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Monthly Archives: October 2014
Today Kiira is 2 weeks old! It’s been such a whirlwind, but we are still enjoying having Kiira home. The girls always want to touch her and I hate telling them no or “just touch her blanket”. They have both helped feed her though and those moments are so sweet. We are worried the girls will despise Kiira because of the extra attention she requires, the lack of attention they get from me, and constantly having to tell them to be quiet or stop fighting in front of Kiira. It’s one thing to deal with a sick child for a few days, but it’s another knowing this will likely be years, or even a lifetime, of extra care. It’s really hard to balance their needs and we ask the girls to be patient with us, as though a 2 and 4 year old can understand what that means. Miia just asked me when she can play soccer again. I want to get back to our fun activities but it seems impossible right now.
Jason and I keep trying to break records on dressing changes. As much as we want to help Kiira, it’s becoming such a chore we dread. Trying to break records gives us something to work toward. We keep her room calm, give her a bottle, and use music or the sleep sheep to help soothe Kiira. When she gets frantic, it’s so difficult to wrap her clenched fingers. At least we only have 2 more days where we have to do it twice a day. We are hoping tomorrow the dermatologist in Walnut Creek will tell us we don’t have to do as much, but I see pictures of kids much older than Kiira who are still bandaged. It just breaks my heart.
We went a few days with no blisters, but today we had to pop one on her chest and she has some on her lips, which were healing so well. I’ve been trying to nurse her again, and suspect maybe that caused some damage. So, continuing with bottles for now. We are learning how much we can handle her without causing her more injury. At least I can hold her some and give her kisses–things I didn’t know if I could do a week ago.
We also had Kiira do some tummy time and the crazy girl rolled from her front to back every time we put her on her tummy. She also holds her head up for extended periods of time. She is showing us her strength already!
Despite some frustrations, finding an online support group has been really encouraging. The people who deal with EB and have reached out to me to send free supplies and words of encouragement have brought me some relief that some days I feel like I can’t find for myself.
I can’t express how much we appreciate the comments of encouragement, the meals and help with our girls. We are so lucky to have such wonderful family and friends who want to show Kiira their love!
Today we found out Kiira’s biopsy results show Dystrophic EB. We still don’t know the subtype until we get the genetic test back in a few weeks, but at least we have an idea of what we are dealing with.
Kiira is still healing well and we haven’t seen any new blisters so we are hoping for a mild case.
Yesterday we welcomed home Kiira. We were so excited to finally bring her home. Miia seemed indifferent to her and Aliisa is very curious and asks where she can touch the baby, but misses being the baby herself. However, it was so nice for us to be together as a family.
Kiira had a cranky evening after we did her dressing changes but then she slept for over 6 hours through the night, until I woke her up to feed her. I can only hope that long nights of sleep are in the cards for us, but we’ll see.
This is morning the girls crawled in bed with us and watched over Kiira as she slept. I just love having us all together!
Dressing changes were tough this morning. Our older girls were fighting, which seemed to make Kiira, and us, irritable so they took much longer than we hoped. I’m sure it will get easier as it becomes a part of our routine.
Kiira likes to take long naps after we are done, so it gives us some time for the other girls, which they desperately need.
We have an appointment with her pediatrician tomorrow, but overall Kiira is looking good. Her foot wounds are finally healing with the antibiotics and no new ones have appeared. I truly believe the prayers have been helping so please continue to pray for complete healing and for our girls to have patience with us as we try to juggle the 3 girls’ needs.
Just an FYI, if you donate to Caring Bridge, the funds are going to Caring Bridge, not Kiira, which is good, but we will be setting up a donation site for Kiira soon or donate to sites like DEBRA.org in support of EB research. If you know of any medical supply places or a way to get medical supplies donated to Kiira, please let us know, as we are still battling to get her supplies covered. Thank you!!
The past week has been full of ups and downs. When we went in to have Kiira we fully expected to bring her home within a day or two. I was induced 8 days late and spent the next 23 hours anticipating the birth of a healthy baby girl. We still hadn’t decided on a name but we wrote them on the board in the hospital room and crossed them off one by one until we were left with Kiira Faith. Perhaps that was our first sign of divine intervention.
Kiira entered this world with a bloody lip and nipple, missing skin on her ankle and on her chest. We had no idea what was going on. The nurses wanted a closer look and the NICU doctor was called. She speculated a condition, but wouldn’t tell us until a dermatologist could confirm the next day. However, Google made it easy to figure out what she speculated.
After seeing her “owies”, as the girls say, our hearts sunk. She was taken to the NICU within the hour and she was treated like a typical NICU patient. They did a heal stick and an IV, and we didn’t know to wrap her up, so all of those actions caused more damage to Kiira.
The day after she was born, Kiira was seen by a dermatologist who told us he thought she had junctional EB since we saw signs of blistering in her mouth. After researching the disease we feared we would have up to 2 difficult years with Kiira–her short life would be full of pain and hospital stays, battling conditions like malnutrition and the inability to breathe. I was devastated.
We we spent the next few days learning how to best bandage her to keep her from hurting herself further. We, including every nurse treating Kiira, watched a video and read an instruction manual on Stanford’s website on how to dress EB wounds. At first, the dressings took us nearly all day, but a week later and we are under 2 hours.
Initially we were popping multiple blisters, but as the week progressed we saw fewer new ones and old ones were healing, which was so encouraging. We were also updated by the dermatologist that after showing pictures to other pediatric dermatologists in the Bay Area, they think she has EB simplex. We were so relieved– with her healing progress and a possible better diagnosis that gives us much more hope, we felt like we could be dealing with a very mild case. We were seeing the prayers answered!
Then we were told that supplies to heal her wounds were not covered by our insurance. We had read that some people spend $10k/mo on wound care. While supplies shouldn’t be that much for us, we knew it would be extremely costly. We also thought we might get an in-home nurse to help us, but that’s not covered either. It was taking 4 of us hours to do the dressings, but now that Jason and I can do it in less than 2 hours, if someone else holds a pacifier or bottle for Kiira to keep her calm, we feel better about bringing her home.
We we were also planning to bring Kiira home today and everyone was on board with that, until the dr came in on Monday night to tell us she has a moderate infection on her feet. We were to give her topical antibiotics twice a day, which means changing the dressings on her feet twice a day. If it didn’t improve, we would have to do IV antibiotics, which would keep her from sepsis, but create another wound. 9 days ago, I never thought I’d be making such tough decisions. We prayed a lot and God answered our prayers so far. This morning we did her dressings and the feet were looking better and the dr thinks we will be able to avoid the IV, but they will check them again tomorrow. Later this afternoon, the infection specialist came in and looked at her feet. He felt the infection only requires topical antibiotics and we can probably welcome Kiira home tomorrow!
So so the next steps are to get her home, figure out how to get supplies, and take her to Walnut Creek on Monday to see the pediatric dermatologist who worked with Stanford.
We we ask for continued prayers that her infection clears, for total healing, energy for Jason and I to juggle our 3 girls, work, and life in general, and a way to provide the supplies to care for Kiira.
After 23 hours of labor, Kiira Faith was born on 10/12/14 at 6:14 pm, weighing 8 lb 3 oz and 20.5″ long. Immediately we noticed blisters on her body and we were told she would need to go the NICU. The next day we learned Kiira has a genetic skin disorder called Epidermolysis Bullosa. It manifests itself as blisters on the skin wherever there is too much friction. She will have it for life but with proper care and treating her gently, we can avoid the blistering as much as possible. She has a lot of blisters now because of the birth so they are keeping her wrapped up like a burn victim while she heals. Once she heals we can bring her home. They are doing genetic testing to figure out which kind and how to proceed with care based on which type but that takes 4-8 weeks and then we will meet with Stanford specialists.
We have been very busy with Kiira as we are learning to tend her wounds, even the staff is learning as we go. The time she will be here is unknown as we take each day at a time. She has no infection so we are thrilled about that but new blisters appear every few hours. Dressing the wounds takes hours and will be a daily task, in addition to feeding and caring for a typical newborn. Kiira is incredible tho– she hardly cries and sleeps thru most of it. However, we’ve read its a life of pain, however long that life might be.
We had no clue what this disease was and no one in our families had it that we are aware of, but one or both of us are carriers. We are devastated, but the joy of having Kiira look at me and seeing her sweet disposition is comforting.
Please keep Kiira in your prayers–pray for healing, that she won’t be in pain, and for strength to endure this every day.