I've toiled over whether or not to post this story. When I started writing it, I was beginning to crack. I'd barely slept in a week and took 8 Benadryl a night just to knock myself out. Since then, the director of the NICU sat down with me and my family to hear us out and work with us to make the policies work for our family. I am so relieved and grateful.
Nonetheless, this is part of my story. This is my platform, however small, and I get to use it to speak my truth. If someday another NICU family is struggling and ends up reading my blog, I hope they take away that you must advocate for yourself in the hospital system to be successful. That being said, I will aim to be fair.
I barely see my son. At best, I see him twice a week, for a few hours. Only Trevor and I can escort guests in, one at a time, with only two at the bedside. We're allowed two designated support people that can visit Jude without us: Ariel, my sister who works at Children's, and my mother. Both have more than fulfilled their roles with frequent visits, but it is not enough.
They were not allowed to bring in additional guests. This means, at my infrequent visits, I'm nearly always escorting in family members who love me and love Jude to visit. I absolutely love my family. I would not be here to write about this without my family's love and support. However, I want to be selfish with my son. I need one on one time to bond with him. Shuttling folks in and out takes time away from me and him.
Ariel tried once to bring my dad to visit and was man-splained by the charge nurse that it wasn't allowed. My father had not yet met his grandson and was turned away. The charge nurse, let's call her Karen, claimed concerns about confidentiality and doctors discussing medical issues in front of him. Karen even boasted to Ariel about how she sent away a family that had visited from California. Ariel looked at her in horror. Why would they do that? Why would you enforce a policy that denies love and neurological stimulation to a suffering child and their family? Where is the empathy and judgment? Ariel is a fucking rock. She has been more than stoic through all of this. She doesn't crack, not ever, but on that day, Karen brought her to tears.
We brought this up at surgeon meeting #1. Our team of doctors, NPs, and social workers shrugged and told us it was out of their hands. They gave us a number to call, which we did, just to be man-splained to some more. In fact, security tried to stop Trevor and me from entering together for that meeting because Ariel was already there, and the total limit was two people. At least there was no confrontation this time, and she let us through on the grounds of the surgical meeting.
More recently, I fought with Karen over the age limitation in the policy. My brother and nephew were in town from VT. My sweet nephew Leo had just been scooped up from his very first sleepaway camp, a skateboard camp, after breaking his jaw in 2 places. My brother got the call from 400 miles away that his son was in the hospital. We decided to make lemonade.
Leo and Jake drove to Boston to see a specialist at the Waltham branch of Children's Hospital. From there, they would meet me at the Boston branch and meet Jude for the first time. Then we'd all return to Hingham together for some boating and R&R.
Before they arrived, I was scheming how to get past the no children under 12 who aren't siblings rule. I didn't know it existed until I checked the form that morning. I plotted to tell them I got pregnant when I was 28 and wasn't fit to be a parent. My brother heroically stepped up to take care of my child, who looks exactly like his mother and absolutely nothing like me, as his own. This is an elaborate and insane thought process to get past a policy. I couldn't imagine I would actually have to use it, but I did.
We got past the front desk. She didn't ask—plausible deniability. I don't know the name of the girl who let us in, but I am forever grateful to her. I hope she didn't get in trouble, but she probably did. I'm sorry but so grateful. Because of her, my nephew and brother met my son, possibly for the only time. That matters to me. That counts for my broken, broken heart.
Immediately after entering Jude's room, his unsympathetic nurse told me my nephew had to leave. I said, "How do you know he's not my son?" She said, "Because we know." I told her that "was just so unreasonable." She huffed off to get Karen. I could see her talking about me in the next room, angry. Karen came in and re-explained the visitor policy, this time changing 12 to 14, just to be even more ungenerous. I said, "This is my son," and she left.
It was fucking shitty. It made things so awkward with my brother and nephew. The poor kid is eight and just on the heels of the most traumatic event of his life, and here he is at the center of a lot of negative attention. Jake and Sarah, my brother and sister-in-law, assure me Leo thought I was a badass. Well, I'm glad. But I don't want to have to be a badass. It makes me feel like shit. Furthermore, I left knowing the person responsible for my son's care and life that day hated me. I hadn't had a night between the incident and meeting with the director where I wasn't stewing and reliving the event.
A week later, Jude went in for another scope, with more bad news that his subglottic web and stenosis had progressed. This time the director of the NICU was the attending. Ariel, the hero of this story, obviously, asked again for a bit of compassion. She told Dr. H how hard a time we've been having with the visitor policy. I told her I'd come to dread coming into the hospital for fear of fighting with Karen. To us, the policies seemed anti-family and frankly mean-spirited. There was no judgment, compassion, or avenue to talk reasonably about our concerns. We told her how we'd asked previously and felt like it was all falling on deaf ears.
Dr. H was horrified. She stated definitively that under her leadership, we absolutely could not have an anti-family NICU. She promised to sit down with us the next day to work together to find a solution for our family. And we did. That day we had the A team in the room:
They listened as we spoke. We told the stories I've just shared above. I cried. Ariel ranted. Long ago, I learned you immediately lose the upper hand in a negotiation when you curse. Well, fuck me, I couldn't control it. I was just so sad and so so mad.
They heard us. They didn't interrupt or try to invalidate our points. They recognized that Jude's situation is exceptional. In the best-case scenario, he will live in the NICU for six months before coming home. It isn't financially feasible for Trevor and me not to go to work. We cannot be at his bedside enough to meet his needs and help his neurological development.
We came to a consensus. From here on, our designated support persons, Ariel, and my mom, have the same access as the parents. They can bring in guests in our absence. Furthermore, we've gone from 2 to 3 people at the bedside. So my aunt and uncle can be in the room simultaneously. This might sound trivial, but it matters. When someone is waiting their turn in the lobby, the visit is rushed. Most time is spent feeling guilty and trying to hurry up. With everyone together, we can take our time. We can create shared memories. Finally, we can discuss a one-time exception to the age policy so Ariel's boys, Jonah, age 10, and Luke, age 8, can meet Jude before his surgery. Also, the mean nurse will never be assigned to Jude ever again.
I left the room frankly feeling like a badass, but this time proud of it. A huge weight was lifted off me. Judy gave me the biggest hug imaginable, and I left the hospital as a new person. I treated myself to a large lobster roll from James Hook and Co. (the best lobster rolls I've ever had) and a glass of rose. When I got home, I felt like a wrung-out towel. I had nothing left in me. I'd been running on nothing but adrenaline, and my exhaustion took over. For the first time in a week, I slept.