In The Beginning

 On June 30, 2010, Megan Smith's life would be changed forever. Not only did she become a mom for the first time, but she was also blessed enough to become the mother to an angel, Parker. Megan knew a couple of weeks before Parker was born that she was going to be 'different' and the doctors were unsure of how her life would be after she entered this world. They prepared Megan for the unthinkable. There were close to 20 people in the operating room during her C-section and the doctors immediately rushed her baby girl straight to NICU for lots of testing and to be stabilized. On day two, a doctor entered the room to tell Megan of the results . . . Parker was diagnosed with Lissencephaly, Microcephaly, and CVI (Cortical Visual Impairment). Megan's world came crashing down as they told her statistics and 'what to expect.' The doctors didn't even think Parker would ever make it home from the hospital. They were wrong. Parker left the hospital on the same day Megan was discharged. It was time to adjust to a life much different than the one she had been envisioning for the last nine months. A 'new normal,' which would end up being how Megan would describe every obstacle she and Parker were about to face.

     At Parker's two week check-up, Megan asked her doctor to give her a swallow study. With hesitation, he finally agreed and it was a blessing he did. They found out Parker was silently aspirating every swallow and in every consistency. It was deemed unsafe for her to eat by mouth anymore and they were admitted to learn about feeding tubes. Parker had an NG tube (feeding tube that goes down her nose to her stomach) for ten weeks before they placed her G tube (permanent feeding tube in her stomach placed with surgery). Two weeks later, at 14 weeks old, Parker had another surgery called a Nissen Fundoplication (prevents her from throwing up) to help with her acid reflux and to prevent aspirating on her vomit. At three weeks old, Parker had her first seizure, a gran mal. They were told these would most likely happen at some point. They battled seizures pretty much daily from that day on. Parker went through many surgeries, countless emergency room visits, doctor appointments weekly, and more hospitalizations than any one life should ever have to endure, but her smile never left her face.

 Parker was happy from the beginning. All smiles. Easy going. But she was also very bossy and knew what she wanted. If she wanted to be walked around being held all day, then you better call for back up to help because she was going to ensure she was held and walked around by someone. The doctors said she would never understand her surroundings, but they were wrong about that, too. She knew her mom. Really knew her mom. When Megan walked in the door from work, no matter where she was when she heard Megan's voice, she would start flailing her arms and legs, smiling and even laughing sometimes. And she absolutely knew her dad; he was her comfort, her safe place. They had the most beautiful daddy-daughter bond. Parker only knew unconditional love. She never met a person whose shoulder or chest she wouldn't bury herself into, get comfortable and fall asleep. She exuded love. She exuded patience, pure joy, genuine happiness, all things that are good in this world and in the next. She was the soul that changed lives.

     During 2011, Parker had her first birthday and she was doing wonderfully. Yes, she was tube fed and had seizures, but the seizures were under the family's version of control (at this point she was on two to three anti-seizure meds and was having less than 20 seizures a week). Parker responded well to her physical, occupational and vision therapies. She was holding her head pretty well (even though she sometimes looked like a bobble head), tolerated tummy time, did well in her gait trainer and was able to sit shortly while propped. She was even laughing and smiling intentionally at things and people, the doctors had said she would never be able to do this. She loved proving them wrong with lots of things. They even went almost the full year without being admitted to the hospital, just temporary emergency department visits, countless doctor appointments and a day surgery to tighten her eye muscles.

  Things started to change in November 2011. Parker was not able to tolerate any of her feeds. There were gut wrenching screams anytime you put anything in her tube. They thought it was a virus. The doctors couldn't find anything except Parker couldn't handle that food anymore. So they switched her formula, something predigested, and it worked better. During this visit her body temperature went haywire. Parker had never run a fever in her entire life, not even with the worst of infections, but this time her temperature dropped to 93 degrees. She was diagnosed with dysautonomia. Her first case of c-diff happened in December that year, too. She became colonized with it. They did numerous vancomycin five week tapers and after each treatment would end, she would be positive for it again. In January 2012, Parker started aspirating on her own secretions. She couldn't control them anymore. By February, she was choking and would stop breathing from her aspirations and it progressively got worse daily. In March, the doctor injected Botox into her saliva glands in an attempt to dry them up to no avail. Finally, they took their last option - Parker had a tracheotomy on July 5, 2012. It was a great decision for her and her health. And as 'terrible' as all this might sound, the family was okay with it. They adjusted to their 'new normal' every time a new medicine was added, or another piece of equipment had to join her room and their routine, or they were hospitalized to change her formula again. 

 The scary times started in the middle of August 2012. Megan was at work when Parker's home health nurse called to say that Parker had only been awake for a few hours and had already had over 20 seizures. She had 86 that day. They just kept a close eye on her because when children like Parker start getting sick an increase in seizures can happen. Megan nervously went to work the next day and when the nurse called to say that Parker had already had 80+ seizures again, it was time to go to the emergency department. Megan met them at the hospital after work and Parker was already admitted. She completed that day with 102 seizures. The next day was the same, another 100+ seizures. The doctors did another EEG and MRI that day. The EEG showed all the seizures that they were seeing, plus more while she was sleeping, and the MRI didn't show anything new. The doctors said there was nothing they could do except sedate her at all times and even then the seizures might still happen. They couldn't add anymore seizure meds, she was already on five of them at this time.

The hospital brought in Palliative Care to talk to them. Basically, they were told that because Parker's brain was smooth (Lissencephaly) and extra small (Microcephaly, but it also only filled part of her cranial cavity) and because Parker's body was growing so well (she was a big girl), that she was literally outgrowing her brain's capacities. Phillip used this analogy to help Megan better understand what the doctors were telling them: "Parker was born, hypothetically with a golf cart battery (brain) and she was the size of a golf cart (body) but as she kept growing, she still had to continue to use this golf cart battery. And now that she's a full size truck, her battery can't run everything the truck needs it to. That golf cart battery will soon enough have to decide if it can run the motor, the headlights, the a/c and the interior lights. It will have to chose what it feels is most important." As much as Megan didn't want to hear this, something in her gut and heart told her that this time the doctors were right about her child's future. They were discharged the next day and again tried to adjust to a 'new normal.'

 They brought in Hospice in September when Parker's breathing and infections kept getting worse. The family had previously decided before it was ever needed what they were willing to put her through medically. They decided that they did not want to do a vent (this is a controversial topic and the family prefers not to be judged as they do not judge others for what they feel is right for their child). The last days of September, Megan's 'motherly instincts' told her it was time to stay home full time with Parker, that the doctors were right, that she was losing her baby. Megan took leave from work (though there were plenty of challenges with her job, it was because of LOTS of help from people from all over place that she was able to do what was needed; they made it possible). 

Parker's last month was very hard on all of them. She struggled. She slept almost every hour of the day her last three weeks. Megan never left her bed. Megan slept there, next to Parker, almost every night. She memorized Parker's face. She counted Parker's every breath. She ran her fingers through Parker's hair. She sang to her every day (Parker LOVED music). They cherished every last moment with her just like they had done her entire life. When Parker passed, she was in complete renal failure. She had been third-spacing for weeks and the diuretics weren't helping, she was so swollen. Her lungs were full from the Congestive Heart Failure and she was on as much oxygen as they could give her. Parker's brain had to slowly chose between her organs and their functions. Her heart was the last, but it, too, had to stop...

Note from Megan and Phillip: "Though it brings tears to our eyes to share this story, it's one that must be heard. We enjoyed every day, every moment with Parker from the day she was born. We lived every day like it was her last because we knew one day it would be. We regret nothing and would do it all over again if given the chance. She taught us more in her short life than most people get in 80 years. She made us who we are today. Though she's an angel watching over us now, she was an angel from the moment she was born."