When Penelope was born early 2022 we knew she had heart defects and would need treatment. We ended up in PCH for 5 full months, with 4 open heart surgeries, before she was healthy enough to come home.We spent every day in her room and slept in her room every night of those 5 months. She came home September of '22 and has been doing amazing for the last 2 years.

We recently learned she has a rare genetic disorder, 22q11.2 Deletion Syndrome, also known as DiGeorge Syndrome, which explains some of her medical problems, in particular her heart issues. 22q is the second most common genetic disorder after Down's Syndrome. It will impact her for life. 22q appears in roughly 1 out of 1000 babies, and 90%+ of the time it is a random genetic mutation that is not shared by the family. We were both tested and we don't have the disorder, so thankfully it won't be a concern for future pregnancies. Many adults with 22q live relatively normal lives and don't even find out they have the diagnosis until another member of their family is diagnosed, so there is hope for a relatively normal life in adulthood for her, but it is hard to tell this early. She will likely have complex medical needs her entire life, and may never attain normal developmental milestones. We're encouraged that she is such a bright, happy, curious, playful child who clearly understands far more language than she can speak just yet, and there has been substantial progress in her speech and physical therapies. In particular, having a brother who is younger in age but about the same in development has been very valuable for her growth.

A few days before her 3rd birthday, we felt a strange sensation in her chest with every heartbeat. We rushed her to the ER and they realized her replacement valve from '22 had blown completely and would need to be replaced. They stabilized her and had her in for surgery within a few days. The surgery was successful and she recovered remarkably quickly. We again spent every day and night at her bedside, this time only 9 days in total before being discharged.

She is back on a nasal feeding tube to help with calories, hydration, and importantly her oral medications. She developed a strong aversion to taking her medications while in the hospital, so it will likely be weeks of working to re-acclimate to eating and drinking by mouth and taking her oral medications again before the nasal feeding tube can be removed. She is still working on regaining her physical strength as well, so she will need substantial physical therapy as well as feeding therapy to get back to her happy, eating, active self that she was before this medical event.

Luckily we had both Grandmas in town to help with Christopher Jr. (turning 2 in May) and luckily Keene Baby #3 isn't due until May/June, so if this had to happen, it happened at a as good a time as can be.

Medical, feeding, and therapy bills, along with the need for a new HVAC system and a new vehicle have all hit simultaneously, and while we are managing financially, with the substantial loss of income over the past month support from our family, friends, and community is incredibly helpful, and we appreciate any financial support or prayers you can offer. Thank you!