Two years ago today was one of the greatest days ever. After 68 days of fear, longing, and worry, our little girl finally left the NICU and came home.
the first time I ever walked around holding my daughter
Maddie on the loose!
in the sun for the first time
our family
When you’re in the NICU for as long as we were, you learn that discharge days are arbitrary. We saw plenty of parents get disappointed and frustrated as their child’s discharge date would get delayed for one reason or another. We were told Madeline would come home that week, but we didn’t let our hopes get TOO high. But that morning, our phone rang, and it was the head of the NICU. “Hi Mr. and Mrs. Spohr! Your daughter is ready to come home!”
Magical, wonderful words.
Mike and I raced to the NICU, car seat installed and ready to be occupied. We practically ran into the NICU and I gleefully removed the last sensors that were stuck to her skin. I dressed her in the going home outfit we’d chosen, and then I picked her up and walked around with her – the first time I’d ever been able to do that. She’d always been tethered to a monitor, or a medicine drip, or a an oxygen tube. But she was finally unencumbered. Mike and I walked her through the NICU for a goodbye – her victory tour – and everyone remarked how big she was. She weighed six pounds two ounces, double her birth weight. We thanked and hugged all the people who saved Madeline’s life, and then we left. I remember feeling like we should run, like the doctors and nurses were going to tell us that a mistake had been made and she wasn’t REALLY allowed to leave.
Mike drove so slow on the way home I still can’t believe we made it back before the sun went down.
Those first few days with her home were amazing and scary and fantastic. We stared at her. We couldn’t believe we got to be with her all the time, that we didn’t have to drive to visit her anymore.
Madeline was born in November, so she spent her first Thanksgiving and Christmas in the neonatal intensive care unit. The NICU is always a scary and sad place to be, but the family holidays really emphasize the loneliness that comes with an extended hospital stay.
A few months ago many of you voted and wrote amazing things about my family and this blog. Because of that, we were chosen as the winner of the Best Overall Blog on TheBump.com. With it came this prize:
As you all know, Mike and I have made a few trips to the labor and delivery unit of the hospital. It happens that Madeline’s NICU is right next to L&D, so I have been reminded often of the babies living there, and of the sixty-eight days the NICU was our Madeline’s home. Mike and I thought the week before Christmas would be a good time to make a special trip to the NICU. We hoped to brighten the days of the families and also thank the nurses and doctors for their continued hard work.
On Wednesday, I loaded up my mom and cousin Leah, and off we went to the NICU with a load of Support Packs and enough cookies from the local bakery to feed a small army.
It’s very hard for Mike to go to the NICU at UCLA because it reminds him too much of those first few horrible days when Maddie’s life was touch and go. I, on the other hand, like to go there because I get to see the people that are responsible for giving me seventeen months with my daughter. They are the people who cared for her tirelessly, who never gave up on her even when the situation was so dire. Any opportunity I can get to thank them I jump at. Last Wednesday was no exception. I was happy to see many of the nurses that cared for Madeline, including one of her primary day nurses that I hadn’t seen in a very long time.
The best part, though, was handing over the support packs to the NICU Director. It’s always nice to send out support packs, but there is something especially meaningful about bringing them in person. Being there in the NICU and seeing some of the families sitting at their child’s bedside reminded me that there truly is a need for Friends of Maddie.
Thanks to all of you we are working to meet that need.
If you would like Friends of Maddie to come to your NICU in the New Year, please email friendsofmaddie at gmail dot com.
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.
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.
After Maddie passed away, my Aunt Kathy started emailing me stories she’d planned on sharing with Madeline. As the oldest of my mom’s siblings, Kathy has always had a better recollection of the many events that happened during their childhood. Some of the stories I’ve heard a few times, and they always bring a smile to my face. Others are new to me, and I cling to every word, seeing the adventures unfold in my mind.
My favorite stories are the ones she tells of my grandma. My grandma was an amazing woman. She had five children in five years. She raised her children on her own (with a little help from my great-grandmother), worked full-time, and still made dinner every night. She lived with us when I was growing up, and taught me how to cook and bake. She was the best listener and was always available to take me to one of my many lessons or practices. When I got older, she let me borrow her car when I couldn’t bear the embarrassment of being dropped off by an adult. She always put her family first. We named Madeline in her honor.
A couple weeks ago my aunt told me the story of when her brother passed away. I already knew about Tommy. He was diagnosed with Leukemia when he was in elementary school. My aunts and mom all remember him being sick and laying on the couch. They were jealous (in the way only kids can be) that he got to watch so much TV and meet Tim Considine from “Spin and Marty” and “The Hardy Boys.”
Tommy (l) and Tim
I’m sure Tommy was jealous that his siblings got to go outside and play.
My mom and aunts knew Tommy was very sick, but they never thought he wouldn’t make it. This is because my grandma protected them all. She never let them see how scared she was. And then, when he didn’t make it, she kept protecting them.
My aunt wrote,
Since we lived in a shoebox there was really nowhere she could go to have the privacy she needed in order to grieve, so I never really knew if she ever found a place where she could truly experience the pain and sorrow she was feeling. I just know that she kept on going for all of us and as time passed, to us, she was just like the mom she had always been in the past with one exception. For several years after Tommy’s death, we would take rides out to the cemetery near the San Fernando Mission where he was buried. We would stop at a roadside stand and pick up carnations, usually red ones, and then lay them on his grave. I never saw her cry when we stood by his grave–she was so strong–but I also know that losing Tommy ripped a hole in her heart.
After I read this, it hit me that my beloved Grandma would have understood exactly how I was feeling. That we had a terrible, terrible thing in common. I missed her so much in that moment.
Yesterday, my mom and I went to the San Fernando Mission Cemetery. My mom hadn’t been for many, many years, and I had never been at all. As we walked the rows of markers searching for Tommy’s, I was struck by how close together the graves were. And then I started looking, and I realized we were in the children’s section. They don’t need much room.
I wandered the rows, reading the headstones, noting that some only had one day etched on the stone, while others had just a few years between the first day and the last.
Some had familiar dates.
And some had familiar personalities.
There isn’t enough room on a headstone to tell the story of a child’s life, or a parent’s love.
I thought about the parents that had walked the same path as me all those years ago. I felt overwhelmed by sorrow.
After a bit of help, my mom found Tommy under the shade of a tree.
We laid down flowers. Red carnations, like my grandma used to bring. And purple ones, for Madeline.
I stood there, covered by the shade of Tommy’s tree, and I thought about my grandma. I felt her pain, our pain. I pictured her coming to visit her son and not being able to cry for fear she’d frighten her other kids. I imagined her coming without her kids, and kneeling on the grass. I hoped she got her release. I cried for her in case she didn’t. I cried for my mom, and my aunts. I cried for all the other parents that had knelt on that lawn. I cried for my Uncle Tommy. And I cried for my Madeline.
