Tuesday, March 24, 2015

Gracie's Surgery Story

Gracie's Surgery Story

            This week will mark the one year anniversary of Gracie's surgery. I feel like so much has happened since then, Gracie got a sister, had her 4th birthday and took her first trip to Minnesota. It's hard to reflect back on a year ago knowing how scared and anxious I was. Thankfully she is healthy and happy today! Many people have asked me about her surgery and condition over the past four years - and what better platform to share it on?

          Looking at Gracie she appears to be your everyday 4 year old - full of energy, enthusiasm and imagination! This girl is always on the go! You wouldn’t guess she was born with multicystic dysplastic kidney disease, meaning only one of her kidneys was functional. 20wks into my pregnancy my biggest concern was what gender the baby would be. I didn’t imagine they would find any flaw during that 20wk ultrasound. Half a dozen ultrasounds later and things still didn’t look quite right. Baby girl Gracie was born in November 2010. Since then a lot of people have asked her asked me about her condition. A month or so after she was born she saw a kidney specialist at Seattle Children’s Hospital in Seattle, WA. Lots of people live perfectly normal lives with one functioning kidney – but we found out that Gracie’s one kidney was in danger. Gracie also had a condition known at ureter reflux, meaning her bladder did not empty completely and this condition leads to frequent bladder infections. Bladder infections put the kidneys at risk and her doctors did not want to risk losing any function in her one kidney. Gracie was followed closely by her specialists and we traveled 2hrs south to Seattle every couple months for kidney ultrasounds and to check on her condition. She was also put on daily antibiotics to prevent infections that could threaten her kidney function.

Gracie's ultrasound at SCH 2014

                Surgery day was a whirlwind. My Mom headed with us to the hospital. Gracie was already being a trooper, she only complained about being hungry a handful of times. It’s hard when you're three years old and don’t get to eat breakfast the morning before your surgery! There are so many things I wish I would have known or did before surgery day arrived. To see how we prepared Gracie for surgery see my next blog post: Prepping Your Toddler for Surgery. When we got to the hospital we checked in with security and got our special hospital badges. I love that the hospital doesn't let random people roam the halls. After that Gracie got checked in and we colored pictures for the receptionist until her name was called. It's hard for me to recall every last detail of that day because it feels like such a blur. 

Gracie & Mommy before surgery

                 We were brought back to an area of the hospital where Gracie got dressed in her hospital gown and socks. Each dressing room was enclosed by windows with curtains and I remember it felt like we were zoo animals behind the glass wall. Gracie even pretended she was a monkey jumping up and down when the nurses would walk by, she always finds a way to have fun. Speaking of the nurses - they were amazing! They answered all our questions and made us feel comfortable in a very uncomfortable situation. Gracie liked them too but mostly because they were giving her tons of stickers for her growing collection. After what felt like forever the nurse came in with a stack of scrubs for me so that I could walk with Gracie to the surgery room. Gracie kissed her Granny goodbye and we headed down the hallway. In movies you always seen stark white walls in hospitals but the halls here were filled with whimsical images that make the circumstances not so scary. Gracie was excited to jump on the bed and put on the anesthesia mask. Her grandpa uses a breathing machine at night that has a mask and she was excited to be just like Pa! The staff let her pick a flavor to breathe in and she got to paint the inside of the mask with strawberry scent. I told her I loved her at least 100 times, kissed her head and stroked her hair while she breathed in the strawberry scent and fell asleep. 

            Thank God my Mom was able to be there with us because I completely lost it. My Mom was comforting and helped with my nerves. I know we were blessed this was Gracie's only medical obstacle and I struggled with guilt about being worried and nervous about the surgery knowing it could be worse. Through prayer and through talking with my Mom, I realized sadness and concern about any type of surgery is part of being a parent of a child with any type of medical problem no matter the degree of the problem. My Mom made sure I took care of myself, we had lunch and drank some coffee knowing we were in for a long day ahead.

Gracie's recovery room

            We waited and waited. Then we waited some more. I met with the surgeon after what felt like forever and received the news that Gracie did well during the surgery and was being transferred to her hospital room. Gracie's first round of anesthesia ended with her throwing red popsicle all over the walls making the room look like an episode of CSI. I was expecting the worst when she woke up from anesthesia this time around. To my surprise she was mostly groggy and hungry and in pain. Gracie was so happy when the nurse agreed to get her a pink popsicle to match her new Pink Pony stuffed animal. The sweet nurse brought a popsicle and Gracie immediately broke down saying "This popsicle is RED not PINK!" Granny saved the day by telling Gracie "Let's not make fun of the nurse because she doesn't know her colors yet." A little humor helped us avoid painting the walls with popsicle a second time.

            The rest of that day was filled with nurses and doctors coming in and out, taking vital signs and giving medicine. She struggled with pain and some bladder spasms. Sleeping in a hospital is not easy. The nurses are in your room and taking blood pressure and asking questions every few hours. I know they were taking good care of my girl but at 5months preggo I was already having a hard time sleeping without the added interruption. Oh well, anything for my sweet Gracie girl. In the morning Gracie was ready to be on her feet. She was over watching movies on the giant TV, her new books were no longer exciting and the new teddy bear was only fun for a few hours. 

             Gracie had one visitor while in the hospital because I didn't want her to be overwhelmed with guests. Lucky for us Auntie Anna brought some new coloring and sticker books. Gracie was having a moment when Auntie Anna arrived - when she opened the books she tossed them aside exclaiming "This isn't a real present!" I was shocked at the reaction. The always understanding Auntie Anna just set them to the side and distracted Gracie in other ways. I am thankful she was able to visit in the hospital, it gave me comfort to see a familiar face, not to mention a little break from entertaining a 3yr old. 

             We stayed three days in the hospital before we were discharged. Parents that have to stay for weeks and months at a time endure so much and I truly admire them. We packed up our things and headed home to finish Gracie's recovery. The doctor had told me she would heal quickly and be back to herself in no time. I guess I didn't realize how soon that would be. That whole weekend after her surgery I spent all my time telling her to slow down and take it easy. 

            It is so crazy that all these events took place exactly one year ago. No more daily antibiotics. No more worry, no more stress and her scar is fading more and more by the day. Next week we have our one year follow up and our last appointment with Gracie's doctors at Seattle Children's Hospital before our move to Florida. She still needs yearly checkups with specialists but I think we have come out on top! I am beyond thankful for the awesome staff at Seattle Children's that made our stay so positive. I thank God for Gracie's health every single day and can't wait to experience more adventures with my sweet girl. 

           Check out my post on everything I wish I knew before her surgery and how to help your toddler prepare for their upcoming surgery here - Helping Your Child Prepare for Surgery


  1. Having met you guys after Gracie's surgery, I never knew she was sick. She's doing so great! This story brought tears to my eyes as I remembered the one surgery Emily had (at less than a year old). It's truly one of the hardest things to go through as a parent...but we both now have healthy, beautiful daughters.
    PS....Emily misses her friend.

  2. Thanks Tammy! It's hard for me to believe she had all this going on too! The girl never skipped a beat. Gracie misses Emily too!!