3/24/15

milestone

St. Patrick's Day marked a year from Eloise's discharge from the NICU. I was glad to have the milestone because it made me review the year and take stock of the progress we have made. I am a private person on the whole, and this post is uncharacteristically personal. But I am writing it because of Danielle. She was one of Eloise's primary nurses at Utah Valley, and she became a dear friend. She and I had dinner together the other evening, and she asked me if I was writing any of this down for Eloise. I don't keep a proper journal, and this blog is the closest I've got. So I am really writing this blog for a future Eloise, and if I don't publish it here, it won't be found. So...if you read on, keep that in mind.
Eloise coming home was an incredibly happy thing. But it was also completely crazy. She came home on oxygen, and a whole room full of equipment, like a suction machine, feeding pump, ambubag, an oxygen tank the size of the one that got Jaws in the end. I didn't get a lot of sleep. Eloise had never slept in a quiet, dark crib. The NICU is never dark, even at night, and never quiet. All those beeping alarms and chatter...oy. I would hear phantom alarms all the time for a month after she was discharged. Just recalling that sound sends a shiver up my spine.

My three girls at home missed me. They were cared for by so many other people and had to adapt to shifting, changing schedules. Sometimes I would promise a tearful Millie "I will be home to kiss you goodnight, sweetheart." And then I couldn't. Something would happen at the hospital, or I would sit in an hour of traffic on Foothill Drive trying to get to the freeway from Primary's. It was excruciating to feel desperate about my baby in the hospital, constantly worried about what has happening to her, and at the same time desperate to nurture my sweet daughters at home. How horrible is that?!

Coming home was a completely different trial. I was caring for Eloise all the time, and we weren't apart, which is what I wanted. But caring for her was (and still is) an absolutely Herculean task. There was rarely a week I didn't have to rescue Eloise from suffocating blue spells. At the beginning I was taking Eloise in for weekly dilations at the hospital, which required full anesthesia, and afterward she always had multiple blue spells. Supremely stressful.

I also had three little children at home. Twin four-year-olds and a three-year-old, and it felt like an impossible errand to be mother to all. It was a relief to be free of the NICU, but I missed certain people terribly. Feeling alone in caring for Eloise was a heavy burden, and now I didn't have a network of people helping me. I was home alone with four children all day, and Eloise never let up. If it wasn't a blue spell, she was gagging and wretching 2-3 times an hour on her own spit. Vomiting spit can oh-so easily turn into asphyxiation. I could not ignore one throw-up, one problem, one crying fit from that baby, not for anything else. I would have to let dinner burn. I would have to stop reading/talking/cuddling/teaching any of my other children to care for her, immediately.

Physically I was also going through so, so much. My pregnancy with Eloise was absolutely wretched, and I had to undergo several surgeries of my own to become whole and healthy again. I was taxed to the breaking point emotionally, physically and spiritually. My heart was broken, and I longed for things I could never have.

I remember standing at my sink, doing yet another load of dishes, cleaning a knife, and thinking...it could all be over so easily. I could call my mom, beg her to take the children somewhere, and leave a note...The monumental task of my life could just be finished, and so quickly. I longed for rest, and never felt like I had any at all, so instead I would imagine how wonderfully freeing death would be. An eternal rest from this world sounded delicious, and like the only way to escape.

There was only one thought strong enough to combat my darkest thoughts, and kept me from the edge. I couldn't tolerate the thought of another woman going prom dress shopping with my girls. I didn't want another woman hearing about their first dates, or traveling to France for their first time, or giving them advice on hair cuts. No one else could be their mother, because I'm the only one who can do it.

I slowly stopped spiraling downward. Things started to ease up. I wish I could say something like, "It was my religion that saved me - it was reading my scriptures." But it just wasn't. My religion is complicated for me, entwined with deep feelings of duty, guilt, anxiety, and pressure. Unlike say, Catholic Mass, the LDS Church expects a whole lotta participation. You are called on to talk, to teach, to serve, to work. I had nothing for it. Faith is another matter. Somehow through the hell of the last two years I managed to remain faithful.

I've been pinpointing the exact turning points for us, and it was surprisingly easy to do:

  • Eloise's Nissen Fundoplication last December. This is the single most important thing that has improved Eloise's quality of living. I finally felt like her life was worth living. She ceased to vomit every hour, day and night. She could move around without being plagued by reflux. Her surgeon, Dr. Downey, has been an incredibly vital support and advocate. I am very attached to him, and if it were up to me, he wouldn't be allowed to retire, ever.
  • Now that my body was finally mended, I was amazed at how fabulous living without pain was. I started running, and loved it. It felt so liberating, a small dose of freedom. I tried yoga, and I loved it even more. I started last August, and I haven't missed more than three days since. I also worked hard to lessen my appetite. For nearly 5 years I was either pregnant or nursing, and always HUNGRY. So I slowly made my portions and meals smaller and smaller. I have lost some 40 pounds. I am looking and feeling great these days. I fantasize about yoga retreats, and more than anything I'd love to build something like this in my backyard, a mini yoga studio. It also has infinite picnic possibilities!
  • When Eloise came home I had to surrender my sewing corner. We had to move in another bed in her room, so an adult could sleep with her every night. Trevor still sleeps up there. Anyway, for a year I have had no personal space that was mine. Not a single corner. I needed a space to sew, write, and read. The only space I could convert was the dormer upstairs, a three feet wide and two feet deep. A little determination and creative thinking et voila! I have a creative space. It has had an incredible impact on my happiness. I sewed a spring dress for myself last week, it turned out beautifully, and I chalk it all up to finally having a space of my own.
  • My twins started kindergarten. Future Josephine and Amelia, I love you more than anything, but it was an enormous relief when we had a daily schedule to keep. 
  • Learning. I have a voracious appetite for learning of all kinds. Art history is first, of course, but beyond that I'm interested in just about everything. Driving my children home from school everyday gives me about 40 minutes listening time, so I wear my earbuds. I listen to podcasts or history lectures while I do dishes. Any time I can squeeze in some learning, I make it happen. Thank heavens for the internet. My most recent favorite is a lecture series on the History of Food. Holy smokes, it is captivating! It adds so much understanding to specific eras in history.
I am so happy to say a year out, and we are all doing better. I feel like I'm finally living in part for myself and not exclusively for others, for the first time in a long time, and it feels good.

3 comments:

  1. I am so astounded by the concrete ways you have figured out how to not be swallowed up by it all. I'm so glad both you and Eloise are doing so much better physically, and hopefully some more medical miracles are in store for that sweet girl. Love you, Shelley!

    ReplyDelete
  2. I'm so happy to see a blog entry!! I texted your mom this week to make sure you were okay. :D This has been a gargantuan (is that the word I want?) ordeal. You are formidable. I like the French spelling of that word better, and that is they way I mean it, for what it's worth. You are also beautiful. :D :Love you!!

    ReplyDelete
  3. I'm so happy to see a blog entry!! I texted your mom this week to make sure you were okay. :D This has been a gargantuan (is that the word I want?) ordeal. You are formidable. I like the French spelling of that word better, and that is they way I mean it, for what it's worth. You are also beautiful. :D :Love you!!

    ReplyDelete