This is the short version of our journey in the NICU, along with a compilation of tips and product info that proved helpful to us along the way. For parents like us who didn’t know what to expect, I hope this is helpful and encouraging!
I was 23 weeks 2 days pregnant, after several losses and what was a near-perfect pregnancy turned into a long journey. I began experiencing severe back pain so we went to the ER — thinking I’d need a quick check and we’d head home. But I was quickly moved to L&D and placed in the Trendelenburg position for what would be 11 days. Many shots of magnesium, terbutaline, steroids, antibiotics, and dealing with shock, unexplainable emotions, hormones, and of course physical pain. Later I realized even PTSD would be an issue.
The nurses in the Santa Monica UCLA hospital kept me going, hour by hour.
For over a week I wasn’t able to even sit up fully even one time. Sleep was difficult due to near constant pain. Baby had moved very, very low….so much constant pressure but my body (and my heart) wasn’t ready. The human body is not designed to lay flat for 11 days straight! The nurses at the Santa Monica UCLA hospital were truly incredible. They kept us going. And gave me hope. They said that every day our baby stayed inside was a massive victory, and encouraged me to just make it to the next nurse’s shift.
After eleven days, and at 24 weeks 6 days, our baby GIRL (surprise!) was born via emergency Caesarian. She was 1 lb 11 oz and 12 inches long. After stabilization, she was taken to the NICU. She stayed there for about 4 months (117 days). Each nurse and neonatologist who worked there loved on her at some point.
They told us the NICU would be a roller coaster, and that was in no way an exaggeration. Journey had heart surgery (PDA ligation) at three weeks old, several severe bacterial and/or viral infections, quarantined with Infection Disease concerns, many antibiotics, IVIG transfusions, many pricks/IVs/blood draws, a Grade IV, Grade II & Grade III brain bleeds, PT, OT, and more. The main picture at the top is her at 21 days old.
After 117 days, our 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. Now she’s walking, talking and drawing on the walls!
Sandi, Journey and Kyler. We are so grateful and blessed for our little fighter!
Every NICU journey is going to be different. Here are some things we experienced, and wanted to pass along:
Before our time in L&D and the NICU, my husband and I did not truly understand the role nurses play. They do so much for you. Both doctors and nurses are crucial, but the nurses will see you through every minute, hour and day. They’re the ones who see the details, give the recommendations to the doctors, come to the defense of the patient (and the baby’s mom/dad), and help explain over and over.
Our experience with NICU nurses and doctors was phenomenal. But there were times we had to have uncomfortable conversations. Once we had to request a different nurse, and that was difficult. But trust your instincts. Protecting the life of your precious little is your top concern. You’re their best advocate. Trust your gut. You as a parent are under undeniable stress — you need someone you click with, you trust, you understand, and who actually listens to you.
This point isn’t a debate about vaccinations. It’s a warning about the schedule. When we were in the NICU, we were pressured in big ways to vaccinate Journey according to “schedule.” One time CPS (child protective services) was even mentioned (threatened)! The argument was, “We go by chronological age for vaccination schedules.” (Everything else was adjusted to due date.) But guess what happened as soon as we were out of the NICU and with a pediatrician? He told us that if they had vaccinated her in the NICU, they probably “wouldn’t have taken” and he’d have to re-administer them anyway. We were shocked. And our pediatrician was part of the same UCLA hospital and recommended by the NICU. Plus, there are no studies that prove scientifically that vaccines are safe for micropreemies. It’s worth considering to delay, decline, wait until the science proves safety. They’re already high risk…
Nobody understands the pressures of the NICU until they’re there. For me personally, I was recovering from shock, 11 days in L&D, a caesarian and pumping around the clock. My husband was tired and stressed from being with me through it all 24×7, and still working full time outside the home. We were afraid for our daughter’s life – the outcomes were unknown due to the severe brain bleeds, infections, open PDA… the list goes on. Every single hour of every day was a challenge. Sometimes we both were just overwhelmed. So tired. That’s normal. Just love each other through it. Know you’ll come out stronger! Try to give patience and grace. Think on what is TRUE about your relationship.
I will never forget the hours after my emergency birth. My baby girl was rushed away, and I was taken to a tiny hospital room, and told that I would need to pump milk around the clock. After a few weeks, I was told I could skip a session and get a segment of 5 hours sleep in the night.
That turned into 14 months of pumping! A mom’s going to do what she thinks she should do. But it was brutal. It was made easier by purchasing multiple pump kits and renting a quality Medela pump. Spend the money – it’s worth it. You can let the extra parts build up in a container (take them apart) in the fridge, and then wash and steam them all at once.
Don’t put the load of cleaning every time you pump on yourself if possible. You even might get your husband, or a neighbor or friend, to help with the daily wash routine for you! You need your rest.
The NICU is a home to grief. But it’s also the home of miracles. We asked our friends to pray, and pray and pray. And we saw miracles. When a doctor told us her brain bleeds “self-resolved” we knew more was at play. Always hope. Speak LIFE to your little one when you’re doing kangaroo care. Speak strength. Our little Journey fought through so much. Your baby can too. Speak words of affirmation to them. Sing to them. It will help their spirit and your bonding.
I’m sure I’ll update this as time goes on, but here are some of the things that proved to be life savers for us as first time parents and first time NICU parents!
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.
The human body is sort of like a sponge. You don’t want your little one absorbing chemicals from diaper wipes or diapers — They’ve had to endure enough during their NICU stay! We’ve used Water Wipes ever since Journey came home. They’re effective and flawless. Bambo Nature diapers are awesome. Not all “healthy” diapers are created equal. For Journey’s entire time in diapers, I can’t remember a single time Bambo Nature diapers even leaked! Now, Young Living has Seedlings Sipes, so we recommend those too. I can help you with your wholesale account if you don’t have one yet. You won’t those on your monthly subscription order, along with the Seelings Diaper Cream. We also love Young Living’s Tender Tush.
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. They need to breathe freely.
Even though I was pumping, my supply was low, especially the longer that time went by and since she was never able to latch consistently. But, guess what? I found loving moms in California, and later wherever we travelled (KY, TN), who brought milk they had pumped — and gave it to us for our little girl. It might sound weird, but it’s actually VERY common. Mother’s milk is SO GOOD.
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. Don’t forget to get really good pictures AND videos in the NICU. The videos will help later when you forget (and you will) so many of the details or even how small their tiny toes and hands are.
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. Get them at Whole Foods and diapers.com!
Burts Bees makes (or used to) organic all-cotton baby clothes. We LOVED them. They aren’t the cheapest out there, but they aren’t crazy expensive either. Our little Journey has definitely enjoyed a lot of her babyhood in Burts Bees pajamas especially. You can get them at diapers.com.
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! If you want to check it out first, just go to YouTube.
Don’t limit yourself. We even travelled by car from California to Texas to Kentucky to Tennessee to Florida and then back through Alabama and all the way up to Idaho — 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 and off of Oxygen.
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.
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. We love all things Young Living….I highly recommend setting up an account. That’s my side gig so please contact me and I’ll set you up on all your baby (and personal care and home products!