Makenzie Lange Makenzie Lange

First post: Nov 28, 2021 Latest post: Jan 14, 2022
Welcome to Kenzie”s CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Kenzie was born at 34 weeks. She had to receive full CPR at birth as she was not breathing and her heart stopped.
We found out the next morning that something was wrong with her heart. Instead of it making a “thumping” sound it went “swish swish”. A cardiologist from children’s came to the hospital in Cambridge and did an echo. We were told she had a bicuspid aortic valve. Instead of 3 valves she only had 2.
Her first year was a series of dr visits. She was always getting sick. We didn’t know how her heart was going to take the extra blood flow. She stayed stable and for many years stayed at the mild level. We were told that if her heart can wait till 13-14, we wouldn’t need several surgeries since the older you get your heart grows.
At 10 she went to the moderate level and medication was introduced.
Then in 2019 we had a new issue. During softball season her hip slipped into her socket and she had emergency hip surgery. Then 3 months later in Basketball the same thing happened to her other hip. She was a trooper and rocked those surgeries with no problems.
Just when we thought all was good we had her yearly check up August 23, 2021. I knew something was wrong the echo took twice the time it normally does. Kenzie said “mom, somethings wrong, I could tell by her facial expressions and it took so long.”
Finally the Dr. came in and started asking questions. Like is she tired? Does her chest hurt?
I said please tell us what’s wrong.
She has moved to the severe level, now that her heart is an adult size. It’s causing lack of blood flow on one side and narrowing on the other. She will need surgery this year. Since she’s not having any symptoms hopefully we can make it till summer and to comeback after Christmas.
We were devastated but we knew eventually this would happen.
She turned 13 on September 13th. Once school started and she started Volleyball I noticed she was very tired, I talked to other parents and they said their girls were tired too.
On 10/20/21 she messaged me while at Volleyball that her chest hurt. I called Children’s and they said to take her to the ER. Her EKG showed her heart was working really hard, but she was stable and to get an appointment at Children’s.
November 1st she had a new Echo and We were told that the severity had increased by 20 percent since August. She needs surgery as soon as possible. We were not prepared for this. We really thought we would have more time to prepare. On the 3rd a team of cardiologist met and reviewed several different options.
They felt the best procedure was called “The Ross Procedure” they will take the pulmonary valve and put it where the aortic valve is and then put a prosthetic valve where the pulmonary one is.
Surgery is scheduled for 12/8/21. A surgeon from the Mayo Is coming to Children’s to perform the surgery. This is major heart surgery. She will be highly sedated and in ICU for a while so her body can adjust to the prosthetic valve. I was told to prepare for complications a surgery of this magnitude will have some complications but we will cross that bridge when we get there. Kenzie watched the procedure and was scared at first, but now she tells me she’s not scared and just wants it over to feel better. As her mom I’m a mess honestly. The thing that brings the tears are the thoughts of the pain she will be in. We just keep asking for prayers.