I'm back in Portland now for the week. So my angel friends are back on duty this week if they can, taking care of my kiddos and keeping my husband in line (j/k). I got to spend all afternoon with Grace. The nurses have moved her back into a crib instead of a warmer and she has a fun little mobile that plays music and she really likes to watch it. They also put a CD player in her crib so she can rock out to lullabyes. After not having seen her for a week and a half my first impression was that she looks really good! Better than when I was here last. She is growing of course. She is about 9 pounds, 10 ounces. They have her on full breast milk now and they are giving it to her bolus instead of continuously. They give her what she wants from a bottle and then what she doesn't take goes down her nose through the feeding tube, so she gets it whether she wants it or not. Finally, I have a child that eats. So today she was wide awake when I got there. She just listened and listened as Mommy told her all about what has been going on and also about Mackenzie and Caleb on Halloween and how Caleb told me to "go bwing Gwacie home." Then she gave me the biggest smile. Then, I got to breastfeed her and after we finally got all her burps out, she laid on Mommy and was out like a light. The skin on her bottom is broken up a bit, we're not sure if it's from chemo poops or just the fact that she poops a lot and sometimes I don't think the nurses get to the diaper changes as fast as I would like, so her bottom is still very red and sore with some blisters. They keep putting barrier creme on but it doesn't seem to help that much I'm afraid.
I brought my cooler full of milk in, sorry if that is TMI (too much information). I have always doubted that I ever have enough milk, but after filling my freezer, our garage freezer, and my neighbor's freezer full of milk(sorry Dan), it is clear that that is not the problem. My kids just really don't like to eat.
Anyhoo, the MRI is scheduled for Monday, to see how the chemo is working. The doctors don't seem to think it is working based on the girth of her abdomen, so we are probably looking at more weeks of chemo (but I am still praying for a miracle and hoping to be back at the Maple Leaf (Doernbecher lingo for surgery) later this week.
Here's Grace staring at her mobile....
BTW, Room 201 is my room # not Grace's. She really doesn't have her own room yet. I think she is still too young for that.
Saturday, November 1, 2008
Room 201
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4 comments:
She is so cute!! I'm glad that she is gaining weight, especially since she is on chemo. Yea! Little triumphs! And good job to you for your diligence in pumping. Grace is very lucky to have you as her mommy! We'll keep praying for her and you all!
Thanks for the update, Jodie. Keep us in mind whenever you need anything. Really.
Mmm, so it's been a while but when Alyssa was a year old she was put on some harsh antibiotics that caused diarrea for a week. THe imbalance & lack of bacteria in her system weakened her, and her diaper rash grew redder and angrier; she would scream and cry when she was changed. The bumps got bigger, some I think started to break and look a little greenish (if I remember right) & infected. It's gross, but I simply share it to give you a heads up - I think it ended up being a bacterial or yeast infection and our pediatrition's on call nurse had us apply a yeast infection cream to kill the bacterial infection, which started making a difference in less than a few days. White diaper cream that is high in Zinc oxide is very helpful for simple sealing & healing of the skin, as I'm sure you already know by now; I prefer Desitin Creamy or anything with 40% zinc. We switched to sensitive whipes at the time, warm wet wash cloth is even milder. Soooo, in case little Gracie experiences any similar symptoms (hopefully not, poor thing!) at least now you have some ideas of what to do!! That is sweet that you got to have some close time with her, and amazing that they seem to be so intune sometimes, huh? Lance has done some similar things, it always makes you wonder how much they sense & understand! I wonder if there's an interesting mobile she could watch while at the hospital? We'll keep prayin' for you!! Hold on and walk with God! Love from Texas.
I have been checking your blog to see an update. Glad to see it. You are so amazing! I am impressed by the amount of courage you have. And I am also impressed by the pumping, that can be so hard sometimes. Awesome job Mom! I also wanted to let you know that we are still thinking of you here in logan, ut and your family and we wish you the best of luck.
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