The Family

The Family
For Christmas 2010

Welcome to our blog!

We've decided to start at the beginning and work our way forward. You'll have to check back often as we chronicle the last 2+ years.

Thank you to all those who comment. We appreciate knowing you enjoy our blog.

Also, we want to say thank you to all those who have recently started following our blog. We hope you find it informative and enjoyable.

We also realize that some of you may wish to contact us. So we have created a special email account for you to do that. Contact us at

Monday, May 3, 2010

Dealing with the EVD

Within a couple of days of getting the EVD, Nathan was feeling much better.  He was smiling again, kicking happily, and grabbing at things -- including the EVD on the top of his head!  Since it would have been very, very bad had Nathan pulled it out, his nurses kept a blanket over his head as a means of an out-of-reach, out-of-mind distraction.

Bekah even brought a few of his toys from home to help make life a little more bearable for him.  So, for the most part, Nathan was back to his normal, happy self.

Unfortunately, the same could not be said for both of us.  This hospital stay was probably the hardest for us since the early days of Nathan being in the NICU.

Since the EVD is basically an open wound, it has very specific rules.  The settings on the EVD must stay at a pre-specified height at all times, in order to ensure that the correct amount of fluid is being drained and the pressure inside the head stays where it should.  Because of this, the child's activities are very limited, mostly to just laying in bed.

So because of the EVD, it was really hard to do anything with Nathan.  He just had to lay there.  If we wanted to hold him, we had to call the nurse so she could clamp the EVD.  Once the EVD was clamped, we could then move to a nearby chair, sit down, and position Nathan comfortably in our arms.  The nurse would then reposition the drainage system, and unclamp the EVD.

When we needed to move again, we had to go through the same process every time.  So it was definitely on the low, low, LOW end of the fun scale.

And we had to do this for 2 weeks while they ran antibiotics to clear Nathan of the infection before they could re-insert the shunt.  And they were two of the longest, most miserable weeks of our lives.


  1. Hi, I'm a dad from the UK whose unborn son has been diagnosed with CDH in the last few days. Obviously my wife and I have been doing a lot of reading about the condition and came across your blog. I just wanted to say how much we admire you for having the strength to deal with such difficult times for you all. Nathan looks a happy and beautiful little boy, and we wish you all the luck and good fortune for the future.

  2. This post brought me to tears. As I read about the heartache of just wanting to hold your baby in your arms and how hard it was to do so, my heart breaks too. Sometimes when I see Nathan at church I have to hold back tears because he is such a miracle. Thank you for sharing this journey. It's teaching me more about the love of the Savior.

  3. You both are amazing. I'm so glad you posted your blog address on facebook so now I can follow what's going on in your lives! I'll give you this, never a dull moment!!! You are great!