Serendipitous Girl

  I am beyond grateful to have my sister, mom, aunt, and mother-in-law's constant contact and their help behind the scenes, being my pillars, supporting me so that I can better support Jayde. It truly does take a village, and these women are my tribe. I know my post from last night was not easy to read. It was challenging to write and share. Yesterday was mentally and emotionally messy. Sometimes, you need to create more chaos to clean up the original mess. Jayde is still struggling to process everything happening inside her body right now, but she is mentally doing somewhat better. Witnessing lifeline helicopters flying in and out at all hours of the day and night helps keep her current circumstances in perspective. Regardless, we know she is where she needs to be to receive the best possible care. To help everyone following Jayde-Rhiannon's journey better understand how we arrived here, she has lost twenty-four pounds in the last several months. In hindsight, it probably st...

  *Update from the 10th floor* From the windows of the 10 th  floor, I watch from above as the world continues to turn. People are living their lives, and I continue wishing that, against all odds, my daughter was one of those people. How do you help someone who is losing the desire to help themselves? How do you force someone to continue to fight when they have fought so hard, for so long, that the fight is all they can now remember. In healthcare, there can be no shortcuts. It is a long, exhausting road. Today, this is where we are. A hospital is the last place any parent wants to be with their child. I want to see my daughter dressed like a princess, going off to her senior prom. I want to see her driving off, feeling butterflies, because she is finally driving. I want to watch her walk across a stage and be handed her diploma. Covid did not postpone these events in her life. POTS, EDS, and SMAS have stolen these milestones from her past and her present and...

Another Update from the 10th floor Covid has eerily slowed the pace, yet the smells, sights, sounds, and walls are all too familiar. The body remembers what the mind attempts to bury. The memories prompt an unnerving yet comforting feeling. I believe Jayde will receive the best possible care in this building, though, after years of fighting an apathetic medical system, my guard is impenetrable. Early in the day on Saturday, Chris, Jayde-Rhiannon, and I were having an emotional conversation. Jayde has not been doing well since last Fall. Every bit of weight she gained after her SMAS surgery, and then some, is gone. Her heart rate, which was once stabilized by her medication, bounces from 55 to 185. The pain she encounters every day has become unmanageable, even with medication. Now weighing 88 pounds and feeling relatively weak, she relays she feels guilty that I still need to take care of her. I responded, "I am your mom. This is what I do. You have NOTHING to feel guilty abou...

Today is port surgery day, and right on schedule, our nerves are on edge. Still, laughter rings through the air between the three of us. We depart on schedule. Unfortunately, traffic is a disaster in our sleepy little town. An accident on the interstate means someone will not be arriving home today, putting everything in perspective. We arrived at Hopkins a few minutes late. Chris realizes he forgot his wallet, which means he has no driver's license for his ID badge. Thankfully, we have been here. We have done this routine before, and they still have his credentials. The three of us sit in the family surgical room. Since our last visit here nine months ago, the only thing that has changed is the faces of the strangers surrounding us. We get settled into the pre-op area. Vitals are needed, and labs are completed. My signature, allowing everyone to treat our Baby Girl, has been signed several times. Jayde's nurses quickly discover why her surgery is necessary, as they have diffic...

We have traveled full circle, bringing t he three of us back to where our journey began five short months ago. Coming to Hopkins has become a family affair for me, Chris, and Jayde-Rhiannon. As I observe Jayde carry herself through the hospital, I marvel at the beautiful creature I call my daughter. I'm sure I am biased, but I have never met a woman as strong as my Baby Girl. I am proud to be the Mother of such a fierce little warrior. On this momentous day, i t is difficult not to feel many emotions. Yet, the strongest emotion pulsing through me at this moment is gratitude. Grateful Jayde has seen significant improvement. I am thankful for this brilliant doctor who did not dismiss my mother's intuition or Jayde – as too many did in the past. Today she was given the thumbs up from her doctor to test her new stomach created by the DDJ surgery performed not quite one month ago. One of Jayde's favorite forbidden foods is burgers, not the McDonald's or Burger King burgers. ...

This morning, I awoke with a heavy heart, thinking about everything I had 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 our silent conversations 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 additional ten minutes to prepare something. It is truly the little things that mean th...

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 showering, having her hair washed, and having Nurse Mom shave her legs. She looked 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 patient challenge was chicken broth with a side of jello. While I was still in the haze of sleep, her nurses whispered about removing her from IV fluids . 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 Roa d. She is not too thrilled with the Jello For today we are...

I sit in the peace of the dreary morning as the sun rises over the city, casting my gaze toward 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 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 that my baby girl needs respite from yesterday's disappointing news and lackluster care, 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 become one with my pillow and plush blanket. When I awake again, it is nearly 8:30. Jayde's new nursing team, Tina and Taylor, are introducing themselves to me. Today she has two nurses...attent...

Today, Jayde experienced some setbacks in her recovery. 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 mama 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 lapse 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 inserted too far. Thus, it was not drainin...

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 and crawl back into her bed. The medicine is keeping her pain away and a smile on her face. Yesterday, Jayde had many visitors. We got her steps in by taking her guests on a walk to the kid's room. Though she has mastered that smile, no matter how she is feeling, it was obvious once everyone departed, she was exhausted and hurting.  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. Also, per her request, her belly button is still an "innie." Today, she is more alert but on edge. She used the bathroom by h...

As we walk across the bridge connecting the parking garage with the hospital, it is obvious that the building we are entering is its own little universe. Thankfully, we have only been here once before, but that was many years ago. We were visitors then; today, our purpose is quite different. The exterior stained-glass windows are beautiful, artistic even. Their panes filter the sun entering the building, casting a warm glow. I observe beautiful children bravely smiling. They are surrounded by nurses and parents helping them walk while numerous tubes and IVs are attached to their frail bodies. The sound of children laughing, merely being children, fills a long corridor that ends with an arcade. Walking to our destination, I observe parents in the family suite, talking with doctors fresh out of surgery. It does not take much observation to notice their heads are heavy and their hearts are worn. I quietly pray their news is positive and that today brings them a ray of light and hope. Afte...