Blakie

Blaklie Rhyanne Allen was born on October 7, 2004. My doctor decided to induce me on October 6, 2004, because my blood pressure was dangerously high. After a little over 12 hours of labor, Blaklie was born at 3:32 pm. She weighed 6 pounds 9 ounces and was 19 inches long. A perfectly healthy baby. So they thought. My husband and I took her home the next day, which was Friday.

Over the next few days I began to worry about her. She was sleeping all the time and when she would nurse it would only be for a few minutes and she would be sleeping again. That Tuesday, when she was 5 days old, I took her to the pediatrician for a newborn checkup and that doctor said that she had gained a few ounces, which was great because most newborns lose weight, and that she was healthy as could be. I still felt something was wrong with her the next few days, I just didn't know what. I told my family I thought she was breathing fast and sleeping too much. They said that all babies do that. I finally couldn't handle being so worried anymore, I couldn't find a doctor that could see her that morning, which was Friday the 15th. I finally found one and I took her to see him. He said that I was probably just a little paranoid and sent us home. That day I took her out and showed her off. Around noon that day she stopped eating. Later in the afternoon she was sleeping a lot, and when she wasn't sleeping she was crying. I didn't know what was wrong. I went to my parents' house that evening and she had fallen asleep. About 10 that night she started becoming hysterical again. Breathing extremely fast and a pale color. Then she became lethargic. My father and I took her to the emergency room. The pediatrician that we had seen that morning happened to be on call. After about an hour or so in the emergency room they didn't know what was wrong with her, they went from saying she was just dehydrated to RSV. Her doctor took her blood pressure and realized that it must be her heart because there was a significant difference in the pressures in her arms and legs. He came out and talked to us and told us that he needed to get an I.V. in her, but she was dehydrated and he would have to stick the needles into the bones in her legs. I felt helpless and terrified. I could hear her screaming in pain. And nothing I could do. Then she stopped. The nurses came running in and out of the room looking for something. She had gone into cardiac arrest. She was "out" for over 10 minutes. The doctors talked to us and told us they were life-flighting her to the Children's Hospital. The flight doctors told us that there was a big possibility that she wouldn't make it to the hospital because she was so sick. My family and I got to see her for just a minute before they loaded her on the helicopter. I will never forget how she looked. She was in an incubator with a breathing tube coming out of her mouth and an I.V. going into her scalp. All I could do was cry. I asked if I could ride with her, but they said no. So my family and I drove the nearly 4 hour drive to the hospital. I had family closer to the hospital and they headed for the hospital before so that she wouldn't be there alone.

When we arrived at the hospital she was in the PICU. She was on about 17 different medications and life support. I didn't even recognize her. The doctors let us see her and then they took us into this small room. There were about 8 doctors and they started to tell us what was wrong with her heart. She had a severe and rare congenital heart condition called Shones complex. Which means she has numerous heart abnormalities on the left side of her heart. But her main problem right now was the coarctation of the aorta. They said that the medicine they put her on to open up the little valve to reopen wasn't working. That it usually took only 30 minutes to work and the longest they'd seen it take was 2 hours. She had been on it for over 8 hours. They said that she also had a coarctation in the lower part of the aorta which was inoperable, therefore, our little girl would die.

My heart sank. I started to cry hysterically. I couldn't believe what they were saying. My father stood up and told the doctors "No, we won't accept that. You call all the specialists. Wherever they are we don't care. You put your head back together and fix her." They said they would try, but they had talked to everyone. I finally got to hold my baby girl. All of my family came in to say their goodbyes. That was the hardest thing I've ever had to do. Rock my baby girl for what everyone thought would be the last time. A few hours went by and the doctors were coming in to get ready to disconnect all the machines. Then a miracle happened and she started to fight back. They said that she showed some improvement in her vitals and that they needed to put an artery line into her arm. They did and then they moved her into the CVICU.

Another doctor came to see us and told us that the coarctation they had seen in the lower part of the aorta had disappeared. He said that it must have been a blood clot. That brought up the worry that the blood clot could travel to the brain and cause her to die. The following day, Sunday October 17th, they did another MRI to see if they could see the blood clot. They couldn't find it anywhere. The doctor said that he thought they could repair her coarctation as soon as they thought she was stable enough. Monday afternoon the surgeon came to us and told us they were going to do the surgery the next day. That Blaklie was still very critical but she couldn't stay on the medicines for much longer. They said that they would do another MRI on her brain to see if there was any bleeding in the brain from the cardiac arrest and if there wasn't they would do the surgery first thing in the morning. The surgery went great and she was back in the ICU. She actually opened her eyes for the first time Wednesday morning, it was a blessing, but still upsetting because she had tears coming out because she was crying, but you couldn't pick her up because of all the breathing tubes and the incisions. She continued to improve and was taken off the breathing machine the following day, still on oxygen. The next few days her blood pressure was the main problem. She was on 5 different medications to keep it down. We were only allowed to see her for 10 minutes out of every hour because she would get too excited. Blaklie continued to improve and they removed her chest tube and I got to hold her for the first time Saturday afternoon, the 23rd. The next couple of days she was taken off oxygen and she got to eat for the first time that Tuesday afternoon.

Blaklie didn't seem to eat very well. Her respiratory rate would go up and she would aspirate and she would end up throwing up. So the doctors decided she needed a feeding tube. She also started to get a fever. So they took some blood and ran some cultures. Over the next few days they discussed putting a button in because she couldn't keep her food down, it turned out that she had a paralyzed vocal cord. They don't know how or when it happened but that was probably making her aspirate and making her sick. So they started thickening her milk with Simply Thick® and it seemed to help. But she couldn't get the bottle feeding down. The doctors said that she'd be in the hospital at least 10 more days to clear the infection up and try to get her to bottle feed so she wouldn't have to be tube fed.

Thursday, November 4th, Blaklie got a PICC line. She started to run a fever again and we were worried she had gotten another blood infection. Luckily she hadn't. The next few days she continued to improve. Tuesday, November 9th, the doctors removed the feeding tube and she began to eat from a bottle. She did so great that they said she could go home in a couple of days. We got to leave the hospital November 11th.

Blaklie has stayed pretty healthy since then. She's had a few ups and downs, but she's a fighter and in it for the long haul. She had to have a balloon angioplasty in January 2007 to reopen her aorta. But other than that her heart has been pretty healthy. We are hoping that would be the last procedure, but it most likely won't. She is an amazing little girl and is like any other 2 ½ year old. Blaklie is so smart and very active. Amazingly tough and stubborn. She has to go to the cardiologist every 3 months for an echo to watch for another recoarctation.

— Blaklie's story was written by her mom

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Blakie