Since I’ve been sick this week I haven’t been able to keep my mind occupied the way I normally can. So I surrounded myself with her. I pulled her favorite toys and clothes close to me, breathing her in. I looked at thousands of pictures of her face. And I watched videos of her. I miss her voice so much. I let my ears take in the sweet sound of her so I can imagine all the things she’d be saying now.

I watched every video of her I have. The early videos surprised me by being the hardest to watch. The footage of her in the NICU makes my heart pound and my stomach drop – and it’s all footage of her when she’s doing well. But the SOUNDS. You can hear other babies crying, medical staff bustling, alarms going off…the same alarms that were going off when she was crashing in the PICU. She’s so cute in this video, six weeks old and newly off the ventilator, but all I can hear are the alarms.

if you can’t see the video above, click here.

Earlier this week I read an article in the New York Times about the lasting effects NICU trauma can have on parents. Researchers from Stanford and Duke Universities followed parents to see how many of them ended up with Post Traumatic Stress Disorder. The only thing that shocks me is that every single parent DIDN’T end up with it. The VAST majority, however, DID. Every quote from every parent interviewed for the article could have been said by Mike or me, or any of our other friends who endured NICU life.

The article points out that NICU parents suffer multiple traumas – an early or rough birth, witnessing their infant and other infants go through intense medical procedures, and constantly hearing terrible news. Madeline’s premature birth by emergency c-section was terrible, and it wasn’t even unexpected for us the way it is for many parents. We watched Maddie undergo several procedures (especially Mike in the first few hours before I checked out of my hospital), and I saw other babies have just AWFUL things. I saw other babies die. We were told many, many times that Madeline would die. This isn’t even taking into account what we saw and experienced in the PICU on April 7th.

Later, the article talks about how many parents aren’t told about the signs and symptoms of PTSD. In the NICU, the available medical professionals are very focused on helping the baby – as they should be. Some hospitals have social workers or other programs in place to support the families, but far too many do not.Hoepfully Friends of Maddie will one day be able to help fill this void. But in the meantime, many parents are left on their own to deal with their own experiences. I know I had a hard time talking about things I’d experienced, because I didn’t want to seem ungrateful that my daughter had made it out alive. If I hadn’t had my blog to write out my feelings, I think I would have been a very different parent to Madeline.

Madeline received all her care through the UCLA health system. She was in the NICU on one campus, and the PICU on another campus. Because UCLA is a teaching hospital, their faculty has continuing education – doctors, nurses, residents, students, etc. I have been asked to participate in an upcoming symposium on UCLA’s Pediatric Palliative Care Program for nurses and physicians to better care for children who may or may not survive. I will be telling Maddie’s story, and also talking about what nurses and doctors can do to make things easier for the parents AND the families.

I’m hugely honored at the opportunity to help doctors and nurses, but I am overwhelmed by the responsibility. I only know of my own family’s experiences, but I will be talking on behalf of “the many.” This is where I turn to all of you. If you had a child in the NICU or PICU or in long-term care, or maybe your niece or nephew was, or you know someone who was, etc – what do you wish had been easier for you? What would you have changed? What did you LOVE? Leave me a comment or a link to where you may have written about your experiences (make sure you use a valid email address).

This is a rare chance where we,  the families of critically ill children, can bring change that will help make the lives of countless other families easier.