Monday, April 2, 2012

March Madness

We love taking walks with Theo
March, in our house, was full of madness.  We love having Theo home.  Our life has been filled with non-stop excitement.

Let me tell you a little bit about Theo:
1) He has a smile that melts my heart.
2) He talks and talks and talks.
3) He loves to wiggle.
4) He is incredibly curious. If I try to hold him close to me, he will have none of it. He wants to be up on my shoulder, examining all that the world has to offer.
5) He has some amazing "dance-offs" with his dad.  For those of you unaccustomed to a dance-off, it involves Nick dancing like a crazy man while Theo quietly watches him.  As soon as Nick is done and points to Theo for his turn, Theo starts wiggling.  Both of the men in my life know how to shake it.
6) Theo loves watching Curious George.  He also loves golf.  Theo watched more of the golf tournament on Sunday than 99.9% of Americans.
7) You would be hard pressed to find a happier baby.
8) If Theo is fussing, he must be hungry.  Otherwise, he pretty much doesn't fuss.  We recently started rice cereal to help cope with the extra hunger.
9) He loves being outdoors.  Watching him look at the trees while we walk through the park is an incredible experience.

If you can't tell, I am so happy.  Having Theo home has been amazing.  Is it challenging?  Yes.  Are there days when I feel like the laundry will never end?  I'm pretty sure there aren't any days now when I feel like it will end.  Are there days when I struggle with balancing work and home life?  I'm sure that answer is pretty obvious.  But, is it more rewarding and more fulfilling than I could have ever imagined?  Undoubtedly.  I love my life.

Getting checked out at an appointment
On the medical front, I'm becoming more and more convinced that Theo was born with Prune Belly Syndrome.  Prune Belly Syndrome is a birth defect that affects approximately 1/40,000 births, and is characterized by three main symptoms: a partial or complete lack of abdominal musculature, urinary tract abnormalities, and undescended testicles.  Prior to birth, the doctors in Charlotte and San Francisco thought he had Posterior Urethral Valves (PUVs), which led to his kidney failure. After birth, though, they could not find any evidence of PUVs.  Since he has some abdominal musculature, he didn't seem to be a text-book Prune Belly baby, either.  They opted to call him "Pseudo-Prune Belly and Pseudo-PUV," which basically meant that he remained a mystery.  Now, though, he seems to fit more into the Prune Belly camp.  Being a Prune Belly baby has impacted, and will impact, Theo's development.

Eating rice cereal!  Yummy!
In terms of growth, I am very proud to report that Theo ranks in the 50th-75th percentile for both height and weight.   You may think that is "normal," but let me assure you, it is not.  Most "kidney kids," as we have come to learn, don't even make the height and weight charts.  Eating and growing are typically a huge struggle.  When Theo first came home, we spent nearly 90% of his awake time trying to feed him.  Several times throughout the day he would spit most of his feeds back up, and then we would put almost half of his total feeds over a continuous feeding pump at night.  Now, it seems that we can't feed him enough.  He is eating almost all of his food on his own during the day, and has started to keep most of it down, which is a huge change from the first several weeks at home.  We even started feeding Theo some rice cereal last week, and he has taken very well to eating from a spoon.

Developmentally, Theo is also making big strides.  We've been told that we should expect Theo to reach the gross motor development milestones 3-6 months after a typical newborn, since he has very little muscle to help him do things such as roll over, sit up, and walk.  He'll get there... eventually.  I've been so amazed by how much he has developed over the last few weeks, though.  His arm strength is improving, he's starting to excel at tummy time, and he recently started reaching for objects hanging on his playmat.  One of the "perks," if you can call it that, of having kidney failure is that Theo qualifies to have a physical therapist work with him once a week at home.

Kisses from mom and Great Grandma Laney

On the dialysis front, treatment has been going very well.  Every night is still an adventure for Nick and me to set up the system, change Theo's dressing, give him his shot and medications, weigh him and take his blood pressure, but we are starting to settle into a routine.  In an encouraging development, the nephrologists tested the adequacy of Theo's dialysis a couple of weeks ago, and it was determined that he could drop from 12 hours to 11 hours per night.  One hour in the life of an active baby makes a significant difference.

Most importantly, I don't think that Nick or I could ask for a happier baby.  Theo is such a champ.  He smiles constantly throughout the day, laughs at his dad, loves to talk, and takes great pleasure in wiggling.  For someone who has been through a lot of unpleasant stuff, he sets the standard for how to be joyful.

Meeting the cousins!  Theo loves Callie and Brynn
Nick and I could not be more proud of Theo.  He amazes us.  Saturday night, my grandparents were in town and they insisted that we go out. so Nick and I snuck away for a couple of hours once Theo was asleep.  It was incredible to sit together, talk about the last four months, and look back at pictures of Theo to see just how far he has come.  He is a little miracle baby.  In terms of faith, I feel like God has not allowed me to think much beyond the here and now.  I'm so thankful for that; when I start to think about next steps, next surgeries, and potential risks, I get overwhelmed.  Yet, I look back at all that Theo has been through, and all of the things that I have watched as his mom, and God brought us through all of that.  To me, that is amazing.

Cool Aunt Whit is the best
From a personal perspective, the last month has been full of both joy and challenges.  Like any working mom, I am trying my best to manage giving my all to my job and to my family.  There was one particularly challenging week where I am surprised that Nick did not leave me.  That may be a bit of an exaggeration, but it didn't feel like it at the time.  We've been used to a lot of quality time together up to this point, and we are learning how to make quality time happen in shorter amounts of time.  We're also figuring out which roles we can best handle to make our home and Theo's medical care run as smoothly as possible.  I still have some work to do in figuring out our schedule.  For example, I can count on one hand how many meals I have prepared in the last two months.  But we've been very blessed -- we are extremely grateful to some great friends who have been bringing meals by this first month to fill in the holes!

Loving life with Grandma
Last, our month was full of family.  And we have loved every minute.  Having visitors with Theo at home is so much easier than having visitors in the NICU.  What a treat it has been to see Theo with Cool Aunt Whit and Grandma Terry at home, and to watch as he met his cousins, Aunt Hill and Uncle Scott, and his Great Grandparents.  We feel so loved.  We lead such a great life; we have great family, great friends, and an incredibly resilient, happy son.  I wish everyone were so fortunate.

I apologize for taking so long to provide an update.  Thanks to all who have continued to pray for Theo and for us.  We continue to pray that he will heal, he will grow, and that we will find the right kidney for him at the right time.  We have a lot more prayers, too, but most of them right now are prayers of thanks.  Hope you all have a great week!

A few more pictures below:
Great Grandma and Great Grandpa with "The Champ"

Such a fun visit from the Dickman clan!

Until next time!


  1. don't you apologize for a long update! i love it! i am amazed by guys...all three of you! what an incredible journey you are on. we continue to pray that God would give you strength and energy and peace and joy. I guess joy is easy...Theo looks like an absolute delight!! love you all...

  2. I just love the update, I have been checking for one almost daily! What a happy little man you have, and how good God is to show Himself so strong in your lives. Can't wait to read more!

  3. Thanks for this wonderful update on Theo. I had been anxious to hear how the time at home was progressing. He is so adorable. You are blessed. I am very impressed with how you are handling all of the treatment and dialysis. He us lucky to have you all as parents. God Bless and Keep you. Beth Jordan