What Difference A Year Makes

This morning I had planned on responding to something Will (of Designerblog fame) had passed on to me, but after my visit with my niece in the hospital yesterday, I had to post about that instead. Will – I promise I’ll blog about my “seven’s” tomorrow!

So last night I went to the hospital to visit my niece and sister-in-law. The good news is that my sister-in-law (Heidi) was released from the hospital as a patient and is now able to stay in the room with my niece, Heather. Unfortunately, her feeding tubes are still removed so she’s having to resort to feedings via TPN (which is an all liquid diet going into her stomach via tubes). No food for her. We’re hoping this is temporary until they can install another J and G tube (where she can eat some regular food, too).

My brother was at the hospital as well and I managed to arrive just as Heidi was being released from her room.

But things aren’t going so well for my niece. I went direclty to the Pediatric Intensive Care Unit where I found that my niece is in even worse shape. She’s been on a ventilator since her emegency surgery nearly two weeks ago. But her lungs have deteriorated so badly that they’re pumping quick thusts of air into her lungs at the rate of at least one per second! They think she might have some sort of lung disease or fungal pneumonia but can’t determine that until her lungs are strong enough to come off the ventilator – she’s too fragile at the moment.

Anyway, this pumping causes her chest to involunaraily heave up and down. And because the oxygen is pumping so rapidly, they’ve had to use drugs to paralyze her (literally comatose) so that she doesn’t tighten muscles and cause damage to herself (since this isn’t a normal way of taking in and breathing out air). In addition to this massive tube down her throat, she has at least 7 other machines connected to her (to monitor, to administer medications, to feed).

While I was there, my brother was taking pictures of Heather so that he can explain what’s going on to my other niece and nephew who are unable to visit the ICU. My personal take on it is that the photographs will scare the shit out of my niece and nephew because, quite frankly, it scares the shit out of me and I’m 34. It’s terrifying.

This morning, I came in to work and my sister-in-law emailed me the photographs so I can print them for her (in color). Here’s a time line:

Winter 2003 – this is Heather at just about 6 months old. She was a premie, but despite not being able to eat, she looked happy.


September 2004 – this is Heather on her 2nd birthday (one year ago). You can see her feeding tube as she’s in her little wheel chair/stoller. I believe she’s enjoying a little Patty-Cake. But notice that she’s not smiling. Smiles have become less and less frequent.


September 2005 – these two photos are of Heather last night. Just one year after the last photo was taken. The swelling in her face has gone down, but you can still see the puffiness (especially the eye lids) and the veins being forced to the surface of her neck.

I can’t lie and say these photos don’t disturb me. As a matter of fact, I’m tearing up as I write this. OK – I can’t write anymore. I’ll blog again tomorrow.



  1. Comment by Underling on September 8, 2005 11:28 am

    Oh Karl, I am so sorry.

  2. Comment by Lise on September 8, 2005 11:54 am

    How heartbreaking, especially seeing the first picture, where she looks so happy and (comparatively) healthy. Be glad they’ve sedated her to that level — being in a state of unawareness is a blessing for her. Sending all my good thoughts towards your family.

  3. Comment by Kirk on September 8, 2005 12:21 pm

    I am so sorry. The photos are devistating.

  4. Comment by Doug on September 8, 2005 12:39 pm

    Oh Karl…I dont even know what to say. My prayers and all good thoughts are with you and your family.

  5. Comment by Will on September 8, 2005 1:22 pm

    Nobody should have to undergo that but what’s so hearbreaking about your neice is that she’s hardly ever known any other kind of life.

    I’m sure you’ve done this already, Karl, but do tell her parents how much support and positive energy are coming their way from all of us.

  6. Comment by Brad on September 8, 2005 1:50 pm

    Thinking of you.

  7. Comment by J.P. on September 8, 2005 1:54 pm

    Big hugs to you. I’m sending lots of positive energy your way.

  8. Comment by karyn on September 8, 2005 5:14 pm

    Ah Karl. There are no words. I wish I could hug you. I think I’ll go hug the boys instead and try to remember how lucky I got.

    Much love & the best vibes I can possibly conjure in the face of this kind of horror. Hang tight. Paul & the children are going to need you. xoxox

  9. Comment by Ronnie on September 9, 2005 2:27 am

    I am sending you a hug through the internet. Which is small compensation for the pain and suffering this beautiful little girl is going through. I want you to know Karl I am always there for you. Your family and This Beautiful Little Child are in my thoughts, wishes, and prayers. I know it’s not enough but I hope it helps.

  10. Comment by matt on September 11, 2005 12:39 am

    Oh, Jesus. Karl, I am so sorry. As always, she and the family are in my prayers. This is just so heart breaking. Please give P&H hugs for me. Stay strong — Paul is going to need you. But, don’t fail to be good to yourself and allow yourself to feel as you try to work through all of this.

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