A #NICUAwarenessMonth Story: Jones Geller

I had a high risk pregnancy due to complicating rH antibodies in my blood, so starting at 8 weeks, I had an ultrasound every two weeks to make sure Jones wasn’t becoming anemic in my tummy. Not only was there no anemia, but everything looked great. My nutrition was on point, and I could tell. I was very sick the entire time but very focused and excited. I found a local birth center and an amazing doula and attended 5 of the 6 classes with my husband before Jones’ arrival. Due to past trauma, I was terrified to give birth vaginally, but believed it to be the best choice for my son. On Friday, March 24, I was wondering if my waters had broken because of a small amount of brownish liquid that had leaked out in my sleep. My doula encouraged me to listen to my body, and by noon the message was clear: I was having intense, painful contractions that were exactly 5 minutes apart. We said goodbye to our pets and told them we’d be back soon with a baby boy.

In reality, I wouldn’t return home for 80 days. At the hospital, my contractions intensified but I never dilated past 1cm. I was dripping sweat and moaning from the pain. I used the bathtub, the TENZ unit, and received narcotic pain meds, and was suffering immensely. The hospital gave me the choice to go home because I wasn’t dilating, and come back later, and I knew that wasn’t an option. By midnight, it was obvious from the NST that something was going on with my baby because his heart rate was holding at 180, and the doctor agreed to deliver my baby via C-section, but she had another baby to deliver first. I begged for an epidural, but because I needed a spinal tap for delivery, I couldn’t have one. I had to wait over an hour. I received more narcotic pain meds to get me through. I will never forget that pain. By the time I got my spinal tap, my doula had arrived and at 3:38a

m, Jones was born. The doctor held him up to me for a quick kiss through the drape and they took him immediately, so our doula followed. My husband stayed with me, already knowing something was wrong, but not letting me see, because I was so happy. After I was stitched up, I realized something was wrong because my baby was still elsewhere. My doula told us they were trying to help him, and panic set in. By 9 am, a new doctor told us our baby was dying and that we needed to get to his bedside right away. We entered a different room that was completely full of doctors and nurses working on Jones. Someone asked if we wanted a priest or rabbi. I was in a wheelchair from the C-section but I got to my feet and held my son’s hand and told him we trusted him- if he needed to leave, he could. We told him we loved him and that he had already made us happier than we had ever known. Within a few minutes, I remember hearing someone say that Jones was stabilizing, that our presence was helping save him, and we held his hand tighter. The LifeFlight helicopter was on the way, and the doctors worked to keep him stable. They could only tell us that every system in his body had been oxygen-deprived and damaged, and the way to prevent a further inflammatory response was to cool Jones’ body temp down to 92 degrees Fahrenheit. My baby was placed in a cooling tank and we never left his side while we waited for the helicopter. When they arrived, it took two more hours to safely transfer him from one incubator to another used for travel, and I watched as they lifted off and headed for Denver. The doctor offered to sign me out of the hospital then and there, so we could drive to Denver, but I knew I needed one night in the hospital after my C-section, so on Sunday morning we left for Childrens Hospital Colorado. No one could tell us what happened, other than the obvious meconium poisoning.

Over the next month, we lived in the hospital with him, each morning bringing crippling anxiety as we approached his room, because we were hoping he was still there. There was still no diagnosis, and the doctors at Children’s ran more tests on Jones than they had in their career. His pulmonary hypertension was the worst they’d ever seen. He wasn’t able to eat. He was in liver failure. We were interviewed by expert teams ranging from genetics to infectious diseases. Nothing came of any of it. Over the next several weeks, Jones made huge steps both forward and backward, and we were asked on two more occasions to return to his bedside to say goodbye, but he kept pulling through. We were able to stay at the local Ronald McDonald Charity house instead of the hospital, which was right down the road and helped our mental health. Our friends and family started a GoFund Me for us, because my husband lost his job while we were in the hospital. Once he was able to consume some breast milk, he started to improve. Jones shed all forms of his life support and after 80 days in the NICU, we are finally home with our baby. I am still grieving the loss of the beginning that I tried to give my son. I felt unseen, after doing everything in my power to ensure a positive outcome, and finding myself in the midst of terror and chaos. I held my son down during painful moments, because it was better than a stranger. I need time to recover from this trauma, but my son is an absolute miracle, beating near impossible odds, and that is the big picture that matters. Having a new baby is hard, and having a medically complicated new baby is really hard. My baby can’t breastfeed, as he was intubated for the first 2 months of his life, so instead I have to pump around the clock and feed him through a tube in his tummy. He has no microbiome from antibiotics. He can’t turn his head one direction from where he was hooked up to the ECMO. We have four therapy appointments a week and countless follow ups. But we’re all still here and I have to focus on the reasons to be so grateful. I appreciate this chance to honor myself and my son for all we have been through. – Josey Geller