Long post, partially about my cancer journey, partially about my son's prematurity journey. Completely about my journey. 😊 

My story begins before I became pregnant. When I had to change OBGYNs due to mine leaving her practice at another hospital, I decided I wanted one that was associated with GBMC because I wanted to deliver there, just in case I had any complications. Well, as fate would have it, I went into preterm labor, completely unexpectedly, 9 weeks before my due date. I was seen right away after a phone call letting them know I was on my way, examined, where my water completely broke, and was rushed to a L&D room to try to postpone labor as much as possible. I was immediately hooked up to IVs, given magnesium to try to prolong my labor, steroid injections just case the magnesium didn’t work to help strengthen my son’s underdeveloped organs, and just 3 short hours after my water slightly broke (at my baby shower I should add), my son was born. Terrified, emotional, and hungry since I had to leave my shower before it even started, the staff there was phenomenal. From clearing out the room when they knew the magnesium wasn’t working and I was going to be having my baby, to easing my nerves about my baby and what was going to happen. They knew there was enough time for our family picture before taking him to the NICU, so they were nice enough to let us pose for a picture and then took him straight to the NICU. The NICU was also phenomenal, but I’ll get to that later. The nurses who were assigned to check up on me throughout the days and nights I was there were amazing. They knew our situation, handled me with care, made sure we had everything we needed, including access to the NICU’s direct number and information about going up to see our baby. They told us to call and go up as much as we would like, and not to worry about “being a bother.” I was fortunate enough that my personal OBGYN I had been seeing throughout my pregnancy was the one on call the day I went into labor and was also scheduled there the day I was to be discharged. She came in to check on me, and did not leave the room until we felt like all our questions were answered. Dr. Kesler-O'rourke is literally a Godsend. The time came for me to be discharged and I prolonged it as much as possible because I was not ready to leave my son behind. The nurses all told us to take our time, we could leave as soon or as late as we wished. When we finally packed up and my husband (at the time) went to get the car, someone from the cleaning staff came in the room to make sure we didn’t need anything and could tell I was about to lose it. She asked if my baby was in the NICU and when I responded yes, she let me collapse in her arms for a minute. She told me everything was going to be okay and he would be home before we knew it. This was not a nurse or doctor who was familiar with our situation or had been caring for us, it was just a woman who was there to clean and restock our room. And I am forever grateful she came in the room when she did so I was not alone for my first of many breakdowns.

 

Now it is time to recognize the NICU staff for the amazing job they did not only caring for our son, but truly caring for us as well. All the staff there are truly angels, even when they are having a rough or bad day. There were some nurses we preferred over others, but that was more for personality reasons than concern of care reasons. Everyone has different personalities and different personalities can sometimes clash. We never had to worry about leaving our son and what would happen when we were not there. We knew if anything were to happen, they would have someone call us as soon as possible. We knew if we had questions about care they were administering, may need to administer or would like to administer, we would not be leaving without peace of mind. There were nurses there I bonded with, including but not limited to Kris Baker, Julie Ward, Holly, Monica, as well as Neonatologist Dr. Pane, and Speech Pathologist Patti. The nurses there were so helpful I eventually could tell when my son was going to have a Brady or de-sat, BEFORE the monitors alerted us that it was happening. I learned so much from everyone there and truly felt like part of my son’s care team, and not just an outsider. I will never forget the night before my son was discharged to come home. I came in to learn infant CPR and when I returned to my son’s room from my training, Monica had turned off his monitors, unhooked him from all the wires and electrodes and stood there smiling. My face lit up and she said, “we figured if he is going home tomorrow, he doesn’t need to be monitored anymore.” To say I was excited was an understatement. I held my son for the second time in his short life without him being hooked up to anything, 8 weeks after the first time. I remember skipping out of the hospital that night, exclaiming to all the nurses how excited I was to call my then husband and tell him the great news. And I could feel they all genuinely cared. Kris was our nurse the day he was discharged and made sure we had everything we needed; including a final lunch between just my then husband and myself while they were getting our son’s paperwork in order. If it weren’t for the amazing staff in the NICU, our lives would be completely different. Our son is now NINE, has no major medical issues and is right on track, if not a little advanced, developmentally.

 

Unfortunately, our son’s hospital stays didn’t end at GBMC. He was discharged home to us during Flu season and a week later, despite our best efforts to keep him away from germs, he contracted a cold that landed him at another local hospital. While being treated at said hospital, I called GBMC NICU and talked to Dr. Helou to get advice about his care and our options. He advised us it was our right to request a transfer if we did not feel our son was getting adequate care, and advised us that 2 of the local hospitals were both excellent options and not far from home. After a lot of back and forth, the first hospital agreed it was in our son’s best interest to be transferred. One was full but the other was not so he was transferred there. After a week of treatment, he was discharged home where he would stay for 3 more weeks. Sadly, he developed another bad cold that quickly turned into pneumonia and led to a 7 week stay at a local PICU, and an additional 6 weeks recovery stay at a children's rehabilitation hospital. During all his stays, we took with us our knowledge and experiences from GBMC NICU to ensure he was getting the proper care and finally, at almost 7 months old, he was home with us for good. He did have to have a feeding tube placed during his last stay due to being intubated for such a long time he inherently forgot how to bottle feed. Fast forward 9 months following his last discharge to getting his feeding tube permanently removed. He is now 9 years old, not on any daily medications, restrictions, etc., is in 3rd grade excelling especially in math where he is in a gifted and talented class, superstar baseball athlete on a local travel team and is doing everything a 9-year-old is supposed to do. If it weren’t for our experiences with GBMC’s NICU, we wouldn’t be where we are today, and we wouldn’t have a little “extra” love in our hearts for our son. We also wouldn’t be as protective-in a non-overbearing way, as we are. Finally, I wouldn’t have completely changed career paths from Office Management to Pediatric and Adult Mental Health Occupational Therapy Assistant if it weren’t for our experiences that began with GBMC’s NICU.

 

To really add to the story, in 2021 I found a lump in my right breast. Dr. Kesler-O'rourke was again phenomenal in seeing me quickly, having me send for imaging quickly and after hearing the lump was malignant, referring me to Dr. Fogarty very quickly. Dr. Fogarty reminded me so much of Dr. Kesler-O'rourke personality wise which eased my mind so much. She took the time to go over EVERYTHING and every single option and then made a copy of her notes to send home with me. After genetics testing we discovered I not only had IDC stage 1B breast cancer, hormonal positive, her-2 negative, but I also had the BRCA-2 mutation. This led to the very difficult decision to have a bilateral mastectomy with reconstruction instead of just a lumpectomy with reconstruction if needed. This also changed my treatment plan, which my medical oncologist, Dr. Donegan, helped ease my mind and walked me through my options, gave me information to get second opinions if I felt it necessary while also advising what medically speaking my best option(s) was/were. I ended up having 4 rounds of chemo, 3 weeks in between each one, I did lose my hair, like completely as a result which was extremely difficult for me, but everyone in the chemo pod, my care team, etc. all were wonderful, provided me with resources, advice and everything I could possibly need at some point. Fast forward to 2023, I was instructed it was time to discuss bilateral salpingo-oophorectomy as a preventative measure. My oncological GYN was amazing during this process, Dr. Liu, everything was as smooth as possible, recovery was fine, no indications of cancer anywhere. I am back in recovery stages, on an aromatase inhibitor for continued hormonal preventative treatment for a few more years and thriving. My hair has come in nicely, and I actually like it most days even though it is still shorter than I have ever voluntarily had it. 

 

I owe so much to GBMC and could go on for hours about how wonderful everyone there is. Most of my care team are through GBMC, with the exception of my PCP because he is amazing but affiliated with another hospital (however once he retires I have already decided I will look for a PCP affiliated with GBMC). GBMC saved my son's life, saved my life, and just continues to provide extraordinary care.