Today we are talking all about isolating your preemie during Flu & RSV season. I am sharing our story, the science behind the recommendation, my own research, tips for keeping your preemie safe, and more!
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.
It's hard to believe that we're wrapping up day 19 of this hospital stay. 3 weeks on Sunday. 128 days in the hospital since September 16th. And yesterday, Addie turned 6 months old. Out of the ~180 days she's been alive, most of it has been spent in the confines of a medical institution. Crazy when you think about it long enough. Last night, before bed, Steph and I flipped through, backwards, all of the photos we've posted to her Facebook page and to see how far she's come is really incredible. From the tiny, 1.5 lb, red-skinned human struggling to breathe in the isolette, to the 8 lb, fair-skinned, smiling little peanut. The transformation is something that you start forget. Our focus is always on the now because that's where we have to be. We have to live in the moment. We have to fight with the doctors for what we know is right. We have to give this little one constant attention. We have to be by her side without ceasing. We cry, we worry, we set our timers for the next regimen of meds. We wait for the next diagnosis, the next procedure, the next treatment. And that means that while we see her grow, we rarely have an opportunity to sit back and watch it.
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.
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.
Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first. When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU -It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing. I needed to voice my concerns. It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!
This September for NICU Awareness Month we teamed up with several small shops to spread awareness through social media posts, created items inspired by preemies, having a giveaway, and also raising money for Sinai NICU, where Addie Belle spent 114 days. Some of these shops went the extra mile and participated in all facets of our collaboration, and most importantly made donations to Adeline's NICU from the proceeds of the items they sold. One of these shops was From Mini to Moose, who could not be a better business to collaborate with for #NICUawarenessmonth.
Baby Nation. is a podcast perfect for our family. They highlight the "inspiring and vulnerable stories of parents caring for a child with a medical diagnosis." This week, Baby Nation interviewed the parents of f the most inspirational 2 year old I know, Adeline Belle.
We're at a point where we're also realizing that things may not be sunshine and roses when she comes home. That the ride we're on may not be over. That preemies like her still require much more than the giants down the hall. When we've asked the doctors about coming home for Christmas, they've given us the caveat that it's likely that she'll go home with oxygen support. And that tomorrow, at the end of her 35th week, if she's still on oxygen, she'll be officially diagnosed with chronic lung disease.
My daughter spent 114 days in the NICU and as she is approaches 2 years old, I’m still suffering the after-effects. Since I launched this blog during NICU Awareness month, I’ve focused heavily on my experience during those 114 days. Looking back at all of the photos and recounting what I went to has dredged up bucketfuls of ‘Yuck’. In my past life, I was a very data & research driven person. I still read studies, research outcomes, and the like when I’m interested in something. Recently, I read studies about Acute Stress Disorder (ASD) and Post Traumatic Stress Disorder (PTSD) specifically for parents in the NICU and through them all, found myself asking myself…
They told us this would be a roller coaster. Which worries me sometimes. I get what they mean, that it has its ups and downs. Twists and turns. Sometimes it flips you upside down. Sometimes, you're racing around a curve. Other times, you're being slowly pulled up a hill. I think that last part is what worries me. Ups and downs. On a roller coaster, the ups are always followed by a swift down. An intense drop. You never go up, up, up and stay there. The anticipation you feel when the track catches your car and you start chugging up the hill. Shaking as you go. That jerking motion of the wheels caught in the biggest bike chain you've ever seen. Ca-chunk is probably the only way to describe the sound you hear, every few seconds as you slowly approach the top of the hill. You know what's next. You know that once you hit the top, you'll feel the wheels release. Down you go. Speeding towards the bottom. Your stomach getting shot into your throat. And if you're lucky enough to be on an old wooden coaster, the white knuckle intensity of hoping that single bar, 3 inches off your lap will hold.
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.
John wrote about our experiences while Addie Belle was in the NICU on a private group for our family and friends. Here is a snippet of his writing... Diary of a NICU Dad.
Addie has inherited that stubbornness and I know that's what will get her through her stay in the NICU and keep her healthy on the other side of all of this. She won't slow down. She won't let up. As I've watched her fight, grow, and progress over the last 3 weeks, I have a feeling in the pit of my stomach, a voice telling me in the back of my brain, that she's going to be OK. And not just OK. She's going to be special. Not just because she's my daughter. Not just because she's a miracle. Just because.
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…