Welcome, and thanks for coming!
You’ve landed here on our team fundraising page to benefit the 2023 Race for Every Child! Our experience with Children's National was exceptional and we want to do our part to help Children’s National support kids and families in our community, so we created Team Remi and started participating in this race/fundraiser.
Here is Remi's story:
Remi was born with a condition called lymphangiectasia with a primary complication of pleural effusions. Prior to her birth, we met with specialists at Children's and were given a tour of the NICU. We learned how our daughter would be transported to Children's after being born at Virginia Hospital Center.
Immediately after Remi was born, she was placed on a mechanical ventilator. The goal of the medical team was to eliminate the fluid around her lungs and get her to breathe and eat on her own. Within the first week, Remi had chest tubes placed to drain the fluid around her lungs, she was placed on a morphine drip to control the pain of the chest tubes and the ventilator, and she was given TPN (artificial nutrition) because milk was known to increase fluid accumulation around the lungs. Each day was difficult, and some days were harder than others. She had set backs and some very scary moments early on. But, with a combination of drainage and medication, we thought we were making some progress. We were looking forward to Remi eating to see if the milk with trigger any fluid reaccummulation. Unfortunately, before we could face this next challenge, Remi experienced a massive pulmonary hemorrhage, causing her to code. The exceptional NICU team fought tooth and nail for her. She was given medication and received chest compressions for approximately 20 minutes. Unfortunately, she remained unstable, and we were told she probably would not survive the night. Despite this, the medical team continued pushing, friends and family continued their prayers, and we stood by her urging her to fight. And, she pulled through.
The next few weeks were challenging. Remi was seen by a number of specialists to try to determine the cause of the hemorrhage and to determine the effects of the code. A cause was never determined, but luckily, our concerns of potential brain damage (from lack of oxygen and trauma) were alleviated when her MRI came back normal. During this time, it was determined that Remi would probably need a procedure in order to stop the fluid accumulation; drainage and medication alone were not working. She had a painful procedure to create scar tissue around her lungs to prevent fluid accumulation. The procedure worked, and within a week of having it done, she was taken off the vent! That was such a great day...hearing her cry was amazing! Our NICU friends and nurses all stopped in to see Remi off the vent.
The next month was spent weaning her off of her pain medication, introducing milk/formula, and teaching her to eat. Because she had gone months without eating, it was a slow process. Ultimately, we figured that she would need a feeding tube for a while. Finally, we were able to start thinking about Remi coming home. We learned how to give her the various medications, and place her feeding tube through her nose. We set up her follow up appointments, and scheduled her for various therapies. And, around noon on Wednesday, May 21, 2014, our doctor confirmed that Remi would be able to come home that day. She is nine years old now and doing well!
We would love for you to join or support our team and help support patients like Remi treated at Children's National.
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