Three

My sweet, sassy baby is now three. Which I suppose means I should stop referring to her as a baby, but I know I won’t. She says I should keep calling her a baby, except when she’s a grown up.

She is so very full of life, and fire and magic. She’s brave and fearless and shy all at the same time. She told me that her favorite part about today was going to sleep, which is ironic since she’s refusing to go to bed tonight.

I love this child, more than I ever imagined I was capable of, and I’m so glad I get to call her mine.

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Seven

Today she is seven. We’re big on birthdays in this family, but after this year, this birthday feels even more important.

I love watching her grow. I sat her in my lap tonight and told her that when she was a baby, I wanted her to stay little forever, but that every year she’s proved that as she grows, she’s even better than the last. Spending time with her is genuinely wonderful, and so rewarding. Watching her grow into a kind, curious, creative person is such a gift.

I love being her mom, and I can’t wait to see who she becomes in her seventh year on this planet.

Nurses

I’ve been thinking a lot about nurses this week. It is nurses week after all. I’ve had a lot of reasons to be grateful to nurses. There was the time when I was pregnant and my husband spent four days hospitalized for an unexplained neurological episode, and then there was the nurse who handed me a breast pump before I even knew what was happening after my baby was whisked off to the NICU, and the PICU nurses who knew how to comfort the baby I couldn’t hold better than I could.

I work with nurses. Almost every one of my coworkers is a nurse. But the past two weeks renewed my deep respect and love for the women and men that make up the profession.

The first nurse we saw after surgery made waiting for the surgeon to tell us how things went with our child’s heart surgery seem normal. Later she advocated for my child, who clearly needed more sedation, and ran out to get a doctor demanding propofol when she kept waking up while still intubated. Our second nurse, watched our girl intently while we got some much needed rest. The third nurse we met, helped us plan to get her extubated, let us know how difficult it would be during the time which she was awake, but still on the ventilator. She helped when she vomited, got her up for the first time, carefully combed out and braided her hair after two days of sweat and tangles. She made plans for keeping her pain and nausea at bay. She helped her use the bathroom. Her hands, and four other pairs of nurses hands, helped her walk for the very first time. Her nurses talked with me, they recognized my anxiety, explained to me what I needed to know when I asked question after question. They asked about my girls, they told me about their kids. They made it feel more normal. Her next nurse brought us her beads of courage. Talked to me about what would happen at discharge, about incision care. Her nurses taught me how to pick her up without hurting her. They taught me how to clean her wounds. They showed me when she was no longer a high priority patient and I could do most of her care myself. They rallied when other patients in the ICU were crashing and desperately needed more help. They helped her feel less afraid and let her know it was ok to cry and scream as they removed lines and chest tubes. They called her Wonder Woman and Spitfire and Super Girl. They cheered for her daily.

Her nurses literally kept her alive. Just like when she was a baby. Yes there were doctors, and those doctors have so much knowledge, but the nurses, they are the ones monitoring, the ones recognizing when there’s a problem and making a decision based on that information.

I wish I could do something for those nurses, to let them know how much they do. To show them how appreciated they are. That what they do matters, every day, so very much. That their actions, are equally as important as the surgery itself, in saving her life.

So happy nurses week, to those nurses, and all nurses who go above and beyond just to care for those who need help the most. You are amazing.

Home

I realized I never updated with her progress in this space. She was discharged six days post op, after which we spent another four days in Rochester. She slowly returned to herself, and now that we’re back home she almost seems like she’s back to 100%. There’s still bruising, and incisions to care for, there’s fitful sleep and pain in the morning. But there’s also her humor and smile, her desire to see her friends and those she loves most, and a deep need to be completely healed. I’m so amazed by her strength and feel so very lucky that she’s ours every day.

Surgery Updates

Dear sweet supporters of my girl,

I’ve had a lot of questions about what kind of surgery our girl actually had, or what her diagnosis is, so I thought I would share. You can see some of my previous posts about her heart here, here, and here.

The procedure she actually had was a complete repair of Ebstein’s anomaly, by modified Cone technique with total valve repair, right reduction atrialplasty and subtotal closure of her atrial septal defect. In plain language that means they created a valve she didn’t have before using her own tissue, partially closed the hole in her heart and surgically reduced the size of her heart. You can see the size difference in her X-ray images pretty clearly.

Her echo’s look completely different now too. This doesn’t mean her heart is fixed, her heart will never be “normal”. And she might require further surgeries. Right now she has a lot of healing left to do, her right ventricle is performing relatively poorly, as it’s never really had to function before. It will likely take a few months to heal and remottle before we really see the full impact her surgery has had.

Here’s some info on the Cone Procedure from Mayo Clinic:

  • This video shows a quick animated overview.
  • This one is a video of an actual cone surgery, so skip it if you’re squeamish.
  • PBS aired a documentary last fall about the Mayo Clinic that was pretty cool. If you can find it on some day, definitely watch it. There’s a section about a young woman with Ebstein’s anomaly as well, and scenes from the operating room with our surgeon.

I’ve posted most of my updates on Instagram, but in case you’ve missed it, she’s doing really well. She’s making tons of progress everyday, and likely graduating to the step down unit tomorrow.

The First Step

This girl took the first big step in her heart journey today. She had a cardiac catheterization, which involved an electrophysiology study. In non technical terms, that means they used tubes and wires to check out the electrical pathways and conduction in her heart.

She did amazing. She was so much calmer than I expected before the procedure. We gave her a new sketch book and markers and she got lost in her own world of art.

She threw them a little curve ball during the procedure, it turns out she has one more little anomaly, that being that she doesn’t have venous access to her heart through her legs. Which basically means the veins from her groin that they usually use, don’t actually travel all the way to her heart in the way they’d expect. So they had to go in through her neck to do the procedure. The plan was to track down any accessory pathways, and get rid of them, but she didn’t end up having any so in a way we got lucky.

She’s home now. Resting, albeit somewhat uncomfortably. Slowly getting back to herself. She’s supposed to be back to normal by the weekend. She gets to come off one of her medications now too.

She was so brave, and did so well. I could not be more proud of her. It gave us a small glimpse of what to expect when she has her big surgery next month. It’s an experience I’m dreading, but plan to embrace and face with as much courage as she showed today.

I can do hard things. Because she has to do hard things. That mantra will be running through my head for the foreseeable future.

We can do hard things.

The Night Bakery, no more

Rose and the wild fox announcement photo.jpg

This space has felt mislabeled to me for quite some time now.  It’s pretty clear I don’t post recipes here any longer.  So it felt like time for a change.  I know when it comes time for surgery that there will likely be many people who want updates along the way, and getting texts or messages or emails asking for them sounds like a lot.  So I think this space will be where I provide those updates.  And it felt right to change the name ahead of that timing.  So here it is, Rose and the Wild Fox.  A space with loads of possibilities and new directions.

52/52

A portrait of sleep in my family every week in 2018

I somehow got off on my numbering this year. Life with two kids I guess. I realized today that although I completed this project, it wasn’t exactly what I set out to do. I was hoping to use my actual camera more often and do some longer exposures. In a way I’d love to leave it set up and make the same photograph every day or every week. But I’d need to somehow remember to do that, and frankly my brain, and my life, are just too full.

I’ve decided for the first time in six years not to do a year long project in 2019. I had wanted to do a 365, but knowing what this next year holds for us it just doesn’t feel realistic. I do plan to share photos here, and hope to make them often throughout the year. Maybe 2019 will be the year I repurpose this space, as the name doesn’t feel as fitting anymore. But in a way it feels sort of freeing, to not have a weekly task to hold myself to. I’m hopeful it will make my images more intentional, and less of a chore. Here’s to starting the new year without any goals, and just letting life unfold.