Kiira seems to respond really well to music. In the midst of crying, I turn on some music and she instantly calms down. It is helpful during bandage changes because I can sing her a song or put on her music, and the calming effect allows me to change her bandages more quickly. My husband and I have always enjoyed music as well (if only we had musical talent ourselves!), but there is one song that now affects me like no other.
When you have a baby, you hear Brahms’ lullaby every time a mom moves from labor and delivery to the recovery floor. I think the intention is to celebrate the baby that goes with the mom, but in my situation, Kiira went to the NICU, not to the room with me, where she belonged. I had to hear this song all through the night and day, and I would get so angry about it. What about all the babies in the NICU?What about the moms who didn’t get to bring home a baby at all? Thanks for the constant reminder that other people are having babies, most of which are healthy and get to stay with their mom to do skin to skin or breastfeeding or just cuddle them through the night. I still have yet to truly cuddle Kiira and she is nearly 7 months old!
I was visiting a newborn at the hospital where Kiira was born and it felt oddly emotional. The feelings of anticipation and excitement of having a baby as we walked in that fateful day in October to get induced, to the feelings of fear, extreme sorrow, and anger about not bringing home our baby girl when we left, flooded my mind. And then I heard the song, the dreaded lullaby. I’m beyond overjoyed at the new birth in our family, but that song. Ugh. I feel for the new moms who have to hear it tonight while they lay empty handed and I wonder if they will hate the song as much as I do.
We were sent a cd with children’s songs from a sweet woman who puts them together for sick children. I think it’s such a wonderful ministry because so many children love music. I hope to find a song or playlist to use during Kiira’s upcoming hospital stay that brings her comfort and joy.
Kiira was approved by Kaiser and the BMT panel, so we are full speed ahead. The donor, a 48 year old woman from Europe, is an 8 of 8 match (markers they look for in the blood cells–the better the match, the less likely Kiira will reject it) and has been contacted. We are waiting for her to complete her physical exam, but estimate a date to arrive in Minnesota on May 25, which means we need to leave in a week to make the long drive from California.
Usually I am a stress case, but I feel at peace about this. God has opened so many doors for us since December 30th when Kiira got assigned a hematologist who believed a BMT could help her. We have approvals, a complete match donor, a potential apartment and someone offered us a couch, an accepted offer on our house, my nephew was born before we leave, and so many other little things, have lined up perfectly. None of it is my doing–God has his hand on our family and I see the amazing ways in which He is working.
That’s not to say that I’m “excited” about this trip. I mean who wants to leave their home, family and friends to live in a place where they have to put their child through something far worse than they’ve ever had to endure themselves? Not me! I didn’t sign up my daughter for EB and I’m not looking forward to putting Kiira through an extreme experimental treatment–I am looking forward to getting it over with so we can get back home with what we hope is a healthier baby.
While we wait to go, we have a slight issue with the gtube. It’s common, but Kiira has granulation tissue forming around the site, so we have to treat it with a steroid cream to remove it. Plus, despite Kiira’s chubby cheeks, she has been falling down the weight charts from 50% to less than 15%. Though this happens to many kids, EB kids never seem to catch up again because healing requires so many calories. I haven’t been overly concerned since she is happy and doesn’t seem lethargic or anything, but Kiira’s GI doctor said to get her to gain more weight do she will be healthy and strong to endure the BMT. We have to increase her intake by about 11-15oz/day, which means extra tube feelings. I’ve had to use the tube some when her mouth causes too much pain to eat, but we don’t use it regularly, so that will be something to get used to.
Kiira has been active–rolling all around the house and just barely starting to scoot backwards. She is also eating rice cereal now and loves it! She still kicks as much and as fast as possible, so though she gets no time on her feet, she is keeping her leg muscles active! We also give her more freedom with her hands now so she can grab toys and of course she tries to pull everything to her mouth.
For now, we are just waiting for our final arrival date, packing up our house, and starting to say our goodbyes since we are leaving on May 19th.
- The donor’s physical goes well and they’re able to donate as soon as possible
- Kaiser approves our housing and people have furniture to temporarily donate or sell us for the several months we are there.
- We all stay healthy as Kiira will soon go through chemo and lose her immune system
- Kiira’s BMT is successful–she recovers quickly, has 100% engraftment and it cures her EB so that she can live out a normal life
- Our family can feel daily rejuvenation and peace so that the stress of going through all of this doesn’t tear us down.