I'm Julien, the Miracle Baby
Ken left the hospital to run home and grab some things and my midwife, nurse and doctor stepped out of the room. They came back a few minutes later to tell me that I had 2 Braxton Hicks contractions and that the baby’s heartrate dropped during those, which wasn’t a good sign. “We can’t put this baby through labor,” said my midwife. “He may not make it through all the contractions and stress from it.” With that, everyone came back into the room and told me to call my husband and to have him turn around and come back ASAP because they were planning on doing an emergency C-section within 30 minutes. In that moment, I felt like time sped up faster than I could process it. I felt panic on the inside and everyone on the outside seemed to moving faster and faster. Ken had just arrived back at our house when I called…I told him to turn around and come back immediately. For perspective, the hospital is 24 miles away…he made it back in 12 minutes. The anesthesiologist had just arrived to do the epidural as Ken was running back into the room. They got him suited up and he just made it in time to hold my hand during the epidural. The next thing I knew, they were rushing us to the OR. I was silently crying the whole time. The room was bright and they had me put my arms out like I was on a cross…..it was the most un-natural position and the scariest way I could imagine having a baby—not knowing if he was ok and everyone standing over me had a panicked look on their face. Ken was next to me the whole time and watched the whole surgery. All I remember is the anesthesiologist sitting behind me and wiping my tears the whole time. I don’t remember his name and didn’t get a chance to thank him for that kind gesture but it meant the world to me that he provided that sweet element of compassion during such a scary time for us. I kept asking Ken if the baby was ok and he kept telling me “yes” but I knew from the look on his face that something was very wrong. When they pulled Julien out, his muscle tone was terrible—his body was very limp. He cried for a few seconds and then stopped. They had to immediately put him on oxygen. They wheeled him next to me for a few seconds so I could see him and touch his little hand. They said they had to rush him up the NICU and Ken asked if I wanted him to stay with me or go with the baby. I told him to go with Julien and not to leave his side. Julien looked up at Ken while they were wheeling him upstairs. For that moment, it was like Julien knew he was being taken care of and watched over by his daddy. I was wheeled into the recovery room feeling emotional, drugged and dazed. I texted Ken from the nurse’s phone to see how the baby was doing. It wasn’t looking good. Julien wasn’t able to breathe on his own and he had to be put on a ventilator.
Ken came back downstairs to see me in recovery and showed me pictures that he took of Julien when he was born and while they were getting him set up in the NICU. An hour later they brought me to my hospital room where I had to remain immobile for 12 hours. While I layed in bed, my mind was racing. I just had my baby cut out of me unexpectedly (with no labor), he was rushed to the neonatal intensive care unit and I couldn’t see him for 12 hours. What plagued me the most was that I wanted to know WHY. Why did this happen to Julien? Why, after everything that I did to eat the right foods, attend all the doctor’s appointments, etc. would something like this happen in my final 2 weeks of pregnancy when I thought that I was out of the “danger zone?” I kept beating myself up asking “did I miss something?” or “was there something that I did (or didn’t do) to cause this somehow?” I think it is natural for a mother to wonder if there was more she could do to save her child from harm….but according to everyone I have spoken to, it was a good thing that we came in when we did because he may not be with us today if we waited until the next day.
Finally 12 hours later, Ken was allowed to wheel me up to the NICU and I was able to actually see my baby. I started hysterically crying. Nothing could prepare me for what I saw. No parent should have to see their child hooked up to tons of machines and have wires around their head and into their stomach. He was hooked up to a breathing machine, an EEG for his brain, an IV line in his belly button, heartrate and oxygen monitors, etc. He had a few “silent” seizures so they put him on Phenobarbitol and scheduled a brain MRI. The brain MRI showed “moderate” brain injury as a result of low oxygen to the brain. His official diagnosis is HIE (Hypoxic Ischemic Encephalopathy).
We still have no idea how this happened and sadly, we may never know. I think that is the part that torments me the most. We had a perfectly healthy baby boy and then something happened and we don’t know what it was. One possibility was that the placenta started to break down and wasn’t working as efficiently towards the end. They sent it off to pathology and the results came back totally normal. Another possibility is that Julien compressed the umbilical cord either with his body or he may have grabbed it and squeezed it. Knowing how strong Julien is and how much he loves to grab things, it wouldn’t surprise us if he compressed his own cord. It is too early to tell what types of developmental/learning challenges Julien may face but a lot of that will be determined within the next 12 months when certain milestones need to be met. Julien has to go to regular appointments with a neurologist, a physical therapist, an occupational therapist and his pediatrician.
I keep looking for one of his doctors to tell us that our son is “going to be ok” and nobody will tell us or provide us with any comfort because nobody knows for sure. His neurologist said that “we will just need to wait and see, however, there is a “stem cell” treatment procedure being done (with success) in Monterrey, Mexico at the university hospital that we should strongly consider.” He provided us with the contact info of another family that went through this treatment and it changed their lives completely. We decided to contact that family to discuss their experience and we had the most amazing 1-hour conversation with them. We did a lot of research on the procedure, the hospital where it is conducted and the doctor that performs the procedure. I spoke to the doctor conducting the procedure and she is extremely kind, compassionate and confident that this procedure will help him. There is no guarantee that it will work but all we know is that we both want to give this a chance to possibly “head off” any potential problems in the future. It was recommended to do this sooner rather than later since his brain is still developing and forming connections. It was an expensive procedure but we knew in our hearts that it was the right thing to do to give our little guy the best chance at an amazing life since he had such a rough start. We traveled to Mexico on September 24th and stayed for 9 days. They harvested his own stem cells from his bone marrow, separated the stem cells out from the plasma, red blood cells, etc and then they injected those stem cells into his spine so that they have a direct pathway to his brain. The goal is for the stem cells to help the brain to create new neuropathways and improve his muscle tone, motor skills, etc. There is a possibility that the procedure will only need to be done once, or we may need to go a few times to give his brain an extra infusion of stem cells to help it along further. Only time will tell. It has also been recommended by his doctors to do “Hyperbaric Oxygen Therapy.” The full story on this is below. This is the other treatment option for HIE and it helps the stem cells do their job even better. In addition, it helps to bring more oxygen to the brain. We started doing treatments at Hyperbaric PHP in Buford, GA and Julien tolerates it very well. The clinic director, Bill Schindler, along with his entire staff is amazing and we love them dearly. We will need to purchase a chamber of our own since he will need daily treatments for a prolonged period of time and we could use your help.
I have learned a lot of lessons from this…..the main one being that Julien “chose” us for a reason. He was meant to be born in this way and it is our job as his parents to provide him with the best possible care to support his journey. We can’t control his experience, nor can we heal/fix what already happened. We have to heal our own hearts from this traumatic experience in order to be a strong support system for this powerful little boy. He needs us more than ever right now and we need our village. If you feel drawn to help us, even $5 can make a difference. Even sharing this on your own facebook pages can help….prayers are also a wonderful way to contribute to our little boy.
Thank you for all the love, support and prayers. We will be sure to keep everyone posted on this website. Your love and support provides us with the strength to get through this difficult time and it means the world to us as we navigate this difficult journey with Julien….our miracle baby.