Gracie’s Story
From the moment I became a mom I always knew one day I would be so overjoyed to raise a baby girl. In February 2020, we found out just that. Our third and last child would be the little girl that I always hoped for! As my pregnancy continued things started to take a turn and I became very ill. My OB/GYN tried her hardest to keep Gracie and I safe but after many trips to the ER in between regular visits we found low sac fluid, severe preeclampsia and placenta previa took over and on June 6, 2020 I ended up in the hospital for a permanent stay until delivery. With the help of the high-risk hospital staff I was able to keep Gracie growing a few more weeks until we needed to have an emergency C-section done on June 25, 2020, our fear had become reality as my condition started to effect her and she was started to not be mobile. Being our last child and our only little girl things did not happen as I imagined. I had so many plans and dreams for what would happen after she was born and those changed all in an instant.
Gracie was born at 27 weeks gestational age weighing 1 pound 6.5 ounces due to her IUGR diagnoses. She was a fighter from the very beginning as the doctor said she roared like a little tiger when they took her out of the womb. Everything seemed great and we were chugging right along, gaining weight and growing as we should, with the help of modern medicine of course. Then on day 9 something terrible happened and Gracie got diagnosed with severe pneumonia and her first collapsed lung, that’s when the NICU roller coaster started. She went from the lowest settings on CPAP to being on high settings on a vent just to help her breath. She was on antibiotics for two weeks along with chest pt from the respiratory team just to help inflate her lung without surgery. During this time Gracie’s chronic anemia kicked in and she needed her first blood transfusion. Things then leveled out and a couple of weeks passes as Gracie showed growth while also having to receive another transfusion we were still hopeful . Then at a month old Gracie was diagnosed with stage 3 retinopathy in her eyes and a hemangioma tumor in her head. We sat down to speak with Optamology about her eyes and an ultrasound and MRI were done to check the expectantly of the tumor. Thankfully the tumor came back as calcified or benign and the eyes are still an issue to this day and are followed closely. We entered the month of August with another infection and all I could do was pray. Another ten days passed and Gracie was starting to improve then boom, she started to have desaturating events into the 30% on a regular daily basis. They ran every test under the sun and did another blood transfusion as Gracie’s counts were low.
A few days pass and my primary nurse calls us from the hospital saying they found a mass during morning cares. My heart immediately dropped and we rushed to the hospital as quickly as possible. They ran multiple tests then later took her back for surgery. The surgeon anticipated it to be pretty straight forward and quick. Well, as we waited in the surgery lobby starring blankly at the updates screen to change, all it read was “surgery in process”. We anxiously waited for the screen to read in recovery. Little did we know that 20 minute surgery would turn into almost two hours and we we would have no clue of what was going wrong. The surgeon would call us just before the two hour mark and inform us of the situation and what to expect. When waiting to see her, approaching the NICU doors was a swarm of 11 different staff members pulling her back from surgery.
As I try to follow I was told I had to wait. I immediately tried my best to hold back the tears as I just wanted to see my baby. I finally am allowed back and I walk in to see Gracie laying lifeless still incubated from surgery on the bed, the staff and resident surgeons still huddled around her. As I walk towards her I try my best to stay strong as all I can do is sit beside her and just talk to her to let her know I’m there with her. The next five days would be the hardest. They try to get her back to where she was on oxygen support prior to surgery, then both lungs collapse in an attempt to get her to breath on her own again and they have to emergency re-incubate. They manage to get her back on 8 liters flow a couple days later only to then have internal bleeding from an unknown place or origin. As they try to at least maintain her weight as she has not eaten in those five days, they place a pic line in Gracie’s head. Another 2 blood transfusions are done and then another infection takes its course and we are overwhelmed. As all we want to do is help our little girl and we feel helpless. As she tries to recover from surgery her little body is now fighting this illness and has a whole slew of antibiotics again coursing through her veins.
By the grace of God things slowly start to move back in the right direction and we see our feisty little girl coming back! She is eating again and almost at the 80% for us to be able to go home! Then just three shorts weeks from her last surgery the unexpected happens. As I arrived at the NICU that day I see multiple persons around Gracie’s crib. One thing you learn in the NICU is the less staff around your baby, the better. I ask what’s going on and the response leaves a pit in my stomach. The doctor found another mass. Just when we were so close and we could see the light at the end of the tunnel it closes up again. I couldn’t hold it in and just started crying right there and then. My precious girl has already been through so much, please don’t make her endure anything else, I thought. As we spoke with the Pediatric surgery team once again, Gracie was put onto the schedule just 36 hours from then. We braced ourselves and prayed everything would go smoothly this time around and she would come out better than ever! Our prayers were answered and Gracie recovered quickly and just nine days past her second surgery we were able to bring her home to finally meet her big brothers!
Gracie showed us from day one how strong she was as she overcame many obstacles during her 107 day stay at the hospital. About a month in to our stay we found the Rae strong Foundation. We were overwhelmed by the amount of support and generosity along with being so grateful to find a community that understood exactly what we were going through. Today Gracie is four months old or one month corrected age. She still has plenty of specialist and weekly appointments but she shows us everyday that nothing can stand in her way. Gracie lives in Murrieta, CA with her parents and two brothers who all love her so so much!
