Originally posted March 4, 2021
Updated: April 27, 2021
Anyone that has ever spent any time in a neonatal intensive care unit (NICU) knows how scary it can be. There are monitors, alarms, IV consoles that look like rocket ship control panels, and every sort of medical machine imaginable. You look at it all and you look at your baby and it quickly becomes overwhelming.
It isn't any easier for siblings of NICU babies. Not all NICUs allow children under the age of 14 to visit, even if they are siblings. But if yours does, there are things to be aware of before you take your other children in to see their sibling. A NICU is a scary place for siblings. They might not fully understand everything that is going on, and sometimes they don't need to see their sibling in the condition they're in.
Even on the best days, a NICU is a boring place for children. They have to be quiet and still There isn't always a television in the room and there aren't usually any books, magazines, or toys. With the pandemic ongoing, most hospitals are not even setting out magazines anymore. If it can be touched by multiple people, it's probably been removed. You can bring distractions from home if you've got time to think about things like that, but often that isn't the case.
After our family spent seven months in the hospital (most of them in the NICU) when our daughters were born prematurely, we knew we wanted to give back. At first, we didn't have a clear idea of what we wanted to do, but we knew we wanted to help. One night it hit me- a perfect way to help families going through what we had. Sadie's Purpose was born.
When our daughters came into the world three months early we had no idea what to expect. At birth, things were actually pretty great. Both girls were healthy. For two weeks it seemed like everything would be okay, but then it all went south very quickly. Both girls got an infection called necrotizing enterocolitis (NEC).
The doctor called us around 2:00 a.m. to tell us what was going on, but they said we didn't need to head over there and they weren't sure what was wrong yet. He told us that Sadie was the sickest and he wanted us to be prepared to come to the hospital if she continued to deteriorate. They had moved her from her step-down room back to an ICU room.
Having other children at home made it impossible to jump up and drive nearly three hours in the middle of the night. We decided to wait till morning and find someone to keep our other kids, and then we'd head to the hospital.
It was a whirlwind of chaos that ensued and by lunchtime the next day we were heading to the hospital, kids and all. All we knew is that Sadie had quickly gotten very ill and was moved across the street to a different hospital with surgical capabilities. We got to the new hospital with our other children and were told where to go to find our daughter.
As soon as we got to the door of her room, the staff stopped us. They advised us that they didn't think the kids should see their sister. A volunteer took them to the family room to sit with them while we spoke with Sadie's new doctor. What they remember from that afternoon and what my husband and I remember are very different, and that's how it should be.
My kids remember the kind volunteer that colored with them and showed them what happens when you put Peeps in the microwave. They remember getting snacks and drinks and laughing with the people trying desperately to make sure our kids were not too afraid of what was happening.
I remember seeing a baby I didn't recognize. She was on IVs and an oscillator (a special ventilator designed to hyperventilate the most critical of patients), and there were more medications than I could count. Every alarm that could possibly go off, was going off. It was traumatizing and terrifying, and only recently have I gotten to where I can really talk about it. I was so thankful we decided not to let our other kids see her that way. They did not need those memories.
We knew we would not be heading home again any time soon. We were in that NICU room to stay until things improved or the unimaginable happened. But we had left our home in such a rush that we didn't have anything at all. Nothing for our kids to do, no clothes or toiletries to stay in the hospital. Nothing. When your child's life is on the line, those things simply do not matter.
Over the next few weeks, Sadie stabilized and we were able to bring her siblings in to see her. There were still some rough days here and there and we'd have to rush over, again forgetting distractions for the kids. The NICU staff would print coloring sheets and scrounge up highlighters for our kids to color. They were great. But there was never any activity ready to go for siblings.
Sadie's Purpose aims to change that. Having first-hand experience inside a NICU allowed us to see what families need. The seven months we spent in the hospital trying to navigate the most challenging part of our lives is our "why." It is the driving force behind Sadie's Purpose.
Our mission is simple. We want to make life a little less stressful for families with babies in a NICU. We plan to do this by preparing and distributing family support packs to NICUs that they in turn can give to families as babies are admitted. We will have two different support packs; some will be made especially for children and some for parents.
The children's packs will contain things like:
Small, quiet toys
The adults' packs will contain necessities like:
small handheld mirror (for holding in front of you to look at your baby as you hold him/her)
On one of our worse days, I rushed out of the house and left behind deodorant. I had to buy it in the gift shop and it was $7.00 for a tiny travel-sized stick. For parents already missing time at work to be with their babies that is an added expense that they don't need.
As we expand our presence we also plan to familiarize ourselves with local restaurants so we can add gift cards to the bags, This would mean parents could step out for a break and dinner. We left the hospital each night for about an hour to eat and we know how crucial getting outside of those walls is for parents. You can't be there for your baby if you're not there for yourself first.
Sadie's Purpose is still in the early stages of incorporation, but we have a clear vision of what we want to do. We are officially a registered nonprofit with the state of Alabama. This means we can legally accept donations. However, we are not officially a 501 (c)(3) nonprofit through the IRS yet, so donations are not tax-deductible to the donor at this time. While this might not be of concern to many donors, it is information I feel is important to share with you.
The first hospitals we will work with will include local hospitals in the north-central and north Alabama area, including the hospital that cared for Sadie. As we grow we hope to expand the area to include more hospitals so we can help even more families. We will fund our program through donations and eventually grants as well.
Our nonprofit is in its infancy and we are so excited to watch it grow and see how far we can take it. If you want to help us in any capacity, we'd love to hear from you.
We're looking forward to growing with you. Thank you!