It’s been a while since we’ve done a patient spotlight, it’s like we’ve been in the middle of a global pandemic or something. Today’s spotlight about this little fighter is definitely worth the wait.
On March 2,2019, Alyssa Hart was only 26 weeks along in her pregnancy when she went into labor and delivered her son Tripp. At only 26 weeks gestation, Tripp was considered a micro preemie weighing in at only 14.8 ounces. One might think a baby that tiny wouldn’t have a lot fight in them, however Tripp is a heavyweight champion fighter. He has battled prematurity, BPD, pulmonary hypertension, multiple hernias, ect. and he still has a lot of fight left in him and more personality than most people. TENACIOUS!
As many micro preemies do, Tripp had issues with bronchopulmonary dysplasia (BPD), pulmonary hypertension, and cardiac issues. Those tiny little lungs were going to need a lot of time and support to heal. His parents Alyssa and Dexter discovered that Children’s Hospital in Houston has a specialty unit for pulmonary hypertension, so they made the incredibly brave decision to have Tripp transferred from Alabama to Texas. This meant that Alyssa and Dexter would have to be separated for a lot of the time while he maintained his job and cared for Tripp’s big brother. They knew Tripp was a fighter, they knew he could bust out of the hospital, he just needed the right support behind him. I can’t imagine having to make the decision to transfer my tiny little baby multiple states away from my support system, but when you have to help your child fight, you do whatever you have to do.
By July, Tripp was weighing in at 5 lbs. Micro preemie who? He also started his obsession with his binky and made sure everyone knew that the calm life was not for him. My little buddy is a firecracker, if he doesn’t like something you will know it, if he loves something you’re going to know it. No gray areas with Tripp!
In September, the decision was made to give Tripp a trach and a g-tube due to the long term need of support and the freedom the trach compared to an endotracheal tube would give Tripp to move around. He did fantastic during the procedures.
By October Tripp was 10lbs and 15 ounces of pure cuteness. He was and is still a fan of looking at himself in the mirror and making faces. He learned how to pout, very well. His all time favorite game was to pretend he’s sleeping so his therapist will leave him alone, which he still does to this day. Rhinovirus and pseudomonas caused a set back requiring Tripp to go back on the INO to help with his pulmonary hypertension. November brought the extraordinary news that Tripp went from being only 14 ounces to weighing in at 14 pounds!
December brought even more good news, Tripp was able to have a huge pressure lifted off his chest literally when the cardiac team was able to fix his PDA (patent ductus arteriosus) meaning the pressures in his heart and lungs decreased. Then big boy graduated from the NICU to the PICU. A few days later, Tripp said see ya later to the INO.
In February of 2020, I was lucky enough to fly out to Houston and complete the home vent training with Alyssa and Dexter and to finally meet Tripp! That boy had me wrapped around his finger before I even made it all the way in his room. Tripp was beyond ready to break out and get to see his home for the first time. Training Alyssa and Dexter was one of my easiest trainings since they had already been researching how to take care of Tripp.
The excitement only built when we found out he would get to arrive home on his 1st birthday! Tripp and family made the journey home and they finally all got to be together under one roof. This made big brother extremely happy, he is his brother’s keeper!
July of 2020 brought even more great news, his pulmonary hypertension was now considered mild to NOTHING. As of December “Tripp has finally gotten full control of his head and neck. He is able to sit unsupported for short amounts of times; he is able to sit with minimal support for 15-20 minutes at a time. He’s been more interested in bearing weight through this legs (jumping for joy), but he needs maximal support to do so. He is rolling circles around us non-stop… we are looking to invest in one of those big floor gated pens for his own safety. He loves to bite. He still has an oral aversion, but we are working on it with Speech Therapy. Lastly, Tripp is giving us an early dose of the terrible twos. His personality has always been BIG, but it’s shining more and more these days.” as Alyssa stated on her blog Tripp’s Journey.
I always like to ask the mom’s a few questions to get the views from their perspectives instead of just mine. Medical parents are a whole community of extraordinary people, their advice is generally priceless.
I asked Alyssa what she was most scared about once she knew they were going home. She told me her biggest concern was not having their health team there 24/7 like they had for the past year. She told herself everyday “I just have to keep him alive and happy”, and boy was that a job! Don’t let her fool you though, she’s a rockstar!
Alyssa said she feels like her greatest accomplishment since settling in at home has been finding her voice to advocate for Tripp. She goes on to say that so many times she was dismissed when she had ideas as to what was wrong with him and 95% of the time she was right, but it can be a challenge getting other people to listen.
I always tell my caregivers, no one knows your baby better than you, if you think something is wrong. scream it from the rooftops until you find someone who will listen. Advocating for your kids like a bulldog truly is an accomplishment and a badge of honor. Alyssa is dogged in her pursuit of quality care for Tripp.
Alyssa’s Tips for new Caregivers:
- Always trust your gut, you know your baby.
- If the doctors or medical team are speaking on a concept you don’t understand or are not familiar with, educate yourself so you can have a 2-way conversation and make a joint decision with the medical team.
- Support groups are so helpful.
- Comparison is truly the thief of joy. Your child’s journey is theirs’s and not anyone else’s. Don’t let social media have you thinking everyone around you is happy and succeeding in their medical journey. We ALL have our crap moments.
If you would like to stay updated with Tripp’s progress check out https://www.facebook.com/trippsjourney1/?ref=page_internal or to support the ongoing medical expenses by purchasing a shirt or sweatshirt from here https://www.bonfire.com/tripps-tribe160/?fbclid=IwAR0kMS3-Kg8FiaAIMT8b9_7C-LfkVtRD-ejX1E04cJqmsC5TX3dDCmESURc And as someone who has one, they are SOOOOO comfy!