Tips for NICU Parents
This is the short version of our story, for those who want to know about our favorite post-NICU items.
On October 5, 2014, I was 23 weeks 2 days pregnant, experiencing severe back pain. We went to the ER with no idea what was happening. After moving to L&D I was placed in the Trendelenburg position. I remember many magnesium, terbutaline shots, steroids and antibiotics, and dealt with shock, PTSD, fear, unexplainable emotions, hormones, and severe physical pain.
Eleven days later, at 24 weeks 6 days, our baby GIRL was born via emergency Caesarian. She was 1 lb 11 oz and 12 inches long.
After stabilization, she was taken to the NICU. She was there for many months. Each nurse and neonatologist who worked there loved on her at some point.
Our Journey Rose. I held her for the first time at 26 days. Before then I “held” her through the sides of the incubator.
She had heart surgery (PDA ligation) at three weeks old, several severe bacterial infections, quarantined with Infection Disease concerns, many antibiotics, IVIG transfusions, many pricks, Grade IV, Grade II & Grade III brain bleeds, PT, OT, and more. Here she is at 21 days old.
After 117 days, Journey Rose was discharged. We said goodbye with love, tears, gratefulness. Thousands of people prayed for her. The nurses and doctors worked 24/7 to save her life. During Christmas 2014, she was fighting an infection and we feared for her life. This Christmas, she’s walking, talking, drawing on the couch, and opening gifts under the tree. BELIEVE.
I have no idea if this encourages you in some way, but I sure hope so! Please reach out to me if you need support.
If you’re feeling fearful and discouraged and don’t know how to process, please contact me.
I wasn’t emotionally stable or able to celebrate her birth and her life for many months — but I’ve worked through this, and now we make up for it (and more) every day! Here we are Christmas tree shopping (2016).
(If you want to read more of our story………here is a link to many of the posts I initially wrote on Facebook during that time.)
Here are some of our favorite items for a NICU parent. (I’m sure I’ll update this as I think of more):
- SNUZA: Our baby came home on O2 and had that support for 3 months after returning home. She was also on a monitor the insurance covered. So at 7 months old, for the first time, we wouldn’t be notified if she wasn’t breathing. We bought the Snuza and it immediately gave peace of mind. You attach to the diaper and if baby’s breathing stops, it vibrates to stimulate a breath. If that doesn’t work, it beeps and wakes up the parent. This happened multiple times and we’ll be forever grateful we invested in the Snuza.
- DIAPERS.COM: Have your diapers (and everything else) shipped directly to the door! In over two years, I never once purchased diapers in a store. FREE SHIPPING if the order is over $50. I’m going to mention them so much in this post you’ll think I’m an affiliate. I’m not! Just love them like crazy.
- WATER WIPES: The human body is sort of like a sponge. You don’t want your little one aborbing chemicals from diaper wipes. We’ve used Water Wipes ever since Journey came home. They’re effective and flawless. Get them at diapers.com!
- BAMBO DIAPERS: Again, you don’t want your precious babe to have chemicals in their diapers. But not all “healthy” diapers work that well. Bambo Nature diapers are awesome. Get them at diapers.com.
- NOSE FRIDA: Let’s hope your baby never gets sick. But if that runny nose hits with a small cold or teething, a NoseFrida is worth it’s weight in gold. It sounds gross, I know. But once you try it, there’s no going back to little ineffective suction tools.
- EXTRA PUMP KITS: I had to pump for 14 months! The daily pumping routine was brutal. But it was made easier by purchasing multiple pump kits. Spend the money – it’s worth it. You can let the parts build up in a container (take them apart) and then wash and steam them all at once. Don’t put the load of cleaning every time you pump on yourself. You even might get your husband to do the daily wash routine for you!
- PANASONIC LUMIX G: This is a bigger spend, but we were taking all of our pics through zip lock bags with our phones. The lighting was bad, as were the photos. We invested in a Panasonic Mirrorless camera, and the change was night and day. We wish we’d done it sooner. They’re easy to use and do great in low light.
- SPROUT FOOD PACKETS: There are quite a few organic food packet options out there. Sprout is different in that they bake their fruits and vegetables instead of boiling/pasteurizing. They do this to preserve more nutrients. Whole Foods and diapers.com!
- BURTS BEES BABY: Burts Bees makes organic all-cotton baby clothes. We’ve LOVED them. They are the cheapest out there, but they aren’t crazy expensive either. Our little Journey has definitely enjoyed a lot of her baby hood in Burts Bees. You can get them at diapers.com.
- SIGNING TIMES: This DVD series has been HUGE for our little girl. One reason babies/toddles fuss before they can talk is because they’re frustrated. They don’t know how to tell you they’re hungry without screaming. We let Journey watch the Signing Times DVDs (that’s all we let her watch at first) and the results were AMAZING. She was able to communicate with us – tell us she was all done, hungry, wanted up or down and wanted more. The instructor is Rachel Coleman. Best investment ever. And don’t worry if your little one doesn’t seem to get it right away. They are… and suddenly you’ll be scrambling to watch the DVD to see what they’re trying to tell you!
- MEDELA TRAVEL PUMP: Don’t limit yourself. We even travelled from California to Tennessee while I was pumping. The pump is pricey, but it was WAY better than a hand pump, and let us be free with our new baby when she was ready.
- STROLLER WITH LARGE UNDERCARRIAGE: We purchased a stroller that could easily be taken apart, had an adaptable car seat and most importantly, had a HUGE storage area under the seat. This has been SO nice. Many strollers, even pricey ones, don’t have storage! We purchased an UppaBaby.
- AVOID CHEMICALS: Many nursery manufacturers are offering chemical free furniture now. Pay attention to the disinfectant cleaners, bedding and other items you place your little precious in. You’d be surprised how many things are toxic, and we don’t even know it.
- ASK FOR MILK: Even though I was pumping, my supply was low. But guess what? I found loving moms in California, and also where we travelled, that brought milk they had pumped for our little girl. It might sound weird, but it’s actually VERY common. Mother’s milk is SO GOOD.