Episode 13: Katie and Tim: Giant Omphalocele.
Katie found out at her 20-week anatomy scan that her son had a giant omphalocele. She candidly and honestly talks about the initial bumbling conversation where she first heard about his diagnosis and the relief she felt when she got hooked into a high-risk OB practice and a NICU with experience with babies with Giant Oomphaloceles.
Because she found out at 20 weeks about her son’s omphalocele, she had the remainder of her pregnancy to really process what that meant. Letting go of “the perfect pregnancy” and “the perfect delivery” and “the perfect child” and even their chosen name (Colin is too close to Colon) to accept the journey that was ahead. For parents in the NICU, it is not simply important, but essential, to acknowledge what was wanted and expected. Acknowledge it, feel it, and move forward to your new normal, where you can fight for, advocate for, and love your baby.
Throughout this podcast, Katie weaves suggestions for NICU parents into her story. Here are a few of my favorites:
Take it an hour a day, a day at a time. You can not think more than an hour or a day ahead, so stay in the moment.
Develop a communication plan. Friends and family are going to want updates. You should plan how you want to communicate with people (text, call, social media, website), who you want to update, how much you want to share, and when you are going to share (daily, weekly, never, etc).
Do not compare yourself to someone else. You are on your own journey. Your child is on their own journey.
The first time you hold your baby, soak it all in. The connection, the love, the peace. But also fear grief and sadness. It is ok to feel both at the same time.
When working on oral feedings, remember to take a deep breath. Your baby will pick up on your vibes and your energy. Try to stay calm while you are feeding your baby, so they can pick up on those calm vibes.
For parents of babies with GI issues at birth (gastroschisis to omphalocele to Hirschsprung’s) and micro-preemies, working on feedings at the end of the hospital stay can be one of the most challenging and frustrating parts of the NICU stay. Working on helping your baby learn something that is supposed to be instinctual can be emotional. Spending weeks to months in the NICU, and knowing you are so so close to going home and WAITING for your baby to take all of their feedings can be painful. Here is a great video of Tim working on feeding.
Katie is now working on publishing a book about her NICU experience. The book is called “Infinite Miracles: The Memoir of a NICU Mom”. The book details a unique entre into parenthood and ultimately having a son who thrives into toddlerhood. In her book, Katie brilliantly talks through how they developed a communication plan, and how they dealt with the conversations around them.
I love the conversation Katie and I have towards the end of the podcast about how people communicate differently when hearing bad news. Optimism bullies… Over Empathisers… Cliche Sayers… We need to avoid these. The best thing to do is to just sit quietly in the hard — and listen.
Tim turns FIVE!
Tim holding a picture of himself in the NICU during the first week of life.