Hand to Hold's Official Blog: Written by Parents for Parents

A NICU Sisterhood Found – Stella’s Story

“I’m very concerned because it seems a sac has torn on Twin A.”

“Should I go on bed rest?”

“Sure, that would be best.”

I had no idea what a “torn sac” meant; but I knew I was only 15 weeks into my pregnancy, and I needed to take it easy to protect my babies.  I put myself on self imposed bed rest, set myself up with snacks and plenty of fluids, and waited for my husband to come home at the end of each day.  We waited for things to “get better.”  I was already a mother protecting my babies—I was doing the right thing.

What wasn’t conveyed was that a torn sac usually means water breaking.  What wasn’t conveyed either, was that it was almost certain that I would go into pre-term labor at 15 weeks and lose both babies—it was just a matter of time from a medical perspective.  In this case, ignorance was bliss.

I continued to go to doctor’s appointments and two heartbeats continued to beat.  I learned that the torn sac never fully replenishes itself, so development cannot proceed as necessary for the baby with the torn sac.  The weeks progressed as specialists advised me to make a decision that would save the healthy, fraternal “Twin B” by forsaking “Twin A.”  Did they really think I could make that kind of decision when it was so plain to see that he was trying so hard to live?  Going to sonograms was not a happy visit as it almost always is with a “regular” pregnancy—it broke my heart to know my baby was trying so hard, like his mom, to do the right thing.

Things never got better.  To our credit, the babies and I went to week 22 but then things took a turn for the worse as if they could get any worse.  The thing they said would not happen did happen—I gave birth to “Twin A,” but then my cervix closed up and allowed “Twin B” to stay in my body and continue to grow!  They swore “Twin A” would die in utero, and even if he lived, doctors were convinced that he certainly wouldn’t be able to breathe as his lungs could never develop without full, amniotic fluid due to the torn sac.  But, against all odds, my baby breathed on his own, even if only for a very short time, but he did do it.  He miraculously stayed and kept his brother safe; then, we had to say goodbye to our little fighter and our little angel, Andrew.

Eight miraculous days later, “Twin B” could not stay in utero any longer but those 8 days allowed us to cross over to the magic timeframe known as “viable” in the NICU world.  Our Trevor came out kicking at 24 weeks gestation and went directly into the NICU where we set up shop—for how long?  We had no idea.

Once in the NICU we had to buckle up for a crazy, rollercoaster ride of so many successes, setbacks and emotions.  Not yet fully able to grieve for one son, we had to focus on his brother and the obstacles were plenty.  There were so many medical terms that were like monsters we had never heard of before, yet we had to fear and slay them on behalf of a baby born way before his time.  We had to face possible heart issues, stomach issues, neurological issues, brain bleeds, and blindness just to name a few—it was too much!

When a baby is born, it’s supposed to be a happy time yet, when my husband and I walked into the NICU we knew our nightmare, in many ways, had just begun.  I had no point of reference—I had not even had time to go to a Lamaze class when things started to go desperately wrong in my pregnancy.  I walked up to a baby covered in tubes and leads from every part of his body, more wires and tubes than baby.  He was so small at 1 pound, 10 ounces.  At this gestation, a baby hasn’t yet developed fat—they are horribly skinny and frail with almost a purple coloring because you can see all the veins through the thin skin.  Neurologically speaking, to hold the baby would blow his “computer of nerves,” so all I could do was sit beside him all day long and talk and sing and hope.  I would watch helplessly as, once again, I had a baby struggling to survive.

Then one day, a dear friend remembered that she had a neighbor that had a baby born prematurely, so she introduced us by e-mail.  In many ways, I didn’t want to talk to anyone—I just wanted to be beside the baby that I wasn’t yet allowed to hold and not be bothered.  Besides, how could anyone understand what I had to endure each and every time I walked into the NICU?  But this was someone who reached out to me and understood exactly what I was going through because her baby was also born at 24 weeks.  She even had her baby at the same hospital one year before me—I had to make time to meet her.

I met Kelli, and we hugged as if we had known each other for years—in many ways we were immediate sisters.  She understood the medical terms, but most of all she understood all of my emotions.  From that point, I called her every time we got a new diagnosis and she was on my e-mail updates and knew what happened every day with our little warrior.

I assumed, wrongly, that once we were out of the NICU we were home free.  I found myself continuing to call Kelli throughout the years.  She calmed my fears and reassured me with therapist recommendations and guided me all along the way of our post NICU experience.  One day Kelli called, knowing that Trevor was thriving, and she asked me if I wanted to help start a parent support group at the hospital where we had our babies.  She said, “Wouldn’t it be great for previous NICU moms to talk with current NICU moms and help just by simply understanding the NICU experience?”  How could it NOT? Kelli was a prime example of how invaluable it was for my peace of mind—how could I not help with that endeavor?  Then it occurred to me that Kelli had to go through the NICU experience and the post-NICU issues without anyone to guide her and truly empathize with her.  She did not benefit from the gift that she was to me.  So there we were, the gift giver and the recipient. And it was a formula that we knew worked.

For one year, I attended a monthly, parent support group and I recounted my story for moms who looked liked me when I entered the NICU:  shell shocked and worn down, on the front lines of an invisible war not many are privy to.  It was SUCH a sense of relief for these moms to finally talk to someone who “gets it”—and we were there to embrace each other—instant sisterhood again.  One month my husband came to help facilitate a meeting with me.  He connected with the dads, as only dads can, and he realized how much he, too, would have benefited from the same experience.

Of course, Kelli went on to do more than just organize a support group, as evidenced by the creations of Hand to Hold.  Kelli Kelley may not truly ever know what a source of inspiration she was and continues to be to me.  The gift she continues to reshape and give away gets more and more profound.  Thanks to her vision, Hand to Hold exists to remind you that you are never alone with a premature baby in or beyond the NICU when you have a brigade of angels like Kelli on your side.

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