This post has been on my mind for a while. I've been wanting to document exactly what we are doing in our care for Brenna - for ourselves, for others who may be dealing with a similar condition and to educate anyone who is interested in Brenna's health care needs.
While applying emollients (Aquaphor typically) seems to be at the forefront of our care, I think the most important thing we are tasked with is preventing infection while still trying to maintain a normal life.
Bacteria is on everyone's skin. But the typical person has enough barrier on the outer layer of their skin to protect against this bacteria infecting their skin. Brenna lacks this barrier and will always be very susceptible to bacterial infections, like the staph infection she had a few weeks ago.
Hand washing is a big deal in our household. Before we pick Brenna up, we wash our hands or use sanitizer. We sterilize all of her bottle parts and pacifiers on a daily basis, first washing them in the sinking and then boiling the parts in a pot on the stove. We spray down both her baby bathtub and the big tub with a bleach mix after each of her baths to kill bacteria.
Brenna gets a bath every day. This helps her skin soften a bit and allows us to remove some of the excess skin that builds up. Her body produces skin about 10 times faster than normal, so it is a constant battle against this thick skin build-up every single day.
skin build-up on her hands
Each evening when Evan gets home from work, we start the bathtime routine. Usually her baths take about a half hour, and the entire time, we are working on every area of her body to remove excess skin. Some areas that are prone to build-up are her feet, armpits, hands (because she keeps them clenched so much), groin and ears. We spend the whole time with soft washcloths rubbing, typically in circular motions, to get the skin off. We've also found that simply using our own fingers works really well, as if you're rubbing off peeling skin from a sunburn.
We have to be careful though to just gently rub and not tear. Open wounds are always a concern for infection.
Brenna is not really a fan of this process. She hates to be naked, she often gets cold by the end of the bath, and I'm sure our persistent rubbing gets pretty annoying :) But it's a necessary evil that we have to stay on top of!
old picture in the bath - she looks so different with those plaques of skin!
Also, every other night, we add a tablespoon of bleach to her baby bath tub (so it's about like a swimming pool) in order to kill off any "bad" bacteria on her skin.
After her bath - and throughout the day - she gets coated in Aquaphor. We are so incredibly fortunate that Aquaphor has a donation program for people with skin conditions and they send us a certain number of jars each quarter. That definitely helps! We've also tried another emollient called Vaniply that doesn't have the lanolin in it that Aquaphor does. I'm still deciding which one I like better. I'm used to Aquaphor, but Vaniply isn't really greasy, which is nice too. I think we will use both until Brenna can decide which she likes better!
Typically, Brenna's treatment is done before she eats. We wear medical gloves each time we apply ointment or change her diaper to reduce the risk of infection. When I do it by myself, I will change her diaper, then put on a new pair of gloves to apply ointment. When Evan helps, we each take a task so we're not both using multiple pairs of gloves.
We keep the Aquaphor in a bottle warmer to try to make it more comfortable for Brenna. We all know how horrible it is to put on cold lotion! We then use our gloved hand to take out a big glob of the Aquaphor onto a piece of gauze. From the gauze, we then apply it to her body. Again, this helps to reduce infection risk.
We also make our own baby wipes for Brenna. We tried to use the sensitive skin variety of wipes from Pampers but it irritated her skin. So now we use mineral oil, natural baby wash and water on paper towels so that it is sensitive enough to not affect her skin.
We have a whole-house humidifier that we run when necessary so that her skin doesn't get too dry, as well as a small one for her room. Thankfully, it's been so warm and more humid this winter that the humidity in our house has been really high! There is definitely a noticeable difference in the condition of her skin when the humidity is high vs. low.
LAUNDRYBrenna is very hard on clothes. The Aquaphor seeps into the fabrics and as a result, a lot of her clothes get really "heavy". Cotton is definitely the best. My favorite brand so far is Little Me - all of her Little Me sleepers hold up really well to the Aquaphor...and as a bonus, many of them come with matching hats :)
We do have to be careful with her wearing hats and tight-fitting socks for too long. If her skin stays too moist, the scale will build up easily. It's definitely an interesting balance to find: keeping her skin moist enough to stay hydrated and not crack open, but dry out enough that we can get the excess scale off in the bath so that ridges don't start to form again. I love to keep her in hats because it decreases the amount of Aquaphor that gets on everything - not to mention she looks so darn cute in hats! - but for a few hours each day, I leave her hat off, so that her head can dry out a bit and we can remove that extra dry skin.
To get the Aquaphor out of her clothes, I soak it in hot water with Oxi Clean for a few hours before washing it in hot water with Oxi Clean and free-and-clear detergent. Sometimes I have to run a load through a second cycle in the washing machine. I am so thankful that one of Evan's coworkers and her husband installed a tub sink in our basement so that I can soak Brenna's clothes easily every day (shoutout to Becky and Brett!) When we first brought her home, I was carrying buckets from our bathtub to the basement!
I usually try to change her outfit about four times a day because they get pretty gooey. The sleepers with snaps are by far my favorite because of how easy they are to get on and off, since we have to take everything off to apply the Aquaphor. I get very nervous with zippers, which might tear her skin, so there are minimal zippers in her wardrobe!
Brenna is still taking the oral retinoid that she was started on during her first week of life, but we have decreased the dosage and will continue to do so until she is off it completely. It's called acitretin and is similar to Accutane. It helps her skin "shed" more quickly.
We also take her temperature throughout the day. Brenna's body has a difficult time maintaining a normal temperature because her skin doesn't regulate her temperature like ours does, so we constantly try to make sure she's not getting too hot or too cold. Often her temp will get lower at night (in the 97 range for example) and so we'll bundle her up a little more. And additionally, a higher temp can mean that she is starting to battle an infection, so we have to monitor that.
Wow... so I knew this would be a longer post, but didn't realize it would be THIS long! The information just kept pouring out of me :) If you've read this far, props to you! I'm so glad to have this down now to be able to look back on and maybe serve as a reference to others...