Update: Cora has received her last paycheck, and is at risk of losing her insurance (which is paying for this care currently) or having to pay out of pocket to keep, please any little bit helps even just sharing!

Update from today! No changes to her formula feeds but we did give her a little more puree today! She seems to be doing well other than not napping and being overtired! She is increasing in stool output but not to the point where she needs medication for it yet. The doctors came in today and said she’s going to have to be here for at least 3 more weeks. They are predicting she will need a minimum of 140 mls every 3 hours of formula to even try to completely stop the nutrition. However they may even need to increase past that due to her not being able to actually absorb things well. Hopefully things go well and we have no set backs with increasing feeds!

Hello everyone I’m setting up this Gofund me for my niece and her baby Alexandria.

Cora had to make the heartbreaking decision to switch to part-time work in order to care for Alexandria, and this means she will be missing extended periods of work due to appointments and her ongoing needs. Because she is now working part-time, she doesn't qualify for FMLA and has limited leave accrual, leaving her to take unpaid time off during these difficult moments. The mounting medical bills are overwhelming, and any support or help offered means the world to her during this crushing time.

Alexandria’s story: At three weeks of age, Alexandria exhibited feeding difficulties and appeared to be unwell. She was transferred to Albany Medical Center, where it was discovered that she had stopped breathing. Diagnostic imaging revealed a cyst on her intestines that had caused her bowel to become twisted and compressed, resulting in the loss of most of her intestinal tissue. Over the past seven months, she has undergone four surgical procedures and received three blood transfusions.

Initially, Alexandria was born with approximately 240 centimeters of intestine; she now has only 59 centimeters remaining. Since around one month of age, she has been dependent on total parenteral nutrition (TPN). She has a central line, now in her second placement, through which she receives her 17-hour TPN infusions daily. She is also gradually increasing her oral intake as part of her feeding plan.

We are planning to admit Alexandria to Boston for a period of several weeks to begin tapering her TPN infusion duration, reducing it gradually from the current 17 hours daily. Prolonged TPN use poses risks to liver health, and we aim to mitigate those risks while ensuring adequate nutritional intake through oral feeding with a specialized diet. During this time it will be unknown if Cora will receive a pay check.

Unfortunately, Alexandria's remaining bowel will not regenerate, and she will continue to face related challenges. Our goal is to eventually wean her off TPN entirely, contingent upon her ability to consume sufficient calories orally within her specialized diet. Her surgical team is optimistic that she may be able to be completely off TPN by the age of 3 or 3.5 years; she is currently 8 months old.

Please follow our updates as we support Alexandria through this journey. You can find updates in Alexandria’s journey: living with TPN on Facebook.