Supporting Jess and Derek

Jess and Derek need our help! They give to our community in so many ways, let’s rally and help them.

***If you would rather donate to Jess through Venmo:
@Jessica-Lutton-1

Jess writes:
 
We wanted to make a public post to to let all our friends and family know about what’s been going on with us the past several months and some upcoming challenges our family is facing.  As some of you probably already know, we are pregnant with a second baby girl (yay!).  We found out at our 20 week anatomy scan that she has a somewhat rare defect of her abdominal wall called gastroschisis.  This means that her tummy muscles didn’t properly close which has left her with a hole, allowing her organs to float freely outside of her body and for organs to be exposed to amniotic fluid throughout her entire gestation.  Right now it appears to be her small intestine that’s out but as she keeps growing this can change.  Although this is thankfully a condition that is getting to be fairly well known and her chances of survival are excellent (90%), it doesn’t come without risks.  We know right now that she is hanging out between the first and fourth percentile for overall size so she’s on the extremely small side.  Intrauterine growth restriction or IUGR is a secondary issue she has.  Other risks we can expect to be navigating include issues with the umbilical cord flow, bowel irritation, tissue death, and likely early delivery.   When she is born we’ll be looking at a typical stay in the nicu somewhere around 2 months.  Depending on her progress and any complications (which are common), it may be longer.  We will not be able to bring her home from the hospital for a while and our time together in the first weeks of her life will be visits in the nicu, it could potentially be weeks before we’re even able to just hold her.  She’ll need special care immediately after birth and she’ll be under close watch as everything goes back inside her body and as her body adapts to using her bowels, which are going to be more prone to issues like blockages, twists, adhesions, absorption problems and other fun medical terms we’ll need to become familiar with, most likely for her whole life.  And on the other hand, it’s possible she’ll make a quick transition in the nicu, have zero complications and never have any bowel issues, we just don’t know and are trying to be prepared for anything. Finances are something we hate to be worrying about right now but unfortunately we are.  The care we need for the remainder of pregnancy and start of baby’s life requires we temporarily relocate away from our home and beloved community in Ketchikan.  We are estimating a minimum of 3 months down south starting May 1st, 1 for the final month before birth and 2 for the nicu stay after, but we also just don’t know what will happen.  I’ve had to resign from my job of 3 years as I’m not able to take medical leave beyond 3 months and my request to work remotely was denied, but Derek will be able to keep his job so thankfully we are only down one income.  We will be in Spokane, WA near Sacred Heart Chidren’s Hospital which has excellent experience with Gastroschisis.   We have only started sharing this news and our plans but feel very supported and loved right now.  We have heard again and again about people who had a gastro baby or were even born with it themselves and are doing great, this has been so comforting to hear!  We’d like to ask if you are able to, any donation you’d be willing to provide will help us be more able to cover our estimated cost of travel and rent in Spokane, Washington which is roughly $15,000.  Anything further will be going towards medical bills.  We will likely be meeting our deductible and out of pocket maximum at $11,000. We love you all and are appreciating people checking in with us and reminding us that everything will be okay one way or another.  And no, we are not sick of talking about it yet, we’re happy to answer any questions thank you so much for all the love. Some helpful links with current research if you’re curious: https://averysangels.org/gastroschisis/ https://rarediseases.org/rare-diseases/gastroschisis/