Life After Discharge

This article was originally published at www.grahamsfoundation.org

From the moment my twins were born at 28 weeks and admitted to the NICU, my first thought in the morning and my last thought at night was when will they come home. I just wanted it all to be over. After struggling for 3.5 years with infertility, I was tired of waiting to be a mother. I just wanted my babies out of the NICU and home with me.  Time is such a blessing and a curse in the NICU. Babies need time to grow and develop, to learn all the things they need to survive. But it’s also so difficult to go to the hospital day after day, and not know when your baby is going to be released. Time is rarely linear in the NICU, as just when you think the end is near, an issue arises that puts you right back where you started. I viewed discharge day as the end of this whole experience, but really it was only the beginning.
After 55 days in the NICU, one of my twins was ready to be released. I wasn’t prepared, in fact it felt somewhat sudden. I had been waiting to finally get to this point, where all the milestones had been reached, all the tests had been passed. But it was bittersweet to leave one baby behind. Although it doesn’t make much logical sense, I always felt a little better leaving, knowing my babies were not alone in the NICU. They had each other. Now, however, I couldn’t find solace in this. 
The next ten days were the hardest part of the whole NICU experience. I literally felt torn in two pieces. At nearly 2 months in, I had an excellent NICU routine in place. It was something familiar and well-practised. But this was different. I didn’t want to leave one baby to go back to the hospital, but I couldn’t stay away from the baby still fighting in the NICU. Finding a balance was impossible, which led me to feel so guilty. But finally the day came, when everyone was home.
When I had imagined this moment over 2 months ago when my babies were first admitted to the NICU, I thought I would be so ready to take them home. But in actuality, it was a very scary experience. The NICU that treated my twins was a traditional open bay design. We didn’t have a single-family room, and I had never spent the night with my babies. I wasn’t used to caring for or even holding my babies without a variety of machines to monitor their vitals. I was sent home with two medically fragile babies, and very little training or instruction on what to do next. To say I wasn’t prepared was an understatement.
Now that I am several years out from the NICU experience, time has changed me. I no longer think about discharge day from the NICU as the end. I know now that life after the NICU is just the beginning of so many brilliant and hard things. And that the grit and tenacity that we created in the NICU is the foundation for the journey we have all only just begun.