Since October is Pregnancy and Infant Loss Awareness month, I thought I would do a top ten about things people should know about parents who have experienced infant loss in the NICU. This actually happens to more families than you might think. Check out the top ten things I think you should now about bereaved NICU parents.
1. The March of Dimes states that premature birth is the leading cause of newborn deaths. 45% of babies born under 750 grams (1 pound 6 ounces) don't survive. Although there are many advancements with preemies and premature births, there are still many families who not only leave the hospital empty handed but also leave the NICU empty handed.
2. Not only have parents experienced rollercoaster journey while in the NICU with their baby, but after the death of their child they are now going to be experiencing a rollercoaster of emotions due to grief. Many of the emotions they felt while in the hospital they will feel now at home. Guilt, grief, helplessness, shock and sadness are many of the emotions parents feel while their baby is in the NICU and also feel after the death of their child.
3. The adjustment after being in the NICU with your child back into your regular life is hard enough. It is even harder if you come back to your regular life without the baby you were caring for in the NICU. It will take time for things to get back to normal for these parents however it is not the old normal but a new normal. Be supportive as they are trying to adjust to the new chapter of their lives.
4. The connections and friendships made while in the NICU are so important. It is only those parents who have experienced the NICU that really know what it is like to have a baby in the hospital. The same is true for parents who have experienced a loss. Both types of these friendships are so important to bereaved NICU parents. The doctors and nurses become your friends too and some days the only adult interaction you have. They are the only ones who knew your baby and their friendships mean so much even after you leave the NICU, especially for parents who leave without their baby.
4. The connections and friendships made while in the NICU are so important. It is only those parents who have experienced the NICU that really know what it is like to have a baby in the hospital. The same is true for parents who have experienced a loss. Both types of these friendships are so important to bereaved NICU parents. The doctors and nurses become your friends too and some days the only adult interaction you have. They are the only ones who knew your baby and their friendships mean so much even after you leave the NICU, especially for parents who leave without their baby.
5. Memories are sometimes the only things parents have. All of our memories with our daughter have to do with the NICU. It was her home. Let me talk about her even if it sounds strange to you by me starting starting off with ...."while she was on the vent" or "the day she peed 50 grams"...these memories are all we have left. They may not seem like what most parents talk about, but believe me, that is what NICU parents DO talk about.
6. We are still parents. Even though my baby didn't come home with me, I am still her mom. I was her mom in the NICU and I am still her mom now. Bereaved NICU parents are still parents.
7. Many things are lost with the NICU experience. Parents not only lose a child, but lose the dreams they had for their baby to grow up, they lose the joy and happiness for future pregnancies and sometimes they just simply lose hope. We lost many things during our stay in the NICU and after our child's death, but we didn't lose our love for each other, love for our baby, and even love for the nurses and doctors in the NICU.
8. Parents miss their baby and they miss the NICU. After Ella died, I missed the routine of going into the NICU, seeing the nurses, hearing rounds by the doctors, and humming of the unit. When parents first entered the NICU with their baby it is hard for them to imagine getting used to sitting in a hospital next to our newborn. But after 83 days it became part of being Ella's parents. I missed the normalcy I felt while I was in the NICU advocating for my daughter. After she died, I didn't know what my role was any more and I so badly wanted to walk down those hospital halls and back into the NICU. I felt that was the only place we belonged as preemie parents.
9. It is very hard to forget what life was like in the NICU. One step forward, two steps back, Is and Os, Bilirubin, blood gases, vents, jets, Hemoglobin, PDA, brain bleeds, PICC lines, ROP, desats, Surfactant....I still remember what all of this means. It feels like yesterday that we were there with our baby. Obviously the NICU has become part of us and we will never forget our time in the NICU.
10. It is just plain hard. It is hard to have a baby in the NICU and it is hard to lose a baby.
So join us on October 15th and remember all little ones who have gone too soon. Light a candle and help us remember.
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