photo by Kristin Jean Photography
by rebecca stewart | extended online version
Imagine that you’re cruising through your pregnancy, you’ve passed important milestones, and everything is going well. You’re 26 weeks along, heading into your 25-week appointment experiencing some slight pain, not feeling overly comfortable, but it’s also not registering as something to worry about. You get to your appointment where you mention your discomfort, and the nurse says the doctor will probably examine you today. The doctor calmly says, “I don’t know how to tell you this, but you’re 6cm dilated; have you been feeling any contractions?”
The appointment is at 8am, you arrive by ambulance to the hospital at 10am where, unbeknownst to you, the NICU doctor has met you fully equipped in the elevator, and despite the NICU and delivery teams’ best efforts to hit the pause button on your labor, your baby arrives at 4pm…Fourteen weeks early. He is 2 pounds, 12 inches long; you get 10 seconds of skin-to-skin contact before he’s intubated and rushed to the NICU. It’s been eight hours.
A shocking and traumatic way to start one’s parenting journey, Anjali and Robert Smith, along with their precious son Luca, were in for a fight. In the immediate aftermath, Anjali recalls thinking, “Oh my gosh, we have a baby, and I haven’t even been able to see him and meet him and have time with him.” After spending some time in recovery, Anjali and Robert were able to go to the NICU where they could get their first real look at their boy and the first of A LOT of information with a merry-go-round of questions whirling through their minds: Is he okay? Is he healthy? Are we okay? What is this going to look/be like?
Soon, they settled into a routine, though Anjali felt at a loss - prior to their experience, she hadn’t known anyone who had gone through something like this, which led her to seek out others in similar situations.
Because one doesn’t go in instinctively knowing how life in the NICU works, nor is it the same for everyone, Kara Thomae, Certified Registered Nurse at Billings Clinic NICU, offers up these tips for NICU parents:
- You are your child’s best advocate. Communicate with your team, be involved when you can, and never be afraid to ask questions.
- She adds, “Being a NICU parent is physically and emotionally draining. Let your caregivers know what you need and trust that we are taking great care of your baby when you have to be away. No one ‘just works in a NICU,’ this is where we want to be. We are highly trained and very passionate about what we do. Allow us to be part of your village.”
- Journal your journey, even if it’s just writing down the daily milestones. It’s a good way to look back and see all the progress your child has made, especially when the days feel long.
- Celebrate the “little wins” rather than dwelling on the challenges; sometimes, it can be a marathon.
- Find a social media outlet to share your experiences, such as Facebook or CaringBridge. Family and friends want to be there for you, and this is a good way to share the information you want to without being overwhelmed with texts and phone calls. This allows you to focus your time on your baby.
- Take care of yourself too. You can’t be there for your baby if you’re exhausted or sick.
Indeed, Anjali ended up posting an update for friends and family on Instagram, and support poured in - locally, people wanted to help and given that “we couldn’t focus on anything else and to have people say, ‘We’ll take care of your basic needs,’ was huge.” Beyond that, Anjali started gaining connections with other NICU moms across the country, which would ultimately lead to her co-founding NICU Families Collective, something Anjali was dreaming while they were still in the NICU, but we’re getting ahead of ourselves…
The Outer Circles: Supporting families with a child/ren in the NICU
photo by Patrick McManaman via Unsplash
- Respect parents’ privacy; allow them to share their stories unless you’ve been asked to relay information for them.
- Offer words of encouragement and support without minimizing what they are going through. Sometimes the best thing you can do is listen.
- Offer help with things at home- other children, pets, laundry, meals, etc., so they can focus on being present in the NICU.
- If you want to give gifts, focus on the practical needs during hospitalization. Meal, gas or coffee cards, parent care baskets (snacks, lotion, books, etc.), self-care items, journals, and monetary gifts are good ideas. While preemie clothes are cute, they often never get used. Saving baby gifts for the homecoming helps give families some normalcy too.
Early in their stay in Billings Clinic’s NICU, Luca experienced some scary setbacks that included a Grade 4 brain bleed. As the doctors explained what was happening and potential outcomes, Anjali says, “I remember thinking, how can you be telling me who he is…I don’t know him yet; let’s wait and see.” It was a week before Anjali and Robert were able to hold Luca, something that Anjali describes as being the sweetest experience ever; “It was just what we needed to keep going.”
As the NICU team monitored Luca’s brain bleed, they began talking about the very real possibility of going to Denver to the Children’s Hospital, as we don’t have a pediatric neurosurgeon here. About 3-weeks in, the Smiths were on their way to Denver, with Robert driving their things down while Anjali flew down with Luca. He would have his first surgery before his dad arrived, which was difficult for the new parents.
A couple of weeks into settling into their Denver routine, COVID hit. Though Anjali’s family was able to visit before the hospital shut down to visitors, their experience was crazy as everyone struggled to adapt to changes in protocol. Anjali and Robert adjusted to being with Luca together on surgery days, but otherwise had to visit him separately. Something that turned out to be a blessing in disguise, as it pushed the parents to be more proactive in their own self-care than they might have otherwise been.
Over the course of Luca’s 104 days in the NICU, he would have four surgeries - each time, Anjali says, it felt like going to war; “It felt like a spiritual thing and a heaviness, every time he went into surgery.” Yet, with a refrain of “He’s okay, he can do this, he’s resilient.” Though Luca experienced some setbacks along the way, and they weren’t released by his May 4 due date, the family arrived home together on Anjali’s first Mother’s Day.
photo by Kristin Jean Photography
Now two years old, Luca still has a full schedule of therapies, and he has met many milestones that they weren’t sure were possible. Their time in the NICU, explains Anjali, really taught the parents how to best advocate for their boy. Anjali shares that things have calmed down since their NICU journey and are now in a phase that she calls “putting in the work,” elaborating, “We work alongside him and a team of people who are all helping Luca reach the same goals and milestones. He is moving mountains, and I am incredibly proud of him and all he has overcome.”
NICU FAMILIES COLLECTIVE
Founded by Anjali Smith, who was inspired to create NICU bags for NICU families in her area, and Gaby Azocar, who created a line of 100% organic cotton onesies and caps designed for micro-preemie and preemie babies in the NICU, NICU Families Collective is all about providing tools, connections, resources, and education. NICU Families Collective recognizes that having a preemie/NICU baby is traumatic, so it’s coming together on this healing journey.
Anjali notes that she doesn’t believe that we should tell people how to be a NICU parent, rather provide resources that they can pick and choose from.
- Started as a Facebook Group (which is private) that has connected mamas from all over the country.
- June 2021 saw the launch of NICU Families Collective Instagram presence.
- Anjali and Gaby have been interviewed for podcasts and have (and continue to) conduct various informative interviews, available primarily in the Facebook Group.
When Anjali first arrived at the Children’s Hospital (she had flown with Luca while her husband drove down with their necessities), she remembers thinking she was a hot mess. She needed all the things - “I need to eat, I need to shower, I need a toothbrush…” and a nurse sent her to the volunteer center, where she received a bag of self-care items. This care sparked the inspiration for the NICU bags that she creates for mamas amid a NICU journey at our Billings’ hospitals.
How you can help:
- Monetary donations- Anjali buys a lot of organic items for moms/babies wholesale from Chantelle Biscoe (another NICU mama at Bitterroot Babies)
- Preemie outfits
- Coffee gift cards
- UberEats gift cards
- Water bottles
- Face wipes
- Journals (check out this guided journal, Our Journey: A NICU Journal by NICU mom, Kassie Specht)
- Fuzzy blankets
- Breast pads
- Dry Shampoo
- Small stuffed animals
- Hand lotions and chapsticks
- Disinfecting wipes
- Shop Anjali’s Amazon list
Items to donate directly to your local NICU:
- Scrapbooking supplies: cardstock, stickers, adhesives, etc. Kara shares, "A lot of NICU nurses are crafty and try to create memories, celebrate holidays, and milestones for families. "
- New blankets or preemie and newborn-sized clothing. The NICU’s items get a lot of use and washes, so wear and tear is greater than normal. They also give new items to families when possible.
- New books to give to families.