Andi's NICU Story
May 31, 2019 was one of the scariest days of my life. But it is also one of the best, because it was the day my daughter, Andi, was born. It was a day that started out completely normal, but the following 71 days would be anything but.
Andi was born at 28 weeks exactly, weighing 1lb 4oz. She was considered a micro-preemie, which I didn't even know was a thing. We knew she would come early, thanks to our weekly ultrasounds and her unexplained growth restriction. We just didn't know it would be that early. I had no experience with prematurity or the NICU. We were just in survival mode, along with our daughter...who, by the way, is now almost 2 years old and thriving!
While my daughter fought for her life in the NICU for three months, I searched for understanding, comfort, hope and knowledge. But the internet can be a really tricky place. Too much knowledge can be scary or provide false hope. I couldn't find not one family with a story similar to ours with a positive outcome. I wanted to talk to someone without talking to someone. I wanted to read without being scared. I wanted hope without being naïve.
To any moms who are reading this right now, scouring the internet for hope or understanding, I want to share my experience and what helped us. I hope you can find some comfort from what we went through.
Don't feel pressured to talk.
I didn't want to talk to anyone except my husband for the longest time. No one understood what we were going through. I was angry that my daughter was born so early and so small and had to fight to live the second she was born. Explaining to friends (who had the best intentions), what I was going through, was not helpful, it was actually taxing. I didn't want to explain the medical terms and the reality of what could happen because I didn't want to speak anything into existence. I wanted to keep her in our little NICU bubble until we were all ready. Friends and family members called non-stop, asking for updates and how they could help. I didn't want to talk to them, and unfortunately, that fell all on my husband. If you feel the same way, find a point person who can field all those calls and texts. And don't feel bad for telling people you just need time. My response was always something along the lines of, 'Thank you for reaching out. Please just pray for her."
Find someone like you.
I found the greatest comfort talking to other NICU moms. They knew what I was going through. I didn't have to explain the ins and outs of the NICU that had become so second nature to me, they just knew.
Share what you want and don't feel bad about it.
I have a very public job as a news anchor so generally, I'm really open about most of my life. But when Andi was born so early and so much was unknown, I found myself keeping it all to myself. Afraid of what would happen and thinking of the unthinkable. Eventually, I decided to share her birth on Instagram, solely for the purpose of asking for prayers. The good that came from that announcement was imeasurable. I was introduced to other NICU moms, resources and support groups. The best thing that came out of that was hearing from a friend of a friend who happened to have a baby at the same NICU, at the same time as us. We are still close friends to this day! But along those same lines - Preemie Support groups on Facebook were too much for me and caused more harm than good. I joined a few initially and had to leave. Just be cautious, and know that you don't have to join those groups just because it applies to you.
NICU nurses are angels. NICU doctors are superheroes.
My husband says NICU nurses are first in line to get into heaven. He is right. I don't know what we did to deserve these NICU nurses, but I am so thankful for them.
Our NICU nurses became our extended family, and still are to this day. They may not know it, but they were nurses, caregivers and therapists all in one. We spent hours and hours every day with them for 3 months. They cried with us, prayed with us and laughed with us. Let your nurses help you, ask them questions and let them help you. NICU doctors are miracle workers and taking care of preemies is more than a job for them. They have an extremely difficult job of dealing with scared parents, finding the balance between educating us, scaring us and encouraging us without giving false hope.
All of this being said - know that your NICU nurses love your baby and have their best interest at heart, but YOU are mom and you should always trust your gut.
Take care of yourself.
One of the hardest things for a NICU mom to do is to leave the baby at the hospital. No matter how long your NICU stay is, going home without your baby is not normal. It's scary and devastating. Having to get in the car to drive, park, go through a lobby, wash your hands and change your clothes, just to see your baby is unfathomable. We're supposed to be in our sweats at home, exhausted but comfortable in a nursery. Not surrounded by beeping noises, announcements on the intercom and only touching our baby with gloves on through a plastic box. I remember the daily internal struggle of wanting to sleep but also spend every waking moment at the hospital. Why should I be at home taking a bath when my daughter is fighting for her life?
It's not your fault.
This is something doctors and nurses had to tell me over and over. My daughter was born prematurely because of the placenta and her restricted growth, not because of anything I did or didn't do. And the best place for her at that moment, was in the NICU, not in my belly.
If you work, split your maternity leave.
I recognize that I am very, very fortunate to have a boss who understood and empathized with our situation. I took the required 6 weeks maternity leave after my c-section to recover physically, and then went righto back to work while Andi was in the NICU. Although I wasn't ready to go back to work, I knew I wanted to spend the majority of my maternity leave at home when Andi was there. So I spoke to my boss and planned to take a second maternity leave/short-term disability leave when she came home from the NICU. Trust me, it was tempting to not want to go back to work. But working kept me busy while my daughter was growing. I went to work, then went straight to the NICU. I stayed super busy and it made time go by faster.
Things to buy:
Get a Zaky hand! If your NICU allows it, ask about a Zaky hand. Also: get a Mr. Potatohead! For Andi, her biggest hurdle was gaining weight. But when we're talking about gaining grams, it's so hard to see the forest through the trees. The Potato Head Project is a program that offers NICU families a free Mr/Mrs Potato Head so you can compare them to the toy and watch them grow.
Prepare for rollercoasters but celebrate the wins.
This is the number one thing I heard in the NICU and it is so incredibly true. One day your little one will be kicking butt and a discharge seems days away, the next day they could have a blood infection and you're back to square one. Remember to take the little wins but to be patient. There will be really good days and there will be really bad days.
There's comfort in the mundane and finding that routine was really helpful for us. Every day, my husband would go first thing in the morning to the NICU and take the nurses a coffee. Then he would leave and I would come in and cuddle with Andi. We went to dinner together then back to the NICU for the daily weigh-in and bedtime story. We read a story to Andi while she was in her isolette every single night. When we could hold her, we took turns rocking her to sleep and reading to her.
Make the NICU your own.
If you're like us, you'll be spending a lot of time in the NICU! Bring some of your babies things from her nursery to set up in her nook. We stacked books, stuffed animals and blankets all around her bed. After all, it was her nursery for the first 3 months of her life!
Dressing in the NICU (you and your little one!)
You'll be spending a lot of time in the NICU...cuddling with your little one! Wear your comfy pants and bring a button-up long sleep shirt (I borrowed one of my husbands extra large ones!) and leave it in the NICU. It stays clean longer because you're not lugging it back and forth. Also bring a blanket to cover the both of you up, or just leave it there.
As for your little one, some hospitals won't allow preemies to wear clothes until they are close to being discharged, at least that was the case for us. Andi was in a diaper, hat and a sleep sack the majority of her stay. But when she officially hit 4 lbs and was a couple of days away from going home, the doctors let us put clothes on her for the first time. It was such a special moment, and by far my favorite thing to put on her was a Magnetic Me onesie.
I loved how soft they were and the pretty prints, but most of all, the ease of the magnets just snapping up around her. I was still nervous about getting her dressed with the tubes and what not, so the magnetic closures made it so much easier! And especially when we got home - the MM onesies were my favorites. For several months after she came home, I still had to wake her up and feed her every 2-3 hours. Getting her dressed and undressed is exhausting and the MM closures made that a little bit easier!
Document it all.
We have 2 baby books for Andi: One for the NICU and one for home. You'll become very familiar with adjusted and actual age...and you should have the right book to document it all. As most moms will tell you, the first few months are a blur! That's especially true for the NICU. Having a baby book for the NICU also helps you track progress and see how far you've come! We used this one.
Ask for help.
The last thing I wanted to do when I got home from a long day at the NICU was worry about dinner. For those friends who want to help, tell them to set up a Meal-Train or just order you dinner. It makes all the difference. And for those friends who want to do more, they can always sit at the hospital with you. Some of my best friends would just sit in the NICU with me while I held Andi. It was nice to have company and I loved showing her off to visitors. Tell them to bring coffee or snacks. The last thing a mom wants to do in the NICU is to leave to get food!
Allow yourself to grieve and get mad.
You and your family did not get the happy birth story. There was likely no waiting room filled with balloons and flowers. You didn't get the moment all moms dream of where the doctors lie your baby on your chest. I felt so much jealousy and anger toward women who got that beautiful birth. Seeing women who was full-term, complaining about "getting this baby out," made me furious. I would have given anything to keep my daughter in my belly for just another week. For me, recognizing that anger and grief and allowing myself to get mad about that helped. It's not fair, but I wasn't alone.
Pumping while in the NICU:
I could write pages on this one, but I will just say many preemie moms don't have the luxury of breast-feeding or even pumping. I was super lucky that my milk came in immediately and I was able to pump the entire time, but it was not easy. If you are exclusively pumping too, get a hands-free pumping bra (mine is from amazon) and a hands-free pump that you don't have to plug in. The best pumping sessions for me were when I was holding Andi or at least watching her. Also, take a 2-5 minute video of your little one in the NICU. Keep it on your phone to watch for those at-home pumping sessions. It helps immensely!
Ask for gift cards.
When your friends and family ask how they can help, say gift cards! A VISA or AMEX gift card can go a long way, for gas, meals-on-the-go, etc. Amazon gift cards are always helpful, too.
Taxes & the NICU!
You can write off your mileage to and from the NICU on your taxes. And, you can also write off one meal a day. So keep track of your mileage and any meals you purchase, you might be able to write them off come tax time.
I know how easy it is to compare your baby's circumstances to another baby in the NICU. Don't do that. My daughter was in the NICU for 71 days because she was so small and had to weigh 4lbs before she could be discharged, while a close friend's little girl had no problem gaining weight, but her lungs were holding her back. Both girls are doing great now, but our journeys were very, very different.
Finally, know that there is truly no way to prepare yourself to have a child in the NICU. For me, one of the hardest days was when I was discharged from the hospital and Andi had to stay in the NICU. Just try to remember that the NICU is the best place for your baby at that moment. Trust that the doctors and nurses will love and care for your baby while you aren't there, and every day there is closer to the day you get to bring them home. And, your baby is stronger than you will ever know. NICU babies are a special breed of tough.
Andi turns 2 on May 31st. She weighs about 20 lbs and is the definition of tiny, but mighty. She is the strongest person I know.
If you would like to read Andi's full story, I've posted it on my website. And if you're a NICU mom reading this and want to talk, I am here.