Sunday, April 22, 2012

Mid-month update

Nap time!
Currently, Theo is down for nap #2 of the day, Nick is volunteering at church,  the laundry is running, and the kitchen is clean, so I figured it was time to sit and write a quick update.

Life continues to be wonderful for our little family. But, the last few weeks have been a reminder for me that we are going to have some setbacks along the way.  I think that is par for the course.

Putting on a brave face before eating
The last couple of weeks have been a bit more challenging for Theo in the eating department.  At his peak, he was eating almost 27-30 ounces on his own during the day.  His appetite fell off the cliff in early April, though, and over the last couple of weeks he has been eating closer to 10-12 ounces during the day.  It is times like these when we are so thankful for Theo's g-tube, since we can ensure that he gets the calories he needs to grow, even when he doesn't want to eat.  Over the last few days, Theo's appetite has climbed back to a mid-range level, but he is struggling to keep any of it down.  Our laundry basket is constantly overflowing as a result.

In addition to the eating challenges, we (or maybe just I) had our first small "scare" this weekend.  We had Theo out and about early yesterday for a photo session (an incredibly generous gift from one of our friends and a photographer), and then went out to celebrate Nick's 30th birthday (so fun!).  It was clear to me that Theo was not himself; he was not smiling, he was really fussy, and he threw up several times.  After a couple of hours, I decided that I needed to take him home.  He screamed and cried the entire way home, and when I finally got him inside, he was so hot, white, limp, and had sunken eyes.  I took his temperature, without him even flinching, and he had a 100.4 degree fever.  We're under strict instructions to call the nephrologists anytime he has a 100.5 temperature, so I went ahead and called.  We ended up taking him into the hospital to check his fluid to make sure he does not have peritonitis.  Fortunately, all signs point to Theo having a viral illness, which is a relief.  I admit that I probably overreacted by being freaked out, but things have been so good since Theo came home that I think the first minor setback reminded me of some of the scares we had in the hospital.

Hanging out with my friend Baxter the bear
Despite the recent challenges, he has continued to grow.  He weighs a whopping 16 pounds, still has (at least) two chins, and his thighs would make any shot-putter jealous.  If I didn't know that we needed Theo to be nice and big for transplant, I might have a complex from hearing people say how chunky he is.  :)  His physical therapy coordinator even left me a message the other day that said, "He is the roundest little baby.  I have not had a baby that looks so good with his medical concerns."

Developmentally, Theo is getting stronger each week.  We continue to work on his arm strength and balance, and he is so close to rolling over.

Snuggling together in the park
Childcare is working out really well so far, too.  Stacie and Jenny, who were two of Theo's nurses in the NICU, each come one day a week and take care of Theo.  Not only do we feel totally comfortable with them being at home with Theo, but we love them both as friends.  We're really fortunate.  The rest of the week, Nick and Theo are buds.  I always knew our children would probably like Dad more because he is funny, goofy, and so engaging... and I was RIGHT.  Theo adores his dad.  I'm a bit jealous.

Theo's cousins, George and Anna!
We have a big couple of weeks ahead!  We leave on Friday for Theo's first trip to California.  I am so excited for Theo to meet his two California cousins, and I can't wait to meet my new niece.  (Hilary, my twin sister, delivered Anna on Monday, April 16th.)  It will be a special trip for us.  We are a little nervous about the logistics of getting all of the normal baby stuff plus medical supplies cross-country, but we are ready to spend a long weekend with my fabulous family, and to introduce Theo to some of his most ardent prayer warriors.

A couple of days after we get home, Theo will go in for his next surgery.  (Surgery is scheduled for Friday morning, May 4th.)  We will likely spend a couple of days in the hospital, because Theo will need to stop dialysis for a couple of days and the nephrologists want to be able to closely monitor him.

I probably won't post anything until after surgery, so I hope you all have a wonderful couple of weeks.  I've said it several times, but Nick and I feel so fortunate to have such wonderful friends in our lives.  Thank you for keeping us in your prayers.  We believe that Theo is a little miracle, and know that God is answering prayers.


  1. Thanks for the update Natalie, as always you guys are in our thoughts and prayers!

  2. Praying for a good trip for you all! What type of surgery is he having on the 4th? Love the picture of him and the bear - so cute!
    Lauren and John