On April 14, 2016, at 6.5 weeks old, concern grew that Conner had developed Necrotizing Enterocolitis (NEC). We were often warned about NEC, but there was no possible way that we could prepare ourselves for how much it would change Conner's life. Conner was transferred to another NICU in town out of fear that he may require emergency surgery before morning (the children’s hospital he was in did not have a surgeon on-call). On top of fearing for our son's life, we then had to watch his fragile barely two-pound body get loaded into what literally looked like a pizza delivery warming bag. He was then transported across town in an ambulance. 15 minutes later when he arrived at the new NICU, he was sicker than we ever thought possible. The ride took a major toll on his little body and he was literally fighting for his life. 

     I had been dreaming of the day that we would take Conner out of those hospital walls and home with us. The first time he left the hospital, he was clinging to life and I was left watching the ambulance wailing down the street. The last time I felt that helpless and empty was when I was discharged from the hospital without our boys. I wouldn’t wish that feeling on anybody.

     Our ostomy journey was challenging and a steep learning curve. It also ended up lasting much longer than I imagined, but I am thankful it is behind us. Conner received his first ostomy on April 17, 2016 when he had emergency surgery to remove a section of diseased bowel. I don't go back to that night in my head often, but when I do, it is terrifying. Conner was too sick to move to the OR, but we were lucky enough that the room next to us was equipped for surgery. The one thing I remember that night was a nurse came in and gave me a hug. I have no idea who it was (we were new to that NICU and I couldn't see through the tears in my eyes), but I will forever be thankful for her kindness. 

     For the next three months, we let the nurses handle Conner's ostomy bag changes. I think adding another thing to our mind wasn't an option at that point...and we thought there was no way Conner would go home with an ostomy. Anyway, on July 19, 2016, Conner had a scheduled ostomy take down. A long 10 days later, Conner had emergency surgery to remove a blockage and he left the OR with yet another ostomy. 

     After the shock subsided and the realization that Conner was going home with an ostomy, we began learning everything there was to know about ostomy care- the million and one bag options, how to clean the bag, how to change the bag and most importantly, products to help attach and keep the bag on as long as possible. If I am being honest, I HATED Conner's ostomy. It was the source for so much anxiety for me. With time, we found a bag and system that worked well for Conner and stayed on for close to a week at a time. 

     On May 2, 2017, Conner had his fourth bowel surgery to remove a blockage and take down his ostomy. Conner spent two weeks in the hospital recovering from surgery and dealing with other medical struggles (like silent aspiration, feedings, etc.) that popped up. In Conner fashion, he was inpatient twice as long as anticipated. For anyone that has lived through a bowel surgery - waiting for a bowel movement is both nerve wracking and slightly humorous. We thought we were prepared for diaper rash and dirty diapers, but quickly became thankful for Conner's stool previously being contained in a bag! All joking aside, we were so thankful for a successful surgery and dirty diapers! 

Ostomy Supplies 101

     An ostomy can be very overwhelming at first (at least it was for me). However, like anything else, after time it becomes your new normal. There are a million and one bag options, supplies, ways to attach a bag, ways to empty a bag, etc. Just when you think you'll never find a good system, you do. Pretty soon the bag stays on 2 days, then 3 and before you know it, you've made minor tweaks and the bag lasts a week! Below is what worked and didn't work for Conner. 

• Find a friend or resource you can bounce ideas off of. This was the biggest help for me. I met an amazing mom in the NICU that has a son that went home with an ostomy as well. We texted often and shared tricks we learned, what wasn't working for us, shared supplies, and frankly just vented about ostomy bags coming off and attempting to change them solo! 
• It is helpful to have a second set of hands when you change an ostomy bag! Wandering baby hands inevitably find their stoma or the guaze with stool all over it. 
• Disposable underpads - these will save you from washing your child's changing pad covers daily! If it gets dirty, toss it and grab a new one! We actually still use these. 
• As you may notice from photos, Conner's stoma was prolapsed which made it a little tricky to put his bag on. Depending on how prolapsed it was when we changed bags, the stoma could be curled and sometimes face down on his skin. The prolapse actually wound up working in our favor because it provided an anchor of sorts that helped keep his bag on. 
• Due to Conner's prolapsed stoma, we were able to bulk up his wafer to give it more thickness (more layers for the stool to eat through which resulted in the bag staying on longer)
• Conner used the Convatec 22771 bag (see below) which is a one piece system (wafer is attached to the bag). We had a template that was used to cut out the correct shape and size to fit Conner's stoma and mucous fistula. 
  • We used the Stomahesive skin barrier as an extra wafer. We had a template that we used to cut out the right wafter shape and correct size and shape to fit Conner's stoma and mucous fistula 
    • The stomahesive was attached to the Convatec wafer and then the stomahesive was what attached to Conner's skin. 
  • Once the bag was attached, we used duaderm to add yet ANOTHER layer of protection to keep the bag on (can you tell we really didn't want him bag to come off??)
    • I cut the duaderm into 1.5" pieces and then cut small triangles out of both sides (alternating each side) in order to help the duaderm curve around the outside edge of the adhesive part of the Covatec 22771 bag. 
• Like I mentioned, there are a million ostomy products. The ones below are what worked best for Conner.