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Kenzie

by Marta Elena Cortez-Neavel |

Meet Kenzie, as introduced by her parents, Jessica and Matt:

Our beautiful daughter, Kenzie Caitlyn Lund, was born five days before our scheduled C-section on May 22nd, 2015. She weighed 4 lbs, 5 oz and was 17 inches long. She is our miracle. 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 two antibodies (SSA and SSB) that can pass through the uterus to the fetus and cause Fetal Heart Block. Jessica was screened for those antibodies because she has Lupus, and all women that have Lupus who become pregnant are automatically tested for those antibodies. When we were told that Jessica tested positive for the SSA and SSB antibodies, we were told about the VERY slight possibility of Fetal Heart Block. The doctors told us it had a LESS THAN 2% chance of happening. So, we left the doctor's office that day with confidence that it would not happen to us.

Since that appointment, everything seemed to be going well. Starting at 16 weeks, Jessica began going to weekly ultrasounds to check the baby's heart, as is recommended for pregnant women with the SSA and SSB antibodies. During those appointments, we also found out our baby was a girl! We decided on the name Kenzie Caitlyn, the only girl name that we both loved and agreed on. 

That little oomph of excitement we experienced following this discovery was completely turned around in January 2015 at our 20-week appointment. Our lives flipped upside down when Kenzie Caitlyn was diagnosed with Third Degree, or complete, Fetal Heart Block. This type of Fetal Heart Block is a rare heart defect that can only be treated with a pacemaker, which could only be placed after she was born. 

Third Degree Heart Block is irreversible, so all we could do was hope and pray that Kenzie had the fight in her to make it through on her own until she could be born. There was nothing the doctors or we could do to help her until birth. Every single day since that appointment has felt like years to us. We just wanted our little miracle to be okay, and we wished so badly that there was something we could do to help her.

Kenzie's time in the womb was when we found out how much fight and strength she had in her. She had her ways of telling us everything would be okay, and that she had the will in her to survive. She would kick and move when she knew her parents needed to feel her the most. Those were some of our most trying days. It was a long, 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 was so strong since she was diagnosed, and has proven to us over and over that she is not willing to give up the fight. She continued to amaze us throughout our pregnancy!

Kenzie's birth came unexpectedly after a final ultrasound checkup before her scheduled C-section birth. The checkup determined that she needed to be born that day. Feeling scared and suddenly unprepared, we headed to Children's Minnesota Minneapolis Hospital. However, we are so fortunate 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. Thank God for that final ultrasound appointment. 

After her birth, Kenzie was immediately transported to the NICU in an isolette. Matt was able to go with. Jessica finally got to meet Kenzie three hours after she was born. Then, Kenzie had to have an unpredicted emergency surgery late that evening and into the next morning, due to her heart condition. The doctors placed a temporary pacemaker until she was a little bigger in order to place her permanent pacemaker. Her permanent pacemaker was placed on June 4th, 2015. We call this her "Heart Day," the day she received her "zipper." 

The second surgery to place her permanent pacemaker was much more invasive. The doctors had to crack her chest open and sew the leads into her heart. They also opened her stomach to place the generator of the pacer under her muscle. She now has some big battle wounds with a wonderful story of strength to tell. The pacemaker's generator will be replaced when she is 3-4 years old, then at about 8-10 years old, and, depending on technology, again later. The leads that are sewn into her heart need to be replaced every 5-10 years. So, unfortunately, the surgeries are not over for Kenzie. At least she will be much bigger and stronger for her future surgeries. 

We were able to hold Kenzie for the first time when she was three weeks old. A few days later, we were sent home from the hospital. Over the summer, we worked hard to get Kenzie to gain weight, but she ended up being diagnosed with Failure to Thrive.

In August 2015, three months after Kenzie was born and weighed only 6.5 lbs, we hit another setback. 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. Two days after that, she was diagnosed with a severe form of Neonatal Lupus and started to develop what ended up being 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." They had to try everything imaginable for her to get better.

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 fantastic work of Kenzie's team of doctors, her heart was able to get healthier without having to be put on the transplant list. We thank the big man upstairs for not having us go down that path. Without her excellent team of doctors, nurses, and techs on the Cardiac floor at Children's, and the fantastic 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 an NG feeding tube through Kenzie's nose until she could be taken off prednisone, which was to help her lupus rash. She was able to come off prednisone in late November and had another surgery to place a G-Tube in her stomach on December 4th. We learned very quickly how incredibly frustrating an NG tube can be, so we were thankful for the switch to a G-Tube, even though it meant another surgery. 
Since we have been home from that surgery, Kenzie has been working hard on gaining weight, growing, and developing. Although she is small, she is the strongest person that we've ever known. Those two months spent in the hospital taught us so much about the fight that lives in our daughter. It also gave us a new kind of "normal" with our precious miracle baby: her new schedule, her feeding tube, and all of her medications. We honestly cannot imagine life any other way now!

Since we've been home for a while now, and only visit Children's for our many checkup appointments, Kenzie has been doing pretty well. We have worked with so many specialists and programs to help figure out her complicated case and catch her up developmentally. 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, and she wanted nothing to do with it since.

She eats small amounts of pretty much any food we give her now, and she drinks a few gulps here and there of Vitamin D milk. To us, progress is progress. Kenzie has made huge strides on her own and is doing her best. We know that because she has proven to us in so many ways how much of a fighter she is and that she will never give up. We get asked daily when her feeding tube will come out, and why she still needs it when she is able to eat some food normally. We have learned to say it will come out when she is ready and when she is healthy enough to live without it. We have learned that it is a process that is very hard for people to understand unless they are living it.

Until then, our life will be lived on an every-3-hours feeding schedule, and our pantry will continue to look like a medical supply closet. We will be our daughter's in-home medical team, spend hours at doctors' offices each month, and continue to improve our skills at reading echocardiograms and ultrasounds. We will always have our favorite parking spot in the blue ramp on Level D of Children's. We will never forget the numbness we felt handing Kenzie off at her first open heart surgery because those feelings will be there for all of her operations 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 cord she was ever hooked up to. We will consider ourselves lucky when we get a room with an uncomfortable couch to sleep on, because we will at least be close to her. We will be thankful for the "normal" ear infections and colds that kids typically get. 

We will continue to give back the best way we can by volunteering at Children's and Ronald McDonald House events, and we will continuously be educating ourselves on Kenzie's diagnosis and forever be her advocates. This is our "normal," and we are okay with that. 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.

In her short life, Kenzie has been through five surgeries, and spent three months in the hospital, which most people won'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 battle. Without her fantastic team of doctors and nurses, Kenzie would not be here. She is our little warrior, miracle, and princess. We thank God for her every day and are humbled by the fact that - even though we have been through a lot - we are some of the lucky ones. 

Do you know someone with an Abilitee Story, or would you like to share your own? We'd love to hear it! Send us an email at hello@abiliteeadaptivewear.com to get started.

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