Wednesday, March 7, 2012

Unexpected Bond

In less than a month, I've made unexpected bonds with mothers of former micro preemies. They had 1 lb. 5 oz. babies that came weeks too early just like Elise. Now they have grade school children who you would be shocked to know once laid in an isolette and on a ventilator for the first part of their lives. One mother has a National Honor Society daughter and one mother has a 3 year old daughter that she can't keep up with in life.

These mothers have reached out to me when I needed them the most. Their words connected (and still connect) with me at such a deep level because they know what shoes I'm filling and exactly what roller coaster I'm on. I can trust their comments such as, "It will get better," or "Once Elise hits 2 or 3 years old, you will see little to no remains of the prematurity."

After writing last night's post, both of my "preemie mentors" as I like to call them, wrote me privately. I wanted to post parts of their messages because I couldn't phrase my feelings or thoughts better than they did.

One mother wrote: 
I completely understand your feelings of having nothing to contribute but milk, and when they don't give them that where does that leave you? Its okay to be mad. Its okay to be sad. Its okay to be frustrated. They tell you the NICU is a roller coaster but they forget to mention that sometimes it feels like you are on the tracks and the cars are running over you repeatedly. They also can't come close to describing the incredible highs that come on the good days. Before you know it Elise will truly need you 24/7. Someday she will be a six year old who puts her arms around your neck and says, "Mommy, I was your little miracle wasn't I?" And it will still make you cry.

Another mother wrote:
I could sympathize with everything you posted about last night. No two days were the same in the NICU. We never knew if our daughter would be climbing the roller coaster or going down so fast that we could hardly catch our breath. There's something to be said about a woman's intuition and a mama's heart. And, like you said, as a NICU mom, you feel so helpless. You can't pick them up and "fix" what's wrong, but we are our child's #1 advocate. And, the "funk feeling" NICU days are totally normal, too. And, yes, sometimes it was hard for me to hear how optimistic everyone else was for us when I felt like things were so uncertain. "Everything will be fine" did not sit well with me some days. 

For other NICU mommies out there, here are some other comments that might not sit well with you on most days, but have faith that all of us have heard them (probably more than once).

"Oh, I had a premature baby too. He was 34/35/36 weeks." --You want to say, Really? Try 24/25/26 weeks.

"Tomorrow is a new day!" -- Yes, true. However, when you have 90+ days to get through, tomorrow is just one more day on the roller coaster.

You send an update with not the best news and get back, "She is a fighter and will sail right through this!" --Really? How do you know? I'd love where you are getting this inside scoop. You crave to believe this, but your worry as a Momma consumes all your thoughts and you start to really doubt the optimism. After all, you are sitting by the bedside, listening to the beeps, and seeing the doctor's concern on his face. When someone gets an email/text update from you, they are carrying on their normal day and getting the "run down" version from you of what's really going on.

We know that everyone is writing or saying these comments with the best of intentions. We must remember that these people want the best for our families. Everyone (I know I am) is guilty of saying "I know how you feel" when he/she has never walked a day in the shoes of the other person. However, without support from family and friends, where would we be? Scary thought.

I hope this post tonight helps other NICU mommies that are struggling (like we all have) with "classic comments," which is what G and I like to call them. Remember this: this is YOUR experience and YOUR feelings. You have every right to feel the way you do.

Tomorrow IS a new day and we want a HILL on the roller coaster!


  1. You are so fortunate to have found other mommys to bond and share NICU and preemie stories. When we were going through this we did not know anyone that shared a similar experience. It wasn't until well after the fact that we started to meet people that shared a similar experience.

    The most hearbreaking comment for us was "When will she be coming home?" We heard that many, many times a day and we never knew the answer, until the day before she was ready, because as you know anything can happen.

    I believe that regardless of whether you have a preemie at 34 weeks or at 25 weeks, there is always that roller coaster, those intense emotions, and the longing to be with your baby. They may not be the exact same as others, but they are still there and those feelings are not any less.

    I never thought that I would have the NICU bond when we started planning for a family.

  2. Hi! I hope you know that even when friends and family say things that are not exactly what you want to hear, that they are saying them because they care about you and your family! We may never fully understand another person's experience, but when we listen or try to offer empathy it is because we care. I am glad that you are finding friends that you feel you can relate to and that will be great support for you! However, I agree with Amy that parents deal with a wide range of emotions no matter how long their baby stays in the NICU. Parents may even have children who never stay in the NICU who deal with a whole set of completely different challenges that experience pain, loss, and grief when things don't turn out the way that they had been hoping for.