My beautiful sweet Adalynne Grace was born what we thought healthy on July 6th, 2017 at 6:33pm, weighing 6lbs 14oz and 19inches long. She passed all testing and latched right away. For a year and a half she did great. She fought high jaundice numbers but that was it. January 1st 2019 we had her at urgent care for a high fever and lethargic. It was determined that she had a double ear infection. From there things just went down hill. She then got the flu, we fought that as well. And then after that she continued to have a runny nose and congested cough. We would take her to the doctor and they always told me it was viral. She started having seizures, May 18th, 2019 was the first one. But the symptoms continued. She began having weight loss, bruises all over her body, loss of appetite, extremely tired all the time, bled extremely easy from a simple scrape, the lit just goes on.
Eventually her doctor agreed with me that it was more. She sent us to so many different specialists. EMT, allergist, pulmonologist, hematologist and neurologist. Finally we thought we were getting answers. Hematology thought she had a rare blood clotting disorder, but the tests they did didn’t show exactly what. So they wanted to do some genetic testing but our insurance denied it as not necessary for her. We tried fighting the insurances decision but they kept denying it. We sent it to appeals in the meantime and continued her appointments and keeping an eye on her.
December 4th, 2019 I rushed her to the ER at Oaklands Children Hospital because she got a fever of 104.6 and a rash all over her body, they determined that she had a UTI, they were going to send her home but then decided to keep her overnight for observation since her heart rate was extremely high and her oxygen kept dropping low. This is when it went downhill really fast. But they never looked at her heart, even tho it stayed high the whole time she was there. We asked them multiple times why it was so high and to look at it. She ended up having multiple seizures, her platelets dropped multiple times, she had bleeding in her mouth, stopped eating completely and much more. She ended up having so many tests done, they decided she may have had bacterial meningitis and started treatment for that.
She started to feel better and decided she could go home and continue her antibiotics through her picc line at home on December 13th, 2019. She was home for 5 days and started declining again. So on December 19th, 2019 we rushed her back to the hospital where they admitted her once again, did another platelet transfusion and released her the next day on December 20th, 2019 to finish meds at home. The very next morning our nightmare began. The next morning on December 21st, 2019 she began screaming for me and when I got to her, she was unresponsive and gasping for air. I had to carry my child’s lifeless body to the living room while calling 911. Watching her tiny little body gasping for air, unresponsive and limp. Doing CPR trying my hardest to bring her back. Rushing to the door when EMT's finally arrived. Sitting outside with a police officer while paramedics worked on her little body for what seemed like forever.
On the phone with my husband telling him to hurry back home. Him asking a million questions and me not having the answers. And finally, just yelling just fucking hurry up! The police officer taking the phone to calm daddy down and help me. The paramedics rushing out the door with her, while blood was streaming down her face. Her body still limp. Not knowing if she was even alive. Neighbors standing outside watching as my world was crashing. Waking my oldest daughter and rushing out the door with a firefighter to drive me because I couldn't drive myself. Getting to the hospital and waiting to know if she was going to make it. Calling family and friends telling them we needed them. Standing by watching all the ER doctors and nurses work on her. Them telling me to hold her hand, because she was fighting and trying to move. Her squeezing my hand. My husband and I talking to her begging her to hold on and fight to stay. She was then transferred back to children's hospital of Oakland where she stayed in a coma for 3 days. All the tests, and monitors, the breathing tubes, the medications, blood transfusions, the doctors. Days of praying she’d wake up and come back to us. Then another transfer, finally getting answers. More tests, medications and different doctors, social worker. Honest answers that you were so very sick.
You had severe pulmonary hypertension and severe brain damage. Anger that they didn't look at your heart sooner. Prayers and hope begging God to let you live, begging for a miracle. Less than 24 hours after being transferred the last time her blood pressure dropped, they tried to put her on ECHMO(life support) but she coded again. And this time they couldn't bring her back. Her tiny little body had enough, she fought so hard, but she just couldn't go on anymore. On December 24th, 2019 at 7:24pm mommy and daddy said goodbye. They took all the machines and wires off so mommy could hold you. I laid there with her in my arms for what seemed like hours. Kissing her perfect beautiful face. Giving her all my love. Taking the last pictures, I'll ever have of her, of us together. Wishing it was me instead.
How could someone so perfect leave this world so soon? Walking those halls after midnight, leaving the hospital with empty arms in a daze and my mind cluttered with grief, anger and sadness. Driving the hour home in silence and tears. Not knowing how I'm supposed to live the rest of my life without her. Wondering how we would explain to our oldest daughter in a way she would understand that her best friend was gone forever. My heart is forever broken, the day she left she took my heart with her. We miss her terribly and love her even more. We then found out after having testing done after she passed that she had a genetic mutation in her CAV-1 gene.
This mutation is known to cause pulmonary hypertension and without treatment the life span is 2-3 years. She was 2 years, 5 months and 18 days old when she lost her battle to CHD pulmonary hypertension. We also learned that I her mother am the one that passed this to her. I never knew I even had this until my daughter died. It doesn’t cause issues in every person but it unfortunately did in my sweet girls body. My oldest daughter Abigail also has the mutation and is watched very closely by Adalynne’s cardiologist. We pray that it never develops into pulmonary hypertension for her but she is at higher risk for it as am I.
Adalynne Grace you were truly an amazing spunky baby girl and we miss you more than anyone could ever imagine. We pray you’re happy, healthy and dancing in heaven waiting on us to join you. We’d give absolutely anything to have you back sweet girl. She was such a spitfire and had the attitude of teenager at only 2 years old. Her favorite thing was to tell me “mommy mind your own business!” She loved nursing and we nursed up until she went into cardiac arrest. Life is just so different and so hard.