Patients admitted to the Cook Children’s Neonatal Intensive Care Unit (NICU) can spend days, weeks or months there. No matter the amount of time spent there, the connections built between the tiniest patients, their families and their care teams last a lifetime.

For the first time since 2019, the Cook Children’s NICU hosted its annual reunion on Sunday, April 30 to celebrate those connections.

The NICU reunion allows Cook Children’s former patients and their families to reunite with their care teams, including nurses, physicians, therapists, child life specialists and more. The care teams spend a significant amount of time with their NICU patients and their families while they’re admitted to the hospital and they always look forward to seeing how the former patients are doing after they are discharged from the medical center.

The NICU reunion marks milestones and celebrates the achievements and successes of each of our patients.

Among the over 680 excited attendees was the Dorsey family, who spent 216 days in the Cook Children’s NICU with their son, Bryan.  

Bryan was born at 23 weeks weighing 1 pound, 3 ounces. During his stay in the NICU, he spent the first 100 days of his life on a ventilator, underwent several procedures and received 14 blood transfusions.

“He is a fighter!” said his mother, Natalie Dorsey. “Bryan was discharged from the NICU on one liter of oxygen and feedings via G-Button but was able to move past those supports rather quickly. He is a very healthy 4-year-old who attends school and plays T-ball.”

Dorsey said she looked forward to reconnecting with friends at the 2023 NICU reunion.

“I looked forward to seeing familiar faces of people who made a huge impact in our life,” she said. “The last reunion we went to, Bryan was still on oxygen.”

Dorsey added, “Our NICU friends are still some of my most favorite people. My overall experience with Cook Children’s has been phenomenal. After living the NICU life, I decided to give back as a volunteer and now I’m an employee!"

As the parents as partners coordinator, Dorsey often has the opportunity to share stories from her family’s journey at Cook Children’s. 

“All my best stories come from our NICU days!” she said.

1. Save your bark for when you really need it. One afternoon when Ralph and I were on a walk through our quiet neighborhood, we were mutually startled by a big dog with an even bigger voice, sprinting back and forth behind a fence, barking ferociously at us. I squeezed the handle to his leash tightly for fear that he may want to take part in conversation with the barking dog. To my surprise, he did nothing but tilt his head, study the dog for a moment, and keep on his way. I was struck with the realization that Ralph barks so sparingly, that surely he is saving his bark for when he really needs it. In life, a lot of dogs are going to bark at you, and a lot of them are trying to get you to bark back, but maybe it's better to tune them out and just enjoy your walk. You can always bark when it's really necessary.

2. Meet people where they are. When I first returned to work with my new constant companion, I felt reasonably unsure of his ability to read the room in an unfamiliar environment. I worried when we were called to see very young patients, I worried when we were called to see very fragile patients, and I worried when we were called to see patients with conditions or diagnoses that changed their appearance. It turned out, of course, that my worry was for nothing. Ralph showed me that he instinctively knew to mourn with families who needed to mourn, to be very gentle with children who were critically ill, and to play with children who wanted to play. He showed no judgment to any child, only the love and reassurance they were looking for. I strive to be as unwaveringly accepting as Ralph has proven to be.

3. A little encouragement goes a long way. In a hospital that has four adorable golden retrievers on staff (who are often confused for each other), Ralph has become known as the one with the silly tricks. In teaching him to do new things, I have seen very clearly the difference between what happens when I am unenthusiastic and directive, versus when I am excited for him, cheer him on, and let him know I believe in him. He now recognizes the words, "you can do it" and "you got it," and when he hears those words, he almost always tries again (usually with more "umph!"). Maybe we should practice that with each other. Maybe we should pay attention to the difference it makes to our family members, our friends, our coworkers, even our pets, when we cheer them on. Sometimes all it takes is one voice saying what you already know deep down: you got it.

4. Seize every opportunity you possibly can. While at times Ralph has seized opportunities I am not as proud of (like helping "clean up" spilled food off the floor), he also seizes opportunities to find joy and make a difference. He beelines in the hallway to people I haven't noticed, who he somehow knows need him close. He photobombs families capturing a memory here at the hospital and by doing so, causes an eruption of laughter. He finds patches of dirt to roll in immediately after his bath. And he literally always stops to smell the roses. To Ralph, an elbow resting on the edge of a table is not an employee paying close attention to their work, it is an opportunity for a nose-nudge to initiate petting. To Ralph, unless it's nap time, every passing moment is an opportunity for something. Thinking about that makes me wonder how many opportunities I miss when I think I'm too busy to notice them.

5. Last but certainly not least, don't take yourself so seriously. I knew from the very beginning that Ralph had excellent comedic timing. One night while still in Georgia for training with Ralph, I was laying with him and telling a story. He reached his long arm out into the air and dropped his paw directly over my mouth, as if to say "shhhhh." He has been making me, and everyone else, laugh ever since. From perfectly-timed audible groans during long meetings, to prancing so wildly that he trips himself, Ralph is one funny dog. And even though he has an incredibly important job, he knows not to take himself so seriously. It's as if no amount of accolades, photos taken or articles written could ever make him arrogant. He does what he does because it is fun and joyful and it matters. It's as simple as that. Oh, and around 4:45 p.m. every day, you can find him rolling on his back care-free in the grass outside the south tower, reminding me as I stand there and laugh, to stop taking things so seriously. 

About the author

Kizzy Marco is a certified Child Life Specialist and the Facility Dog Program Coordinator at Cook Children's. She is Ralph's handler. Ralph came to Cook Children's with his sister Chanel. He is known for his big personality and many tricks! A warm and fuzzy hug can help anyone feel better. A dog's healing presence is known to have a positive influence on wellness. That's the driving force behind Sit...Stay....PLAY, the resident dog program at Cook Children's. Click to learn more about the program.

You decide to seek out some information online and you find this:

“Although data to make specific recommendations as to when it is safe for infants to sleep in the prone or side position are lacking, studies that have established prone and side sleeping as risk factors for SIDS include infants up to 1 year of age. Therefore, infants should continue to be placed supine until 1 year of age. Once an infant can roll from supine to prone and from prone to supine, the infant can be allowed to remain in the sleep position that he or she assumes.”

AAP SIDS and Safe Sleep Guidelines

“Heh?”

Hopefully none of us really talk this way, but I have a feeling sometimes it’s close. Doctors have a notoriously bad rap for their handwriting; fortunately, we’ve mostly fixed that with electronic records. Unfortunately, some of us aren’t known for our amazing verbal communication skills, either.

A study released in Pediatrics this week highlighted this fact. The authors surveyed mothers of 4-6 months old babies about the education they received from their doctor when their baby was a newborn.

They asked the mom if they received advice on the following topics: vaccination, breastfeeding, sleep position, sleep location and pacifier use.

All of these seem like pretty basic newborn information. Most doctors would want to cover them during that time frame. They all are included in very specific guidelines with clear instructions for how the American Academy of Pediatrics wants us to educate our patients?

How did the doctors do? The following percentages reflect the number of mother’s who reported receiving correct advice for the respective topics:

1. Does it seem like we’re speaking in a foreign language?

For many cases, the study showed that either the doctors failed to mention some pretty important topics or they weren’t presented in a way that parents understood or remembered.

One of the reasons I love to write is that it forces me to have clear thoughts about the medical issues I deal with every day and to focus on clear strategies for communicating those thoughts to patients. Of course, I’m not perfect. Here are some of the communication mistakes I (and from the results of this study, other doctors) make and some strategies for the way things should go (with help from you of course):

Some people describe the first few years of medical school as being more or less a foreign language study. During those years, medical students learn terms that most people don’t need to know. We use them as a way to communicate with other doctors as we begin to learn from “real” patients in the later years. The problem is we sometimes forget that we can’t talk that way all the time if we want to be understood by our families.

How can you help us while we work to get better?

Don’t be afraid to ask questions or to stop us if you don’t understand. Your child’s health is important to us. We know that you have to understand our instructions if we want to have any chance to help your child stay healthy or get better when they are sick. Ask us to slow down or to re-explain a certain concept again if what we say doesn’t make sense.

2. Have we given you the best opportunity to hear us?

This newborn study is a perfect example of this. A newborn mom is tired and stressed and getting health advice from the nurse, the doctor, their family and the Internet, so what usually ends up happening? We rush right through with the messages that are important to us and hope that mom gets them in 5 minutes.

Thanks for coming in. Good luck, mom!

Other examples are when we deliver bad news or just simply have a baby with an ear infection that is screaming in pain while we get louder and louder to make sure we are “heard.”

How can you help us while we work to get better?

Some are easier than others. When we’ve delivered bad news, there’s probably nothing either of us can do to help in that situation. But we should definitely slow down and wait a minute to let you think before we plow through into “next steps.”

If your baby is fussy and you can’t concentrate, feel free to ask if a nurse could come help for a second while we talk. Even if the baby stays in the room, just having them out of your arms makes it easier to listen. During those newborn visits when you are sleep deprived, ask for resources that you can take home and read when your mind is a little more clear (if that every actually happens for any of us with newborns).

3. We try to cover everything, but did we focus on what you want to learn?

This has another medical school analogy. Some people refer to the first few years of medical school as “trying to drink from a firehose.” There is so much information coming so quickly, you have to learn how to decide what is important enough to waste brain space on and what can be discarded (or “Googled”) later. So, when it comes to giving advice, we assume that you can do the same. The other assumption we make is that you actually care about the things that are important to us.

How can you help us while we work to get better?

First and foremost, please bring a list of questions. This helps us to focus on the things that are important to you, which are the things that you are going to remember anyway. As I get to know my “listers” better, I tend to grab (nicely) the list out of their hands and start writing the answers down (in ugly doctor scrawl) as we go along.

This is another time when asking for resources can be really helpful. Ask us to highlight or point out sections that are related to what you have talked about in the visit. Now, for this strategy to work, the resources have to come out of the diaper bag before they get formula and other baby fluids spilled on them - better yet, maybe they can just be pulled up on your phone …

I work hard to avoid these mistakes. But as I said, I’m not perfect. Communication is vital between a pediatrician and a parent. In the medical community, it looks like we have a lot of work to do.

Fortunately, we have some great examples at Cook Children’s to learn from.

But we can all get better with your help and feedback.

They could all learn a lesson from a young woman named Marissa Heintschel.

I learned about Marissa during one of my recent searches for news about my field, pediatric endocrine. The news story featured students in the Frisco high school independent study and mentorship program.

One of the students in this program was Marissa, who had chosen pediatric endocrinology as her focus of study. I reached out to her via Twitter to learn more about her experience in the program and was very impressed by her story.

Like many in my field, she had a personal connection to pediatric endocrinology, having been diagnosed with Type 1 diabetes at 7 years old. She shared with me her passion for medicine and her experience she’s gained and the research that she did during her year in the program.

I asked how her experience had changed her view of children living with a chronic condition such as Type 1 diabetes. Her answer gave me a fresh, personal perspective on challenges of life with this chronic condition:

“I have always made it very public that I had Type 1 diabetes,” she said. “I went through the whole phase of trying to hide it away from people. I wish I would’ve realized sooner the importance of taking care of myself because when I was 14 or so I was stupid and thought that if I ignored my diabetes it will go away and that I could run away from my problems.

I wear an insulin pump. I’ve been called things like a robot and people in random places will just stare at me.

There was once this kid in my class sophomore year that I started to become really good friends with. One day I asked where he went and someone said that he went to go take his shot because he was diabetic. It was so surprising to me because no one really knew he was diabetic.

So then I started talking to the kid more and more about his diabetes and he just opened up to me and was able to talk about his problems that only people like us could understand. After he opened up to me, he told me how thankful he was that we had grown closer because he now felt he had the confidence to tell people about his diabetes.”

Marissa’s story got me to thinking about the importance of sharing about having Type 1 diabetes and how difficult it can be. I, and others on the Cook Children’s diabetes team, speak to children and their families about sharing about their diabetes when we meet with them at Cook Children’s during the difficult period of initial diagnosis.

• Support
• Safety

These are the two important reasons for S haring with others about having diabetes.

Sharing opens the opportunity to understand better the routine (checking blood sugars, taking shots, meal planning, etc.) that someone with Type 1 diabetes must do daily. Sharing opens up opportunity for support and encouragement. In Marissa’s case, it may be the opportunity to encourage and support someone else with Type 1 diabetes.

Marissa’s story also shows that sharing does open up vulnerability and risk. I asked Cook Children’s endocrine clinical therapist, Kim Cox, how she talks to children and families about sharing about diabetes.

“I usually talk to them about how ‘secrets’ tend to make other kids think it’s a bigger deal.

Why don’t they want others knowing? Are they

…. embarrassed?

... afraid of bullying?

... etc.

Being honest (but brief) about answering peers questions seems to work best. For example, I have diabetes, I have to take medicine when I eat now. We then discuss those issues.”

I use the example of a kid who gets glasses in school. In the beginning, you notice every time you see them, peers will comment and possibly even say mean things, but as time goes on, their glasses just become part of them and you only notice if they don’t have them on. Other kids move on to something else.

Safety is important because even in the best of cases diabetes care is unpredictable. High or low blood sugars affect mood and behavior. In particular, a low blood sugar can cause erratic behavior and eventually unconsciousness. Knowing about the diabetes allows others to have the advantage of understanding and help someone with Type 1 diabetes.

Marissa has a future of opportunity ahead of her and will be starting college at my alma mater, Texas A&M, where she will major in biomedical engineering and pre-med. She told me that she chose biomedical engineering because the potential that technologies such as stem cell research and tissue engineering for a cure for diseases such as diabetes. Being a doctor is her dream, and I think that she has learned a lot from her experience that will help her in the long journey to a field in medicine.