Wednesday, December 7, 2011

The Roller Coaster of NICU life

Our family
We were warned that the NICU experience would be like a roller coaster.  Some days are wonderful, while  others are a lot tougher.  I'd have to categorize yesterday as a little bit of a tougher day.
Theo's lungs have healed remarkably well.  He no longer has any help breathing.  The doctors and nurses have all commented on how remarkable his lung development has been to this point.  (And trust me, Theo likes to show off his powerful lungs!)

Superheros sometimes cry!
On the other hand, the kidneys are significantly damaged; in fact, Theo has kidney failure.  The doctors were hoping to give the catheter time to heal before starting dialysis, but Theo's lab results have been trending in such a way that the nephrologist (aka kidney specialist) opted to start dialysis yesterday.  I spent all day with Theo, and he seems to have handled the first day of dialysis decently well.  Basically, peritoneal dialysis consists of putting a fluid solution into his abdominal cavity, letting that solution "dwell" for 45 minutes, and then draining the fluid out.  This process continues without interruption for 24-hours per day.  As the fluid sits in the abdominal cavity, it pulls out the toxins from Theo's body by process of osmosis.  So, it does the job for the kidneys.

One of the hardest parts of all of this is that Theo seems totally healthy, and acts just like any newborn.  He cries when he is hungry, cold, and wet.  He is alert and follows us closely with his eyes.  He loves to be wrapped up tight and cuddled.  If it weren't for the kidney issues, he would be home with us right now.
Looking pretty cute in his car outfit and hat

But since there are kidney issues, we are so thankful that Theo is being treated so well by the nurses and doctors.  We pray that Theo will not run into any complications as he starts dialysis.  (The most common complications include infection, leakage of the catheter, and the development of a fatty, fibrous content that clogs the catheter inside his abdomen.)  Dialysis will make it more difficult for Theo to eat as well, as the increased pressure inside his abdomen will make him feel full.  So, we are praying that his appetite grows despite the extra pressure.  (Late last night they had to put a feeding tube back into his nose because he was not taking the bottle very well.)

In rare circumstances, babies start dialysis and then respond so well that they can go off at some point.  Based on what we know of Theo's kidneys, this would be a highly unlikely (but very welcome!) development.  (Theo's kidneys are much smaller than in a baby with normal kidney function, and they have cysts and reflux.)  So, he will likely remain on dialysis until transplant becomes possible.

Up to this point, I had hoped that Theo's lung progress would carry over into his kidneys, but that does not seem to be the case.  Theo will likely be in the NICU for several months until he reaches the point where Nick and I can do dialysis at home.  I was prepared for the fact that he may have to be there for several months, but actually hearing it from the doctor was very difficult for me.  Nick and I so badly want to bring him home where we can cuddle with him, love him, and protect him.  We take some consolation in the fact that he is in great hands, and that he is getting plenty of love from the nurses.  He is one seriously cute baby, and he is already making the nurses swoon.

Grandma and Theo.  
We've been very fortunate to have my family in town over the last week.  My mom was the last to leave today, and it was hard to see her go.  Theo loved to spend time in Grandma's arms.  I have such an incredible family, and it was very touching to have all of them make the effort to be here for Theo's first week of life.  I wanted to include a few pictures of them with Theo, and celebrating his progress with us!
Aunt Car and little Theo

Uncle Justin and Theo

Cool Aunt Whit and Theo

Grandpa and Theo
Later this week we will welcome Nick's sister, Hillary, into town, and we are really looking forward to her visit.  We hope to have the rest of Nick's family visit shortly thereafter.

Despite the ups and downs of NICU life, Nick and I feel so lucky to be entrusted with Theo.  Although I'd love to have him with me now, I know that I would not change a single thing about him.  He is precious, feisty, and perfect to me.  We feel so blessed to have him in our lives, and look forward to seeing what God is going to do in his life.

Aunt Hil and Theo

Celebrating after Theo's two successful surgeries on Friday


  1. Superhero is right! We've been praying for Theo and hope for his quick recovery. Thanks for the updates. Love the pictures.

  2. love you guys so much! continuing to pray for you all...our god is a god of miracles! praying for peace in the midst of the up and downs in the nicu. hugs to you all!

  3. Praying for you guys daily. Thanks for the wonderful post and pictures. (I can hardly tell your family apart, Natalie - you ALL look beautiful and identical!)
    Love you guys-
    Lauren and John