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Showing posts from August, 2018

The Tale of the Hangry Teenager

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This morning I awoke with thoughts of the last several days rolling through my mind. Jayde-Rhiannon 's final day in the hospital, my best friend asked me while visiting, “What do you do all day?” I responded, “Take care of Jayde, talk to doctors, fight with nurses who don’t listen, take care of Jayde, talk to doctors and take care of Jayde.” Sounds kinds of boring, right? Jayde and I spent seven days together, sleeping a few feet away from each other. We did not watch movies or TV, as we had planned. I turned on my laptop twice, for a total of one hour. I took several magazines and two books, they remained in the suitcase. I began the Facebook updates because it was easier to make one post than answer twenty or so texts and phone calls. The posts also freed up more time to concentrate on Jayde. When she finally regained her voice, we talked a lot. The silver lining of the entire experience…because I always need to find one…was the quality time with Jayde. If we were sitting on a be

Update From Plank Road

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Chris leaned over and took my hand, "It feels good to finally make this trip with you by my side." The bottled emotions I had previously been unable to name washed over me as we turned onto Plank Road last night. They proceeded to stream down my cheeks in an uncontrollable fashion. We were greeted at the door by most of the Jackson pride, who were anxiously awaiting the return of Momma and Baby Doolittle. Mommom, Poppop, and Grandmom turned Jayde's homecoming into the celebration it should be. It was not long before Jayde requested a smoothie, and I put the Ninja blender to work. Apprehensive is how I would best describe Jayde right now. Her hospital room was designed for her and her needs. Her bed at home does not have rails and buttons to raise it up and down for her ease and comfort. Laying still, she is in minimal pain; however, when she moves, it is a different story. Still, she is trying to smile through all of this the best she can. The next several days will be an

Gratitude From the 10th Floor

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This morning I awoke with a heavy heart, thinking about everything I have witnessed in the past seven days. There are twenty beds in our unit. Every story is different. Yet I can plainly distinguish one common thread, which runs through each of these stories I have come to understand during our stay at Hopkins...immeasurable love for a child. I am grateful for the warm camaraderie amongst the parents in our little corner of the hospital. Our smiles are the silent conversations we engage in as we pass each other in the halls. A comforting hug has made all the difference in the world...especially when you are on the verge of tears or see another mother desperately trying to hold herself together. A listening heart comprehending the anguish can only be unburdened when our children are out of earshot. Leaving extra food in the kitchen and placing another parent's name on it...because you know they have not had an extra ten minutes to prepare something. It is truly the little things tha

Light from the 10th Floor

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A new day brings many changes...for the better. Jayde has hurdled her obstacles with great strength. Yesterday she slept almost all day...last night, she turned a corner, gaining momentum and not looking back. Her Ng tube was removed around 5 p.m., allowing her some much-needed freedom and relief. She celebrated by having her hair washed, showered, and legs shaved by nurse mom. She looks like herself again, and for the first time in three days, Chris and I heard the amazing sound of her voice once more. It is squeaky and weak but still beautiful. This morning's challenge...chicken broth, with a side of jello. From her nurses, whispers of removing her from IV fluids were overheard in the haze of sleep. Once Jayde can tolerate liquids, she will be restricted to a soft diet for several weeks. How she tolerates liquids, followed by soft food, will determine when we graduate from the 10th floor to Plank Road. For today we are grateful to have the past five days in the rearview mirror, l

More Updates from the 10th Floor

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I sit in the peace of the dreary morning as the sun rises over the city, casting my gaze towards the sight of the open water and bridge. This site has quickly become my mental escape from the 10th floor. If I look straight out, my view is the city for as far as the eyes can see. However, if I snuggle comfortably into the corner of my sofa, I see a vision of tranquility and boats setting out to sea. The only sounds in the background are the hum of Jayde-Rhiannon's medical equipment. I silently pray for a better day, one which is filled with peace. Knowing in my heart, my Baby Girl needs a respite from the disappointing news and lackluster care of yesterday. Jayde is soundly asleep. The past few hours have probably been the best rest she has experienced in almost a week. I slink back down and comfortably become one with my pillow and my plush blanket. When I awake again, it is almost 8:30. Jayde's new nursing team, Tina and Taylor, are introducing themselves to me. Today she has

Update From the 10th Floor

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Today Jayde experienced some setbacks, along with a few speed bumps on her recovery road. Yes, they are to be expected. Still, it does not make these setbacks any less frustrating for the girl lying in the hospital bed or the momma who cannot do much to change it. The day started with a new nurse who knew nothing about SMAS and very little about POTS. "Umm, no, 73 is not a normal HR for her, even when she is resting. Please check again." "115, ok, that sounds accurate." After Nikki and Shannon knew what we needed, without us saying a word, never allowing Jayde's medication to overlap, or making Jayde feel she was a less important patient-it was a day full of adjustments. Jayde's fluoroscopy test was an adventure. She experienced a resident who was not confident in her skills, along with a callous doctor who needed to have a refresher in empathy and bedside manners. Besides the obvious, to see if her surgery was successful...we discovered the Ng tube was inse

Updates From the 10th Floor

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Each day is full of milestones in Jayde's recovery, filled with moments where I am more amazed by our Baby Girl and her determination. Yesterday was all about getting out of bed, taking short walks, and moving her tiny hiney. Jayde's gait as she walks down the hall is slow and steady, like a tortoise. Returning, she is always an eager bunny, anxious to get back to her room. The medicine is keeping her pain at way and a smile on her face. She had many visitors yesterday. We took a walk to the kid's room. Today has been quiet. The three of us slept until 9:30. Her incisions look beautiful. A year from now, it will be difficult to detect a scar...and per her request, her belly button is still an "innie." Today she is more alert but edgy. She used the bathroom by herself, bye-bye bedpan...huge progress there! The tube in her nose is rapidly draining her stomach, which is good. However, it is quite noisy at times, and she has been extremely nauseous. She has very littl

Jayde's DDJ Surgery Day

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Four months ago, I walked past the room my husband, Chris, and I now sit in. Observing the parents that day, imagining what they must be feeling and experiencing, nearly broke my heart. With very little sleep and nowhere to go, many thoughts begin running through my mind. This entire morning has been drenched in an air of surrealism. We observed the amber glow of the sunrise, casting its shadow over the streets of Baltimore. Somehow, the dawn briefly gives everything a refreshed appearance, even in a city enveloped in smog and grime. Jayde is now over halfway through her surgery. Her anxiety was in full force. Fortunately, a cocktail in her IV relaxed her nerves and provided for a few much-needed pre-op laughs. The room which is our respite is bright yet somber, full of families with understandably anxious and heavy hearts. It is a United Nations of sort, with people from all walks of life, originating from the many corners of the globe, speaking many different languages. The breath fr