Today’s story of perseverance comes from Shanda Miller, and her family’s experience with premature birth, NICU stay, and the effects of the premature birth of her twins.
Mom to: Lyla (7), Memphis and Savannah (4)
Briefly describe your experience with your twin's premature birth and the struggles they have experienced during their life.
My premature labor came on spontaneously when I was only 23 weeks and 3 days into my pregnancy with the twins. We rushed to the hospital where they told me I was already dilated to a six and that we should prepare to have the twins that day. Before they would give me emergency steroids to try and help the twins lungs, we were required to meet with a neonatologist. She stood at our bedside and told us that statistically, a baby born at this level of prematurity had less than a 10% chance of survival, and only a 2% chance of survival without profound neurological damage. We had a choice to make, we could choose to treat their birth as a miscarriage, or we could choose to provide lifesaving support, with full understanding of the probable outcome. We told them we wanted every life saving measure available and then we experienced a miracle; the twins stayed inside another four days and came at exactly 24 weeks.
Since I had been lying in bed dilated to a ten for four days, when my labor came on, I was rushed into an emergency c-section to give both kids the best chance of not losing any oxygen. I was not allowed to hold, or even see them, before they were passed through the window into the NICU to begin the long road forward. Because of my c-section, I wasn’t able to see them in person until they were three days old. When my husband wheeled me in to see my tiny babies in their isolates, covered in monitors, IV’s, and intubated, I wondered how to be a mom to babies I couldn’t feed, hold, comfort, or even touch most of the time. The only thing I could even think to do was to love them, and that love would have to take on the form of advocating because it was literally all I could do.
Savannah was transferred to Primary Children’s Hospital on day five of life for an emergency surgery on her intestines. She ended up having three surgeries on her intestines before coming home. She also needed a heart surgery within the first month of her life. She was intubated and sedated for the first four months of her life. When she was able to come home, she came home on oxygen and was on oxygen for several months after. Savannah had severe brain bleeds and we were told we could choose to pull support as they knew she had extensive brain damage and there was no expectation for her to be able to walk or talk. Again, we chose life saving measures. She had three brain surgeries during her time in the NICU, she now has a shunt and has undergone two brain surgeries since. It is nearly impossible to enumerate all of the infections, code blues, procedures, and everything else she endured during her seven months in the NICU.
Memphis was transferred to Primary Children’s Hospital when he was 2 ½ weeks old for the same emergency surgery on his intestines that Savannah had. He had two gut surgeries before he was able to come home. He also had to have the same heart surgery as Savannah in the first month of life. Memphis was intubated and sedated for the first five months of life. The long-term sedation caused an opioid dependence and he spent several months in withdrawal. He also has permanent vocal fold damage from the intubation. He had severe retinopathy of prematurity; and had a total of four eye surgeries before we left the NICU. He still struggles with this, and is classified as blind, although as of right now we are still able to correct his sight with glasses. We also found out in the NICU that he was deaf. He has since undergone surgery to have cochlear implants and is learning ASL. As with Savannah, it is impossible to enumerate all he underwent and the many times we almost lost him during his eight-month hospital stay.
Who or what helped keep you grounded during this challenging time?
If I am honest, being grounded was difficult. Regardless of all of the people that rallied around us, the only times I really felt grounded were when I managed to tap into Heaven and rely on Jesus. In the moments I did that, I was able to feel peace amid the chaos, the constant change, and the ultimate unknown.
The next biggest help, still to this day, is that I am part of what must be the best neighborhood in the entire world. As a neighborhood they stepped forward, providing child care for my older daughter every day I was at the hospital. As well as, making sure that we had dinner nearly every day FOR A YEAR! My neighbors volunteered to come help me clean the house, do the laundry, and take care of all of the daily life stuff that I just couldn’t carry anymore. To this day they support our family, not in the same ways but definitely with the same love.
We also had so many family and friends, even distant friends, come forward and help in every way they could. It was an incredible experience to see and feel love from so many.
How did you balance the needs of your family and yourself while still allowing room for grieving and coping?
The twins are now four and a half now and I *think* I am finally making space for grieving, thanks to therapy. I am much more of a doer than I am a feeler so, in a crisis, I can see what needs to be done and do it, shutting off my feelings for another day. I did it for so long that it became a habit, to keep pushing off the grieving. There really was no thoughtful balance, we just tried to survive, using whatever coping mechanism that came along the way.
People would always say, “make sure to take care of yourself too”. In all honesty, this became one of my biggest pet peeves. Don’t get me wrong, I knew they meant well, bless them for it, and I’m sure I had previously said something just the same, but there just was no way to do it. I had two babies in the hospital, literally fighting for their lives. I had a 2 ½ year old that still needed her parents in a big way, and her world was just as upside down as ours was. When we did finally get them home from the hospital it was a hundred times harder.
What advice would you give to parents in a similar situation?
Just take a deep breath and go day by day. There is no right way to do it. There simply isn’t. Just lean into whatever your strengths are. Do what you can, rely on the people around you, heaven if you are so inclined, and let go of the rest. When all is said and done, that is really all you can do. And that is ok.
What has this experience taught you about resilience?
If I had known what was coming, I would have never believed myself capable. I never would have believed it would be possible to endure. But here we are, four years into what would have seemed beyond impossible, and we are making it, it is all second nature to us. Now, it is impossible to imagine our lives without the twins and all that they bring to our lives, and all we have learned and continue to learn from them.
I have learned we all have grit beyond what we could ever imagine. We all have power deep within our souls that isn’t accessed until it is needed. I don’t know that we ever come back to who we were before experiences like this, we grow, we evolve. When we experience our own power, it changes us. I know it is in all of us, we just have to believe it is there.
Update on your kids
Memphis and Savannah are nothing short of miracles. Not only did they beat the odds and live, they are doing amazingly well. Their combined surgery count is now 27. Both have cerebral palsy, both still unable to eat or drink by mouth and are feeding tube dependent, both have extensive daily treatment for their severe lung disease, both face huge physical and developmental delays, and endless doctor and therapy appointments. But Savannah has learned to walk independently and she never stops talking. Memphis is becoming more and more verbal, as well as learning ASL like a champ, and he never stops moving. They are happy and loving and vibrant, soaking in all the good this world has to offer.