The story of Kailee
I gave birth to the most amazing little girl on August 31st, 2016 at 11:51 PM. She weighed 7 lbs 10.5 ounces and was 21 inches long. She was the most beautiful little thing and was absolutely perfect.
A few hours after she was born the nurses asked us if we wanted to take her to our room or for her to go to the nursery for a little bit so we could get some rest. The nurse said if we decide to rest she will bring her down at 6 AM to feed. We decided to let her go to the nursery so we could get some rest and good thing we made that choice.
The nurse came down at 6 AM like she said she would, but with no baby. She told me that our daughter looked a little pale on her oxygen was low and they needed to keep a close eye on her. The nurse seemed calm so I did not think it was a big deal. I just thought they were being precautious. She told me to come to the nursery at 7 to feed her then.
Once 7 came I went down to feed her however I was not prepared for what I was going to see. In my mind I thought she would still be all wrapped up in a blanket in a newborn hospital crib but when I went down there was was under a heated light, oxygen in her tiny little nose and cords everywhere and her hooked up to monitors. It took me back for a second.
After I fed my daughter, the nurse told me to come back down at 9 to feed again. I went back to my room, set my alarm clock for 9 and fell asleep. Right when my alarm went off at 9 I had a knock on the door. In walked a doctor and 4 or 5 residents. The doctor asked if he could wake up my husband and talk to us. The doctor sat down and said that they thought some fluid may have gotten into our daughters lungs from the birth and she was struggling with her breathing so he felt that she needed an X-ray. He said that when he got the X-ray back he thought it was done wrong however it was correct. He said that by the X-ray it shows that her organs are all on the opposite side. Our daughter right then and there was diagnosed with Situs Inversus Totalis.
Our world came crashing down just like that. We had no idea what this meant for our daughter and what her life was going to be like. Going an entire pregnancy then looking at a normal healthy baby on the outside and then getting news like this was mind boggling. All we knew is that we loved her more than anything else and just wanted her to be healthy.
Fast forward to late winter of 2018. Our daughter has had multiple ear infections, a constant cough, runny nose no matter the season, two ear tube surgeries, removal of the adenoids and now a biopsy of her cillia. We knew she had all the symptoms of Primary Ciliary Dyskinesia but part of us was hoping for the best and did not want it to be true. We waited weeks and weeks after her biopsy to finally get the results. The doctor called me and told me they were unable to give me the results over the phone and that I needed to come in. We went to the doctor that day. There was no way I was going to be able to wait.
My daughter was diagnosed with Primary Ciliary Dyskinesia on March 22nd 2018. It took me a while to process this news because I had no idea what this meant for her now. With the help of the Pulmonary doctors at Nationwide Children’s Hospital, they helped me have a better understanding of what PCD is and what we can do to help my daughter.
Our little girl is now on multiple medications, has to do Visio chest therapy with a vest machine, is about to start Cystic Fibrosis medication (Pulmozyme) and etc. This is just the beginning of the long road ahead and I know it may sound like a lot and get overwhelming at times but if you take one look at her you would never guess she has Situs Inversus Totalis or Primary Ciliary Dyskinesia. Just to get to hear her laugh, see her smile and watch her run while battling this disease every day shows how much of a little fighter she is and everyone else who struggles with this disease.
This is what makes our daughter a Rare Beauty.