Welcome to Tristan’s Journey! We are using this journal to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement!
-Tristan’s Story-
Tristan was born September 9, 2023 and we were elated our baby boy finally arrived. Aside from having a little fluid in his lungs and needing a bit of oxygen immediately after birth, he appeared healthy. Throughout our postpartum stay, Tristan was hitting all the markers he needed to, except having a bowel movement (BM) within his first 24 hours. It was probably hour 32 that he finally had a BM. With that, we were given the ok to head home.
After arriving home, we noticed Tristan was a good sleeper. Such a good sleeper that we had trouble waking him to eat. When we did manage to wake him, he wouldn’t eat long. He would latch for a few minutes and then fall asleep. At his first pediatrician appointment, he was given a clean bill of health. They did want to see us again since he had dropped a few ounces, but nothing too concerning. When we came back a few days later, he had dropped another ounce. The pediatrician checked to make sure he wasn’t tongue tied and ensured he had a strong suck. They were thinking that he was a lazy eater, which some babies can be. They recommended we try a different bottle with a premie nipple to see if that would help him eat and would check his weight again in a week. Unfortunately, we didn’t have much success. Every feed was a battle, struggling to get Tristan to eat even an ounce before he would fall back asleep. He was also having strange and very smelly BMs. (Typically newborn poos don’t smell and that was not the case for Tristan.) By the weekend, a few days before his weight check, we noticed Tristan’s skin appeared very gray and it was evident he last lost even more weight. We knew something wasn’t right and it wasn’t just because he was a lazy eater.
We called our ped’s office first thing Monday morning and got an appointment with the nurse practitioner. The NP tried feeding Tristan with our bottle and one of their bottles. Then they tried using a few different types of formulas. Tristan wasn’t eating. He even had a BM while at the office, which she saw (and smelled) wasn’t normal. She even noticed his tummy was very taught for baby who wasn’t eating. She advised us to head to the ER.
When we arrived, they immediately started running tests on Tristan. Poor guy got poked and prodded but he was such a champ. While they were waiting for results, they decided to take X-rays of his tummy. They noticed something but it wasn’t conclusive. Tristan was then sent for a contrast X-ray where they were able to see blockage in his colon. We were immediately taken to pre-op for surgery. It was explained that they needed to biopsy Tristan’s colon because they believed he had Hirschsprung’s Disease, and because of this, Tristan was going to need an ostomy. Twenty minutes later, Tristan was wheeled off to surgery.
Surgery was a success. Tristan’s surgeon, Dr. Coln (pronounced “Con”) said Tristan did great for such a little guy, and he was breathing on his own fairly quickly after his surgery. Dr. Coln explained that although he wouldn’t have a definite answer until the biopsies came back, he was certain Tristan had Hirschsprung’s. His exact words were “If it looks like a duck, quacks like a duck, it’s most likely a duck…but occasionally you get a goose.” He told us we would be able to see Tristan soon and would head up to Peds/PICU.
While Tristan was in recovery, Brian and I were reading all that we could on the web about Hirschsprung’s. We quickly learned that this is a very rare disease and is diagnosed mostly during the newborn phase, but can be diagnosed later in life. His ostomy will be reversed at some point in time, once he grows and gains weight. The good news in all this is Tristan will be alright. He will go on to live a normal life and this will all only be a memory. But there is a road ahead of us and there will be challenges, just like with every other hardship in life.
The first few days after his surgery are a blur. We had doctors and specialists visiting our room so often at times it felt like we didn’t get to sit down and take in all the new information. Tristan was hooked up to so many things: IVs, a midline, a catheter, plus a feeding tube, it was hard to process. But the doctors and nursing team at Mercy Kids have been exceptional. Everyone has managed to take time to explain everything to us as well as make us feel at ease.
Things had been slowly moving in the right direction until a week after his surgery. During his morning check, I noticed his stoma didn’t look normal and we called the doctors in. Something had happened and additional intestines started to protrude out of his ostomy hole. Also, his ostomy was just leaking fluids, all the fluids that were giving him nutrients, so his body wasn’t really absorbing anything. The only way for this to be fixed was to have another surgery. Although it was a shock (again), we knew it was the right thing.
After another successful surgery, things have been slowly moving in the right direction. His body started retaining the fluids and nutrients, so much so that he really started to get puffy. It was strange to see him with some extra weight so quickly, but it showed us just how sick he was before his diagnosis. As his body processed everything and adjusted to the ostomy, he started to eat on his own again. He had to work with the speech/OT team to relearn how to eat, but every session he was showing improvement. After about a week of the feeding tube, he showed enough improvement that we could finally have the feeding tube removed! His biggest hurdle now is to continue to eat and put on weight.
We don’t know much of the road ahead of us, but we know it’s going to be a lot. That being said, we know we can get through it. It’s reassuring to know that he will be just fine, but we are not naive to the fact that there will be setbacks. As for right now, we take it minute by minute and we celebrate every small achievement.
Through all this, we are overwhelmed with the outpouring love and support from our family and friends. From coffees, to meals, to gift cards, everyone has been so generous. But the most amazing thing has been the prayers. We certainly appreciate absolutely everything everyone has done and has offered. There aren’t enough thank you’s in this lifetime that we can say to you all. They say it takes a village to raise a child, and our village has really rallied behind us and we couldn’t be doing this without the love you all have shown us.
As for Sadie… she is the best big sister. She loves coming to the hospital to see her “baby.” She’s been to the hospital so often, when she gets off the elevator, she runs down the hall to his room. She’s being just a champ with all the changes and we couldn’t ask for a better girl.
We will continue to provide Tristan’s updates here. And we hope to keep providing positive updates!
A couple of weeks ago, Tristan’s diaper rash came back, and with a vengeance. It seemed liked nothing was helping. We took him in to the pediatrician who said the rash was so bad it resembled a burn. We were given a new prescription that helped, but the rash never went away. Poor guy had to have been in a lot of pain. But he is such a strong boy. His big smile and loud laughs gave us some reassurance.
Thankfully our trip to Cincinnati Children’s was right around the corner. We got to meet with his new team and understand Tristan’s long term care. It was also the first time we’ve had X-rays since all his surgeries. Everything healed perfectly! However, the doc pointed out there was a lot of gas in his colon. We weren’t surprised that there was gas, but we were surprised how much! No wonder he was uncomfortable!
His new doctor evaluated his diaper rash. She kept asking if we had tried this and tried that, and every time it was “Tried it…doesn’t do much.” This when they instructed us that we’ll need to start doing daily irrigations. As tumultuous as they can be (and chaotic), they are working! We’ve been diaper rash free for almost a week now. He’s no longer in constant pain and he can finally have normal BMs without pain. He’s also sleeping better because of the irrigations! He’s managed to give us a few full nights’ sleep (which have been absolutely lovely!)
All in all, he’s doing well. We’re not out of the woods yet but at least things are going in the right direction! We appreciate all the prayers!
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