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After being confined to a hospital for the first 831 days of his life, Jaxyn Reynolds was finally welcomed into the home he now shares with his mom, Kim, and sister, Tessa, in March of 2024.
Following their second Mother's Day under one roof, Kim reflects on the joys of the past year, while discussing some of the hardships that many families face due to a continued nursing shortage.
"It's been a blessing to have my son and daughter under the same roof and to kind of create our own new normal," Kim said while waiting at the hospital for Jaxyn to be seen for issues related to his sugar levels.
One of the most difficult aspects of Jaxyn's extended
hospital stay was trying to divide her time between him and Tessa.
"I would try my best to balance everything out, to split the holidays between both kids, especially with all of the COVID regulations, there's times where I wasn't able to bring my daughter with me," Kim said, noting the financial strain of travel expenses and childcare while she was at the hospital.
"The amount of stress was causing me to constantly feel unwell. My heart was going into panic attacks quite often, and since coming home, I am at peace all the time," she said.
An especially heartwarming experience for the mother has been getting to see her children interact with each other and build their sibling bond.
"I get to watch them build a relationship that they never got to build before. And it is so funny because Jaxyn is complex, and Tessa is a six-year-old girl who's into Barbies and all things princess, and they have this hilarious love-hate relationship where they just they love on each other, but any chance they get, they're pulling each other's hair or just complaining like siblings do," she said.
"I never thought that I would be so happy to see two kids fighting, but it's been a blessing to see them build their own relationship," Kim said.
"The one day she looked at me, and she was like, 'mom, when we save up enough money and we buy our first house, Jackson can stay back at the apartment, he'll be fine. He's got his nurses,'" she joked.
Still, since being exposed to her brother, Tessa has become quite the little helper.
"She has made tremendous strides, and she understands what's happening. She's actually learned how to reconnect his circuit, because Jaxyn is very active, and I try to go to the bathroom and come back downstairs, and he's taken his circuit off, so she's been a tremendous help with stepping in, in those areas," Kim said.
For Kim, the peace of mind is well worth any of the growing pains.
"There was a point where, when he was not home, my phone was always in my hand, because I never knew if I was going to get a call for the other child. I always had to be prepared, and now I don't have to worry about that, because I'm right here in the same room in the same house, seeing what's happening," she said.
Since his homecoming, the family has experienced several milestones, including Jaxyn's grandfather holding him for the first time, and Kim, her mother and both children going out for a Mother's Day dinner together.
A little over a year after coming home, Jaxyn continues to have his hiccups, but also continues to make great progress.
"He's Jaxyn. He's happy, and he is making the best of the skills and the opportunities that he has," Kim said.
"At no point does he get upset because he doesn't have a skill that other people have. He actually sat up for the first time a couple weeks ago for about 10 to 20 seconds. He did fall back over and hasn't done it since, but he proved to himself and to us that he has the ability to do that," she said.
Still the continued nursing shortage looms large in their everyday lives, Kim said.
Jaxyn was born premature at 29 weeks and has been diagnosed with a number of conditions, including bronchopulmonary dysplasia and bronchomalacia Sotos syndrome, as well as cognitive and developmental delays, which requires around the clock care.
"We've had trouble finding nursing to maintain everything. I'm allowed 24-hour nursing a day for my son, and I'm not even getting half of that," Kim said.
These shortfalls have led to Kim stepping in to care for Jaxyn on her own, at times being awake for over 24 hours.
"Our mommy-daughter dates I have with my daughter get cut short quite often, or they just don't happen, because I cannot take him out somewhere by myself," she said, adding that even simple things like going for a walk are off the table without nursing assistance.
Several agencies have offered assistance to the Reynolds, but unfortunately all are experiencing the same shortage.
Despite Jaxyn's complexities, there is no specialized training needed to tend to him, with the only requirement being that the nurse must be a licensed LPN or RN.
"There's just not enough to go around. The biggest challenge that we're facing is that they just don't get paid enough to work in home health care," Kim said.
"And it's not just our family," she stressed.
"I honestly believe that as a community, we could bring more families home if we just had more knowledge of what it takes in order to make home healthcare work," Kim said.
That the issue has been ongoing is something she would like to see looked at by congressional and other leaders in government.
"We want the opportunity to be a normal family, and we can't do that without having support from enough nurses, but that goes in-hand with the legislators," she said.
"When you have a license and you're given options, you have to do what's best for your family, and I do respect that," Kim said.
"But our home healthcare nurses need better pay so that they're not forced to look at other opportunities, such as hospitals and facilities that do pay better," she said.
All in all, though Kim just remains happy to have her family together.
"I just want to say a big thank you to the community for stepping up and making our life at home possible," she said.