This is Our Normal

We welcome Kenzie’s family today to share their story.

Our beautiful daughter, Kenzie Caitlyn, was born 5 days before our scheduled C-section, on May 22nd, 2015. She weighed 4lbs, 5oz and was 17inches long. Her story began when we found out we were pregnant. Getting pregnant as quickly as we did was a miracle in itself, as Jessica had been told for years that, because of her Lupus, it would be harder for her to get pregnant. At our first appointment, Jessica tested positive for SSA & SSB antibodies (can be found in Lupus patients) that can pass through the uterus to the fetus and have a VERY slight chance of causing Fetal Heart Block. We were told there was LESS THAN 2% chance of this happening, so we left the doctor’s office that day with confidence that it would not happen to us.

After that appointment, everything seemed to be going good and Jessica started going to weekly ultrasounds to check baby’s heart at 16 weeks. That little oomph of excitement we got to have all changed in January 2015. Our lives were flipped upside down at our 20-week appointment. Our baby was diagnosed with Complete Fetal Heart Block. This type of Fetal Heart Block is very rare and can only be treated with a permanent pacemaker. All we could do was hope and pray that Kenzie had the fight in her to make it through on her own until birth. Every single day after that appointment felt like years to us. We just wanted our little miracle to be OK, and we wished so bad that there was something we could do to help her. She had her ways of telling us everything would be OK and that she had the will in her to survive; she would move around when she knew we needed to feel her the most. It was quite the long road of constant worry and waiting. Not your typical pregnancy at all. Jess felt stripped of every ounce of “normal” that moms are supposed to feel when pregnant. But, Kenzie has been so strong since she was diagnosed and proved to us that she was not willing to give up the fight.

Kenzie’s birthday came unexpectedly, after a final ultrasound checkup proved that she needed to be taken that day. So, we headed to Children’s in Minneapolis. We were very scared and felt a sudden urge of unpreparedness. However, we are so very lucky that Kenzie was born the day she was. The surgeon who delivered Kenzie explained to us that Jessica’s placenta was full of blood clots and there was very little blood supply in the umbilical cord, something she often sees in stillborn babies. She told us that Kenzie would not have made it to her scheduled date, which was only 5 days later. Thank God for that final ultrasound.

After her birth, Kenzie was immediately transported to the NICU in an isolette, with her daddy, Matt, in tow. Jessica finally got to meet Kenzie 3 hours after she was born. Then, Kenzie had to have an emergency surgery late that evening and into the next morning, because of her heart. The doctors placed a temporary pacemaker until she was big enough to receive her permanent pacemaker. Her permanent pacemaker was placed on June 4th, 2015. We call this day her “Heart Day,” the day she received her “zipper.” We were able to hold Kenzie for the first time when she was 3 weeks old. A few days later, we were sent home from the hospital.

In August 2015, three months after Kenzie was born and weighing only 6.5lbs, she was diagnosed with Failure to Thrive. Kenzie was readmitted to Children’s. After two very long, frustrating, and emotional days in the hospital, we found out that Kenzie was in heart failure and also had developed an ASD. Two days after that, she was diagnosed with a severe form of Neonatal Lupus and started to develop a horrifying rash with open sores all over her body. We are forever grateful for Dr. Burton and her cardiology team for never giving up when her diagnosis didn’t fall into the “norm.” I will never forget how many times we heard the words “heart transplant” during Kenzie’s hardest days; a term I never thought I would hear in my lifetime. By the miracle of God and the amazing work of Kenzie’s team of doctors, her heart was able to get healthier without having to be put on the transplant list. Without her wonderful team of doctors, nurses, and techs on the Cardiac floor at Children’s and the amazing Medtronic team, our sweet Kenzie girl would not be with us today. We will be back on that floor throughout Kenzie’s life for more surgeries, but we can go there in confidence knowing that it is the best spot for her.

We were sent home from that two-month hospital stay in October with a NG feeding tube through Kenzie’s nose until she could be taken off prednisone, which was to help heal her neonatal lupus. She was able to come off prednisone in late November and had another surgery to place her G-Tube in her stomach on December 4th. We learned very quickly how incredibly frustrating a NG tube can be, and we are very thankful for her G-Tube, even though it meant another surgery for our sweet girl. To this day, we still have no answer as to why she never drank her formula or breast milk after she went into heart failure. Honestly, we think it was an association with how poorly her heart was doing and how it made her feel. She now eats small amounts of any food we give her and she drinks a few gulps here and there of whole milk. To us, progress is progress. We get asked daily when her tube will come out and why we can’t just take it out. We have learned to just say, “it’ll come out when she is ready and when she is able to live without us using it.” We have learned that it is a process that is very hard for people to understand unless they are living it.

After everything had been going well for so long, we recently ran into another obstacle. Kenzie’s pacemaker unexpectedly stopped working how it should, which meant her heart was pumping at her own rate in the 50’s. On January 4th, 2017 Kenzie endured another heart surgery to replace her entire pacemaker. Let us tell you, handing her off to the surgeons sure does not get any easier, even though we have done it 6 times now. This time, we got to bring her into the OR and be with her until she was asleep. That helped a little. After another long 5 hours of waiting, Kenzie’s surgeon came in to let us know everything went well and that Kenzie was a champ through it all. This girl does not give up. We are on the road to recovery yet again, in hopes that it’ll be a few years until we are in the CVCC unit of Children’s again.

Until then, our life will be lived on an every-3-hour feeding schedule, our pantry will look like a medical supply closet, we will be our daughter’s in-home medical team, we will spend hours at the doctors’ office throughout each month, we will continue to be great at reading echocardiograms, EKG’s and ultrasounds, we will always have our favorite parking spot on level D in the blue ramp at Children’s, we will never forget the numbness we felt handing Kenzie off at her first OHS because those feelings will be there for all of her surgeries in the future as well, we will continue to take photos of her in those hard times to keep us humble and help teach her how far she has come, we will forever not be bothered by beeping of any kind, we will be able to explain to Kenzie the use of each line she was ever hooked up to, we will consider ourselves lucky when we get a room with an uncomfortable couch to sleep on because that means we can be close to her, we will continue to give back the best way we can by volunteering at Children’s Hospital and Ronald McDonald House events, and we will constantly be educating ourselves on Kenzie’s diagnosis and forever be her advocates. We don’t know any different and honestly would not have it any other way because it has made us a better team and a stronger family. This is our “normal,” and we are ok with that.

The almost 4 months spent in the hospital so far, has taught us so much about the fight that lives in our daughter. We have worked with so many specialists and programs to help figure out her complicated case and catch her up developmentally and physically. Kenzie has made huge strides on her own. She has proven to us in so many ways, how much of a fighter she is and that she will not give up. She is the strongest person we have ever known. In her short life, Kenzie has been through 6 surgeries and almost 4 months spent in the hospital, which most people don’t experience in their lifetime. We are so grateful to all of the hospital staff at Children’s and the Ronald McDonald House for helping us through Kenzie’s journey. Without her amazing team of doctors and nurses, Kenzie would not be here and we are forever grateful to all of them. She is the perfect combination of princess and warrior. We’ve learned that our Kenzie truly is a miracle and one of a kind. She has fought through every battle, but not without the power of prayer. We thank you all for lifting her up in prayer and support throughout all the times of the past and all of her future hospital stays and surgeries. We thank God for her every day and are humbled by the fact that, even though her journey has not been easy, we are one of the lucky ones.

Kenzie’s cake was provided by Sugar Angel Virginia Louden with The Tousled Turtle MN in Anoka, MN. Thank you Virginia for bringing a big SMILE to Kenzie’s face!