When I was pregnant with my second child I was considered a high risk patient, being that I was almost 38 years old and had conceived through IVF. During a routine ultrasound while in my second trimester my high risk doctor informed me that my unborn child had a hole in her heart and would possibly need open heart surgery to repair it. I immediately broke into tears. How did this happen? Was it preventable? Did I do something wrong? I was heartbroken for my baby. 

The weeks went on and as I grew closer to my due date, I started to lose amniotic fluid and was placed on bed rest. I would go to the doctor 3-4 times a week and everything from what I ate to how long I rested for was monitored. But my daughter had her own plans. I was 36 weeks pregnant when my water broke in the middle of the night. And when I say ‘broke,’ it was more of a mysterious leak. I was in the hospital on bedrest for another 48 hours before they decided to do a c-section and get my little girl out. 

Due to the nature of my pregnancy, giving birth early and the hole in her heart (which is commonly known as a VSD), there was a team of 5 doctors from the NICU ready to take her away the minute she was born. I had exactly 1 min with her before she was taken away. They did an echo scan and confirmed there was a hole, but it was much larger than they originally thought and they even found 2 more small ones. They told me to prepare to go home without my baby. That was gut wrenching. As a mom of a baby girl who spent almost 3 months in the NICU, I wish someone told me what to expect when you have a baby in the NICU. I hope no mother ever needs to read this, but if you find your newborn in the NICU, here’s a few things you can expect: 

They can be there a lot longer than you originally anticipated: 

The first day she was born I was told it could be a week, then on day 5 they said it could be closer to 2 weeks. By two weeks, they told me a month. By the end of the month, it became two. Truth be told, if your baby is in the NICU there are a lot of thresholds they need to accomplish before they can come home-they need to be able to breath without complications and consume a lot of milk (breast or formula). Find out exactly what the criteria is for your baby to come home so you can curb your expectations. 

Some doctors can be A-holes:

There will be doctors you will praise every single day for the rest of your life and there will be A-holes you will never forget. By week two of my daughter being in the NICU I had to complain to the head admin that no one would return my calls or give me updates on my daughter. I was told to come in at a certain time in the AM when the doctors do their rounds and I would have up to date info. I did exactly that. The next morning I was there at 8:30AM. The doctor made eye contact with me, was clearly annoyed that I was there waiting and kept me waiting until 1pm. At that point when I finally tracked her down, she said to me, “your baby isn’t the only baby here, I will get to you when I get to you.” I was shocked. How could someone be so cold hearted? I was furious. Just like everything in life, there is always good and bad. And sometimes you won’t like the doctor, and if you don’t it’s absolutely OK to… (see my next point).

You can ask for your child to be transferred: 

Children’s hospitals are experts at all things children--regular hospitals are where you deliver. There’s a big difference. If you don’t like the care your baby is getting at the hospital you delivered at, and they need additional care that you feel they’re not providing, you can ask for your child to be transferred to a children’s hospital. I did just that when I found out she needed to have surgery for her heart. And it was the best decision I made. I actually wish I knew about it earlier and had done it weeks before I actually did.

It will be an emotional rollercoaster: 

On some days I would visit and would be in a great mood and she would take the smallest step back (and I mean, small, like she spit up her formula) or something bigger, like they had to put her on a feeding tube because she was unable to feed on her own, and I would break down. I would leave the NICU, sit in my car and cry. There will be days when you’ll smile and cry within 10 mins of each other, and that’s absolutely OK! You just gave birth, give yourself the chance to heal from your emotions. There is no right or wrong way to deal with your emotions when you  have a baby in the NICU. Do what is best for you. 

Your baby can have a primary nurse: 

Is there a nurse you love? You can ask them to be your baby’s primary nurse, which means whenever they are scheduled to work, they’ll be assigned to your baby. I wish someone told me this sooner, I didn’t know about it until my daughter was half way through her NICU stay. I had the most wonderful nurse named Danielle, who literally changed my life. She would go out of her way to do small things to make my time with Juliette at the hospital easier for me. She’s an angel on earth and I will forever be grateful to her. 

It’s very loud but not all alarms are cause for concern: 

When Juliette first went to the NICU I was surprised by how loud it was in there and how it was possible for the babies to sleep through the alarms. Early on there was a baby next to her whose alarm kept going off and I got so concerned I asked the nurse about it. She told me that some alarms are more sensitive than others, and can go off for small things, like when the baby is crying and it doesn’t necessarily mean you should worry or that something awful happened. 

They may need a blood transfusion:

Depending on how long your baby is in the NICU they may need a blood transfusion, and this is mostly because of the amount of tests that are done on your baby. And a lot of those tests are done by drawing blood. Lots of tests + blood drawn = loss of blood. Don’t worry if this happens, it’s actually pretty common. Juliette had 3 blood transfusions during 9 weeks.

There is a light at the end of the tunnel:

One day you’ll get a call telling you to pick up your baby and it’ll be the best damn phone call you’ll ever get in your adult life. And just like that, your little one will be home and the trauma of the NICU will be a distant memory. 

I hope no mother ever has to experience leaving their child in the NICU, but if you do, it’s ok to ask for help. There are professional therapists who specialize in women’s health, fertility and reproductive help, and some of them accept insurance, so don’t be afraid to seek help if you need it.