Our History

In July of 2006, my husband and I learned we were pregnant with multiples after two and a half grueling years of trying to conceive, with and without intervention. We spent the next several months doing everything we could to provide the perfect environment for these babies to grow. At exactly 25 weeks into my pregnancy, I was admitted to the High Risk Perinatal floor at our birthing hospital due to preeclampsia. Again, we and our doctors did everything we could to prolong my pregnancy; however, we were only able to buy five more days. We welcomed our triplet daughters into the world. They each weighed just over one pound and measured only 12” long each. Two of our daughters were quickly whisked to the NICU but were able to be stabilized shortly after birth. It took the doctors five long hours to stabilize Zoe. She was born with such terrible lung disease and an open PDA that she had to be intubated and put on the high frequency ventilator.

Our team of neonatologists were quick to point out that while the babies were stable, Zoe was by far the worst-off and was just barely hanging on. In her first four weeks of life she endured four chest tubes, a PDA ligation surgery to close that particular valve, multiple medications to keep her “snowed”, and her organs began to shut down because she could only be fed IV fluids. After seven weeks she was able to move from the high frequency ventilator to the conventional vent, on which she remained for an additional 7 weeks. We were not allowed to hold her until she was two months old. During those two months we could hardly even speak out loud to her for fear of disrupting her very fragile medical state.

Zoe’s sisters came home after a fairly uneventful four month stay in the NICU, with feeding tubes, apnea monitors, and multiple medications. Zoe had to spend an additional 5 ½ months away from her sisters. She was steroid, oxygen, and feeding tube dependent, had tracheomalacia and a blocked vocal chord due to prolonged intubation, and had severe bilateral hearing loss. She eventually made it to the step down nursery and while the above description of her condition may paint a picture of an unhappy baby, Zoe was far from that. Once her sedation was weaned and she was on the nasal canula, her personality emerged in full force. She became the love of the NICU with nurses, therapists, nutritionists, volunteers, and audiologists all stopping by her room daily to get one of her heart-warming and winning smiles. She, like her sisters, was truly a miracle baby and finally we were able to bring Zoe home.

She came home with quite a bit of medical equipment, home nursing care, multiple therapy follow-ups, and endless specialist appointments; but still she maintained her vivacious personality and through early intervention hearing loss education she was even able to start communicating with us. Zoe responded positively to her physical therapy as well and at 13 months old, she was able to sit up unassisted.

Bright futures seemed possible for all three of our girls as they continued to grow and thrive at home. We kept them quarantined through the Fall and Winter (RSV season) for fear of needlessly exposing them to infections and had a very short list of “approved” visitors and a very long list of infection control procedures to follow when in our home. Despite all the precautions we took, she contracted the flu and pneumonia and spent five days in the Children’s Hospital. She was able to come home for a day and a half before we had to rush her back to the hospital due to increasing oxygen requirements. She took her last breath in our arms the very next morning. It was two days later that we learned the reason for her becoming septic was due to contracting MRSA, which she most likely caught during her previous five day stay in the hospital. Because of her extremely premature birth, she simply did not have the immune system to fight the infection.

Parenting a child born so early is not the rosy picture portrayed in most media descriptions of childbirth. Our children often do not cry when they are born, we don’t get to hold them or kiss them and sometimes don’t even get to see them until days after birth. We are put in recovery rooms with moms who have given birth to full-term babies while we wonder if our children are even alive. When we do see our children for the first time, they are hooked up to IVs, monitors, oxygen support, feeding tubes, and in isolettes. We are told to wear protective gowns and wash our hands and can only change their diapers every 3 or 4 hours. This is the extent of our physical contact with our new babies, often for weeks. We are told not to even speak out loud. If we have plans to breastfeed, it is often a long, arduous and frustrating task as most preemies, especially micro preemies, lack the inherent ability to suck, swallow, and breathe. Our first breastfeeding experience is usually with a breast pump. We have to ask to touch our babies, we have to ask if we can help bathe them or change their clothes or blankets. Our image of parenting and our preconceived notion that the parent-child bond is one attained through physical contact has to be altered. There is nothing like parenting a micro preemie. There is nothing like walking out of the hospital without your child, day after day, week after week, month after month. But we do it. We have to, because they are our children.

This was how we lived for most of 2007. Through all of these experiences we had several occasions in which we had to fight hospital administration and insurance companies in order for our children (and especially Zoe) to receive the very best care and therapies they deserved both in the NICU and after discharge. It took us nearly three months from the time we first learned of her hearing loss to actually get hearing aids for her, all due to hospital red tape and an unwillingness by some hospital staff-members to work with us. We were able to piece together an incredible team of doctors and therapists to follow our children after their discharge from the NICU, but it was a world that we had to navigate for the very first time, all by ourselves.

Our Purpose

It became plainly obvious to us that there is a tremendous gap in services between being in the NICU with a micropreemie and coming home to care for a medically fragile child who has ongoing chronic conditions or other special needs. While in the NICU all the specialists are at your fingertips, however, the follow-up therapies and resources are often not even allowed into the hospital prior to discharge and are not advocated for or resourced by the hospital. The child’s care rests in the parent’s hands and the one resounding message we got was how important Early Intervention is for these preemie children to have a fighting chance at “catching up” to their peers. It is extraordinarily overwhelming to find yourself in a world of medical terminology that you know nothing about and yet have to educate yourself to such a degree so that all decisions regarding your child’s life are made correctly and appropriately.

By forming the Zoe Rose Memorial Foundation we want to help and support families of micro preemies, born 32 weeks and earlier, through education, outreach, and one-on-one parent support, which may occur upon diagnosis of high-risk pregnancy, NICU stay, prior to discharge or throughout the transition to home, and continue as needed by the families. Living in the NICU for weeks and often months as you watch your child fight for their lives and have to endure multiple procedures and surgeries is a stressful and traumatic experience. Often, just having another parent to talk to who has been down this path can make such a difference. We want to assist you, the parents and caregivers with micro preemie children in feeling confident, empowered and educated once that glorious day of discharge arrives. And we won’t leave you then. We will stick by you and be available to help you so we can help you navigate this new world once your little one(s) come home and YOU become the team leader for their health, care, and well-being.

Micro preemies are born months before typical, full term, healthy babies. This creates many complications and scenarios, many of which can become lifelong struggles and most of which do not even seem imaginable to their parents. The future for these children is often questionable and the parents are uncertain of what life will hold for them. But, with proper and appropriate care, our children can grow and thrive. We want to give you hope that you can conquer this and feel fulfilled in your role as a parent of a micro preemie.

Email: info@zoerose.org