At the risk of becoming more of a broken record, I am reposting an article I wrote about the Neonatal Intensive Care Unit at the University of Tennessee Medical Center here in Knoxville. The article was titled Four Weeks and Famous and was the first at length description of our daughter Anne Marie and her struggles in the NICU at UT Medical.
I mentioned in the piece that a video was produced for a very large fundraiser designed to help with the renovation of the NICU, enabling all of the premature babies to have their own rooms. My wife Tracy, pictured below, and yes I know I married way out of my league, was interviewed for the video and appears in it with our daughter. I even got a 3sec cameo at the end, although my hands appear several times.
The video was used on the night of the fundraiser and the NICU received over a million dollars in donations allowing them to continue with the renovations.
I have added the you-tube link to the video for your viewing pleasure. UT Medical did a great job with it. The three stories are very compelling. I was told there was not a dry eye in the house. So here is the post again, the link to the video and an address to donate is at the bottom.
Four Weeks and Famous
I’ve hesitated to write about my daughter for a lot of reasons. First and foremost; she’s battling for her life in the Neonatal Intensive Care Unit (NIC-U) at the University of Tennessee Medical Center. I wanted to be sensitive to the very real and frighting thought that she may not make it, and then here I am writing semi-funny blogs posts about her.
She is doing much better now, gaining weight, growing longer. She is now 2 pounds 12 ounces, a full pound heavier than the day she was born. She’s also taping out at 15 3/4 inches, three and three quarter inches longer than the little 12 inch sprout she was, born a month ago. But, one thing I have learned is it can all go downhill in a literal breath or heartbeat. Life is unbelievably fragile.
That’s when I decided it was ok to write about my daughter. Her life is fragile, but all of our lives are fragile. We all hang on the edge of living or dying. Not talking or writing about Anne Marie in funny and positive ways won’t change the balance of that. This stems from an old adage or practice that you don’t really tell anyone you’re having a baby until the pregnancy gets past 12 weeks. The odds of something catastrophic happening go way down after 20 weeks. I get it and we’ve even done that. But this is different, for me anyway.
So I’ve been sitting on my hands, worried that I’ll write something funny and then something catastrophic may happen. Then I looked around the NIC-U again. Something catastrophic is always happening. In the five hours she was alive, Linda Claire taught me to enjoy while you can. Anne Marie is alive, and I am going to enjoy my daughter and celebrate her for as long as she’s here and part of that celebration, for me, means writing about her.
Introducing my daughter, Anne Marie Linardo – Four Weeks and Famous.
So when we wrote the obituary for Linda Claire we did what a lot of people do. Instead of flowers we asked for a donation be made. It took Tracy and I about two seconds to decide the donations should go to the NIC-U at the UT Medical Center here in Knoxville. The staff there have just done an outstanding job in every conceivable way. The nurses are the total package. Healers, ministers, counselors, you name it they can do it. It was an easy choice to ask people to donate there instead of send flowers.
Well, some family members sent donations, then some friends, then some friends of friends. Even a few people who just happen to see the obituary in the paper but have no connection to us sent a donation. I know this because every time someone donates, the Director of Development at UT Medical Center sends me a letter acknowledging a donation made in memory of Linda Claire.
Small side note. I also got a three page hand written letter from a woman who wants me to become a Jehovah’s Witness. She sent the letter to the funeral home listed in the obituary and they mailed it on to us. She really threw down a sales pitch. She sent me a few tracts from the Watch Tower. For you young folk, that’s an old version of the literature JWs used to hand out. They moved away from that because it became a bit of a stigma. If a person was preaching to you on the street or your porch all you had to do was look at the back of whatever publication they gave you and if it said Watch Tower publishing, you had some JWs on your hands, well on your porch anyway. Not that there is anything wrong with that.
Anyway, word got around, as did the edible arrangement my sister Mare sent to the NIC-U nurses. Master stroke dude. First it was about our tragedy and then about the donations made in memory of Linda Claire. We got a call from the development office at UT Medical and they want to interview Tracy about her feelings on the NIC-U and film her interacting with Anne Marie in the NIC-U environment. The interview will be played during an event called “An Evening in Orange” at Neyland Stadium. It’s a large, yearly fundraiser for the hospital and this year it will benefit the NIC-U. So naturally they wanted parents with children in the NIC_U to participate. I think four families were interviewed.
Neyland Stadium is home to the University of Tennessee Volunteers football team. It seats 102,455 people on game day and is the 6th largest non-auto racing stadium in the world. Just in case you were wondering.
I imagine this event will be tents and tables on the field. I don’t expect 102,455 people in Knoxville have the desire or the 750 shekels it takes to get in. Yeah, this is a big time fundraiser. Hell, we’re in the video and we’re not going.
Today was the day of the taping. Tracy was interviewed and then the crew followed us over to the NIC-U to film what amounts to some action shots. Wasn’t sure how much action they were going to get out of a bunch of one to two pound premies. Of course our daughter didn’t disappoint. As soon as the crew sets up and starts filming, Anne Marie falls asleep, stops breathing, and her heart rate dropped into the 40 to 50 range.
That’s bad of course. It normally sits around 165. Alarms start going off, people start coming. However, this is “normal” for a baby that weighed less than two pounds and was born 3 1/2 months early so we’ve seen this a lot in the past four weeks. It’s just funny because she had been fine all day until the very moment the cameras were on. Tracy had her hand in the Iso-Box and so she just sprung into action. Normally a few strong pats on the butt or feet will be enough to wake her up and she’ll start breathing again. It was maybe 5-10 seconds and her heart rate went right back to where it should be. Welcome to our normal.
Once everyone settled down, it was movie making time. The interview had already been conducted so this was just film footage, no talking. Our nurse decided she did not want to be famous, said something about getting her hair done had she known and shot off to work on some other babies. There is a reason the nurses in the NIC-U are badass. They fight the fight 12 hour shifts at a time and take none of the credit or glory.
Tracy put her hands into the Box and Anne Marie just laid there, sleeping. She normally works the camera, but not today. One terrifying heart event is all you get today boys.
It was a tiring day, for everybody, but it was worth it. The NIC-U staff of doctors, nurses, support folk, and front desk gang are all top notch, earning every nickel and then some. After everything they’ve done for us the least we could do was spend a few hours helping in the fund raising effort. Although when they see the part of the video I’m in they may start a collection to send me to fat camp.
For those of you who attend this event, remember the camera adds ten pounds at least. And yes there was only one camera on me. Video here: UT NICU
If your heart desires, donations can be made to:
In Memory of Linda Claire Linardo
Neonatal Intensive Care Unit at the University of Tennessee Medical Center c/o Office of Development
2121 Medical Center Way, Suite 110, Knoxville TN, 37920