What I’ve Learned During the Journey to Become Rory’s Mom

Growing up I knew one thing for sure – I wanted to be a mom. Whenever someone asked me what I wanted to be, mom was at the top of my list. I spent a lot of time imagining myself as a wife and mother, but it turns out my journey to motherhood would not be an easy one.

My challenges started with a few years of infertility. When I finally got pregnant, I was plagued by a very small blood clot that formed in the placenta that would periodically produce large amounts of bleeding. Each time I bled I was convinced I was pregnant no more. I was crippled by anxiety. I tried to convince myself that this baby was the one we were meant to have, that he was already a miracle because he came to us after we’d given up hope. After my first trimester, the bleeding stopped and I started to feel pregnant. At 16 weeks I was lucky enough to start feeling movement. Our baby was really there! We were so excited for our 20-week ultrasound. Our excitement was quickly replaced by fear. The technician and Maternal Fetal Medicine (MFM) doctor spent a lot of time pouring over the image on the screen. Pointing, discussing, wondering…was my cervix starting to open? They determined it was closed and I was put on progesterone to keep it that way. Hopefully. During my 22^nd week I saw both my OB and the MFM doctor. Both determined that things were still fine, but because I was measuring very short, I’d be looking at bedrest if things changed. On the day my pregnancy calendar changed to 23 weeks, my life changed forever.

I was starting to dilate. Even as I type those words now, I can’t believe them. At 23 weeks, my baby was coming. 17 weeks early. We had decided not to take extraordinary measures during delivery. If he survived the birth and showed signs of life, then we wanted them to save him. Thankfully we were at a hospital that would do so. I am frequently heartbroken by stories from those who delivered at hospitals that would not take a chance on a 23-weeker.

At 23w2d my son was born. That was the day I became Rory’s mom. He had a prolapsed cord, but he made it through. My little miracle. What a fighter he is. He fought for breath. He fought through NEC (potentially fatal intestinal disease) and two surgeries. He fought through a PDA (a hole in the heart that is typically closed by the time a full-term baby is born). He fought through ROP (exposure to oxygen causes the blood vessels in the eyes to grow rapidly). He learned how to suck, swallow and breathe. He learned how to be okay with stimulation. He rarely cried. He charmed the NICU staff. He fought hard for 134 days to come home with us. What an amazing day that was. Now he’s 21 months. I still can’t believe he’s a toddler.

 

Now it’s my turn to fight. After our lives have settled down and we learn to cope with a toddler, my troubles have taken over. In recent weeks I’ve found myself plagued with anxiety, depression, and PTSD. I try to focus on my son and how fortunate we are. I tell myself this every day. But guess what? It doesn’t erase it. It doesn’t erase the trauma we went through before and after he was born. It doesn’t erase those guilty feelings. You know the ones I’m talking about. The ones where you wonder if you could have done more. The ones where you mourn your pregnancy and you feel angst or jealousy related to your pregnant friends. The ones where you feel like your body completely failed your baby. It doesn’t erase the constant worry. No matter how thankful I am. No matter how much I want to be in the moment with my son, no matter how many times I kiss him and hug him and tell him I love him. No matter how proud of him I am…it’s there. Those fears, that anxiety, that lingering sadness, those flashbacks. Oh, those flashbacks. I’m getting help to deal with the challenges I’m facing because I want to be the best mom I can be to the son who fought so hard to survive.

NICU Parents need to know that the trauma they experienced is real. They need to know that everything they feel is okay. They need to be given resources to help deal with what they have been through. They need to know that just because they are lucky enough to walk out of the hospital with their baby, their worries aren’t over. If they want it, they need to be able to be part of a network of families who can relate to their NICU journey. Because as much as family and friends love you, they don’t understand lockdown, obsessive hand washing and sanitizer use, and your reluctance to have them come to visit. A fellow micro preemie mom and I have started a NICU parent support group in our area for exactly these reasons. We are committed to providing a community where NICU parents fit in, where they can get the support they need, no matter where they are in their journey. Our hope is that families everywhere have access to similar support. NICU families don’t just need support from other parents. They need it from everyone around them.

If you are not a NICU parent, but want to know how you can help, here are a few ways.

1. Set up a meal drop off schedule. Reach out to anyone and everyone you can think of and then pick people who might not help and contact them too. We received donations from people I wouldn’t have expected. People left food on our porch, in our garage fridge, and even in our mailbox. After spending all day at the hospital it was so nice to come home and be able to eat.
2. Offer to help with child or pet care. Our neighbors would let our dog out so we wouldn’t have to rush home. Family would come take our dog for a week at a time which was especially helpful around surgeries, bad weather, etc.
3. If you ask to visit the NICU, be prepared to be told no. There were some days we didn’t know hour to hour how our son was going to do and visitors were an additional stressor. If you are approved to visit, bring food! Our cafeteria food was tolerable at best.
4. Don’t question a NICU parent’s request for you to wash and sanitize your hands, change your shirt, not smoke, etc. We are not simply being overprotective. We are following doctor’s orders, hospital procedure, and are just trying to keep our baby healthy. A common cold for you and I can be life threatening for a NICU baby.
5. If you ask for an update or send well wishes and don’t hear back, don’t take offense or assume the worst. There are days when 15 people might be doing the same thing and there’s just not time or energy to respond.
6. Just listen. This is a terrifying time for many NICU parents. Please avoid comments such as, “Everything happens for a reason” or “Everything is fine now that you’re home, right? At least you don’t have to worry anymore” or “At least you didn’t have to get big and fat.” These are just a few examples. If you aren’t sure what to say, please just listen.

We are often asked how to give back to the NICU that provided such amazing care.

1.  Ask your NICU if they have a wish list. Consider asking for NICU donations in lieu of birthday gifts.
2. Send cards to the NICU with photos of your little one(s).
3. Write a heartfelt thank you note to the staff to let them know how much you appreciate them. It takes a village to raise a child and they will always be part of yours.
4. We hear this most often from hospital staff…VISIT! It can be tough to go back, but it’s incredibly rewarding for the staff to see how well your little one is doing thanks to the care they received from all those wonderful doctors and nurses. We all know that what they do is incredibly worthwhile, but they need to be reminded. They have really hard jobs!

No matter how much research is done with the intention of preventing NICU stays, there will always be babies who arrive early or have challenges at birth. Often there is no reason. There will always be NICU families and NICU staff that need us, all of us.

 

Amy Jesse (NICU Co-coordinator for Mikayla’s Grace and Co-founder of Wisconsin NICU Parents)