Support Alinea's Journey to Recovery

Hi everyone. Our daughter Alinea is bravely fighting through her second surgery for gastroschisis, and we're now facing a long road to recovery. The doctors expect that we'll be in the hospital for a few more months, possibly into the new year as she heals and grows stronger.

Alinea was born with Gastroschisis. Gastroschisis is a birth defect where a baby is born with their intestines (and sometimes other organs) outside of the body, due to a hole in the abdominal wall. This condition requires surgery to place the organs back inside and repair the opening. Alinea was also affected by what is called vanishing gastroschisis. Vanishing gastroschisis is a rare complication where the abdominal organs that were outside the body during pregnancy spontaneously return to the abdomen before birth and the abdominal wall begins to close around the organs cutting off circulation. This can cause significant damage to the intestines, leading to issues like short gut syndrome. Babies with vanishing gastroschisis often face more complex medical challenges and require extensive care and surgeries after birth.

At this time, we don’t know if or when Alinea will need additional surgeries. Today, her surgeon reconnected her intestines and performed a STEP procedure to try and lengthen her bowel, which is crucial for her digestion and absorption. Even when we are eventually able to bring her home, Alinea will most likely need to continue receiving IV nutrition to support her growth and health as her body adjusts.

We are reaching out for help with some of the unexpected costs that have come up during this time. We will be needing to purchase additional supplies in order to make the transition home easier as not everything will be covered by insurance. Such as line covers to make Alinea’s IV visible for those walking around our home/ protect from pets and Zane. Special vets to hold her IV port in place when she is not getting her infusions and to allow her to be a normal baby.

Attachments for a it stroller wagon to hold the needed extras while we are out and about. Specialized bags to hold her TPN and IV pump. 

The hospital is 20 miles from our home, and with the frequent trips back and forth, gas expenses have quickly added up.

Additionally, with no fridge access in the NICU, we rely on either shelf-stable snacks or having to get delivery.

The funds raised will also go towards our household bills. I am currently out of work to support Alinea and her siblings as we all navigate the challenges of having a baby in the NICU. While we were somewhat prepared for Alinea’s initial NICU stay, the complications from vanishing gastroschisis, which has now led to short gut syndrome, have added unforeseen difficulties to our journey.

We deeply appreciate the love, support, and well-wishes we've received from everyone. Your continued support means the world to us as we help Alinea get better and bring her home to her family. Thank you for standing with us during this challenging time.