Surviving the NICU Roller Coaster
Our NICU stay felt like a never-ending, roller coaster ride. It was the kind of ride that takes you high up into the sky one minute but then drops you hundreds of feet from a sharp angle the next. After an emergency C-section at thirty weeks, my son spent two months in the NICU before his transfer to the Cardiac ICU at a children’s hospital. At first the NICU is extremely overwhelming. It’s an anxiety filled place where something is always beeping and alarms are always going off to alert nurses of one issue or the other. Parents nervously look at screens to ensure that the issue isn’t with their baby. I still hear those alarms in my head sometimes. After the initial shock of it all, I learned to tune out the noise and focus on our daily victories. I remember feeling such joy when my son would gain weight or tolerate an increased feed. Bigger victories like decreased breathing support or being allowed to wear tiny clothes for the first time, made for great days. When I think of those moments my body smiles all over, I was so proud.
One of my most joyous moments was when my little prince moved from the incubator to an open crib. To me it was an amazing accomplishment. It meant that he had reached a safe weight and was able to regulate his own temperature. Most of all it meant that I could touch him and hold him without having to stick my hands awkwardly through the holes of the incubator. When they first moved him I didn’t want to leave the hospital. I stayed all day long! Usually I would have left for lunch as there is no eating or drinking allowed, but I just couldn’t get enough of him that day. I was so proud of our survivor! When I could no longer hold my hunger at six in the evening, I went to have dinner and planned to return the next day. At 9PM I couldn’t stop thinking of him. I wanted to enjoy every minute of him in his new open crib. I got in my car and drove back to the hospital.
After scrubbing in and putting on a freshly laundered gown, I rushed excitedly to his room! When I got there my heart dropped to the floor. He was no longer in the open crib, but back in an incubator. I got so angry and yet so worried at the same time that I almost couldn’t contain myself. Our assigned nurse was busy feeding another patient, so I waited for thirty minutes with tears escaping my eyes and fumes coming out of my ears. When the nurse finally came, she explained that his temperature had dropped too low and they had to put him back in the incubator to regulate it. They were not sure why this happened. It may have been that he was getting sick or perhaps he just wasn’t ready yet. I could hardly hide my disappointment. Most times I tried to be strong and not cry in front of my baby, but I couldn’t help myself that night. Worry and guilt were consuming me. Did I get him sick? Did I somehow contaminate him? Was I rushing things too much?
I cried so much that night that I had a migraine the next day. And so went our stay at the NICU. It felt like we took two steps forward and three steps back on a regular basis. But somehow, with the grace of God I was able to get through it. I knew in my heart and soul that my son was meant to survive. He had been fighting from the womb. Looking back, I can definitely identify a few things that helped us through our long stay. If you ever find yourself in a situation where your baby has to spend time in the NICU, here are some things that might help to make it easier:
Be present. This is hard for many moms as they have other kids or may even have to go back to work. But it’s extremely important. Since I was there everyday for several hours the staff knew that I was paying close attention. In return they were very careful with handling my baby. I was able to develop a relationship with them that made things much more pleasant. I strongly suggest attending the daily doctors’ rounds as much as possible to get updated on your child’s status. Doing this helped me to feel involved in decisions about his care and also gave me some sense of control over the situation.
Learn the NICU jargon. Doctors have a way of talking above you. Especially during rounds. They don’t mean any harm, but they give their reports in “doctor language” and when they are done they turn to you and explain`it all in one simple sentence. In the beginning I felt on edge waiting to hear what things meant. I also felt like I wasn’t being told everything. So I started googling NICU jargon and found several sites that provided glossaries. I quickly learned the language and in a few days I was able to decipher what they were saying with much more ease.
Be nice. NICU moms are going through a lot of difficult emotions and may be tempted to snap at a nurse here or there. I certainly felt this way many times. Then one night after a particularly trying day I felt such gratitude to the nurse that was caring for my son that I left her a little note when I was leaving. From that day on she was so incredibly nice to me I realized that it really made a difference to just say thank you. I started leaving little thank you notes with smiley faces much more often. It went a long way, the nurses really appreciated it and I felt like they gave us extra attention and love. Don’t forget these people will be taking care of your little one when you are gone!
Hold your baby a lot. Although it’s not easy to take the baby out with all of the wires and cables attached, ask to do it everyday. It may not always be possible and some nurses don’t like the trouble, but it is so important for you and your baby. My heart ached on the days that I couldn’t hold him. It helped me to bond with him in such a special way. I know that it also soothed him and helped to heal my heart. In a situation where you have to ask permission to touch your child, sometimes it feels like that child doesn't belong to you. Holding my baby against my chest helped to alleviate that feeling.
Bring your mom. Bring your mom or sister or best friend with you to the NICU at least a few times. You will need the support. You will need someone to be there and understand what you are going through on a daily basis. You will need someone to hold your hand, hug you when you cry and celebrate those victories with you. This is not always easy as people get sick, don’t feel comfortable or are just not available for whatever reason. But after the NICU ride is over, you will want someone other than just your partner to understand what you have just been through, especially if that person will be helping you to care for the child.
Take a day off. If you’re in the NICU chances are you may be recovering from a difficult birth too. Let your partner or a trusted loved one take over the reins for a day and get some rest. Your baby needs you to be healthy in mind, body and heart!
My son is now a bubbly one year old with a big personality and the NICU seems like it was a decade ago. I’m so grateful for the wonderful nurses, doctors and therapists that cared for him when he was there. For those eight weeks they became our family. When the time came to transfer to another hospital, I cried. Not only was I was scared of what was to come, but I knew I would miss the NICU staff and would probably never see them again. God bless them all!
© Nicola Rios Nogales and ispeakmom.com, 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Nicola Rios Nogales and ispeakmom.com with appropriate and specific direction to the original content.