What Is A Fever For A 2 Week Old Baby My Daughter’s Open Heart Surgery

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My Daughter’s Open Heart Surgery

When my Raven was born, she didn’t cry, even though it was by c-section and the umbilical cord was wrapped around her neck. She strained to open her eyes, looking around the room with her hands cupped near her chin, quietly observing her new world. She would always be like this when she became a sweet, soft-spoken little girl who took time to warm up to new situations, and would rather watch people than join them. She was always small, barely hitting the five percent range at the doctor’s and, although happiest when she sang or danced alone, she was painfully shy everywhere else. Everything would change, however, after she underwent heart surgery.

Raven had a loud heart murmur from day one and saw her first cardiologist before she was two weeks old. She was diagnosed with pulmonary stenosis, a condition that slowed blood flow from her heart to her lungs due to a thickening of her pulmonary valve and apparently explained her murmur. Although somewhat worrying, the damage was mild, requiring annual visits every summer, with the possibility of surgery in the future.

At age four, Raven was my little sleeping beauty. Constantly tired, slow and sluggish, my little girl could only find small amounts of energy throughout the day, but constantly complained of fatigue no matter how much she rested. During her annual appointment at Children’s Hospital in Seattle, her new cardiologist (her earlier one had retired) gave us heavy, shocking news that would also explain her fatigue: the good news was that Raven’s pulmonary stenosis was now minor at best. and no more. care; the bad news was that a large hole was found on the back of her heart by the routine sonogram. She had a condition called Atrial Septal Defect (ASD), in which part of the wall separating the upper chambers of the heart, called the atrium, is missing, allowing oxygenated blood from the left atrium into the right atrium, mixing with oxygen-poor blood. blood, and increasing the amount flowing to the lungs, which did not allow adequate oxygen to reach her other organs. It was concluded that Raven had the condition from birth, resulting in her loud gurgling murmur and, eventually, her low appetite and sleepiness.

The gap in the wall was large, but the surgeon wanted to try a minimally invasive surgery called cardiac catheterization, whereby a device would be guided through a vein in her groin to her heart and secured to the wall. Our hope was that the hole was small enough to allow edges for the device to grip. If this young procedure (20 years) didn’t work or if the hole was too big, open heart surgery would be our only option to close it, a scary but well-documented very invasive surgery with 50 years of success, but with the greatest risk. of the two operations of infection, blood loss and death. I had a sinking feeling.

The day before Raven’s scheduled cardiac catheterization, she developed a high fever (103) and the surgery had to be rescheduled for September, five days before the first day of kindergarten. My seven-year-old son, Lucius, was distracted with second grade on the day his sister went to Seattle Children’s Hospital for what was supposed to be an overnight stay. After two hours of waiting to hear about Raven, the surgeon sat me down and gently explained what I had feared: Raven’s hole was almost the size of her heart and a small camera that was guided through a catheter in her vein and into her. heart exposed no edges for the device to grip. She would need to have open heart surgery, which included a bypass where her heart would be drained of its blood and stopped while she was artificially kept alive, and a piece of her pericardium (the sac in which the heart sits) would be cut and sewn up. over the hole in her heart. I knew this was a necessary surgery that would give my daughter a better quality of life, but it was, nevertheless, a hard truth to swallow.

My sweet girl was required to lie flat for four hours after the minimally invasive surgery, which only confirmed the need for invasive surgery. She was exhausted, her mouth dry, and her belly empty when I saw her next. She slowly nibbled on crackers and drank water from a straw begging to go home or, at least, sit down. I knew I would have to tell her later that the hole in her heart was too big and needed a bigger surgery to fix. As a parent who believes in being honest with her children, I had to give myself a full day to grasp the reality myself before delicately telling my five-year-old that we were going back to Children’s Hospital.

A week later we were told that Raven’s surgery was scheduled for October 31, 2013, Halloween, and only four weeks away. In those weeks my husband and I talked openly with both of our children about the upcoming surgery almost every day. My son knew more about the heavy details of the surgery than my daughter, but she understands that her heart needs to be fixed so that her body has more energy and she can grow strong and healthy; she knew that she would sleep during the operation and that afterwards she would stay three to five days in the hospital with mom by her side; she was aware that she would have a scar on her chest that would fade with each passing day; and, most importantly, she was given four weeks to get used to the idea before it happened. We celebrated Halloween on October 30th, trick-or-treating with a bunch of other kids at the Seattle Piers businesses, and went to bed that night happy and ready for surgery.

I specifically requested an anti-anxiety pill to be given to Raven before being taken into surgery. We were given this option and took it because my five year old had already been through a previous procedure just four weeks ago and was so scared that she had to be held by myself and three other doctors to administer the anesthesia. I wanted this experience, which would be scary for anyone, to be as pleasant as possible for my daughter. The medicine made Raven quiet and a little silly and, as I kissed her goodbye, she was happily carried away by a doctor, all the while informing him that she was here to fix her heart.

Stefano (my husband) and I got updates every twenty minutes. The worst moment was when Raven was put on bypass. Knowing that my daughter’s heart was not beating and was cut in was almost unbearable. I tried to distract my nerves, but all I could do was clench my fists and remember to breathe, waiting for the next update. Twenty minutes later my husband’s cell phone rang and we were told she was outside and her heart was beating. I shivered with relief.

The ICU was scrupulously sterile and everyone was required to Purell their hands before and after leaving Raven’s room, which I was thankful for because my biggest concern after surgery was infection. Crow looked particularly frail as she lay in the hospital bed, with three IVs (including one that had to be sewn into her neck), monitors, a fresh stitch on her chest and a tube protruding from her abdomen that was draining fluid from around her heart. and into a bag. I remember thinking that at least the surgery; the hard part, was over.

Hours later Raven woke up screaming in pain and tried to rip the tube protruding from her abdomen out. I asked the nurse to do something about my daughter’s pain and she was quickly given morphine while I caressed her tear stained face and reassured her that everything was going to be okay. Our first and only night in the ICU was stressful, exhausting and productive. Crow developed a slight fever for an hour, never to return. She received x-rays, sonograms, and constantly checked her vitals. We saw a nurse almost every hour and, as her vitals progressed, she had two IVs removed, and finally got something to eat. I didn’t sleep that first night, staying right next to her bed on an uncomfortable chair, holding her hand and making sure that every time she woke up not in her bedroom, she groped me with her.

The next day Raven was given a full meal and moved out of the ICU and into a regular hospital room. Her catheter was removed and, for the first time since surgery, she walked on wobbly legs to the bathroom. Her recovery was rapid and by the second night (!) she was completely weaned off opiates and was simply taking Tylenol. After proving to herself that she could, in fact, walk, even with her drainage tube still trailing behind her, she insisted on walking everywhere. We walked the halls, took a break, and she eagerly but slowly walked to the playroom a few floors and hallways away. She laughed when the nurse pushed her into a wheelchair to get her early morning X-rays and spent the time in bed drawing pictures of bunnies and butterflies and telling me stories about her new animal characters.

On the third day she regained her complete appetite and suddenly craved milk. She also had her drainage tube removed and the hole in her abdomen sewn up, a painful ordeal that was made easier by the quick hands of the nurse practitioner. Before that third and final night, Raven used to get X-rays that she now posed for them, cracking the medical technicians. Her final sonogram at Children’s Hospital revealed that the material taken from the sac of her heart fit well between her atrial valves. Her heart was now intact and, to her cardiologist’s delight, her murmur was undetectable. Raven proudly informed all the nurses, doctors and visitors who came to see her that her heart was no longer going “whoosh, whoosh”, but was now making a “bump, bump”, sound.

On the fourth morning of our stay in the hospital, after enduring three nights and open heart surgery, my amazing five year old STEPPED OUT of the hospital and into the car like nothing happened!

Five days after leaving Children’s, Raven had her stitches removed from her abdomen (her chest wound was glued), revealing an air pocket where pus had collected. The scar on her abdomen now looks like a nice tattooed belly because of the infection.

Months after the surgery, Raven experienced bouts of depression, some nightmares, and some bad headaches, but her breast never gave her any trouble. We decided to pull her out of kindergarten since she was a summer baby and give her the extra year to heal, emotionally more than physically, and start kindergarten the next year, fresh and without open heart surgery in the way. After six months I saw some major changes: she gained five pounds, her speech and drawings improved dramatically, she no longer complained of being tired, and she grew out of most of her clothes.

By the summer before kindergarten, my shy butterfly blossomed into an athletic, tall, energetic tiger who was assertive, demanding, and beaming with confidence. She has gained ten pounds since her surgery and has shot up in height. Perhaps surprisingly to some (but not to us), she spoke openly about her heart surgery, her experience in the hospital, and even her scars in a positive light. For a now-six-year-old, she exemplifies bravery, resilience and maturity. She had her chest blown open, held apart, her heart drained, stopped, and cut into. She’s not just my hero, she’s a serious bad ass who handled heart surgery like a boss and inspired the hell out of everyone around her! I hope to be more like my daughter when I grow up!

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