Two weeks

 This was originally a Facebook post from November 9, 2019. Joan was two and a half weeks old.  I share this now in the hopes that someone experiencing the same thing will feel seen, supported and uplifted. Joan is now a happy and healthy 3 year old girl. 


Yesterday was a hard day. It was hard for Joan, and hard for her mama.

I woke up as usual, worked for a bit and then got myself ready for the day. I headed to the NICU from my boarder room at about 8:45. It’s a long walk and a bit of a maze, but I can do it in my sleep now.
I smiled hellos to the familiar front desk staff, janitor and charge nurse and then entered Pod C to kiss my baby girl. I stopped dead in my tracks. My little girl had been intubated. They were supposed to call me if there were any changes to her condition. I was totally speechless. Her day nurse came up beside me and asked, “Did you get our message?“ I had not. “That’s odd,” she said. “We left a message for you. We tried calling a couple of times but no one answered.”
In the rush, they had inadvertently called our home phone number. The kids didn’t recognize it so they didn’t pick it up. Jim was at work.
I felt sick and had to sit down. What had happened? Joan had experienced 15 fairly significant apnic events through the night, stopping breathing and requiring stimulation. They were getting worse. The team decided to intubate in order to give her a break.
I knew that this was probably coming. I knew about the “honeymoon phase” with so many preemies. I just wasn’t ready.
Still very sedated from the fentanyl and two other drugs they used, Joan began vomiting, so they decided to hold her feeds as well. I felt so helpless. Mid afternoon, she had a fairly major (inexplicable) oxygen desaturation that required a whole team of respiratory therapists. Again, I sat helplessly by.

I know these things aren’t major, not really. I know they’re doing the right things for her. I know she’s in the right place. I know that only what is meant to happen will happen. I’m still struggling. I know many have it worse than me.
I miss my husband. I miss my kids. I miss meals together. I miss my family and friends and home and work. I miss my dog. I miss normal things, like hot showers. I’ve spent almost two weeks covered with a rash of itchy hives in what now seems to be a side effect of the spinal tap. I’m healing from a brutal c-section, but I have to just keep going. I have a headache that won’t go away. I’m really exhausted, but sleep is elusive. I’m overwhelmed by people, but often feel alone. I don’t want to see people while craving company.
I’m thankful that I’m able to see her sweet little face a little bit better now, without the cpap mask on it. I’m thankful that I am still able to hold her for long periods each day. I’m thankful that I’m able to be here with her as she grows and gets strong. I’m thankful for an incredible husband who is so strong and capable and caring for our older children and running the household so that I don’t have to worry about any of it. I’m thankful that I have such an amazing network of people to lift me up and help me get through this. I am thankful for everyone who has prayed for Joan, for me, and for my family. Thankful for everyone who has fed my husband and children during these overwhelming weeks. I’m thankful for each and every person who has called, texted, emailed, messaged, dropped by, brought me meals, brought me fluffy socks and chocolate and magazines and tea and coffee... brought me a hug. I’m thankful that today was a better day.
This is very hard. And I’m starting to realize that I can just be honest and say that I really hate it. And that’s it’s OK to hate it; I don’t have to be perfect wonder woman who rolls with everything and doesn’t bat an eyelash.
I’m creating a Facebook page for Joan, which I’ll share in the comments below. You’re welcome to follow it if you’d like to see more pictures, and more updates, and hear more real and raw moments.
You can share this with other people who might also want to know about the page and follow it. I’m probably not going to share quite as much here.
You know where to find me.