I’m a mess. A crying, blubbering, oversensitive mess. I know this pales in comparison to what we’ve been through, but it feels like my heart is breaking. I know it’s the right decision, I know I’ll get over it, but I’m mourning it all the same.
Parents of children with feeding disorders or difficulties can undergo debilitating stress surrounding food, mealtimes, eating, and even social gatherings where food is served. Each family is different, and their journey is unique. Children can be fed and get their nutritional needs met through a variety of ways.
World Prematurity Day on November 17 raises awareness of this serious health crisis. Throughout this month we have tried to draw attention to this crisis, sharing our story, other family's stories, information about preemie babies, and we are so excited to be partnering up with Pampers who is giving back to this community and to March of Dimes with their Pampers #LittlestFighters Campaign. You can help give back and raise $$$ for our Preemies!
I was officially a brand-new, single mother to a 36-week preemie. I was terrified, exhausted, overjoyed, sad, happy, confused and wondering how on earth I was ever going to make this work. I knew that I would be going through my pregnancy – and motherhood – alone, but the moment was finally here. Grace was here. And I was the only person she had. The next 10 days in the NICU with Grace were the longest days of my entire life. Despite how hard they were, though, I can promise you this: Being there as a single mom for Grace in the NICU made my love for her grow tenfold – and it was the most rewarding experience I’ve ever had.
That beeping. I’d hear it all the time: sitting on the couch, in the car, just as I was falling asleep. I’d be finally feeling safe and I’d hear that “beep beep beeeeeep” of a monitor going off. We were home, we were so incredibly lucky that our baby was doing so well, and yet, I couldn’t shake the anxiety, the sadness and the guilt. And that damn beeping in my head was a constant reminder I wasn’t okay.
Having a baby with home oxygen support presented it's own unique set of challenges. I wanted nothing more than to move about freely with my baby in my arms without an oxygen cylinder on my back, but it gave me an opportunity to learn and to educate those around us about the realities, the joys, the hardships, and the celebrations of having a medically complex baby.
“You guys are young you can always try again later.” Those were the words my OB uttered as he sat at the edge of my hospital bed. I cried and asked, “Why is this happening to us?” I was 22 weeks pregnant and 2.8cm dilated. His usual candor went from upbeat to sad as he responded, “Sometimes these things just happen. You guys are good people and I hate when bad things happen to good people.” We wanted the truth and his advice…that’s when he said straight forward that we should do "comfort care". Going that route would mean that we would not stop the premature labor, and there would be absolutely no medication given or intervention when our son was born. Simply put, this suggestion meant that if our son was born before 24 weeks, we would hold him until he passed away.
I’ve always thought it was the subtle touches that really make the costume. Don’s cane and the pillow stuffed under my shirt. Linda’s dress in a dry-cleaning bag and the tape recorder. Mr. Rogers’ puppet and the Sperrys. Stevie’s keyboard and minimal crustache. The tap lights for eyes on the Droid.
When it comes to costumage, I’m a bit obsessive, always looking for those perfect accoutrements that really complete the ensemble.
And while my love of All Hallow’s Eve hasn’t waned, since 2015, my costumes have taken sharp right turn. They’re headed in a direction that likely won’t change foreseeable future.
Your baby's first Halloween is special but when you are in the NICU it can be a bit disappointing. You are not at home, where you truly want to be, your baby may be struggling to just do the simple things we take for granted like eating, growing, breathing, regulating their temperature. You know, life stuff! Celebrating Halloween in the NICU provides parents the chance to experience a bit of joy and normalcy in an otherwise stressful atmosphere. It allows them to create a special moment with their itty bitty one and celebrate a first milestone.
For the second year, TEAM ADDIE is walking in the Race for Our Kids to raise money for the NICU that took such good care of her. This year we wanted to expand our fundraising efforts by encouraging the small business community to help us make a difference in the lives of these families. I reached out to many small businesses and asked if they would be interested in supporting Adeline's NICU and joining our little #nicuawareness community.
The NICU does create some barriers to bonding with your baby; they may be too unstable to be held or you may have post-partum health issues of your own. They are literally behind a wall – a glass barrier. They may not even be in your arms, let alone at home with you. Gestational age or medical issues may also prevent them from having the skills developed to initiate or respond to your bids for bond. But building a bond with your preemie, no matter how pre-term, is possible. It just takes a little bit of creativity, a lot of determination, and a wholesale mindset shift from what you were expecting when you were expecting…