Wednesday, October 26, 2011

October 25-26, 2011 - Day 24 & 25

4 months, 3 weeks since diagnosis
day #34 of current hospital stay

X-ray is clean. Cultures are clean. Riker continues to be a coughing faucet of mucus but it is not an infection. She is tired and sleeps a lot but her poor body has been though a lot and is healing. Overall, she's doing well. Her x-ray showed that she is retaining a lot of fluid still and that it is putting pressure on her lungs. I didn't need and x-ray to tell me that. She's still up over 2 lbs over what she should be. I know my baby. The good news is that her weight was down today. She was down over a quarter of an ounce from yesterday and over 6 ounces from her largest weight. We're headed in the right direction.

Today they went down on her morphine to begin the weaning process. She seemed to tolerate it well. They will keep her at this dose tomorrow and we will continue to monitor.

Still, the only major issue that remains is getting Riker to eat. She continues to show no interest in a bottle. I have my brother shipping me the sippy that I got for her but I have doubts that will help. I also have my breastfeeding support group looking into syringes and tubes which might just work since she has an obsession with her tubes. In the meantime, the doctors suggested I try to get her interested in solid food as an intro to food. Mind you, Riker has not had any solid foods to speak of. These are exciting times for us and I will try not to be discouraged when she does not enjoy/take the food. Counter intutively, they suggested puffs or teething cookies. The doctor said, "we encourage junk food on this floor." Typically, it's the only first foods they can get BMT patients to eat. Here's hoping.

I have a very ripe banana in my room so I tried rolling it in some crushed cheerios for her. I don't have spoons and I highly doubt she'd be receptive to them at this point. I am trying very hard to make this an enjoyable experience for her. I have heard horror stories of children so sick of the spoon coming at them they they refuse to eat for months. Thankfully, she did enjoy the experience. I don't know if she actually ate any of the banana but it's a start.

Later, I ran over to Whole Foods and picked up some other supplies - puffs and teething biscuits (the least I can do is get her the better ones with less ingredients), an avocado, some whole milk plain yogurt and some dreaded jars of baby food. I made all of Valentine's baby food and I intend to do the same for Riker. Unfortunately, that's just not practical here in the hospital. One jar of sweet potatoes won't hurt :) We'll be out of here shortly and I can make her baby food til my heart's content.

So, we'll see what tomorrow brings. We'll keep offering a bottle and try the sippy or even a regular cup. I will keep offering food both for her to self feed and on a spoon. I will do my best not to push any of these as not to create an aversion. This is the last threshold to overcome before we can leave the hospital. If I have missed anything I can try, ideas are welcome :)


  1. I know it is really naughty, but my 9 month old loves ice cream. Oh, and frosting. Desperate times call for desperate measures...

  2. Another idea to try is oreo cookies. They are great for use instead of teething biscuits and if she isn't interested mom can eat them ;). I smile every day now when I see your posts. I am so happy for you all! <3 I read your posts first every morning and my heart used to drop but my heart sings for joy and praise to our God every day now. I am so happy for you all and that you are on the road to recovery and making leaps and bounds every day now! Hugs and love from the Staytons in OK and our little Ryker (2.5yrs)

  3. I am posting this for Gwen. She emailed me asking me to post this for her because it wouldn't post for her for some reason. I forgot about these things they are similar in look to a pacifier but with a messy bottom from what I remember. Great idea, Gwen.

    There are feeders you can put fruit in, where they can suck on fruit, such as grapes, peaches etc, but won't choke on chunks. They sell them at Toys-R-US. They are called "Sassy Teething Feeder". It might help Riker get interested a little.. I know it helped my baby when she was sick.


  4. You don't know me but I have been following Ryker's blog and you all are in my thoughts and prayers daily. Would you all be able to accept a gift basket of different toddler/baby foods, snacks, sippy cups, etc. if i were to ship one? I don't know if the hospital would even allow it, but please advise. I'd like to help in any small way.

    Terra Campbell
    Olney, MD

  5. That video is so precious. She is a doll....