I woke up that morning and felt “funny.” I couldn’t really put my finger on what was wrong. At only 27 weeks pregnant, I refused to let my mind believe that the back pain I was having was actually contractions. Curling up on the couch didn’t help, chugging glasses of water gave no relief, and I finally found myself in an extra hot shower for respite. (Sounds a lot like coping with labor, huh?) Finally, as much as I didn’t want to admit that there was a problem, I called my OB and asked to come in. Probably nothing, I told myself. The horrific part of this was that my husband was working out of town and was over 6 hours away. My mom arrived to keep my 6 and 4 year old daughters, and my sister drove me to the doctor. Looking back, my mom says she knew it was labor because I was gripping my kitchen counter tops for relief. I don’t even remember that. I gave my older girls a kiss and told them I would be back soon, not knowing I wouldn’t be home for days, and our family was about to embark on a 79 day journey through the NICU. I would do most of it alone, as my husband could not quit his job, as we needed medical insurance more than ever.
The conflicting feelings of having a baby in the NICU and older children at home can often be overwhelming. As a mother, you want to drape yourself over the isolette 24 hours a day, being there for all assessments, feedings, and opportunities for kangaroo care. I have no doubt that if my preemie had been my first child, that is exactly what I would have done. However, I had two precious daughters at home whose world had also been turned upside down overnight. They needed reassurance and some minute bit of normalcy. The main way I could accomplish that was by simply being present with them as much as possible. Your preemie will go through many obvious medical challenges, and older siblings often react to the stress and trauma as well.
My oldest daughter was in first grade. Normally, she was very excited at school, always volunteering to answer questions with a zest for learning. At a parent conference, her teacher reported that she seemed “quiet” and “distracted.” I realized that she understood far more about the gravity of the situation than I had thought. My four year old, long potty trained and in preschool, began to have accidents again. They expressed their feelings best through art pieces, such as this drawing my six year old did of her new sister, in which the feeding tube is very prominent.
The pain that a mother feels when all of her children are not together is indescribable. However, I realized that my older girls were struggling, and I needed to be a strong mother for them, despite the burden of the NICU nearly crumbling me to pieces. As all mothers of multiple children find out, you must balance your time and enery between them. In the end, having older children at home helped me cope with the NICU. I couldn’t curl up in a ball and let the situation engulf me.
Here are some ways I made it work:
- Learn to love and trust your baby’s nurses: If I couldn’t be with my daughter at the hospital all day, I needed to know that those taking care of her were competent, attentive, and would in a way love her for me during those times. Really talk to the nurses and get to know them on a personal level. Even though driving away from the hospital each time, for 79 days, still felt so painful, I knew that she was taken care of. I trusted that the nurses would call me and that I could call them, day or night, just to check in.
- Try to keep a “normal” routine going at home: I know, when your preemie is in the NICU, you begin to wonder what “normal” really is anymore. I felt the same way, but when I saw that my older girls were struggling, I realized that it was important for me to be strong and provide them a semblance of the home routine they had before. This helped them feel more safe and secure. They were both in school, so I made sure I was back from the NICU by the time school was out. We would come home and try to play, do homework and chores, and dinner, as close to the “old” way as I could manage. I began to realize that this helped me immensely. Before long, I was envisioning my 27 weeker when she was older, and how she would fit in. I would imagine her as a toddler, grabbing homework papers and running away, giggling. It gave me hope.
- Help older siblings connect with your preemie: As parents, we are in the loop (well, most of the time) with what is going on in the NICU. We see our baby every day, if possible. Now imagine being an older sibling: You have a little brother or sister that you rarely see (we tried to take our girls to the hospital one a week). When you do visit, you peer at your little sister through what looks like a big box, and there are lots of scary wires and machines. It doesn’t seem at all like what your parents described of a new little sister who would come home with Mommy from the hospital. This can be a very scary experience for older siblings. I found that pictures were a great way to keep my older girls involved. Each day I would take pictures and show them what their little sister was doing that day…from a positive viewpoint. If it was a bad day, say L was put back on the ventilator, I might take a cute picture of her foot and ask the girls whose toes she had. Help your children to know their sibling as much as possible, even from afar.
- Be honest: Kids are very perceptive, especially the older they are. My six year old would often ask tough questions. I could have probably dodged them and sugar coated everything for her, but being honest and supportive, yet in a way kids can understand, is better for everyone. “Is she really sick?” “Are you sad?” “Why can’t she come home?” “Does she have to live at the hospital forever?” Perhaps the hardest one of all came from my four year old: “Is your baby going to die?” That was immensely painful to hear, but it crosses all of our minds at some point during the NICU journey, and even though they may not fully understand what it means, kids may be asking the same questions. Answering these questions in a calm, loving, and honest manner can help older siblings feel more at ease during the NICU roller coaster.
Do you have any tips to add to this list?