Though She Be But Little, She is Fierce

Before we agreed to try for a second baby, we thought long and hard about whether we wanted another one or not; we felt complete with just Lady A. Looking back, I can’t believe we even questioned it. Ever since she was born, there has always been something special about Sweet E. She has always had a way about her that is just soul-soothing. I describe her as the blessing I never knew I needed.

Sweet E needed physical touch; she loved to be held and still does. She gives the best hugs and kisses for no reason at all, hence the name, “Sweet E”. As an infant, when she would get herself worked up and upset, I would put my cheek against hers and whisper “shhhh” in her ear. The feel of my cheek to hers was just what she needed to calm down.

She was a normal, easy baby. Great eater, great sleeper, infectious laugh, killer smile, and one of the two prettiest little girls I had ever seen. She was (is) petite and delicate. With the exception of talking, she hit her milestones around the same time as her big sister did {which was always slightly “late” in regards to the average} so we were never really concerned about her. Even her teeth came in late; she didn’t get her first two until right before her first birthday. She was chatty with baby-babble but didn’t say any words. I wanted so desperately for her to call me “Mama” but had heard that many second-children start talking later than first children so we weren’t worried.

About 8 weeks or so before Sweet E turned one, we started to notice that her right eye would cross sometimes, primarily when it appeared that she was looking at things up close. It got progressively worse so on September 9, 2015 – one week before her birthday – Todd took her to the pediatrician to be checked out. Our pediatrician referred us to a local ophthalmologist who does pediatrics as well.  I immediately called to make an appointment which ended up being on September 16th – her first birthday. Before that day arrived, however, something strange happened. Before putting Sweet E to bed for her nap on Saturday, September 12th – four days before her birthday – Sweet E started to have what looked like hemifacial spasms on the right side of her face. I had never seen her do it before and didn’t say anything to my husband about it right away. I put her down for a nap, slightly concerned but optimistic that it was nothing.

That night, I was putting Sweet E to bed for the evening later than usual. She was exhausted but smiling. The spasms started again, however. Still on the right side. This time I decided to video-record it on my iPhone. I flipped the camera around on selfie-mode so that she could see herself and smile and laugh. I didn’t know it at the time but taking that video is literally the best decision of our entire lives.

I left her room after she fell asleep – very concerned – and sat in the bathroom on the other side of her wall, Googling. At this point I was borderline freaking out (silently). Todd came over to see what I was doing. I showed him the video and remember saying, “Something is wrong with our baby” with a lump in my throat and tears in my eyes. Of course, nothing I found on Google sounded promising. The options for causes were: head trauma, Tourette’s, nerve compression {that is only typical in the elderly and could be solved by surgery}, or a brain tumor. We went to bed that night very worried and I remember thinking of every possible cause; she had hit her head pretty hard at my mom’s house not too long before so I thought maybe it was that.  Needless to say, we watched her like a hawk the next day but she didn’t do it again. We agreed to talk to the ophthalmologist about it at her appointment that was 3 days away.

We never saw her do it again… until later.

September 16th came and Sweet E and I spent the day together. Since it was her first birthday, I had already planned to take the day off so that I could spend it with her. Her ophthalmologist appointment was that morning and we made sure to arrive on the time. Naturally, she was an angel at the appointment – she has always been such a good baby. That said, I wasn’t a fan of the doctor.  I had seen him once before for myself and was quickly reminded why I never went back. I felt rushed. He was dismissive and borderline condescending, I felt. He looked at Sweet E’s eyes, told me she was far-sighted, and wrote her a prescription for glasses (+3.00). I told him about the facial spasms once but I don’t think he was listening. I mentioned it again and even told him I had a video but I still don’t think he cared. Not being satisfied, I called the Emory Eye Center in Atlanta for a second opinion as soon as we got home. The first available appointment was the following Tuesday morning. We were leaving for vacation that day but knew we needed to do that as a priority first, so I booked it.

That night, still September 16th, we put our concerns aside and had pizza and cake to top off Sweet E’s birthday. She loved it.

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We had her big party with family and friends that Saturday, the 19th. It was such a fun day celebrating our sweet, precious baby. Because her nickname is Sweet E, the theme of her party was “How Sweet it is to Be One”.

The following Tuesday, the 22nd, was Sweet E’s second opinion appointment. Dr. Natalie Weil at the Emory Eye Center was great. Although Sweet E hated every minute of it and screamed and cried most of the time, Dr. Weil and her nurse were so thorough and so attentive. They diagnosed her as having accommodative esotropia which is fancy doctor-speak for “she crosses her eye in attempts to focus when she’s trying to see up close” and wrote her a prescription for +3.50 glasses (stronger than what the previous doctor wrote). I had mentioned the video I had to the nurse before we saw the doctor and at the end of the appointment, the doctor asked to see it. She watched it and felt pretty confident that the spams didn’t have anything to do with her vision but asked for me to email it to her so she could show some of her colleagues for their thoughts. She was calm and unconcerned but I am so glad she took the extra step to ask others.

Satisfied, we hit the road to head to Kiawah Island, SC, for a beach vacation with our girls and our friends. I wasn’t expecting to receive a call from Dr. Weil that afternoon so I missed it. By time I got her voicemail that said they “wanted to run some more tests”, the offices were closed for the day. Needless to say, that was the longest night ever but we still made it to the beach the next morning. It was Sweet E’s first time.

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Dr. Weil and I finally connected in the afternoon on Wednesday. She told me that they wanted Sweet E to have an MRI as soon as possible, that she was ordering one as “urgent” and that someone from the scheduling department from Children’s Healthcare of Atlanta (CHOA) would call me soon. On that call she told me the same possible causes that I had already read online and said that they “wanted to rule out a tumor.” So much for trying to relax on vacation, right? I spent the rest of our week trying to enjoy myself while also clinging to my phone waiting for the scheduling call and updating my pediatrician. CHOA finally called and after some misunderstanding around the urgency of it all, we got it scheduled for the following Tuesday, September 29, 2015.

We tried to be as normal as possible until then and took this picture the night before her MRI. I will always remember this as the day before our world changed.

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Tuesday came slowly. Parts of it are a blur and others are crystal clear. We arrived to CHOA way too early in the morning (I can’t remember the time) and went through the motions of the day. Sweet E had no idea where she was or what was going on and, even though she was hungry (she wasn’t allowed food past midnight), she was still my smiling, happy girl. The staff asked a lot of questions, got her IV-ed and wired up, and sedated her so she would be still for the MRI. Up to that point, that was the hardest part for me; she was alert in my arms one moment and completely limp the next. Seeing her laying on the table with an oxygen mask while they wheeled her back to the machine made me pretty emotional. I don’t like seeing my baby that way.

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We expected her to return in about 45 min-1 hour. I don’t remember who said it or when I heard it – whether it was that day or before – but someone said to me that if they saw “something crazy” we’d know right away. About 45 minutes in, a nurse popped her head in and told us that Sweet E was “doing great” and that she would be done soon. A few minutes later, her anesthesiologist popped in and told us the same thing. A few minutes after that, two doctors we had never seen before came into the room wearing scrubs. The last thing you want to see during a child’s MRI is a doctor.

My heart sank.

Dr. Sawvel introduced himself as a fellow from neurosurgery. He informed us that Sweet E had a tumor on her brain’s cerebellum. The cerebellum controls motor skills and speech, among other things. Unlike my husband (who didn’t say anything until later), I had never even considered a tumor to be an option up to that point . We’re just here to rule out a tumor, I thought. Not my baby, I thought.

Have you ever had that feeling where you’re floating outside of your body and watching everything happen as if you were a third party to the conversation? That’s how it was for me. Just surreal. I was very “with it” during the conversation, though. Alert and attentive. We asked lots of questions and held it together, even though I heard the words emergencysurgery, oncologist, chemotherapy, and radiation. I realize that there is a healthy list of things parents never want to be told about their children but “your kid has a brain tumor” is in my Top 5. She is only a year old. We were having her party 10 days ago. The doctor asked what triggered us bringing her for an MRI and we showed him the video. He asked me to text it to him so we did. See, the place where her tumor was is not a place that would cause that to happen so they weren’t sure if it was related. We listened to him, agreed to surgery, and the doctors left. The second I heard the door click closed I lost it. I’m talking hysterical crying. The nurses brought me tissues and at some point a chaplain came and prayed with us. After a few minutes, once I got it all out, I pulled myself together and put my game-face on. Let’s do this.

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They finally wheeled Sweet E back in the room with us. The reason she was gone so long was because once they saw the tumor, they did an additional scan of her spine to ensure there weren’t others. There weren’t. Thank you, Jesus. We were taken to the neuro floor and admitted for surgery that would happen the next day. I left Sweet E at the hospital with Todd in hopes that she would nap so that I could pack a bag for myself and get some of her toys and formula to have in the hospital. At that point we weren’t sure how long we’d be there. I’ll never forget that Taylor Swift’s “Wildest Dreams” was playing on the radio. Everything just felt so surreal.

That evening, after I came back and Sweet E slept a little, we finally got to meet her surgeon, Dr. Joshua Chern. He showed us her MRI scan and told us that her tumor was just smaller than a ping pong ball. He told us exactly what he was going to do and how he felt that, from the scans, the tumor looked benign but that they would know more once he got in there and they were able to biopsy it. He felt very optimistic and so did we. He said something that led us to believe he was a Christian which made us feel even better. It’s important to note that after my aforementioned few minutes of hysterical crying, an overwhelming feeling of peace came over me. God was there. He was real and we could feel Him as though he was saying, “Hey, I’ve got this.” Call me naive, but while we knew cancer was realistic, it was never an option in my mind.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil. 4:7)

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I held Sweet E tight that night and watched her sleep. My mind was a jumble of thoughts. I struggled with knowing that on that night she was perfect and unscarred but that on the next day she wouldn’t be; that this was a life-defining moment for her. But, I was never afraid. God was with us and He was on it.

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Sweet E was taken back to surgery the next afternoon, on Wednesday, September 30th, around 1:00pm. They had given her a drug before they took her so we spent our last few minutes laughing at how loopy (drunk) and funny she was. What made it easier was that the nurse carried her back to the operating room in her arms rather than on a table.

We had lunch, we went back to the room to wait, and I was able to sleep a little bit. We got periodic phone calls letting us know that she was doing great and then finally, around 5:00pm, Dr. Chern came to tell us the best news – that he got it all and she was doing great. Thank you, Jesus. He still felt that it was benign based on initial appearance and the “freeze test” but that we would know for sure the following week. Sweet E needed to go to recovery for a little bit and we would get a call when we could see her. Due to a trauma with another patient, that call didn’t come until about 9:00. We were so anxious. She was puffy and motionless when we saw her and she was hooked up to so many machines. But, her eyes were as beautiful as they had always been and my baby was still so pretty.

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One of the things I love about our experience with her surgery was that the staff kept her hair in a Ziploc bag for us. After all, it was Sweet E’s first haircut. World class. Thank you, CHOA.

The next few days couldn’t have gone any better. She was in pain and fussy which was to be expected, but we snuggled the whole time and I got a huge dose of baby loving. It was during her hospital stay, though, that she developed a fear of nurses and doctors. To this day, you cannot even show her anything that even looks like medical equipment without her crying and thrashing around in protest. It’s so sad but understandable. It’s not their fault, though. It’s their job to poke and prod her to make sure she’s okay and manage her pain. But, you know what calmed her down? My cheek to her cheek. She needed my touch and I was happy to give it to her just like when she was a newborn.

Because Sweet E is a rockstar, we were released from the PICU to a regular room on the neuro floor the day after her surgery (Thursday). She got a little bit better everyday and after her follow-up MRI confirmed that Dr. Chern removed the whole tumor (yay!), she was discharged to go home on Saturday morning. Hallelujah.

We got home on Saturday afternoon and it was immediately evident that she was thrilled to be there. We put her on the floor to play with her toys (after showing A her scar and telling her she needed to be very careful with her and to not touch). It didn’t take but a few minutes for her to get on all-fours in an attempt to crawl. But, once she assumed the position, she realized motion wasn’t an option (her incision went down her neck so there’s no way she didn’t have muscle pain) and she started to cry. The very next morning, she was back to crawling around her bedroom and this time I cried (tears of joy). She smiled and laughed and although she wasn’t 100%, she was almost back to her normal self. Not too shabby for 4 days post-op. She’s my hero.

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The following week Todd and I took her to order her glasses (she still needed them, of course) and we were anxiously awaiting the call from Sweet E’s oncologist to tell us it wasn’t cancer. That call came on Wednesday afternoon and it was the best news ever. She told us that Sweet E’s tumor was a grade II atypical choroid plexus papilloma which basically just means it is a freak thing that was growing somewhat fast but wasn’t aggressive and they don’t anticipate a return. No chemo. No radiation. No cancer. Thank you, Jesus. Sweet E will undergo regular periodic MRI’s to ensure it doesn’t come back without us knowing, just to be safe. They were also not able to link the tumor with the facial spasms but at that point we didn’t care.

In an attempt to regain normalcy and move forward with life (from what I didn’t acknowledge then but realize now was a traumatic event for me) and since Sweet E was back to being herself (and she goes to my mom’s house, not daycare), I went back to work the next day. Over the next 3 weeks, poor Sweet E had 4 teeth come through simultaneously and had an ear infection while recovering from brain surgery. And you know what? She was amazing through all of it. I learned so much from her. She taught me about strength and joy and gratefulness. She’s my hero.

Sweet E’s facial spasms came back, however. In fact, they increased in frequency and intensity. We had hoped that they would subside once she got her glasses but they didn’t. So, on November 17th, she had an EEG that my pediatrician ordered to rule out seizures. They attached her head to a bunch of wires and read her brain waves. Of course, Sweet E was an amazing rockstar and made me so proud.

The scans were clear. No seizures. So, her spasms were still a mystery.

At the same appointment where my pediatrician ordered the EEG, she also ordered a physical therapy evaluation for Sweet E. At that point she was almost 14 months old and still not walking or talking. We’ll never know if the reason for her being delayed was because of the tumor or just because but, given all she had been through, we wanted some early intervention. Her PT evaluation was in December and I shed a joyful tear of relief when they told me she qualified and would have her first session in January. I wanted nothing more than for my baby to get caught up.

Also in January, on the 23rd, she had her first follow-up MRI.

On January 27th we learned that her MRI was all clear! No signs of re-growth and no signs of nerve compression (the other possible cause for hemifacial spasms). The best news. Her brain hasn’t completely closed in the space where her tumor was yet, and it may never. But, that’s okay because when she’s older I’ll get to make “black hole” jokes about her brain when she does something foolish or stupid, as all teenagers do.

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During her second physical therapy session (on my birthday, January 28th), Sweet E took a total of 22 unassisted steps and I couldn’t have been more proud. She really “turned a corner” the last weekend in February and became a bona fide walker. On March 6th she even climbed the stairs by herself. Have I mentioned that she’s my hero?

On March 14, Sweet E saw a pediatric neuro-ophthalmologist who feels optimistic that her spams were related to her tumor and isn’t concerned. Because of her history, though, he is going to start following her case going forward. She will see him again in August. On May 30th (Memorial Day), she finally called me Mama! It was the sweetest sound to my ears and I was seriously so overjoyed.

After completing 6 months of PT, Sweet E will graduate this week! She’s walking, running, and climbing like a pro. She had a speech evaluation on June 10th and will start speech therapy in a couple weeks to “give her a push” and get her talking more.

Oh, and her facial spasms have stopped! It’s like God used them as a map just to direct us to her brain. Had I never taken that video, had I never asked for a second opinion, had Dr. Weil not taken me seriously, we wouldn’t have caught it when we did and the outcome could have been significantly different. I am so grateful for the mama-gut that the Lord blessed me with and for my wonderful husband whose dad-gut said the same thing. We wouldn’t have made it through this without God’s guidance, peace, and comfort.

Mamas (and Daddies), always trust your gut. Always.

And, if your kid is showing symptoms of something that doesn’t appear normal, record it. Without that video, no one would have ever realized the severity – trying to describe things like that is next to impossible. Dr. Chern tells us that he still has it on his phone and that she is one of his favorite patients.

Although her hair covers her scar, when I see it I am/always will be reminded that my baby is amazing. She’s a survivor. Her life is a miracle. She’s an inspiration. She’s my inspiration.

I think about her surgery almost every single day and I can’t help but be grateful that her story has had the best possible outcome so far and that there are so many other mamas and babies who can’t say the same thing. I will never understand why God chose Sweet E but I will never stop being thankful. Thank you, Jesus. God has a plan for my little girl and I can’t wait to see what it is.

Before all of this, I used to look at her in all her baby-glory and wish that she would never grow up. I’m now so thankful that she’ll get to.

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Sweet E’s next MRI is scheduled for July 23rd.
Please join us in praying for the best possible results.

Update: Read her one year post-op update here.

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35 Comments

  1. September 12, 2016 / 9:47 pm

    Wow, wow, wow. What and incredible testimony! God is so faithful and now she is about to be two! Thank you Jesus!

    • September 12, 2016 / 11:31 pm

      Yes! We’re so thankful! Thanks for reading!! xo

  2. moderngingermom
    August 30, 2016 / 3:42 pm

    Your story literally brought tears to my eyes. Little E is such a strong little girl and you are an amazing mother! You’re so right about trusting your gut when it comes to your kids. Navigating the healthcare system can be a nightmare but when it involves our little ones it’s that much harder. Kudos to you and little E for being so brave.

    • August 30, 2016 / 3:44 pm

      Thank you SO much for reading what I know is a very long story and for taking even more time to say such sweet words! I appreciate your kindness and support. My Sweet E is an awesome little person and I am in awe of her every day!

  3. July 23, 2016 / 3:43 pm

    Such an amazing story!! I can’t imagine what you went through as a mother, I would have been hysterical hearing that news as well!! I’m so glad it all went well and that she is thriving! Thank you for sharing your story

    • July 24, 2016 / 8:07 pm

      Thank you for reading and for your kind and thoughtful words! It was hard to hear but then we just dealt with it, you know? It’s amazing how much clarity you have when there’s only one option for action. Thanks again!

  4. July 20, 2016 / 11:24 am

    What an amazing little girl you have there. So brave and strong and this experience will just make her even more special and resilient! Great job Mama with that gut instinct of yours!

    • July 20, 2016 / 11:24 am

      Thank you so much for your kindess! The mama gut is a powerful thing and my little one is an amazing kid. Thank you!

  5. July 19, 2016 / 5:02 pm

    What an amazing story. Your baby girl is so strong! I’m so glad she’s doing well. I’m seriously holding back tears. This made me emotional! You are such a strong mama to go through all of that! Hugs!

    • July 19, 2016 / 10:29 pm

      Thank you, Lucy! She’s pretty amazing, it’s true!

  6. June 17, 2016 / 9:17 am

    Girl, I am sitting here bawling like a baby. WHEW. What an emotional roller coaster for you all, I just can’t even imagine (actually, I can and that’s why I’m a WRECK). Bless you all. So many virtual hugs are coming your way mama. You’re amazing, and so is your little warrior princess. xo

  7. Sarah @ Foxy's Domestic Side
    June 17, 2016 / 12:22 am

    Oh my goodness! What a story, I am so thankful that everything turned out okay and Sweet E is such a trooper! Thank you for sharing your story, I cannot even imagine what it’s been like for you guys. You are so strong, you amaze me and Sweet E, wow she is a fighter! She is going to do great things!

  8. June 15, 2016 / 2:04 pm

    Praise the Lord your daughter is doing well. Your faith and courage throughout the entire process is admirable! I 100% agree with you about always trusting your gut. I also loved what you said about God using her facial spasms as a map to lead to her brain. That is a God thing for sure. Your daughter, you, and your family will be in my prayers for sure!

  9. Sandra Yakubic
    June 14, 2016 / 10:02 pm

    Oh Shannon, I am in tears! She is truly a hero! My daughter is so close in age to her, and her name also starts with an E, and as I mentioned to you once before, her entrance to the world was a scary one. I also refer to her as my little “super girl” So while we have not gone through nearly as much as you and your Sweet E, your story really hits home. My Emerson and I will definitely be keeping your Sweet E in our bedtime prayers! ❤️

  10. June 14, 2016 / 9:08 am

    I am so inspired by your sweet baby, you and your family! Sending lots of prayers and good thoughts your way for continued good news, mama! xo
    Lisa @mommylifestyled

  11. June 14, 2016 / 12:34 am

    You’re an incredibly strong Mama, Shannon! I’m so happy that Sweet E is healthy and healed! Praise God for His protection and comfort for your family. Melodie asked me to pray when you all were going through this and I’m glad to understand now exactly how God answered our prayers! 😍

    • June 14, 2016 / 7:54 am

      Thank you so much, Maryn! And thank you for your prayers! I am 100% confident that the peace we felt about all of it was because of people like you who were petitioning with God for us. xo

  12. June 13, 2016 / 6:53 pm

    I just read this entire post, clutching my sleepy toddler anxiously, all the while, silently praying to hit the happy ending. What a helpless feeling to know your child needs help but not to know what exactly that help is or if the prescribed help will work! I’m beyond overjoyed that your little lady is doing beautifully! God is good!

    • June 14, 2016 / 7:55 am

      Thank you, Shawn! It was a surreal experience for sure but truly the best outcome of a crazy situation. Hold that sweet boy tight and always trust your gut! Thanks for reading and for the kind words! xo

  13. Heather M.
    June 13, 2016 / 5:44 pm

    It’s great to know that good news for Sweet E keeps rolling in! Her story has just begun! 💖💖

    Looking back on trauma can be so odd. And numbing. And surreal. And so distant, yet so close. And painful, yet soothing. Bllllaaaarrrggghhhhh.

    That mama (and daddy) gut is the best. Might not make sense at the time, but looking back on decisions that were made while listening to it, it always feels right.

  14. June 13, 2016 / 3:23 pm

    Wow, that’s quite an ordeal! I teared up reading it. I can’t imagine what it was like for you to live through that. I’m so glad your little girl is recovered and thriving!

    • June 13, 2016 / 4:26 pm

      Thank you so much, Laura! I’m amazed by her every single day. I feel like it’s more traumatic looking back on it now than it was back then. While it was happening we were just rolling with it, confident everything would be okay. Thanks for the kind words!

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