A day in our life

IMG_3220Someone asked me what a day in our life is like now that we have Kiira. Although there are some differences, it really isn’t all that different from anyone who has a newborn. Aside from Kiira’s skin, she is still a normal baby who eats, sleeps, plays, and has now found her voice. She loves to make a loud roaring sound over and over again. She loves to watch her sisters play and  you can see a smile light up her face when they talk to her. She doesn’t know that she is different yet, so I keep trying to remind myself not to treat her differently either (aside from being very careful with her, of course). So here is what a typical day looks like:

At around 6:40am I wake up to pump milk for Kiira before the family wakes up at 7am. We get the kids ready for school or other daily activities and I try to get a shower right away or else the day slips away before that is possible. Kiira wakes up around 7:30am and I feed her, change her diaper, examine her skin for any new injuries, and then put her on her playmat to play. If the other girls are home, I get them breakfast and we continue on with our day. The mornings usually hold some kind of activity for the girls and if we’re out and about, I bring the pump, a bottle, soft blanket, snacks, diapers, and a slew of other things with me. My husband works M-F, so he is gone from 7:30am-5:30pm. I work from home on Tuesdays and Thursdays, so I arrange to have sitters available for Kiira and my mom watches the other 2 girls. Kiira takes a morning nap, eats, plays, and then back to sleep for a late morning nap. After lunch, the girls go down for a nap or rest time, and we begin dressing changes when Kiira wakes up from her late morning nap. It’s a bit of a chaotic time, because I try to clean up from lunch, cut bandages, pump milk, and get the girls down for nap all before Kiira wakes up. If I’m lucky, I get a quick bite to eat too. I also coordinate to have someone at our house every day to help me with bandages. I’m very fortunate to have family who lives close by or a nurse who comes on other days. Cutting bandages takes about 10 minutes and then the actual bandage time still ranges between 60-120 minutes depending on Kiira’s mood. If she gets a bath, we add another 30 minutes and a ton of anxiety to my day, because it’s scary to have her so exposed at one time and wet, active babies are slippery. When we bathe Kiira, she sits in an infant tub with a blanket under her. We sponge bathe her with water and mild soap since she has no open wounds (if she did have wounds, it’s recommended that we add bleach or salt to the water to kill bacteria). We then carefully pick her up and lay her on a soft towel on her changing table and pat her dry. I lather her body with Aquaphor since her skin gets so dry from the bath. We then remove one bandage at a time and start our process.

After bandages are complete, diaper is clean, and skin is covered in Vaseline or Aquaphor, and she is dressed, Kiira gets some play time and then takes another nap. In the meantime, the other girls wake up and eat snacks and play while I pump milk again and then I may get a few minutes to work or clean up around the house before it’s time to feed Kiira and then feed the kids dinner. After dinner, it’s time to clean up again, give the kids a bath, get them ready for bed (about a 60 minute process), and they go to bed around 8pm. Then we feed Kiira and put her to bed and she is usually asleep around 8:30-9pm. I finally get a few moments where I either research EB, Bone Marrow Transplants, etc. while I pump milk, watch TV, and eat my dinner–mom’s definitely know how to multi-task! I try to be in bed around 10pm, but it doesn’t always happen. Then we begin the day again…

Kiira is still wearing soft clothing and we use disposable diapers with a soft cotton pad that we put along the edge of her leg. We don’t wipe–we dab with alcohol-free wipes, and we cover her in A&D from her waist to the top of her bandages (which end below the knee) after every diaper change. We still hold her mostly on a blanket and lay her down on sheepskin pads in her swing or in her bed. With her very padded hands, we do let her bat at toys on the playmat and she constantly tries to chew her fingers. She has also been drooling, so I’m guessing some teeth are on their way (although I know it can still take months for them to actually appear). Her gums are lined with white, loose skin where blisters have popped from her chewing on her hands. It doesn’t seem to bother her though and she still eats from a bottle and is gaining weight.

So I apologize if I haven’t been able to get thank you cards out to so many of you who have sent things for Kiira, or reply back to messages in a timely manner. I do try to read everything right away, but so often, I get called away by one child or another who needs their mommy. I appreciate the gifts, supplies, donations, and prayers more than I can ever express. I know everyone has a busy life, but thank you for taking time out of your day to love on our family. May God bless you!


2 Responses to A day in our life

  1. Kaija Kiser says:

    I love you all! Continuing to pray for complete healing and for your faith and trust in God to keep you all close to Him. May God help you in all the decisions you have facing you and open doors as you go forward. Love you always, Mom

  2. I just want to tell you how beautiful your little girl is she sure is precious 🙂 I used to think that I had it bad being a single mom of 3, putting myself through nursing school and graduating in 2008 only to work for 3 yrs and in 2011 I was one of the many nurses at the hospital I was employed at to be only laid off yeah I collected unemployment for the 2 yrs but the town I live in is just simply backwards no jobs and if u have one be thankful bc you have it only bc you know people, I drowned in my sorrow for a while, pounded the pavement looking for any job I didn’t care what it was and yet still today 4yrs later I am desolate struggling each and every day to survive, it really sucks I gotta tell you and then I see this story about a little angel with the worst disease possible and the poor family who has to live with this everyday & so I look at myself in the mirror and say to myself Jackie are you serious you are healthy and so are your children so I would like to apologize to you for being so selfish to think that my issues I have to live with on a daily basis are way worse then anyone’s problems, I am so sorry, your baby doesn’t deserve this and your family does not as well but I will put my selfishness aside and I will prey to god that everything you are asking us for prayers for are answered I really do hope you get the ultimate miracle bc they do happen and I will keep u in my thoughts and prayers God Bless you all ♡

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