Hand to Hold's Official Blog: Written by Parents for Parents

Don’t Put Yourself in Isolation

IMG_0027After I brought my daughter home from the hospital, my world became way too small.

At first it felt luxurious to be home. Going back and forth to the NICU multiple times a day was exhausting, and I was so happy that I could spend an entire day in my pajamas and not have to be at the hospital for the first time in months. My daughter, born at 28 weeks gestation, had spent 68 days in the NICU as she grew from 2-and-a-half pounds to just under 5 pounds. Before that, I was on bedrest in the hospital for two weeks due to chronic placental abruption. I was so ready to be at home and create my own routine, not one set by NICU rules.

Unfortunately, in leaving the NICU, I left behind a huge form of socialization. I had come to know the nurses, our doctors, and many other NICU families quite well, and suddenly I found myself very isolated at home. Not only was I tethered to the house because my daughter was attached to an oxygen concentrator, but I also spent most of my time in just two rooms; the two where her oxygen tube would reach.

I wasn’t much of a stickler when it came to our normal household germs. I figured they were “our” germs, and a certain level of exposure is necessary to build a healthy immune system. Evelyn had her flu shot and monthly Synagis injections to stave off RSV.

What did make me incredibly nervous was outside germs. Evelyn came home at the end of August, right before the start of the cold and flu season. She was on oxygen until December, and so we only left the house for doctor appointments. Even after she came off supplemental oxygen, I kept her indoors throughout the winter because of the frigid weather (we live in New Jersey) and fear that she would catch a cold at a time when her lungs were just barely able to function 100 percent on their own. Besides, I’ve always been of the mindset that tiny babies really want to be home and cozy. To this day, when I see a still-pinkish newborn out at the mall, I can’t help but shake my head.

During those cold weather months, not only did I keep Evelyn at home, but I seriously limited the number of people who visited me, as well as the frequency with which I left the house. I was terrified that someone would bring sickness into my home, or that I would get coughed or sneezed on at the store. My parents came over regularly, but other than that I hardly saw anybody other than Evelyn and my husband. Every couple of weeks, I’d go out to the grocery store for an hour or so, but besides that I only left the house for Evelyn’s pediatrician and neonatologist visits.

But, I didn’t realize the effect that being so isolated was having on me. I went from being a busy newspaper editor before Evelyn was born, to being a stay-at-home mom with very limited socialization and hardly anything to occupy my mind.

When your brain doesn’t have enough stimulation, sometimes it creates its own – at least that was the case for me. As time went by, I developed a serious case of obsessive compulsive disorder coupled with depression. My brain was inventing worries that really didn’t exist, and ruminating on them until they consumed my life.

This was accompanied by depression. I wondered what I had done to deserve the things that were happening – an early and traumatic end to pregnancy, a premature baby, months in the NICU, and then what felt like an erosion of my sanity. Through medication, over a year in therapy and – perhaps most importantly – getting myself back into the world, my OCD and depression have receded by about 90 percent.

I realize now that I should have been more kind to myself. One day I was seven months pregnant at work, the next day I was hemorrhaging in the back of an ambulance. For two weeks, I was confined to a bed as my body threatened labor again and again, and then I was in the alien environment of the NICU, staring at a tiny baby on a ventilator, covered in tubes and wires. From there, I put myself into months of isolation. I’m not exactly sure why I believed I could endure that.

If you find yourself isolated with a preemie this winter, be kind to yourself and don’t forget your own needs. Stay connected to the outside world. Volunteer your time, find a way to work from home, learn a new hobby, find something that excites you. Even though there’s always the risk of germs, take an entire morning or afternoon all to yourself and get out of the house every so often – go shopping (something more exciting than groceries), visit a museum, go to a coffee shop and read a book, get together with friends. Your brain will thank you. And ultimately, so will your family.

So, if you’re feeling like I did, stop it in its tracks now. Let’s brainstorm in the comments below and all help each other fight the urge to put ourselves in isolation.

Kristin Beuscher About Kristin Beuscher

Kristin Beuscher (NJ) is the mother of Evelyn, born prematurely at 28 weeks due to chronic placental abruption. Evelyn weighed 2 pounds, 7 ounces at birth and spent 68 days in the NICU before coming home on oxygen. Today she is a perfectly healthy child. Kristin spent 10 years in journalism, most recently as editor of two weekly northern New Jersey newspapers, before becoming a stay-at-home mom in 2012. She seeks to provide hope for parents still in the NICU, as well as for those struggling with PTSD, anxiety or depression following the experience. Connect with her on Facebook.

Comments

  1. Thank you for writing about this! I think that once you leave the NICU, everyone things that things will be a-ok. We know that’s not true – there are many more hurdles to jump after discharge. There is tons of support for families during a NICU stay, but there is not much for families after discharge. Combine depression, guilt, PTSD, and the overwhelming number of medical appointments and you have the perfect storm. I’ve struggled with self-care since my son came home – his needs always come first. So, last month, I forced myself to sign up for a pottery class again! It feels good to have that time only for me and to be doing something that I love.

  2. This sounds like me! My 27 weeker came home in May but I am so scared of flu season! He only goes to family members houses’ and I screen everyone for flu symptoms before they come over! I did go back to work full time so that helps, but I totally can see how all of this can happen! It’s comforting to know I’m not the only one 🙂 best of luck to you!

  3. Thank you for writing this. It is so true. While my baby was in nicu, I felt the loneliness and isolation setting in. Immediately after my daughter was born, we had a couple of visitors, but then they stopped coming. My husband was back at work and the hospital had a home away from home program (which was awesome, but I ended up not going outside for weeks) so I at least got to know some of the nurses. My daughter spent 6 weeks in nicu and by that point my friends and family rarely even wrote me a text message, yet alone came to visit.

    Foolishly, I thought that once we were home people would be more likely to visit. After all, it is closer and more comfortable than a hospital setting. But in order to visit, I ask that people aren’t sick (which I don’t think is unreasonable). Since it is cold & flu season, I haven’t wanted to leave unless absolutely necessary. Since we have such a weak support system, this leaves me in the house alone constantly. In the 5 weeks she’s been home, I’ve only left a couple of times to go grocery shopping and I’ve only had 2 visits from friends and family.

    When I’ve mentioned my struggles to my close friends and family they end up feeling guilty and leads to them explaining why they haven’t come and sometimes they start avoiding calling me altogether. So I just keep my feelings inside (increasing that isolation!) Even if they did visit, I don’t want it to be out of guilt!

    My point is that I appreciate you writing this because it’s good to know other people have gone through this experience. It is good advice to proactively look for ways to get out of the isolation. It is hard, but necessary.

  4. Rachel Wright says:

    Thank you so very much for sharing your experiences….You are a remarkably strong mother and amazing! I feel the same way as missing some of the connections to support through the NICU…. I have had a similar experience lately regarding the extra concern over germs/RSV/and anything that would make our son sick. I feel as though I may be a little overly crazy sometimes, but am just so concerned about his health….Your comment about finding a new hobby and to becareful with isolation was really helpful to me! I think at times I feel a bit isolated and motivated….this really will help me to find a new focus when I have any downtime with caring for him….thanks again and best wishes to you!!

  5. Great post, Kristin! I experienced so many of the things you discussed. As difficult as the NICU journey was with both of my babies, the first months my son was home were the most challenging of my life. My son was tiny and fragile. We were living in a new city and had no friends or family there. I was a new mother, and I had no idea what I was doing with a tiny baby. Being an extrovert living a completely isolated life where I spent days on end confined at home with my son was brutal. I know your post must come at a good time because this is the season when many preemie families are under isolation, and I’m sure you’re helping people know they aren’t alone, even if they feel alone. Thanks for sharing!

  6. Billie Trimble says:

    Thank you for writing this. It sounds just like me. My son was born at 26 weeks and 4 days. He weighed only 1lb 13 oz and 13 inches long. He spent 122 in the Nicu. Most of that time was spent on various ventilators. He had collapsed lungs and pneumonia several times. But he is a fighter and made it through all of that. He is 2 now and doing amazingly well. But I am terrified to take him out from November to April every year. I don’t even go out for fear of bringing some germ home to him. I rarely let anyone come over. I have become so depressed. Then I am mad at myself for that when I am the most blessed mom in the world to have such an amazing wonderful perfect little boy. Thanks for giving me a place to vent.

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