Meet Nash Parker.

 

 

 

When you look at Nash, you see a vibrant 20-month-old boy full of life, smiles, and perseverance. As the youngest of three boys, Nash has a strong sense of determination and will do whatever he can to keep up with his older brothers, Quinn and Cohen. “Busy” is an understatement for mom, Angela and dad, Emery, with all three boys under the age of six!

 

While small and mighty, Nash has been facing battles since day one. Nash was born on January 14th, 2020 with many congenital defects, part of VACTERL Association, which refers to a recognized group of birth defects. Nash had to have at least three of the component defects, which he does.

 

V - 13 sets of ribs, fused sacrum, low lying conus, and fatty filum

A - Nothing

C - Moderate secundum ASD and supracristal VSD

T - Tracheoesophageal fistula (TEF) – Type C

E - Esophageal atresia (EA)

R - Nothing

L - Right type 3b hypoplastic thumb, mild hypotonia right side

 

 

At merely two days old, on January 16th of 2020, Nash had surgery to correct the EA/TEF, which was successful. However, during surgery he developed pleural effusion - the accumulation of excessive fluid around the space that surrounds each lung. Due to this, he had to be put on CPAP oxygen and antibiotics.

 

Then, at about three weeks old, Nash went into congestive heart failure. He was given diuretics, which helped as they wanted to wait until he was bigger and stronger to proceed with heart surgery. Nash had a couple episodes of supraventricular tachycardia, which is an abnormally fast or erratic heartbeat that affects the heart's upper chambers. Fortunately, he was able to get out of it on his own both times.

 

 

Due to the EA/TEF and being born unable to swallow, Nash had an extremely difficult time learning to orally eat. At the beginning, he would eat tiny amounts – about a few drops – of breast milk fed through a syringe. This led to small amounts - about 10 - 70 MLs - by bottle. Nash never was able to catch on to breastfeeding. Angela says, they really tried, but it was too difficult and put a lot of work on his heart and body.

 

“As a mom that was a super difficult thing to swallow as I had breastfed both of my other boys and I felt like it was super important for Nash to get the benefits of my breastmilk too. Luckily, I was able to pump for 14 months for him and he exclusively got breastmilk until he was 14 - 15 months old. It was a very sad but extremely proud moment when I took my last frozen bag of breastmilk out of the freezer.”

 

 

At 6 weeks old, Nash was vomiting more often. Through an abdominal ultrasound, they discovered that he had pyloric stenosis; a condition in infants in which a narrow opening from the stomach to small intestine prevents food from entering the small intestine. On February 26, Nash had another surgery – pyloromyotomy surgery – which he recovered well from.

 

With the family longing to get Nash home, along with fears due to the spark of COVID, he was given a gastrostomy tube so he could go home. Nash’s g-tube surgery was on March 20 and the family was able to leave the NICU and bring him home to Kamloops on March 27.

 

About one to two months after going home, Nash had to get a GJ (gastro-jejunal tube) put in due to more consistent vomiting. The GJ tube helped in bypassing his stomach so the milk would go straight into his small intestine, allowing him to keep the fluids down.

 

These feeds meant Nash was hooked up to a machine for at least 20 hours a day. While Angela and Emery say it was incredibly exhausting on Nash, it was what he needed.

 

The Parker Family has spent well over 15 weeks away from home, either staying at the Easter Seals House or Ronald McDonald House in Vancouver. The out-of-town stays started on December 14, 2019 prior to Nash’s arrival, due to a high-risk pregnancy.

 

 

While Nash has experienced more in 20 months of his life than many of us will in our lifetimes, he has continued to persevere. Angela says, Nash has been poked and prodded at for most of his life and has also had sedated procedures such as an endoscopy and a spine MRI as well as countless feeding studies, esophagrams, x-rays and ultrasounds on different parts of his body. Further to this, Nash’s time in the NICU led to the development of positional plagiocephaly due to the PICC line in his head. This meant he favoured leaning his head to the left side which caused the shape of his head to be abnormal. A few months of wearing an orthotic helmet helped, however.

 

Dad, Emery says, it’s been hard to see Nash go through this.

 

“I wish I had a superpower to take it all away. I keep thinking, just give all of this to me. Why does he have to go through that? I get choked up thinking about it because I always ask, why? You see him, such a little sweetheart having to go through this. Why him? Put that on me, don’t give that to my kids.”

 

 

What's next for Nash?

 

Nash’s battle continues with more procedures. Currently, the Parker family is in Vancouver, with Nash having had heart surgery earlier this week. Angela says Nash is recovering well, but that the family must remain in Vancouver for at least a week for a follow up with the surgeon.

 

Nash also is in line for pollicization surgery on his right hand - a procedure that includes the repositioning of the index finger to make it work like a thumb. On top of everything else, he may also have to undergo spinal surgery for a tethered spinal cord in the near future.

 

As Nash continues to progress with oral eating, Angela and Emery hope that he’ll eventually be able to say goodbye to his g-tube. While Nash will always have struggles with eating, his parents are confident that he will adapt to what he can and can’t do in regard to eating, such as taking smaller bites, drinking more fluids with meals, chewing his food well, and so forth.

 

With the constant care that Nash requires, Angela has had to leave work temporarily as an LPN. While employed full-time in the construction industry, Emery often needs to leave work for out-of-town hospital trips and unexpected emergencies. Despite the daily battles, the unknown, numerous surgeries, and financial hardships, Angela and Emery remain positive and hopeful.

 

Little by little, we hope to help the Parkers as they continue on this journey with their warrior, Nash. Please help spread the word by sharing the campaign and offering support in whichever way you can. Together, we can help the Parkers persevere with positivity.