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Three years ago, March 11th, I met the most beautiful person I have even known. Her name is Kiah Grace, she is my first born, my daughter, and now she is in Heaven. This is her story, her life….
Kiah, derived from a Native American name meaning “Rare beauty”, Grace, her middle name “a gift from God”. That is her name, this angel I speak of.
I remember the day I found out I was pregnant like it was yesterday. I was thrilled beyond words. My husband and I had planned for the pregnancy. We wanted a child and we were about to have one. We did all the things that new, first time parents do. We bought all the pregnancy books we could; we bought maternity clothes even before I gained a pound! We found a good doctor and began out prenatal appointments. It was during a routine sonogram that we found out we were having a little girl. I was so excited. I wanted a girl so badly…A girl…I let the words sink in. Liver, check. Lungs, check. Fingers and Toes, check. Eyes, check. Heart…umm….she won’t turn over. They needed to see the other side of her heart and we would need to come back in two weeks. No big deal…I was having a girl! A girl…I called my mom right away. I am having a girl. Pink dresses, pig tails, cute shoes…
Then it happened, our world shifted, it did not fall apart but it took a significant turn on its axis. Enough to shake you. We were at the doctor’s office. They were looking this time specifically at the heart. “Humm”….said the tech. “What”, I said…she said “just a minute, I need to get the doctor”….it was like a movie scene. I remember everything about that moment. What I was wearing, what the room looked like, smelled like. How small I felt on the table. That was the moment we found out there was a problem with our baby girls heart. They could not tell us specifically what the problem was, just that there was one. They referred us to Children’s Medical center. We went right away and had a fetal echocardiogram…an Echo as it is referred to. That is where we learned the name for our baby’s problem. She had Pulmonary Atresia, a congenital heart defect. Her pulmonary valve had failed to open. It was serious they told us, and she would require immediate attention, surgery, probably several. How do you handle that news? What do you do now? I was crushed. Angry, confused and sad, so very sad. We armed ourselves with information and did research, asked a ton of questions and saw our cardiologist often. We prayed and prayed. We got her room ready for her arrival. We had baby showers, and parties, and shopped until we could shop no more. We were having a baby, a girl and she would be born with a serious congenital heart defect.
Kiah was stubborn from the get go! She was due March the 5th, but did not come. I had a failed induction on March the 8th. Go figure, a failed induction, how can that happen? My mom and sister came to
The next few days were a blur of tubes, wires, consent forms, oxygen, nurses, doctors, exhaustion, and emotions I never thought possible. We watched our baby being poked and picked and prodded. It was emotionally draining. Kiah had catheterization after catheterization trying to get her pulmonary valve to open. It kept failing. It seemed that surgery was the next option. A BT (Blalock-Tausig) shunt was put in her heart at four days old. She did great, came out like a champ. We were moved to a private room at Children’s…it was like the Ritz to us. We were discharged from the hospital 3 weeks later with medications to take, things to watch for, and parenthood staring us in the face. We were going home. What a joyous day that was!
Finally at home! WOW!!! No nurses, no doctors, no tubes, no wires. We were wire free. What a feeling! Not connected to anything. We did the new parent thing. Got up every few hours, worried over everything…was she eating enough, was she sleeping enough, was she too hot, too cold, was she breathing ok? The things new parents worry about were only heightened; we had a baby with a heart condition. But we listened to our gut and followed our instincts, we got into a groove, and it was wonderful.
And then it happened again, my world shifted. Kiah was about 4 ½ months old, she was not eating, her diapers looked strange, and she was breathing hard. We took her to see her cardiologist. In the clinic they determined she had Endocarditis, a bacterial infection was growing in her heart. They admitted us there on the spot. Tests, tests and more tests. Major antibiotics and emergency open heart surgery to remove the infectious growth were just the beginning. It was happening so fast. My baby was very sick. Kiah had quit eating all together and required a NG feeding tube to be placed down her nose so that she could get some nutrition. Was she gaining weight? Not enough feed her more. Wait, she threw up. It was awful. We were in the hospital forever! Finally, a month later were discharged. But not before we were set up with home health care. Kiah had to go home on one of her antibiotics; I had to learn how to administer it in her IV. We also had to learn how to place her NG tube. She was still not eating. We did learn and we did go home. And again, it was wonderful despite the feeding tube, the IV, and the medications. We went along fine with lots of checkup over the next several months. But Kiah’s oxygen level in her body was low. When they removed her infection they had to remove her pulmonary valve and discovered that her shunt had closed off. She needed a repair.
We went back to the hospital in November of 2002, Kiah was 9 months old. This was her 3rd heart surgery. The doctors performed a banded Glenn shunt. Essentially they re-routed her blood. I remember walking into her ICU room after surgery and she was sitting up in bed, smiling. It was as if I had a new child. She felt so good it was written all over her beautiful face. We were out of the hospital in 7 days, a day before Thanksgiving. What a wonderful thing to be thankful for!
The next year and a half was filled with normal, wonderful things. We went places, we did things, she grew, learned to walk, talked up a storm! Had good check up after good check up. She got normal colds. She painted and colored. We celebrated her first birthday, Easter, summertime, Christmas, another birthday, another summer. We went on wagon rides in the “forest” as she called it. We graduated to a “big girl bed”. We were potty trained and wore “big girl Barney panties.” We sang songs, we danced, and we rolled around on the floor. We were happy, we were a family, we hoped.
And then again, it happened my world shifted. Kiah began to tire easily. She was coughing all the time! Her lips were bluer than normal, she lost her appetite, and she slept more than usual. Again we took her to her cardiologist; she was diagnosed with Pulmonary Vein Stenosis. Her veins were narrowing. Surgery was the only option. We had our fourth heart surgery September 7th 2004. The first in almost two years. I could not believe, or did not want to believe that we were back there. But we were and Kiah did great, she always did. We recovered well and went home in a week’s time. Things were good the first few weeks home. She seemed better, but she was not herself. She coughed all the time! We consulted our cardiologist who referred us to a lung specialist. We tried medications, breathing treatments. But her coughing persisted.
Monday November the 8th is a day that will forever be etched in my mind. We left home in a whirlwind. Beds unmade, Kiah’s pj’s on the floor. Her toothbrush wet on the bathroom counter. We were going to be late for her pulmonary appointment. November 8th was the last day Kiah was at her own house, it was the last day she saw her own room, slept in her own bed. We were once again admitted to the hospital. Tests were run to rule things out, rule them in, just to try and figure it out. Weeks went by, Kiah would seem better, than worse. We were in limbo. Ultimately it was discovered on November 29th via catheterization that her Pulmonary veins were narrowing again, that her upper left vein had closed altogether. One of our doctors stood with us outside recovery and explained to us that Kiah would require a lung transplant and probably a heart transplant. That part of her lung was already dying. I remember thinking that is the worst thing that could be happening. That this was the worst.
We returned to our room on the 8th floor at Children’s, a place we had grown accustomed to. It was late about 10:30-11:00 that night; Kiah was in and out of sedation. Trying to wake herself from her drug induced sleep. My husband was there, he was getting ready to go home. The doctors were in and out, the last breathing treatment of the night. The last of her meds for the night. The fellow checked on her, her oxygen level was so low. Her pulse ox box read 65%. She was agitated and I just wanted them to leave her alone, to let her sleep. Finally they all left. I was on duty that night. Dad was getting ready to go home. Kiah called out to him, “Daddy, I love you,” she said. “I love you too Kiah, I will see you tomorrow, he said”. And he left. I was settling in. Checked on Kiah, covered her up, read her pulse ox box, it had become my best friend and my worse enemy. I remember thinking how low it was reading. I lay down on the plastic couch, my bed for the night. Kiah called out to me. “
And then that thing happened again, only this time my whole world stopped. It shattered into a million tiny pieces. Kiah had stopped breathing. In rushed the doctors and nurses, I was panic stricken. Someone called my husband who had just gotten home. They got her breathing again; they intubated her and moved us to the CICU. I remember thinking thank you God. I called my family and told them that Kiah was sick and they needed to get here as soon as possible. They worked on her for hours. Oxygen, nitrous oxide, medications, tubes, wires, and IV’s. I remember the moment it hit me, that my life was never going to be the same. The nurse had come over to Kiah with a flash light and was going to check her pupils. I stayed right there, watching, bent over my baby’s head. The nurse flashed her light into Kiah’s dark brown, beautiful eyes and I knew. I knew she was no longer in her body, that her spirit and soul had left her body. That the person I had come to know and love more than anything in the world was gone from me.
My baby, my first born, my daughter, Kiah Grace. She left a mark on this world like no other. She is my joy, my reason, my purpose. She is my angel and I miss her.
I love you Kiah.
Your Mommy
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