So about a year ago, I shared my road to becoming a mom. (If you haven’t read yet, you can check out part one, two and three here!) It was obviously a very tough road. We started the process fourteen weeks earlier than we had thought. We were not ready in any capacity of the word, but we had to figure it out. Getting to this point wasn’t the end, it was just the beginning. We were now starting our NICU journey. Journey is a really nice word for terrifying rollercoaster. I was officially a NICU mom. The hardest job I’ve ever had. Something I wouldn’t wish on my worst enemy. Something I wear with pride.
As September is NICU Awareness month, I wanted to share a little bit about my story and what I learned in the NICU. Now, obviously my thoughts and opinions are just that, and also related to a preemie experience in the NICU (not all babies in the NICU are preeemies), I am staying in my lane! I’m also offering a few tips I’ve learned along the way, and ways you can help if you know or may know anyone experiencing a visit.
As a little bit of a recap, our son Owen was born at 26 weeks and 1 day. Owen was born in late September 2017, and wasn’t due until end of December. The night he was born, after I was out of recovery, they wheeled me up to the NICU to see our son. He was struggling to breathe at birth, so he was intubated right away. He lie in a tiny isolate, with the top off, so we could get a good look. They started running down his stats, and threw a lot of information at us. This was my first time inside a NICU. My head was spinning. I just kept staring at him, finally getting to see what was growing inside of me. He was 2lb, 3oz, and 14 inches long. A good size for a 26 weeker they said! While he was so tiny, I couldn’t help but think he was so big! I had just barely began to show on the outside, so I thought he was still the size of an avocado, and couldn’t believe that was inside of me!
Fast forward to the next day, one of the first things they tell you in the NICU is to expect to be here at least until your due date. That was where things really got real. It was close to 100 degrees out, and we were going to be here until almost NYE. I was sure we’d be out before then. I just smiled and said of course! The first day in our new “home” we got acquainted with the nurses. They had already put a “Welcome Owen” sign up in our space. Our first nurse in the NICU was named Megan (easy I know!) She was amazing. She was kind, and obviously passionate about her job. She just kept telling me how cute Owen was. And the way she said it made me feel he was cuter than most! And of course he was! She showed me what everything was in his room. What all the cords and tubes were going in and out of our son. And patiently repeated herself a million times when I asked again and again. She walked me through what all the monitors meant. And what all the beeping meant. There is so much beeping. I can still hear it in my sleep. When I watch old videos of Owen in the NICU, and hear those beeps, it’s very eerie, and takes you instantly back. I jumped at every single beep. She assured us they were all ok. And told us if they don’t coming running into the room, don’t worry! Easy to say, harder to do.
Tip Number One of the NICU:
Lean on your nurses. They will become your friends and family. They love your child almost as much as you do. They are the heart of the NICU and IMO know more about your babies then the doctors. If you like a specific nurse, ask them to be your primary nurse. I didn’t know this was a thing, and was soooo lucky to have a day and night primary nurse want to jump on Team Todd. Jessica and Erin. Just wanted to give them a shout out because they are AWESOME! They will be in our lives forever. These nurses have HARD jobs. It doesn’t turn off when they clock out. They are invested, and they work long days. They are smart. More detail oriented than anyone I have ever met. You will be amazed at how they can handle these tiny fighters and not bat an eye. If you know a NICU nurse. Give them a hug! Tell them thank you. The Jackson Chance Foundation has an award to honor NICU nurses. Nominate your nurse, and help them win a free vacation, they deserve it! Click here for a link to nominate!
Next came our first time experiencing rounds. This is where your team of doctors (and by team I mean like 7-10 people!) rotate patient to patient and run down stats and the plan for that day. So. Many. Words. Words I’ve only heard on TV shows, words I never thought I’d hear at my child’s bedside. It was hard to comprehend. All I kept thinking was how smart these people were! How do they know how much to give/how to treat/what he needs! And the honest thing is, they don’t always know. They too, are human. I learned along the way that getting to discharge is a long road. You have to try things out and see how the babies react. Sometimes you push. And Sometimes you let them rest. They might try something and it doesn’t quite work, or your baby wasn’t ready (they are on their own timeline for sure). It was often hard when you progressed forward, and their next strategy was a step back. It’s not easy to feel like you are regressing. But sometimes to take two steps forward, you have to take one step back. You get a lot of doctors when you are in for a long time. While they are professionals and know their stuff, you know your child.
Tip Number Two of the NICU:
Ask Questions. Be an Advocate. You are the voice of your child. I learned to speak up and give my opinion. I asked a ton of questions. And then I would ask those questions multiple times to different people. I would often get different answers or different explanations. While this seems frustrating, we all don’t learn the same, and they do not all teach the same. Ask all the questions if you are not sure what is happening, or if you feel a different approach is needed. Each child is different. And guess what. They listen. You are a member of your child’s care team. Your opinion matters.
The NICU is a place that will leave you drained. Mentally, physically depleted. It is easy to become consumed with this world. Obviously your child cannot leave. And you do not want to leave your child. The waves of guilt still crash over you, and you are still trying to figure out which way is up. I know how easy it is to never leave the room. Once you get a chance to finally hold your child, you never want to let go. I would often hold Owen from feed to feed. Babies are on strict schedules in the NICU. 8, 11, 2, 5. Those were our checks. Every three hours you did a diaper change, temperature check, blood pressure, and feed. I would always help with the checks, and then hold Owen during his feeds (via g tube most of the time), and we would have snuggle time all the way to his next check as long as he would tolerate it. Our nurses would often ask if I had eaten, or pumped, or drank anything. A lot of the time, the answer was no. They would always tell me, you need to take care of YOU.
Tip Number Three of the NICU
Take care of yourself. It’s easy to forget the day to day tasks, like simply eating. I get how you can be consumed by what is going on in front of you and that you can lose touch of reality. Our nurses always said to make sure to take care of ourselves. Go for a walk. Go out to dinner. Take a yoga class. Drink a glass of wine. It’s ok. Seriously. Don’t forget who you are. That baby needs the best version of you. Not the zombie version. Sleep, eat, and take breaks.
In all honesty the NICU was a place that terrified me at first. I didn’t want to be there. It wasn’t fair. I had known a few friends that had brief NICU stays, but nothing near the longevity that we were facing (and trust me, I know any time in the NICU, is too much). It was daunting and it was Groundhog Day. Day in day out. Same routine. Even on the weekends. I often wondered if it would ever end. I hit my breaking point more than a few times, and would just spontaneously cry out of nowhere. It’s hard.
Somewhere about a month in, I found my groove. I realized we were in for the long haul, and I buckled down. The NICU slowly became my sanctuary. My safe place where people understood what I was going through. Where people understood what was going on with my child. Where I could ask more than questions about his care, but questions about raising a child! I had a 24 hour hotline to the best nurses, and doctors. I asked them everything and anything. From breastfeeding, to pumping and dumping (we all know I like wine), to what type of laundry detergent and shampoo I needed! This is where nurses become friends. Our room became home. We watched Owen hit milestones that no one else really understood. We celebrated every ounce. And every poop diaper. We had first eye opens (they were fused shut), first baths, and first bottles. All of our first holidays were in the NICU. We celebrated our due date. And the first time we had no wires or tubes. And finally 105 days later, the day we were going home. We had made it. We had gotten there. While the NICU can be terrifying, we also had the chance to literally watch a miracle in the making…And for that I am forever grateful.
A lot of people don’t know how to help. I was fortunate to have a great support system. Here are some ways you can show you care, or how you can help:
- Offer to take the dog for a walk, or clean their house.
- Gift cards for meal delivery are a godsend.
- If they have other children, offer to take them for an afternoon, or to babysit.
- Text occasionally, never expecting anything in return. Just knowing you are being thought of is huge!
- Visit, if allowed. The NICU is isolating, having a familiar face or friendly conversation goes a long way.
- Offer to help spread the news of what is going on. It can be a lot to repeat yourself a million times in a row
- Make a Donation. The Jackson Chance Foundation helps provide free parking to the families in the NICU, so they can be by their babies side as much as possible. Donate here.
- Pray. Pray a lot.
The below is one of my favorites, for all my preemie and NICU moms out there!
~*~How Preemie Moms Are Chosen~*~
By: (Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
Instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew. Forrest, Marjorie, daughter. Patron Saint, Celia. Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally, he passes a name to an angel and smiles.
“Give her a preemie.” The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just the right amount of selfishness.”
The angel gasps, “Selfishness?! Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word.
She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see–ignorance, cruelty, prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air.
God smiles. “A mirror will suffice.”