Quality or Quantity?

Life.

So many little choices. So many BIG choices.

How do you define quality? How do you define quantity? Which do you value the most?

In my post, “This little one calls me Mommy,” I told you all that I would write more on Lucy’s diagnosis of hydranencephaly. This is the hardest post yet, just being real and honest. So please bear with me…

Milestones. If you know anything about any pre-adoption prep/education, you know that the words “bonding time” are huge, especially with adoptions under the age of 5. It’s the crucial and critical years of our lives that form us, and more importantly, form our basic foundation for brain development. After 5 years old, bonding is somewhat different, but that’s for another day 🙂 Also, you are prepared for delayed milestones, premature births, and unknown medical records, the list goes on. Some, all, or none of these can happen during the process, but that’s the jump you take for the gift of life you get to be apart of!

Today, I am going to focus on birth-6months. Just a few of the ones Lucy “hit” pretty well:

• held head up and steady
• calmed when spoken to and/or picked up (although she hardly ever was put down :))
• smiled and made noises when you talked and smiled at her
• reacted to loud sounds
• held head up when on her tummy
• chuckled
• turned her head when she heard my voice
• opened her mouth when she saw a bottle and was hungry
• looked with interest at her hands
• held her head steady without support
• held onto toys
• Used her arms to swing at toys
• knew her people
• loved to look in the mirror at herself
• squealed
• would close her lips when she was all done with her food
• was starting to roll from tummy to back

Just a quick pause: I strongly believe that every parent is to be their child’s advocate, where there are “struggles” or not. At some point, every child needs someone, (if it can’t be a parent, then an adult that is committed to invest in the child), that they know has their best interest in mind and heart.

Advocate: supporter; promoter; protector; spokesman; fight for; battle for; upholder; stand up for…

As Lucy’s advocate, I firmly believe that until about 2 weeks before going to the doctor/ER, she was happy, aside from some tummy aches, we were having fun playing and growing and dancing! Then slowly she would become rigid during certain parts of the day. I tried to think it was her tummy hurting and would hold her tight, and about 8 times out of 10 she would relax. Then my arm was giving out when I would feed her bottles during the night. Then my niece, who pretty much was the only other person, besides my mom and I, that Lucy would take a bottle from, randomly commented, “NaNa her head is heavy.” And this was my first “something’s definitely not right,” moment. My second, “something is definitely not right” moment, was that she suddenly seemed to forget how to eat from a spoon. And believe me, I tried every spoon in the house! And soon after that, the third “something is definitely not right” moment came when she began drinking her bottle like it was her last. I tried going back to slow flow bottles, I tried every holding position, I had to stop her just so that she would take a breath. She would scream so much she would spit up everything she had just drank. It was time to go to the doctor!

We both had the same primary care doctor, who was and is AWESOME! She listened to my shaking mommy voice, and my mom’s grandmother’s voice. She was puzzled at the regression. But thought it would be best to schedule some tests and specialists appointments, and I agreed. Still nervous, but confident in her assessment, we headed to get a new kind of formula, and actually was headed to get some documentation for the rest of her adoption.

Then my phone rang, standing looking at formula, I hear our doctor’s voice say, “Anna, I have decided that I am going to send you all to the ER, by the time you get there, Lucy will have a transfer from my office, and should be able to go right in.” I agreed, my heart was at peace, but still pounding. (just a side note: I had mentioned my ear was hurting when I was in her office, yep, I had a major ear infection in my left ear. side-side note: my migraines are triggered by pain on the left side of my body, stress, and loud/piercing noises. all of which were about to happen-all of which were not even a thought in my mind!)

We arrived at the ER, we had been prepared for a possible surgery, so Lucy was livid and hungry. They asked, “is she vocal?” I said, “she sure is.” Let’s just say, I don’t ever want to hear a scream/shrill like my tiny little made when they placed her IV. Ultrasound. CT Scan…. long, foggy, world spinning and we were in a complete paused state. She was admitted, MRI early morning, and then back to the room to wait. Lots happened in between. I lost hearing in my left ear. Lucy, me, my mom, and my dad all slept in her hospital room! #advocateS It’s what we do. Lucy was completely frazzled, because she was having to sleep in a baby bed, which soon changed.

But then, I was asked to come to the conference room… you know the one where all the doctors, nurses, therapists, their mothers, brothers, and best friends gather? yep that one. My mommy gut had already told me, this isn’t going to be shunt surgery, or just a little fluid. They tried to make small conversation, but I had to leave my baby hooked up in her room, and I was here for the facts. (and not only had I lost my hearing in my left ear, my right ear had started ringing, and I was battling a migraine- the only place I wanted to be was with my little girl!) So I pretty much asked, what’s going on? And they proceeded with the news, “Lucy has a rare diagnosis of hydranencephaly. There is no cure for this. She was born without her cerebral hemispheres, they did not develop when she was in the womb. But you have options. You can make her comfortable and have approximately 2 weeks with her. Or we can start her on a feeding tube, but she will always be at a newborn neurological state…” At this point, all I remember is saying, “Excuse me, thank you, but I need to go be with my Lucy Baby at this moment!” And I went weeping to my baby girl…

I had seen the ultrasound and the CT scan the night before, and have seen enough scans to know, Wow, that’s a lot of fluid, and not much room for her brain to develop. So I was expecting a tough diagnosis that was hard to swallow, and a road ahead that we would learn to trust and lean on Jesus more everyday. But I admit I wasn’t ready for a 2 week warning.

A small lesson on our remarkable brain and, the question I get asked the most, what is the difference between hydrocephalus and hydranencephaly: we have left and right cerebral hemispheres, the control speech, math, comprehension, writing, recognition of faces/places/objects, motor control, hearing, sense of touch, memory, personality, creativity, spatial ability, artistic, and musical skills.

Hydrocephalus: a build up of cerebral fluid in the cavities (ventricles) of the brain, which prevents proper fluid drainage. which can cause inter-cranial pressure inside the skull. It is often characterized by high percentile head circumference. Can be treated surgically with a shunt placement.

Hydranencephaly: is on the National Organization of Rare Diseases List. (NORD) It is a rare condition in which the cerebral hemispheres are absent, never developed, and in their place sacs of cerebrospinal fluid has filled the space. Due to these hemispheres of the brain never developing, there is no treatment, and there is no development past “infant.”

Here is where the decision of her lifetime came down to quantity or quality? Of course we wanted quantity, time it’s what we all want, right? Quantity meant prolonging her life for my sake, for us to have time, not to enhance her life with us. It meant tubes and cords and OT and PT. I took her to the doctor because I knew what aspirating was, I had watched this happen grandparents and those around them. I was determined Lucy would not aspirate. I turned away the OT and PT. She didn’t need to learn to take a bottle or eat food again, she was tired. She had survived 6 months without any assistance, with a rare disease that has taken so many littles either as newborns or barely one month olds. She had actually sucked a paci, took a bottle, sat up, held her head up, interacted with us and others, so many miracles. I couldn’t ask for more from her. What I could do was advocate to get and give her the quality care of physical comfort she needed to ease on back into Jesus’ arms. And that I believe Jesus led me, decision by decision, to do. I asked for the hospice and palliative team, who were out of this world amazing! (Duke Children’s!!!) I asked for us not to be discharged until KidsPath with hospice could meet us at home to help with the transition, who were also awesome!!! (These services are available! Ask! I only knew because of being involved with caring for grandparents!)

Every story matters. Every detail matters. Every story is different. Lucy’s Story lives on, because she is my little girl, and she matters. Even though our quantity of days on this side of heaven were less than hoped for, the quality in the days, moments, seconds we had together far exceed anything I could have ever dreamed! I choose to cling to those…

Quantity? Quality? Which will you choose…