ira karma michelle nott

September 2020

Ira Karma Michelle Nott, aka Snuggle Paw, was delivered prematurely on December 10th, 2019 by emergency cesarean section. My water broke 6 days prior and Ira was having a rough time. Little did we know a 2.5 month stay at Riverbend Hospital in Springfield Oregon was just the beginning of Ira's journey living in the hospital. We lived temporarily at The Heartfelt House in Springfield during Ira's stay in the Riverbend NICU. Ira was discharged a healthy premature baby girl on February 4th, 2020. We went home a happy family, a new baby to bring extra joy into our lives. Ira is baby number 6. Her sister Angelina, 7 and her brother Louie, 5 live in the home. We went about our schedule commuting back and forth to school 2 hours round trip every day and adjusting with Ira home. The first week of March I noticed Ira seemed sick, so I scheduled a doctor appt. Her lungs sounded crackly. We were told to put her in a steamy shower and suck her nose out... A 29 week premature baby with underdeveloped lungs, just put her in steam and suck her nose out? No chest x-ray or tests for viruses? So, I did my best. A few days later I noticed Ira seemed more sleepy than normal and less interested in eating so I called to see if I could get her in right away. During the hour wait for the doctor’s office to call me back I saw that Ira wasn't taking as many breaths and appeared a blue tint so I dialed 911, while talking to and interacting with Ira as much as possible to jolt her attention. During the 911 call and waiting for an ambulance I prepared myself to administer CPR to Ira. Right when I was about to start, the ambulance arrived and an EMT rushed over to take care of Ira. I had our dog in our car so I couldn't ride along with Ira. I jumped in my car and headed to Riverbend Hospital. Upon my arrival I was informed that Ira needed to be intubated right away and they were arranging transport by ambulance to Doernbecher Children's Hospital in Portland because Ira needed better care than they could provide. Unfortunatley the weather was too bad for her to get transported by air flight. Upon arrival at the pediatric intensive care unit at Doernbecher we found out she had acute respiratory failure, came back positive for RSV and a couple other viruses. Within several days Ira had a really rough time keeping her breath and had to be bagged many times. At one point Ira actually turned blue and was revived. Then the doctors informed me Ira needed to be placed on ECMO, which is a lung and heart bypass machine, it siphons her blood out of her body, oxygenates it and then puts it back in. Ira had surgery to place her on ECMO and remained on ECMO for almost a month! Ira was intubated for almost 2 months. Due to this she has little to no interest to eat and has been on a continuous feeding pump. There was a point where they found that she had a head bleed. That put her in a tough spot due to her need to rest her lungs and the use of blood thinners to keep the machine from clotting. For a moment I felt helpless and hopeless because if her head bleed worsened we would have to take Ira off ECMO and her lungs would fail. Through deep prayer, daily positive affirmations and serious meditation practices, I have been able to keep a positive upbeat mentality throughout our daughter's journey! Praise be to a higher power, Ira's head ultrasounds kept rolling in on a stable note allowing her lungs the much needed rest! During ECMO Ira's kidneys suffered injury requiring her to get dialysis. Finally after almost a month of ECMO she had surgery to remove the cannulas! In place a CRT catheter for dialysis was inserted. Ira remained on dialysis for a couple weeks. Then the doctors decided that she may need longer term dialysis and that she needed a surgery to place a more permanent catheter in her chest. Three days later Ira's kidneys said "To heck with that. I'm going to work" and the catheter was no longer needed. Ira had another surgery to remove the catheter. At some point, mixed in with all she was going through already, her liver took a turn for the worst and her blood counts were down, they wouldn't come back up. The doctors came to me and said we don't know what's going on with Ira. They reconvened and came back a little over a day later with a hypothesis that our daughter may have Hemophagocytic lymphohistiocytosis, also known as HLH. This is a rare severe systemic inflammatory syndrome that can be fatal. Basically, it throws the immune system out of whack targeting all your organs with destruction. The tests came back positive. Then we waited for several weeks to find out if it was genetic, if that was the case, Ira's only true chance of survival with longevity was a bone marrow transplant. In the meantime, we were able to keep Ira's HLH at bay through chemotherapy. The results were in, Ira needed a bone marrow transplant. Snuggle Paw is an amazing, beautiful, resilient being, the STRONGEST person I've met in my whole life and with each passing day she's climbed the highest mountains, coming out on top. Viewing the astounding horizon each time. Always exceeding the doctor’s say so's, to this day! We were even discharged for a month due to how exceptionally well Ira was doing! Because of how rare Ira's ethnicity is we knew there was less donors available to her and finding a perfect match wasn't going to happen. Thankfully a young 34 year old man from the United states was an almost perfect match, 7 out of 8! We are so blessed and extremely thankful to this young man who gave life to our daughter! On July 28th Ira had surgery to place a Hickman PICC line in her chest and was admitted to the hospital. Then starting on the 29th of July Ira began conditioning for her transplant taking intensive chemotherapy treatment. On August 12th, 2020 Ira had her bone marrow transplant. We are on day plus 8 and Snuggle Paw is still sticking it to the doctors with little to no side effects, growing stronger by the day! Throughout this 7 month process Ira has received more procedures than most people and a great deal of blood products. A BIG THANKS, first and foremost, to our two second youngest children Angelina and Louie for being so brave and understanding during this rough separation, plus all their well wishes to their baby sister, all people who have ever donated blood, to the wonderful nurses, doctors and other staff here at Doernbecher Children's Hospital in both the pediatric intensive care unit and 10 south hematology oncology department (where we are currently) the nurses, doctors and other staff at Riverbed hospital NICU, plus the Panda transport team. The Nott Family would like to offer a sincere debt of gratitude for the quick diagnosis of HLH and treatment that has saved our daughter's life! Thank you for all the support! Thank you Team Cole for the support and most importantly the chance to share Ira's story of Bravery and Hope!