Hello Dear Friends and Family!
We are super excited to welcome a new member of the Simon family. We have received so much support over the last several months and we wanted to share our news with you. On March 23, 2015 at 9:29pm Marlowe Rose Simon was born weighing in at 6lb 5oz and 18 inches long at Mass General Hospital in Boston. After a smooth labor, it was clear that Marlowe was demonstrating some immediate health concerns. She had delayed breathing and a significantly distended stomach, so she was admitted into the NICU for care.
In the post delivery whirlwind, we didn’t have a good understanding of what was wrong, but knew she was with an amazing team at the NICU unit at MGH. By early Tuesday morning, we began to learn a bit more. Our sweet Marlowe had underdeveloped lungs as a result of her kidneys not producing enough amniotic fluid. It was quickly determined that she is suffering from an extremely rare genetic kidney disorder. An ultrasound revealed her kidneys are filled with tiny cysts causing near total loss of kidney function. Each unit of urine she produces is an enormous victory for her. Since the cysts cause her kidneys to be so enlarged, there are many complications impacting her other functions.
We are meeting with a team of her health care providers several times a day to determine her next steps. While the teams are watching her first days very closely and are constantly adjusting her treatments, we understand she is going to have an extremely difficult road ahead of her. At the moment, we are discussing a range of surgeries to help alleviate her swelling and begin to return her to normal lung function, allowing her to come off the ventilator. We live each day hour by hour, as her condition is constantly changing.
Although we have experienced a wide range of emotions over these four short days, we are hopeful and optimistic that after the recommended surgical procedures are done, she will be able to partake in the joys of infanthood, eventually have a kidney transplant, and live a fairly normal life. Throughout each day, she continues to marvel us with how strong she is.
This is extremely challenging for us, and obviously came as an extraordinary shock. We have the Simon and LaFlamme families by our side, and are gearing up for a long stay in the NICU. Given how difficult this is for us, and how ever-changing the information we have about her condition is, we will use this site to communicate future updates, send and receive positive words, and allow interaction between our friends and family.
There are still so many questions, and things for us to learn about Marlowe’s upcoming challenges. We are just barely beginning to understand and adjust to what will be a new normal for the Simon family. Although this is a huge undertaking, Marlowe is truly amazing. She reacts wonderfully to both Mom and Dad, and is alert and finicky just like any other newborn. Her hairline is similar to Dad’s and she has big beautiful eyes just like her Mom. We will need a lot of support in the coming days and months as we transition to our new lifestyle, and are so grateful for the support we have received since we shared the wonderful news of Marlowe’s impending arrival.
