a guest post near and dear to my heart

My bestest friend, Heather, has the second-most amazing daughter in the whole wide world. When Evi was a very itty bitty newborn she needed some help from Children’s Hospital. Children’s Hospital earned a permanent place in Heather’s heart, and now mine. Heather is hosting a virtual race to raise money for St. Judes and I asked her to write a blog post.
Please read and help out in any way you can! My daughter and I will be virtually racing very soon, after we train a bit!
So, without further ado, please meet Miss Evi Ruth, the coolest five year old I know!
The scariest moment of my entire life was the handful of seconds between Evi’s birth and the moment she cried. The most amazing was that sound, her willful protest of all things bright and cold and loud and weird. Until the moment we actually DID bring her home, I wasn’t sure we ever would. And then there we were, new parents to a real live newborn with all of her amazingness and crazy new things. New sounds, new smells, new routines.
She was easy from the get-go…sleeping six hours her first night. She smiled a lot, laughed, cuddled. And then all of a sudden she was three weeks old and she wouldn’t stop throwing up. It was acid reflux, the doctors assured, sending us home with medicine. It wasn’t, we insisted, reappearing in their office with specific measurements and distances to accurately describe her impressive projectile output. We brought pictures of the laundry we’d done that week. We described everything in ridiculous, measured, scientific detail.
In the end, I resorted to Dr. Google. I looked up symptoms obsessively, knowing in my heart of hearts that something bigger was wrong. She wasn’t getting better. She hated eating. She was losing weight. That was it, the final bit. I took her in to the doctor’s office one more time, armed with a rapidly shrinking infant and a gut feeling about the diagnosis.
They weighed her, and she’d lost fifteen ounces in a week. She wasn’t a big baby to begin with and she didn’t have fifteen ounces to spare. They were scared and confused, and I pulled out my hypothesis.
Pyloric stenosis. It means the valve (the pyloris) that takes food from your stomach to your intestines is growing out of sync with the rest of your body, growing too fast and closing up on itself so food can’t be digested.
I was prepared for the arguments. “It’s so rare,” they’d say. “It happens to boys,” they’d argue, and I’d push back. Except they didn’t argue. The incredible nurse practitioner listened to me, really listened. She called in the practice lead doctor. He confirmed that I just might be right, and sent me packing immediately to Children’s National Medical Center. I called my husband on the way home and he met us there. We called every grandparent, aunt, and uncle on the way to the hospital.

We sat in the waiting room, surrounded by seriously ill children and pale, worried parents. We waited maybe twenty minutes before we were taken back for the initial screening. The techs who worked with us were patient and gentle. They spoke clearly, used simple words, gave us easy directions, and asked questions with polite concern. They managed to convey the importance and urgency without making us feel in the way. They made it clear they cared about our baby and about us. She was admitted almost at once, and we were escorted to a temporary room until a permanent one could be made available for her. In the meantime, a hospital volunteer brought her a stuffed animal, now forever named Pink Bear, that had been hand sewn by other volunteers. It was teddy bear shaped, with no real features but a sweet floral pattern. Evi still loves it.


On the way to our room, they took us to get her an ultrasound, where they confirmed. Yes. It’s pyloric stenosis. We watched on the screen as what little was left in her belly swirled around, unable to make it past her too swollen pyloris. Yes, the doctors confirmed, she was slowly starving to death. I tried not to break down. I broke down anyway. I tried to hold on through waves of guilt that my sweet little girl was slowly starving. It would have killed her, they confirmed.


But it won’t,” they said, more firmly now, as they looked us right in the eye. “She’s here, and we can fix this. It’s actually a simple surgery. She’ll be able to go home in a day or two.”


They showed us to our room. They set her up in her baby cage. They scheduled her surgery for the next morning. Thankfully we weren’t going to sleep anyway, as they came in to check her vitals every few hours. She wasn’t allowed to eat, so they gave her her very firstpacifier. In the morning, the put her into the world’s tiniest pale orange hospital gown and it still swallowed her whole. They let me carry her down to the operating room and we got to sit with her while the doctor walked us through. The surgery would be laparoscopic, meaning it would be done through tiny cuts in her abdomen and wouldn’t require a big incision. It would be quick, he assured. When the nurse finally took her from my arms, she did it with such tenderness that I couldn’t help but be comforted. These people cared, deeply and completely.


They handed us a pager, and we headed to the hospital cafeteria. We hadn’t eaten since the previous lunch. We picked half-heartedly at sandwiches before giving up to pace restlessly down the hospital hallways. As we turned into the atrium to go make her a tie-dyed onesie, the pager buzzed. It’s possible we’ve never moved faster.


They took us to recovery, where our groggy little girl was just waking up. We spent one more night in the hospital, her tiny arm wrapped to hold in an IV for fluids, and she was intensely monitored. They checked her regularly and gave us the green light to try a tiny bit of food. She didn’t nurse well to begin with and would have been in no mood, so we gave her a 1oz bottle. She took it, and threw it up. The nurses were encouraging and comforting. “It’s fine,” they assured. They gave us a clear schedule of how much to feed her and when, and we kept trying. When a few hours passed and she kept food down, they cleared us to go home.


They sent us home with clear directions, a direct line to a doctor if anything unexpected happened, specifics on what to watch for, and heartfelt best wishes to never ever see us again. They scheduled a followup for two weeks out, and they waved goodbye.


We never did see them again, because she bounced back to vibrant life like the tiny miracle she is. In no time she was round and happy, and at her two week followup she surprised the doctor with her incredible health and wellbeing.


on the left: Evi just prior to surgery on the right: 1.5 weeks later

on the left: Evi just prior to surgery
on the right: 1.5 weeks later

She’s five now. FIVE. She’s about to start kindergarten. She’s happy and healthy and strong and silly. She’s full of spontaneous affection, random facts, and her fair share of tiny attitude. She runs and laughs, pouts and cries. She reads books, draws robots. She’s perfect. She’s thriving. Children’s National Medical Center saved her life, and I’m grateful for them every day. To help support the thousands of other children they work so hard to save every day, I’m organizing a virtual race. You can register here for one of the 26 spots left.


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