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

Riding the NICU Roller Coaster, Times Three

Avery & Lily at home

25 week triplets waiting for their sister to come home

If you are familiar with the preemie world, you have most likely heard the NICU experience referred to as a roller coaster.  With all the baby steps forward and the major and minor setbacks along the way, parents often feel as if they are on a hair- raising carnival ride; and much like riding on a roller coaster, the passenger is not in control.  As we dive down hills and spin around the curves we lean our bodies this way and that, bracing for the next turn or dip in an effort to lessen the effects on our insides.  We try to feel some sense of control when there is none to be had.

Imagine being on two roller coasters at the same time or three, four or even more. As one roller coaster steadily climbs the hills, the other may dip suddenly while yet another slings you to the left.  Such is the NICU life for a parent of premature multiples.  Our triplets were born at 25 weeks 5 days and those three roller coasters rarely travelled along in tandem.  With those opposing rides running simultaneously came mixed and often opposing emotions.  The ever-present guilt that accompanied our joy for one or two of our daughters hitting a milestone while the third remained on the ventilator at week 13, was my constant companion.

To say this was a challenge would be an understatement.  I remember being overjoyed that I could finally hold Avery and Lily once a day, but my joy swiftly vaporized when I made my way to Zoe’s bedside where she lay in her isolette medically paralyzed to avoid expending even the tiniest amount of energy.  Or,when Lily was able to take her first bottle but Avery just kept hanging on to her high flow canula and Zoe had yet another infection.

After four months Avery and Lily were discharged while Zoe’s discharge was not even discussed as they expected her to remain in the hospital through her first birthday.  I assumed things would be better when I had two of my girls home, that at least two of my roller coasters would slow down a bit and maybe even level out.  I was not prepared for the additional mountain of guilt that came with not being able to visit Zoe on a daily basis.  We lived an hour from the hospital and Avery and Lily had all the common follow up appointments, therapies, and feeding schedules that only allowed me three or maybe four visits to the NICU each week.  Not to mention the anxiety I felt about planning the logistics of a one hour drive in Atlanta traffic and making sure we weren’t still in the car when it was time for a feeding.  Feeding my girls had become a carefully choreographed art where even the slightest mis-step in the schedule could throw off the entire day leaving me to fear I was “flooding” them with milk at night during their continuous tube feeding.  At first, even the thought of packing my babies up with all the necessary supplies and monitors to venture out of the house brought a quickening of my pulse and butterflies in my stomach.  I was not only a new mom, I was a new mom to premature babies with special health care needs.  I had to be prepared with much more that just diapers and wipes in my bag.  Oh, and don’t forget I was still pumping too!

Needless to say, the tug at my heart was nearly unbearable.  As Zoe finally began to make forward progress, I wasn’t there as often as I wished I could be and felt I was letting her down.  I was reminded frequently that Avery and Lily needed me home with them, that consistency in their care was so important for their progress.  I was also reminded that Zoe had the best babysitters in the world caring for her every need and that these nurses had come to love her like nothing I could have predicted.  Oftentimes I would enter the NICU for a visit to find Zoe in her bouncy seat surrounded by 5 or 6 nurses and RT’s all talking to her and playing with her.  As one nurse would tell me when I called in for an update: “Zoe was holding court today”.  This warmed my heart to know my little girl was being loved on when I couldn’t do the loving in person.

Visiting Zoe in the NICU

My 25 week triplets visiting Zoe in the NICU

After some adjustments we created a schedule that worked well for us where I would bring Zoe’s sisters with me twice a week to the NICU.  This allowed me time with Zoe while also being in the same room with all three of my girls, a dream I had held but had not really experienced to it’s fullest capacity.  On the weekends, my husband and I would spend one-on-one time with Zoe or one of us would have alone time with her.  On days neither my husband, nor I could visit, my mother-in-law spent hours with Zoe and on the occasion when she couldn’t be there, our NICU neighbor and good friend would sit with Zoe and talk to her while her son took his naps in the room next door.

I was one person with three babies who needed me and I was only human.  I could only do so much and there were only so many hours in each day. I feared Zoe wouldn’t know me as her mother, that she would think the nurses held that coveted title.  What I learned was that no one can take my place.  Only I had the voice she knew first, only I had the scent that told her “Mommy’s here”, only I could provide the unique and special love that exists between a mother and a child.  I learned that my love for all three of my girls ran deeper than I could have expected and that my love could never be quantified.  Most importantly, I learned that my love was enough.

Keira Sorrells About Keira Sorrells

Keira Sorrells (MS) is the mother of triplets, Avery, Lily, and Zoe, born at 25 weeks. Avery and Lily spent four months in the NICU and Zoe was there for 9.5 months. After coming home, Zoe was rehospitalized at 14 months and died suddenly from a secondary infection. As a result of those experiences, Keira founded the Zoe Rose Memorial Foundation which offers support to parents of premature infants and those who have lost an infant; as well as the Preemie Parent Alliance, which connects parent-led, preemie support organizations across the country. Her faith and connecting with preemie and bereaved parents has given her hope when it was hard to find. Follow her on Twitter, Facebook or on her personal blog.

Comments

  1. I can only imagine the logistics of trying to visit your baby in the NICU with two other micro-preemies with feeding and pumping too! I had 24 week twins so I do understand the conflicting emotions of celebrating one’s progress while getting bad news about the other- sometimes all in one day. It’s hard to feel so many emotions in one day. Great post!

    • Thanks Michelle – those tandem roller coaster rides are so hard! And the dichotomy of emotions was really challenging for me to come to grips with – that feeling joy for one baby’s accomplishment didn’t mean that I didn’t love my others. At some point we realize, as parents of multiples – that throughout their lifespan they will never soar or sink at the same time, every time! My girls are in kindergarten now and one is progressing at a faster rate than her sister – we don’t downplay a milestone to avoid the other feeling bad – we find the balance and teach the importance of supporting one another in rough and smooth waters. And most importantly that our love runs deep and is not earned by accomplishments – our love is just a given 🙂

      Keira

  2. You have an incredible story. Our Triplet Girls were born at 31 wks and spent 8wks in NICU. I remember the roller coaster ride of physical (hospital visits and babies coming home one at a time) and the emotions as we awaited test result after test result. Yet in our story, we were very lucky as they were all small, but fairly healthy. I can only imagine your day to day life. As I sit here crying my eyes out, I send my heatfelt condolences for your loss of Zoe. I also would like you to know that you have my deepest respect for your heart, spirit, strength, courage and love. For continuing on, for loving your daughters and for creating a place for other parents to find that same strength and courage to go forward. Thank you. Your family and the world is blessed to have you be a part of their lives. you have touched us all.

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