Meet July Mighty Bee Kinsley, mom Katie and dad Jeffrey. Kinsley was in the NICU for 7.5 months and has proven to be quite the little fighter. Katie shares her story with Bee Mighty.
Let’s start from the beginning, can you tell us how you learned you were pregnant and your initial reaction?
Jeffrey told me I was pregnant, I didn’t agree but took a test anyway and it came back positive. We were beyond excited to start our family because we didn’t think having kids would be a possibility.
When did you find out that things with your pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?
I failed my one hour sugar test because of medicine I was taking, so they put me on a diet plan eating every hour and half checking my blood sugar. Even put me on medicine until my blood sugar dropped to 40 after eating. Then I passed the three hour test. I had multiple UTIs and two weeks before Kinsley was born had a kidney infection. She was much smaller than supposed to be at her 20 week anatomy but had no idea we would be in the NICU.
Share what you are comfortable with about the delivery of your baby.
I had placenta abruption so I was taking everything from her but not giving her anything. She had stopped moving the night before and I even had labor pains. The next morning I went in to get checked and her heart rate was low and during a 30 minute non stress test she didn’t move once so that’s when the decision was made to deliver. When in the OR her heart rate dropped to 60 so it became more of an emergency. They also told us that they weren’t sure if she was going to make it so the first few weeks were incredibly touch and go.
When did you get to hold your baby for the first time?
When she was 10 days old with lots of help from nurses transferring her from her isolet bed to us.
I know leaving the hospital without my baby was very hard especially since it seems everyone around me was leaving with their children what was it like for you when you got discharged?
I was in the hospital for 7 days after delivery because of pain. Not only was leaving her in the hospital the hardest thing we’ve ever done but I also felt embarrassed because I was inpatient so long and didn’t get to leave with our baby. Especially when the transport lady kept asking where our baby was and if we were stopping to get her on the way out. We also felt jealous of seeing so many families leave with their babies and we didn’t know when we were getting to take her home.
What was the biggest challenge that you had to face with your baby while in the NICU?
Not being able to hold her and do the “normal” newborn things with all her wires and tubes attached. The first few months were also filled with hurdle after hurdle. She had countless transfusions, pneumonia twice, pick lines, ORSA, rhinovirus, cracked rib and multiple other things. We always would freak out anytime our phones would go off. We weren’t sure if she was being bagged again or what was going on when the phone would ring so that was always tough.
I know you had to leave the NICU on some extra equipment and it makes for having anyone else help hard since they might not be trained. How have you handled leaving Kinsley with another person?
It has taken a while but we have a day nurse that we completely trust to take care of Kinsley. It took me several weeks, maybe even a month or so to go back to work for a few hours while she was with Kinsley. It’s not easy.
What were the first days like having everyone home under the same roof, any pets that had to get used to a new addition?
It was extremely hard. I remember sitting in the living room crying wondering how in the world I was going to take care of such a medically complex child, hoping we didn’t make a wrong decision. The dogs adjusted well to Kinsley because we always let them smell her clothes when we did her laundry.
Did you have a lot of fears or anxieties regarding germs once you brought your baby home?
I kind of did. We had hand sanitizer all over and used so many Clorox wipes. Jeffrey definitely did. Kinsley couldn’t be touched without cleaning your hands first.
What does a typical day with your baby look like now?
Waking up. Doing trach Care and getting breakfast. Then a morning nap and lunch, playing and dinner, then trach care/bath and bedtime snack and bed. With playing and interacting in between.
Any advice you would give another family going through the NICU? Anything that really helped you get through the experience?
Take lots of pictures and write a journal. I still keep a journal and we brought her home at 7.5 months old in January. I write everything down with hopes that she will one day want to know about all this and it’s a way to cope for me and reflect on the week. Also hold on to the good things that happen. They tell you it’s a roller coaster ride and it is for sure that. There are times where you think you’ll never hear good news again so holding onto the good news that you get is a must.