I can’t quite remember how much I’ve shared on this blog, and I’m too lazy to go back and check, so just in case I forgot to mention it (or you didn’t catch it on Facebook), Eli has a colostomy bag. He had a congenital defect known as imperforate anus–in other words, he was born with no way to evacuate waste. Or, as we prefer to say, he didn’t have a bootyhole (because we’re really big on using technical and medical terminology). He was born with this perfect little bottom that looked like any other perfect little baby bottom until the doctors and nurses went poking around down there and realized something was missing. That’s why he was whisked away from us moments after he was born and taken to the NICU, and that’s why he got to ride in the amazing ambulance from our hospital to Children’s Hospital within hours of his birth. I wasn’t allowed to nurse him and he wasn’t allowed to take a bottle. Eating could have been disastrous, as there would have been no way for his body to rid itself of waste. I have jokingly said that I’m glad I’m not into home births (fine for other people, just not for me) because we wouldn’t have noticed his lack of bootyhole and I’m sure I would have put him straight to the breast. God knew what he was doing by making me a fan of delivering babies in hospitals.
Anyway, Eli had his first surgery when he was just over 24 hours old. That surgery created a stoma and a mucus fistula (did you know the intestines produce mucus?–fascinating!) so that he could have a colostomy bag. On my tiny newborn, it looked like he had been cut almost in half. The incision from the stoma to the fistula seemed to go almost from one side to the other. Everything was going very well until his wound dehisced thanks to an infection (which is, apparently, quite common…). In other words, the incision came apart in a rather unpleasant fashion, exposing his insides right down to the intestinal walls. For all intents and purposes, my son’s guts were hanging out.
I was surprised by his Down syndrome, and I was surprised by his being born without an anus. But nothing could have prepared me to see my baby like that, lying wide open in his NICU crib, so innocent, so undeserving of this hand he’d been dealt. I prayed a lot during that time and focused on staying faithful. It would have been really easy to be angry, but for some reason I wasn’t. I would just joke that we were going to have to talk to God about why he forgot to give my son a butthole. (Seriously, did I just put God and butthole in the same sentence?)
Healing the wound was an ordeal. I can’t even tell you how many specialists, nurses, and doctors worked with my son trying to speed up his recovery. The incision couldn’t be stitched back together because that would just trap the infection inside and make things worse. They couldn’t use a wound vac to irrigate it because his wound–gaping as it was–was too small. Their only option was to irrigate it by hand every couple of hours and pack it with special gauze. They also put a catheter into the stoma to divert stool away from the wound, but he managed to get his toes wrapped around it and yank it out a few times despite the inflated balloon inside that was supposed to keep it from coming out. As the days passed, we could see granulation tissue forming as the incision healed from the inside out. The wound healed much quicker than the doctors expected, and it was time to figure out the colostomy bag.
Because of the scar tissue and the shape of the stoma, it was nearly impossible to get a good seal on a colostomy bag. The stoma was angled towards the scar tissue, which acted as a canal that channeled his runny breastmilk stool downward, causing the bag to leak (what, too much?). They weren’t crazy about sending us home with a leaky bag, but we assured them we could handle it, even if we had to change the bag as often as a diaper. When I was able to break the record and keep a bag from leaking for a whopping 17 hours, they finally agreed to let us take Eli home. It was his one-month birthday.
It seems so funny to me now that we would measure the time we got out of a bag in hours. I can remember getting so excited about 24 hours, then 33 hours. Eventually, we were able to start measuring in days. We came up with all sorts of tricks for keeping the bag on and avoiding poop-splosions (as we call them), but our ultimate goal was always to keep his skin in good condition. Stool isn’t meant to sit on the skin, and it is highly irritating, as well as infected. Removing a colostomy bag frequently is like taking a bandage off of
the same spot over and over again–eventually the skin becomes raw. By the grace of God (and our newfound nursing skills), Eli’s skin remained in perfect condition. He had his second surgery–during which his awesome rock-star-of-a-surgeon created what we lovingly refer to as the “Million-Dollar Asshole”–at the beginning of April. We were home after a short hospital stay and all was well. Until last week.
Right now, Eli’s skin is broken down around the stoma and mucus fistula to the point that he has bleeding ulcers on his tummy. It seems that introducing semi-solids and purées triggered the irritation, although swimming could have something to do with it also. This is a problem for several reasons–it’s painful for him, difficult to heal, and requires constant attention. Most importantly, we need to get his skin healed before the colostomy closure surgery (when they will reconnect his bowels and he’ll get to try out that million-dollar asshole of his) or they won’t be able to operate. This is an impossibility as far as I’m concerned–we WILL get him healed, he WILL have his surgery. He has been through so much already that I’m just ready for him to be able to move past all of this.
So, for almost a week, I’ve been managing his stoma and stool output without a colostomy bag. Changing the bag just caused his skin to breakdown further, and leaving the bag off allows me to treat his skin with various medicines and clean up any poop as soon as he has a bowel movement–it allows me to keep the area as clean as possible to help the healing process.
After trying myriad remedies, his skin is finally starting to heal, but it’s a slow process. I’ve used Desitin, Neosporin, Nystatin, Aquaphor, Boudreaux’s Butt Paste, and Magic Butt Cream in an effort to soothe and heal Eli’s skin. We’ve gone from connecting two diapers and wrapping them around his midsection to contain poop-splosions to covering the stoma loosely with a 4×4 piece of gauze. I check him frequently and clean him up immediately when he poops. I even check him throughout the night. These are the times it would be helpful to have a home nurse, although I feel like I’ve become so tuned in to his needs that I can take care of him better than almost anyone at this point. I’m still waiting to hear back from the nurses at the colorectal center to find out if there is anything else we should be doing for him, but he seems to be making progress.
Many people have said to me that they just can’t imagine doing what we’re doing. They don’t know how we do it, they say. Honestly, it sounds like a lot on paper–and it is a lot–but he’s my son and I would do whatever I need to do to keep him healthy. I have conquered my squeamish stomach and actually touched my child’s intestines with my bare hands (how else do you think he gets a bath?).
But the reality is that I don’t mind doing any of it, even when I’m so tired that I’d love to have a nurse. Of course I would do this for him. I would do it for my daughter too. And it doesn’t really feel like we’re doing anything too special–we’re just taking care of our son to the best of our ability. I am just being a mom, doing what I hope any other mom would do. And at this point, it’s just become part of our routine–it’s become our “normal.” Yes, I’m looking forward to the colostomy closure and moving on from this. But I would do it all again if I had to. I would move mountains for my children, and for as long as I live, I will be there for them both. Because I have been given two precious gifts in my daughter and my son. My children are both healthy, despite my son’s current medical needs. And although we’ve experienced some loss and faced some surprises, we are lucky enough to be the parents of two pretty awesome kids. And at the end of the day, I think about the families struggling to have children and the families whose children haven’t fared so well as mine, and I thank God for our blessings.
We are a happy, grateful family. My husband and I love our children more than life itself. And regardless of any diagnosis, we feel like we are pretty damn fortunate. We can go to bed at night with peace in our hearts because even with all we’ve been up against, life. is. good. 🙂
Check it out–“Magic Butt Cream” is the technical term.
Eli looked like a little marshmallow man when the diapers were wrapped around his waist.