The NICU was one of the toughest parts of our journey for me so far.  If you are there now please know that you are not alone. Mothers and fathers have come before you and many are there now. Even now as I sit here writing this years later the pain I experienced during that time is vividly present in my heart. I had asked Blake to write this section because I did not want to revisit these feelings. I guess he felt the same because it remained blank as our website launch day moved closer. So here I am hoping to convey some measure of comfort and hope to you.

During this time, I remember feeling so overwhelmed and isolated even with my husband and visiting family surrounding me. I was not sure what to expect from anyone working there or why there were social workers asking me questions. Was I already deemed a bad parent? I thought the social workers were there to monitor me. They were truly there to offer assistance but none of them ever approached us in a direct way to let us know this. And why were they talking to us about clinical evaluations and handing me folders of information? The doctors were telling us that we needed to wait and see how Maya progressed rather than making predications about her development. But in my mind these packet people (as I came to see them) were assuming there would be something wrong with my child.

Even considering there might be serious issues to address was was too much for me while Maya was in the NICU. I didn’t think I was in denial but maybe I was. I didn’t know what to expect in the future and I thought that if we arrived at a time when we noticed  problems presenting themselves we would address them then. I just wanted to have some time to process everything that was happening and bond privately with my baby. Moving through postpartum emotions and looming possibility that my baby may have residual developmental problems is challenging enough without having an audience.

I was physically and emotionally exhausted, afraid and insecure and I did not like these feelings. I consider myself typically confident, forthcoming, and prepared and I felt very much out of my comfort zone. What was even more difficult was that my husband worked at this hospital and I felt my privacy was further invaded.

Hindsight

Looking back I wish someone had given us an introduction to the NICU and guided us through our journey there; sort of like a “who’s who” tour and here is what we could expect etc.  The March of Dimes website offers a staff directory of people who commonly work in the NICU that also describes what they do. If you have a child in the NICU now, I would ask if there are any parent volunteers to speak with who may be able to help you and your family navigate your way through this time. The parent volunteers are typically people who have had children in the NICU sometime in the past.

I felt my child was not my own during our stay and that we had somehow temporarily surrendered all of our rights to caring for her without any one talking to us about it. I remember asking to pick Maya up and having a nurse tell us that we were not picking her up properly. She said Maya was going to bleed out of her line and I was going to hurt her. I was horrified. I kept getting the message “don’t touch her”. A couple of nurses were more gentle and loving and one said “This is your child honey and you may hold her  and love her whenever you like”. Whatever the approach of the people around us at the time, the most intimate moments of early bonding were constantly being observed.

What I did not realize at the time was that these people were trying to protect Maya and do their job. They truly were not trying to judge me or monitor me but their job did involve monitoring Maya so it is easy to confuse the two. I have heard from other parents that their NICU experience was more positive and I am grateful for this. Most medical professionals recognize the importance of the parent/child bonding experience and encourage the parents to actively be involved with their infant. If you have a child in the NICU now remember you are the parent and speak up when you have a concerns or questions about your child’s care, what people are doing and about why they are doing it. If it appears that people are too busy to speak with you ask when they are able to set aside time to go over your concerns. I remember that I had to ask about breast feeding my child. As soon as I asked the nurses made arrangements for me to begin this process and they even had a lactation consultant come in and help me.

One of the most fascinating memories I have of the NICU was the manner in which our daughter was discharged. There was a pediatric nurse who had been working in the NICU for 40 years! She looked at my husband and me one day and said, “This child needs to go home”. My husband and I were surprised to hear this. Based upon her feedings, Maya was not taking in enough milk independently to go home yet. The nurse said she was going to speak with the doctor because she genuinely felt Maya would fare better outside of the hospital. She said she had been doing this work for so long that she had an instinct about when the babies were ready to leave. The doctors took the nurse’s advice and agreed that Maya could be sent home a few days later. Despite our anxiety of handling Maya successfully at home (after facing so many early challenges), we were ready to leave the NICU. We wanted to be a family in private; to love our daughter privately; and we wanted to try to feel “normal”.

Coming home from the hospital

The nurse was right. Maya immediately started doing better at home. I remember crying the first night as I stood over the pack and play with my sister by my side. I said, “she isn’t eating enough” and “what if something happens to her?” Ironically, I wanted those hospital monitors (that I had grown to hate so much) in my house. Oh, that leap of faith from constant monitoring to independence made me crazy. I did not have as much faith even though I wanted to believe that my child could thrive away from the hospital.

But she did. One day at a time. She grew, we grew, and my husband and I learned to depend on each other, our family, and any help that was extended our way. We were beginning a new life similar to what all new parents experience but even more complex and worrisome. We quietly monitored Maya’s every move, milestone, missed milestone, facial expression and adjustment to the outside world. Over time I found my “mother’s intuition” amidst all of the confusion and racing thoughts. I came to understand through my husband’s honesty that even though he is a doctor, he is not a pediatric doctor and this was his daughter and his worries and thoughts were just like any other father. And they were amplified by what he had learned about and the potential issues Maya would be facing.

Having help when you come home

We had relatives who would come and visit and help out periodically, but we did not have family living near us. This combined with my husband’s hectic work schedule made the transition to home very difficult. I had to become resourceful quickly. Hiring a post-partum doula was the best thing we could have ever done (for information about doulas see the Resources section of this page). She prepared meals, helped me get adjusted to being a mother, and allowed me to get some much needed rest. If you are unable to afford extra help in your home, I would suggest reaching out to family members or your religious community to for assistance. Even if you are only able to get a few hours, a few meals, and/or grocery shopping done, you will be happy you asked.

Never stop asking for help when you need it. Don’t be a martyr. The more relaxed and supported you feel, the better your child will be for it. This woman essentially ran our household for six weeks while the three of us healed. It was money well spent and it saved us all any additional stress and anxiety.

What is a post-partum doula and how do you find one?
http://www.americanpregnancy.org/planningandpreparing/postpartumdoula.html

The next steps

  • Find an excellent pediatrician you trust, who has experience with special needs children, and with whom you can comfortably communicate.
  • Follow-up at the Neonatal Clinic.
  • Arrange help at home.
  • Consider meeting with an Early Interventionist (also called an EI for short).

Our pediatrician was fabulous. Thank goodness we had a great relationship with her. The doctors in the practice were concerned about me in a loving and candid matter. They took our concerns about Maya seriously and helped us navigate difficult challenges ( I would say they continue to do so but we have since moved away and have a different set of doctors now).

Resources/Comfort

When Maya was in the NICU I often felt at a loss for words but I wanted to connect with her even when I wasn’t able to hold her. I was given a book of stories to read to her that I found very comforting and it helped me to focus my love and energy on her. Below I have linked an article about a great book program started by a mom who wanted to honor her son who spent time in the NICU. For more information you may visit her website Matthew Loves Books.

Does your hospital have a March of Dimes office that works with the NICU? If you are not sure ask. You may also inquire about parent to parent programs with the social worker in the NICU. There may even be parents of former NICU patients who may meet with you at the hospital and to offer further support.

The March of Dimes has a online space called “Share your story”, where parents who have children in the NICU may share their stories and connect with other parents.

There are many Parent to Parent organizations throughout the United States. You may wish to contact one for support and resources. These are organizations typically staffed by parents who have special needs children who wish to offer support to other parents. We have them listed by state in our Education/Preschool section.

Graham’s Foundation :Do you know someone in the NICU or are you the parent or relative of someone who has a child there? This organization offers practical and emotional support to families who have extremely premature infants in the NICU. They will even send care packages to families:

March of Dimes article on having a baby in the NICU
http://www.marchofdimes.com/baby/inthenicu.html

A resource guide from Texas Children’s Hospital on coping with a having a baby in the NICU
http://www.texaschildrensblog.org/2012/06/how-to-cope-when-your-baby-is-in-the-nicu/

March of Dimes article on coming home from the NICU
http://www.marchofdimes.com/baby/homeafternicu.html

ZERO TO THREE
A national non-profit organization organization that informs, trains and supports professionals, policymakers and parents in their efforts to improve the lives of infants and toddlers.

“Welcome to Holland”
A well-known poem written by a special needs parent about her unexpected journey with her child.