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Sunday, June 5, 2011

The Week Ahead

We are grateful for the prayers of so many and continue to ask for you to pray for Hazel and Jude. We have an appointment at the pulmonologist this Friday and will repeat the sleep study for Jude sometime over the weekend (assuming we can get the equipment). We are praying that his lungs have gotten stronger over the past month and that he will be done with the oxygen completely. Wouldn't that be amazing? It would be so freeing! The doctor called us with his electrolyte results already and decided that even though things look good, she doesn't want to wean him off the meds until after he's done with the oxygen. Boo. Oh well. Hopefully it will all be done within a couple of months. (As a side note: Lung strength often correlates with growth, and since Jude's growth hasn't been outstanding over the past month, we're not sure how much stronger his lungs got.) We are also praying that both of their lungs are strong enough to not need breathing treatments anymore (they are very time consuming and Jude hates them).

Also, the kids still don't eat great and yesterday was a VERY challenging day. This may sound trite, but we have tickets to a U2 concert in less than 2 weeks that we've been looking forward to going to for a year and a half. If the kids aren't eating like halfway normal babies, 1 of us won't be able to go. We would REALLY like to go together, but the kids can't be left with anyone with the way they are right now. It seems like the medicine worked for 2 days and then stopped working as well. I don't think that's possible, but that's what it seems like. Maybe we still haven't found the right medicine. Who knows at this point. It's beyond frustrating. We pray everyday for a miracle of healing, that all acid, pain, gas, discomfort, and fear will be removed so that they can be comfortable, eating will be pleasurable, and we can have more freedom.

1 comment:

Anonymous said...

The old NICU nurse in me says... mama & daddy need to get out! Get a couple of friends to tag team the babies and make your escape. A couple of whacked out feedings are not going to hurt the kids... they might surprise you and eat for someone else because it's a new adventure. Jude & Hazel will pick up on your stress, frustration, and exhaustion and may be more picky because of it. It's OKAY for you to make a break for it and take a break... you BOTH DESERVE IT! I wish we lived closer and could give you a break.

Love to you all!
Susie Ford