Pictured above, my toddler (Emma) and her dolly with an ostomy bag…
Play. Is. Important.
Period.
As a self-proclaimed child development geek, I’ve learned all about the importance of play. This is how a child learns about, explores and makes sense of their world. Reading about how children process their experiences through play was one thing, but guys- watching my toddler work through having these two new beautiful creatures in her home and in her life has been pure magic. She was only beginning to show a slight interest in dolls before the twins were born, but in only a short couple of months her own two “twin” dollies are with her pretty much constantly throughout the day. Daily walks to the park with her dollies in their stroller, changing their “stinky” bums, wrapping them up in “sleep sacks”, feeding them bottles, patting their backs to burp them, emptying their ostomy bags…. wait, what? Emptying their ostomy bags? You read that right…
Emma’s dollies have “poo bags”, as she would call them. If you recall from my first post, I mentioned that Olivia’s bowel had ruptured and she required emergency surgery when she was only two days old and weighing about 700g. What I didn’t add in there, was that she has a temporary colostomy as a result of this surgery. I had originally meant for this to be a longer post, telling you all about the discovery of the perforation, the experience of watching my little one get prepped for transport to SickKids, watching seasoned nurses get choked up as they put a breathing tube in her tiny body, talking to surgeons about possible outcomes, etc- but the twins had other ideas for my quiet time this morning. So stay tuned for that another day. For now, I thought I’d quickly share about what happened in a nut shell and really emphasize how cool it is to watch your child make sense of their experiences through play. Let your child direct their play- its amazing!
At first the surgeons weren’t sure if Olivia had a condition called necrotizing enterocolitis (known as NEC for short). It is common and big risk for premature infants. It is essentially when the wall of the bowel is invaded by bacteria and a large portion of the bowel dies. It is very serious. We wouldn’t know until they had a look inside to see what was going on in her poor swollen, red tummy. We were prepped for what could be a long surgery if this was the case. We headed down to the SickKids cafeteria to try to force ourselves to eat and wait for the phone call that she was out of surgery. We wolfed down a grilled cheese and fries at 10pm, suddenly aware we hadn’t eaten in hours and were unsure of when we might feel like eating again. We were very surprised to get a call only an hour and a half later. At first fearing the worst when receiving a call so soon, we were relieved to hear she was out of surgery and was back in the NICU recovering. We could go up and see the surgeon for a summary of what happened in the operating room. We learned she had a hole in her fragile small intestine, thought to be caused by hardened stool, and they had to remove about an inch and a half of her bowel. There were no signs of infection or NEC, and for this we were grateful. We would need further testing to determine the exact cause of the perforation and to rule out conditions like cystic fibrosis, but for now we were glad to know it affected such a small portion of her bowel. Our heads were swimming, but the surgeon continued to tell us that in order for Olivia to heal properly they had given her a stoma. When they took out the damaged portion of her small intestine, instead of suturing the remaining ends back together, they left each end of the bowel outside of her tummy. They explained that scar tissue forms whenever something needs to be stitched back together, and that due to her extremely small size they did not want the scar tissue to cause more blockages of her teeny tiny bowels- therefore we would need to wait until she grows bigger and stronger before reattaching everything. We were so grateful and in awe of what they were able to do to save Olivia, however disappointed that this meant she would not be returning to Mount Sinai to be with Evelyn. She would need to be followed closely by the SickKids surgical team for weeks and months to come.
The above picture is our first glimpse of Olivia following her surgery, recovering in the NICU.
She needed to be on “bowel rest”- which meant no tube feeding/no food in her tummy until they could be sure the stoma was functioning properly. This was an anxious time for a parent of an extreme low birth weight infant- doesn’t she need food to grow??? She received all nutrition through her IV while we awaited the first “poo” in her ostomy bag before she could get the go ahead to resume tube feeding.
I would spend half my day at Mount Sinai with Evelyn, the other half at SickKids, and try to get a couple hours with my toddler in the evening. Before heading to bed each night we could call each NICU for an update, asking the night nurses “did Olivia poo yet?!”. (Not how I pictured my first few days with my new babes, but it was what it was.) We were told this could take over a week sometimes, but luckily after three days her stoma began to function (I.e. output stool in her bag, poo in the poo bag!). We would now start our long journey to heal from surgery, gain weight, and get home…
Fastforward to now- she is home, still with the ostomy bag that I am ultimately responsible for maintaining, changing and caring for. She is due to have the ostomy reversed (or reattached) this fall. It is functioning really well for her right now and it provides lots of play inspiration for the toddler. I think she may even tell the babes apart right now based on which one has the “poo bag”. She is endlessly fascinated with it, but at the same time it is completely normal now and just a part of our daily lives.
Who would’ve thought?
Next week, I’ll rewind and start this story from the beginning- Our Twin to Twin Transfusion diagnosis and crazy in-utero surgery at 18 weeks of pregnancy (in-utero photos of babies included!).
Above, Olivia almost 4 weeks post surgery, ‘poo bag’ tucked into her diaper…
Dolly, with ostomy bag… lol