As a way to raise awareness I wanted to take some time to shed a spotlight on how prematurity effects everyone, be it a parent or other family members or friends. Follow along with the Q & A throughout the month as I share here...
Our First Spotlight comes from a parent - Meet Judith and her mom Rebecca
Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...
Judith is my first child, born at 29w2d due to severe pre-e and IUGR. Her journey had 2 major bumps; The first was a NEC scare that turned out to be a meconium ielius (the jury's still out whether this was strictly preemie-related, if it was the start of a complication associated with her Cystic Fibrosis, or a combination of both), and she was pretty sick for about a week. The 2nd bump we almost lost her. She developed late-onset group B strep/sepsis/possible meningitis infection and spent an additional 2 weeks in the NICU for antibiotics. She was discharged at exactly 2 months old after a 63 day stay.
How would you say YOUR experience with this preemie(s) has effected you?
My experience was eye-opening and completely changed me. I knew I was a high-risk pregnancy from then moment we got our positive pregnancy test during IF treatments, but I never expected to develop pre-e or IUGR 12 weeks before my due date. Seeing my body swell up was one of many terrifying moments at the start of our preemie journey, and deep down I had a feeling I would be delivering my baby within a week. I had no idea what to expect with delivering a baby that early, what her prognosis would be, or if she would even survive. I learned quickly how to be an advocate for her, and how to be her biggest cheerleader. The events came with a price, though: I've gone through a roller coaster of emotions that, almost 2 years later, still have not resolved. Many of the memories are burned into my brain, and it's hard to think about some of the days spent in the NICU, especially those where her life was on the line.
How were you able to handle the NICU experience?
I surprised myself. Overall I feel like I weathered it well in the moment. My husband is not as strong with high stress situations like that, and I knew I had to stay strong for him and Judith. I definitely had days where emotions ran very high, and I had days where I would cry a lot. I had days of frustration and days of joy. When people talk about the NICU roller coaster, they mean it!
Before this experience what did you know about preemies?
I honestly didn't know a lot about preemies, except that medical technologies have come a long way and babies born earlier and earlier have better survival rates then they did years ago. A lot of what I learned came through research and learning on the fly while Judith was in the NICU.
What have you learned from all of this?
Nothing in life is a guarantee, and things can change in an instant. The preemie world is one that no one really expects to be in, but if you become a part of a community, there are lots of other wonderful parents who will support you and help you get through it. While our preemies may look fragile, they are tough and are fighters.
What advice would you give another person in your situation (as a parent)?
Having a preemie can be a traumatic experience, but don't be afraid to reach out and connect with other parents who understand what you're going through. Having a good support network is really beneficial. You are the best advocate your baby has - don't be afraid to speak up on their behalf, especially if you have a gut feeling about a situation. Also don't be afraid to ask questions if you don't understand something. The Neos and nurses with help you out. Get a good, quality breast pump, and ask you LC to help fit you for the right size flanges. Preemie books can be helpful, but it's best not to read them cover-to-cover; only read the sections that pertain to your situation so you don't cause any unnecessary stress or worry over a problem that you may not have to deal with. Stay off of Google - it is not your friend (I learned my lesson the hard way that one)!
To read more about Judith and her amazing mommy visit their blog -
2 Bostons, 1 Preemie, & 65 Roses: http://bostonsandapreemie.blogspot.com