Saturday, November 27, 2010

How to sum up?

Things are all starting to blur together lately and I'm having a hard time blogging. I'm going to try to sort this out and sum it up so that it makes sense. So here goes...

Hope is doing okay. She still has blood in her stool and gas in her bowels. Her blood work is looking much better now though. Her platelets and CRP (measure of inflammation) are back to normal. No one appears to know what is going on. One surgeon today was telling us that her bowels could just be taking some time to start working again. Of course in the next sentence he talks about strictures and surgery. He says they need to check her colon. The other surgeon says there's nothing wrong with her colon. Two docs say we shouldn't feed her until there's no more blood in her stool. The nurse practitioner says (and we agree) that you can't keep not feeding her. At some point we're going to make the choice between killing her by testing her gut or killing her by keeping her on IV nutrition and ruining her liver. Aaah! I have a suspicion that if we took 10 doctors outside at the same time and had them look up they would all tell us the sky was a different color. Do I sound frustrated enough? Apparently the doctors are starting to realize this because we have been promised that we will get a meeting next week where everyone sits down together.

Mike and I are really at the point of feeling like we will not let her go through another surgery. If the doctors could all agree on the problem or had some sort of an idea what they would find or how to fix it, we would consider. But that does not appear to be the case. We are considering other options, such as moving her to Seattle, transferring her to Gritman, or bringing her home while still on IV nutrition. I personally feel like we've ridden the hospital train as far as we need to. When she was born we had decided not to intervene. God decided that against all odds she was going to live. If He still wants her alive, He can fix her. I know that everyone is going to have an opinion about what we should do. Please don't share them. I'm not trying to be rude, but no one else is in this spot. We are asking for God's direction here. Please feel free to ask for that with us. He promises in James that " If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you." We'll update when we hear what the group has to say.

On to other news.... Hope is going to need to start out slowly with her feeds and will be starting on something called Neocate. This is a very broken down, hypo-allergenic formula. It's unclear how long it will take to get her going on this or how long she'll need to stay on it. I am still hopeful that I will be able to breastfeed at some point. To that end, I am on a special diet which removes the most common allergens that could be bothering a breastfed baby. I am cutting out dairy, gluten, soy, eggs, and nuts. Yes, that does pretty much leave me with chicken, rice and a few fruits and veggies. The upside is that I expect to be trimming down pretty quickly. :) It will all be worth it if I can nurse my little peanut.

Hope is staying alert for periods of hours at a time. She will stare wide-eyed at anything around her. I mentioned today to the nurse practitioner that I wish I could walk her around the unit and let her see that there's more to the world than her dark, little corner. The nurse practitioner ( I love this woman) has volunteered to bring in a portable oxygen tank for her so that we can do just that. Yay!

As for the other kids and how they're doing... they fell asleep tonight while watching a documentary. These children, who swear they are never tired, couldn't keep their eyes open. They've been sledding, shoveling walks, building snow forts, and in general following the teenage girl we live with everywhere. It's apparently pretty exhausting. We will all be going home together tomorrow. I've been needing a more snow-worthy vehicle, so I will get the truck and drive back on Monday. Should be fun to be out on these roads...

We hope everyone had a wonderful Thanksgiving and is enjoying the start of the Christmas season.


  1. Oh, thank you for the update. I was wondering how things were going. Will keep praying and will also keep opinions to self. :) Although actually I don't have any (I know, shocking, right?) God gave Hope to YOU and you're her parents. You will make the right decisions for her with God's help. Stay safe on the snowy roads.

  2. I can speak to Seattle and how incredible they are...especially Children's. We were there for a long time. I hope the Dr's are istening to you and are taking your input into consideration. It is so frustrating when there are so many people involved with different opionions. You must be exhausted emotionally, physically, spititually, and on and on...May God's strength, peace, and comfort be known by you. I am praying.

  3. Thanks for the update. We are praying for God to show you and the doctors the way for Hope. I can't imagine all you're going through with this roller coaster ride. Be assured that many are caring and praying for all of you. I'll be taking this latest update to the prayer warriors at our church this morning. Praying a good relaxing weekend for you at home with your family, and a safe return to Portland.

  4. Hi Amy and Fam-
    We are still praying for you all the time! We hope you are having a chance to enjoy one another this Thanksgiving time, I am sure it is hard! We love you all so much-
    May God Bless you and Keep you all,
    The Boyds