all enough for the support and prayers coming from all over the world.  We know that we will have a wonderful Christmas, celebrating it with the best little gift that we could ever imagine.  It certainly is a wonderful life.


  1. Nat & Nick,

    "...It certainly is a wonderful life." Theo's progress is amazing! We hold you 3 in our hearts and thoughts every day. Thank you for sharing your blog with all of us. Much love, peace, health and JOY to you. Hugs, Meghan (Donnelly) Sweeney

  2. I love his "chick magnet" bib! I'm pleased to hear the Theo is making progress, and that "home" is now in your nephrologist's vocabulary. An answer to prayer! I'm continuing to pray for Theo, for you, for your family and for the medical team attending to Theo. God bless you all!

    Stan Oberg