Rose and the Wild Fox

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Posted on August 4, 2014 by Rose and the Wild Fox

A portrait of my daughter every day in 2014

There was extremely important vacuuming to be done tonight.

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She napped again today. She actually asked to take a nap. And she hates naps. When we left the doctors office on Wednesday I knew, I just KNEW it wasn’t just a virus. But her ears looked good, and her lungs sounded clear. So I didn’t insist on antibiotics. But I knew. Because I know her. And I know her health better than any doctor on the planet. I am not one of those people who thinks I know better than doctors. But this kid is complicated. And there are literally only a handful of doctors on the planet that really get her physiology. She goes from minor to awful so quickly. And I could feel it coming. She’s had low grade fevers on and off every day since then. And then she started complaining about her ear. And I still didn’t take her, because I didn’t want to expose her to more stuff at urgent care. But this morning it was clear she needed to go. And the second the NP looked in her ear and went “oof” I felt terrible for waiting. She’s on meds now, so hopefully she’s actually on her way to better now. I’ll never dismiss my gut as anxiety again. Because I always know. I feel it in my bones when she’s really sick. #ebsteinsanomaly #heartwarrior #heartmama

It’s Valentines Day, which is also the last day of #chdawarenessweek and I’ve been thinking a lot about it all. Why people don’t think about it as much, why it’s so underfunded, and on and on. I think it has a lot to do with the fact that it’s an invisible disease. These kids mostly look normal. Even right after surgery, it was only a week or so, where this kid looked bad. And even then, it was that bad. She had her sternum cracked open. Her heart stopped. And she looks great. If there’s anything I hope this week accomplishes, it’s that people out there start to view CHD’s with the same weight we view other childhood diseases. That people start to grasp how serious they are. These kids are fine. They’re doing great. They’re also not fine. But there’s so much more to the story than that, and that’s the story I’m trying to tell. #ebsteinsanomaly #heartwarrior #heartsister

This is the face of a child who hasn’t slept under the same roof as her mom in 6 days. The night before her sister was discharged, I finally felt comfortable leaving overnight and this kid was ecstatic. She missed her parents so much while her sister was in the hospital and her reaction when she heard I would be sleeping with her was priceless. She was so brave and the best little two year old we could possibly ask for through everything. She went through something too and it was very different, but also really difficult. She was also our source of hope and fun and really I don’t think recovery would have been the same without her. She was instrumental in the weeks that followed in rehabbing her sister. This little human is so strong and amazing, just like her big sister. #chdawarenessweek #ebsteinsanomaly #heartsister

Two years ago, a particularly nasty virus landed her inpatient with oxygen saturation’s in the 60’s. It was the second time it had happened to her that cold and flu season, and she only narrowly avoided the hospital the first time. After two full weeks of illness, broken sleep last night and her just clearly not feeling great I finally took her in today. And the doctor decided she was ok and sent her home. Which felt weird and great at the same time. And just a little too good to be true. She went back and forth between seeming fine today and also definitely not fine, I spent half of the day wishing I sent her to school and the other half glad I didn’t. I don’t know that I will ever stop worrying when she gets sick, but I’m hoping this is the illness that shows me just how amazing her surgery really was and she kicks its ass soon. #chdawarenessweek #ebsteinsanomaly #heartwarrior

This photo was taken after midnight. It was one of the hardest nights she had in the ICU. She was close to going home, and doing pretty well, but the rest of the ICU was in lights on mode. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Her oxygen levels had been lower than they hoped after surgery. The night before this photo was taken, the nurse tried doing a couple of breathing exercises and it wasn’t helping. She ordered a breathing treatment and a respiratory tech came in a few times over the course of the night to deliver it. Which meant she had to wake up and breathe it in and cough. It resulted in a lot of lost sleep. It still didn’t really help so the next morning they lowered her tolerances and decided it was ok. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ The night I took this photo things were calmer for her. She had some pain but we stayed ahead of it the best we could. The little boy right next to us wasn’t so lucky, and came very close to dying. I heard all of it through the sliding doors that make up some of the walls in the ICU at Mayo Clinic. An ICU filled with just kids who have CHD. Luckily I don’t think she understood what was happening but all of the commotion kept her awake as well. At one point I heard the doctor pleading “Come on kiddo don’t do this to me”. Once she feel asleep I finally put a pillow over my head because I just couldn’t handle it anymore. When we woke up the next day things had calmed down. He was still there. And he was stable. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I was so grateful it wasn’t our kid in that position this time. She had a few instances like that as an infant. I hope we never see nights like that again, but I also know it is a possibility in her lifetime. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Looking back, this was one of the times I saw a glimpse of what would unfold with her mental health in the months following surgery. I wonder if she absorbed more of what went on that night than she appeared to. That look on her face in this photo is all too familiar now. She’s aged years in the almost 10 months since her surgery. #ebsteinsanomaly #chdawarenessweek #heartwarrior

That’s my girl right after surgery. She had pacing wires going right into her heart. Three chest tubes. She was on a ventilator. She had every type of line you could think of, arterial, peripheral, and so on. For those not experienced with the fun of a family member in critical care, that means there were IV’s basically everywhere. Neck, groin, arms, hands. There were so many holes in her little body I don’t think I could count them. There were at least 11 medications going through any one of her numerous lines. In a way, we’re lucky, because her babyhood at least slightly prepared us for what that ICU room would look like. I didn’t cry when I saw her. I felt relief, because I was finally near her again. I could touch her, and whisper in her ear. Even when I had to hold her little hands down and tell her she was ok when she tried to pull that tube out of her mouth. Even when she spiked a fever that everyone said was normal, but still scared. It wasn’t until she woke up that I cried, and those were tears of joy. Make no mistake, I cried in the bathroom and when I was alone, and while she was in surgery. But seeing her like this, wasn’t what made me cry. I don’t share these images and stories for sympathy. I share them to help raise awareness. Congenital Heart Disease is so prevalent, but the awareness and funding is abysmal. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀❤️ Did you know that Congenital Heart Defects are 60x as prevalent as childhood cancer and twice as many children die from CHD’s than cancer, yet funding for childhood cancer research is 5 times higher? ❤️ 40,000 babies are born with CHD in the US every year alone ❤️ There is little or no known cause for most CHD’s, and there is no cure for any of them This is why I share our stories. Why I share these images. Because I hope that by the time she’s an adult, and able to advocate for herself, some of those statistics have changed. #chdawarenessweek #ebsteinsanomaly #heartwarrior

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