One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Saturday, November 06, 2004

life post-transplant

It's strange the way memory works. Certain smells, certain know how it goes. Today while the girls were playing I put on a Harry Connick jr. CD (Songs I Heard--the one where he does Disney songs and such). And found myself remembering our time in the PICU after Anni's first transplant. We were so terrified of germs when they first brought Annika back from surgery that Joerg and I put on gowns and masks. Actually, the gowns were required, as she was still positive for a nasty contact-spread antibiotic-resistant infection (VRE), but the masks were just us being too scared to even breathe on her. The surgeon rounded the next morning, and stopped short before entering our room, seeing us covered from head to toe in protective gear. He did a quick consult to ascertain what new, highly contagious bug we must be carrying, and upon being told that we simply wanted to wear the masks, he came on in and did his check of Annika with no comment to us on our apparently strange paranoia. Anyway, we had brought along Anni's favorite CD at the time, Sara Hickman's Newborn, and our own CD player, as CMH's entertainment equipment seems always unavailable or broken. We couldn't plug the CD player in (with life support equipment being plugged in to the same outlets, they simply didn't want any CD player from Wal-Mart suddenly blowing a circuit) so had to feed it batteries non-stop, but we felt better about leaving Annika at night if she at least had the familiar sound of her favorite music playing. It was hard not being allowed to stay with her in the PICU, although I was just down the hall in the family lounge sleeping on a pull-out chair and Joerg was just down the street at the Kohl's House. One morning I came in to discover that the night nurse had changed the music to a radio station. I was not particularly pleased, but it seemed not worth complaining about. The next morning, the music had been changed again (to the Harry Connick jr. CD, which brought back this memory in the first place and by the way is actually kind of dark in places and not what I would consider ideal "kids in the PICU" kind of music), and I discovered that Anni's favorite CD now had a huge, deep gash in it, which made it unplayable. So I was irritated, but did it seem worthwhile to alienate the woman into whose hands I placed my child's life every night over a scratched CD? Even if it was the only one that seemed to really calm her when she was upset? And even if it was not an easily replaced CD, since we had only ever found it on-line? No. That evening when the nurse arrived, she did her usual rearrangement of all the tubes and lines and equipment and baby in the middle of it all. When she moved Annika, though, Anni started screaming. I'm hoping you've never seen a baby scream while on a ventilator as it is one heart-breaking sight. Her face turned red and she tossed her head from side to side, and tears started rolling down her cheeks, but there was no sound, of course, because of the tube down her throat. It was awful, and Denise just kept going about her business. In a rather desperate voice (I'm sure it was desperate, anyway, although I confess I can no longer hear how I sounded in my own head) I asked her, "Isn't there something wrong? What's happened to her?" And the nurse didn't even stop what she was doing as she said something like, "Look, they don't like being on the ventilator." Eventually, Annika calmed and I let it go. But it didn't take long until I noticed that there was a lot of blood on the other side of her bed, and discovered that the nurse had pulled out one of her central lines while rearranging her. This one went into her jugular, and was attached with several sutures, which had just been ripped out. Needless to say, I was pretty upset. But I was still holding on, knowing that it had been an accident--the line was really big and bulky and had kind of flopped around insecurely anyway. I was really dreading having to leave her that night, though, and wondered if I would be able to just sit there without falling asleep in the chair (if you fall asleep, they ask you to leave). One of the worst things about being on the ventilator is that your normal secretions tend to start plugging up the tube, and need to be suctioned out in order to breathe. I noticed that Anni was beginning to look a bit uncomfortable, tossing a bit. So I told the nurse that I thought she needed suctioning. The nurse looked at me and, I swear I am not making this up, she sighed and then rolled her eyes. I would not consider myself a quick-tempered person, but when I do get angry I get blindingly angry. And, of course, I had reached that point with our nurse. I waited until she had suctioned Anni, who had needed it of course, and then I let her have it. I'm glad I waited until she was done suctioning, so that I had the time to think it through enough to remind myself to keep my voice low and calm, as there's not much privacy in the PICU, although we did have a private room, thanks to Anni's infections. The gist of my comments being that she obviously had no kids, or she wouldn't behave that way, and even if she did have kids that she had no idea what it was like to sit in a PICU with them after months and months of sitting in a teeny hospital room waiting for a transplant that you knew might never happen. To my shock, though, as I finished my rant, she began crying and saying that I was right, but that she didn't have any kids because she had miscarried a few months back. So then we both started crying, and we hugged and talked about it for a while. After that the nurse was much friendlier, but still I was glad that this was the end of her 3-day rotation. I guess I would call her an exhausting nurse. So that's life post-transplant. A normal day can be suddenly interrupted by an intense and unpleasant memory. On the other hand, I remembered seeing Anni in pain on the ventilator and at the same time I was watching her trying to convince Frankie to dance with her. And any mommy would love seeing that, but I think I loved it even more realizing how easily it could have never happened. How simply she could have left us without ever seeing her sister or trying ice cream for the first time or dressing up as a princess or singing her first song. Life post-transplant is sometimes a strange place, where you feel this euphoria that you've been given a chance to watch your child grow and then it turns around into this intense paranoia that it is all too fragile, this little life before you. And then you feel this pity and anger that life has been made so much more difficult for your child, and for you, which quickly spins into guilt for feeling this, when you know how lucky you are to still have your child, when others you have known and cared for are still missing their lost children. And the thought of losing your child brings you back to the fear and paranoia, which leads you to sweep her up in your arms for a super-duper tight hug. Luckily, my little one still hugs me back when I do this, sometimes even whispering in my ear, "I love you, Mommy." And then I'm back to that euphoric joy again.


Anonymous Anonymous said...


I'm so glad you have this page to talk about things such as Anni's time in the PICU and all those horrible experiences. I don't know what that's like, but here's a HUGE hug coming your way for those rotten memories. See you soon - Jenn

11/09/2004 2:43 PM  
Blogger Kyla said...

This came up new on Bloglines today. And so I read it, even though I knew it wasn't actually new. I wasn't around when it was new, so that makes it new to me. *lol*

You are an amazing writer and mother and person, Moreena. I'm so thankful that you share it with all of us.

3/14/2007 1:42 PM  
Anonymous moreena said...

Thank you, Kyla (and Jenn of 3 years ago).

Sorry about this popping up on Bloglines. I was just going through some of my old entries, realizing that I needed to edit to be a little more respectful of protecting the privacy of those involved. So that must be why it showed up.

Also, I realize that I tend to write about the same pivotal events over and over. Which makes some crazy sense, I guess.

3/14/2007 5:21 PM  
Anonymous amanda said...

I think its strnage that I came acorss this, I have been thinking and thinking how fragile life can be and my fear of something happening to my 21 month old daughter. I love her so much and can't bear her being in pain or distress. I am so grateful she is healthy, yet I feel guily in case saying this will jinx it or something...aarrhh..motherhood..

Thank you for sharing, not jut about your daughter's condition but the day to day events that occured witin it.

I so hope your life is in a good place and your daughter is on the road to living her life to the fullest.

4/25/2007 1:11 AM  

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