April 2022 – After the NICU

Jenny McCormick, Senior Editor PreemieWorld

You may have a myriad of different feelings as you bring your baby home from the NICU and those feelings may change and overlap as you learn more about your baby and how to care for him/her away from a hospital setting. It’s a journey for your whole family. Here are some expected and normal feelings:

Excitement: You have waited days, weeks, or even months to take your baby home. The excitement of being all together under one roof is a wonderful feeling, even if it is met with a mixture of worry. Try to stay in the moment and enjoy the victory of getting your preemie home.

Scared: Fear is a very common emotion for preemie parents as they leave the security of the NICU. When you feel overwhelmed by worry, make sure to reach out to your baby’s care team. Call your baby’s provider with any and all concerns. If you have early intervention services, talk to your child’s service provider or home health care nurse. Make sure to take your baby to their medical checkups to allow your provider to check your baby’s health and development to make sure things are going well. Knowing that your baby is healthy can help you feel comfortable and confident about caring for your baby at home.The more questions you ask and keep in communication about any changes you note with your preemie will help alleviate your fears.
Nervous to go out in public with your baby or have visitors hold your baby: This is a very common feeling for most parents with newborns, but these concerns triple when you bring a medically fragile baby home from the NICU. Here are some recommendations to help with the nerves:
Most doctors recommend not visiting public places with preemies.
Limit the amount of visitors to your home and anyone who is ill should not visit.
Don’t allow visitors to smoke around your preemie, and all visitors should wash their hands before touching the baby. Talk to your doctor about specific recommendations — some family visits may need to be postponed to allow your little one’s immune system to grow stronger.

Feeling of loneliness at home: While you are limiting visitors and tending to your preemie at home, it can be incredibly isolating, especially as your journey may be so different from your friends and family who have healthy babies. Reach out to a close friend or family member; take a moment to have a phone conversation over coffee with a close relation. Remember that this isolation won’t last forever.

No one understands how hard this preemie journey has been for you: How accurate the quote, “Don’t make assumptions.” Unless you’ve experienced preterm birth, a scary NICU stay and loss of the envisioned perfect birthing story, you just can’t completely grasp what a preemie parent goes through. Many of our close relations just can’t relate to what we’ve been through, but thankfully there are so many preemie parents paying it forward and who are happy to support you, and get this, they actually understand! Join a preemie support group like the Inspire Network, led by our very own Deb Discenza, Founder of PreemieWorld. https://www.inspire.com/groups/preemie/

Feeling like you’re a different person after the NICU: Along with a NICU stay comes perspective. There is so much learned from watching your child fight for his/her life. Preemiehood changes you at your core. You may find yourself looking in the mirror and no longer recognizing the old version of yourself and that’s okay. Try to give yourself grace and find the positives in this new version of you. And it’s definitely okay to mourn the loss of the other person you were before becoming a preemie parent. The goal is: be gentle with yourself as you continue to evolve.

Guilty and angry because your baby was in the NICU: GUILT! Raise your hand if this is an emotion you felt and/or still feel when you think back to your preemie’s early arrival. This is one of the most common feelings for preemie moms. If your preemie has serious medical problems you may feel angry that your baby is sick or grieve for the loss of that healthy, perfect baby you dreamed of bringing home and as with all women recovering from pregnancy, mothers of preemies may experience the hormonal shifts of baby blues or more serious postpartum depression. This is when you need to reach out and ask for help. This may be in the form of a support group, seeking medical support from your primary care provider and seeking therapy support. Learn more about an online therapeutic resource for parents coping with the NICU experience: http://www.nicuhealing.com/

Exhaustion: Parents spend a tremendous amount of time caring for a preemie during the first few months at home after a tiring stay in the NICU…EXHAUSTION, thy name is preemie mom! It’s important to be good to yourself and not underestimate the stress of delivering earlier than expected, and then caring for a preemie at home. Know your limits and when it’s time to call in the troops. To make the adjustment of living with your new baby easier, accept offers of help from family and friends — they can babysit your other children, run errands, or clean the house so you have time to care for the baby or rest.

Suffering?  Getting help is key:  Postpartum Depression (PPD) and PTSD are super common in our community and the frustrating part is not getting help can affect you longterm but also affects your child’s longterm outcome as well.  So getting help is key.  You can seek help through your health plan to talk to a therapist but it may be that medication is needed.  Many of the typical anti-depressives out there require time to manifest change especially as you ramp up with a minimal dose.  However, there is one Postpartum Depression medication on the market by Sage Therapeutics, called Zulresso.  This medication has proven to have great effect in a much shorter timeframe.  Ask your healthcare provider about this and how to get access to it.