Saturday, August 11, 2012

Hello Friends,

We're possibly looking at the middle of next week to bring Neelstar home.  She's doing so much better with her pacifier and bottle feedings.  The last 3 times I was present for her bottle feedings, she took them like a champ!  She's also using her pacifier to soothe herself now.  Tonight, she was actually getting upset when she didn't have the pacifier.  Serious progress for a baby who has oral aversion!

I was very glad to meet the speech therapist yesterday (Thursday).  She walked me through the steps for giving Neely the pacifier and then the bottle.  Before all this, I never realized how important something like the sucking reflex is for a baby's development.  These incredibly "simple" things all affect how the brain gets mapped.  She said that if the oral aversion isn't dealt with early on, a child can have long lasting issues.  Babies learn so much by putting things in their mouths.  She also said that oral aversion in a baby could be about more than just associating it with a bad previous experience (the tube down her throat).  In "short-gut" babies, it might actually be painful when digestive parts start moving in anticipation of food.  More stuff, but I won't bore you with it.

Her rash is looking better.  It's pretty cool that my idea for dealing with the rash around her stoma has been so well-received.  The nurses think it's a great idea and it seems to be working for Neely.  Basically, since they had to take the bag off of her stoma, they were putting a preemie diaper against the stoma to catch the poop coming out.  This wasn't working so great - if the preemie diaper wasn't changed out often, it would just hold the poop against the skin.  I thought it might work better if you cut a hole in the middle of half a preemie diaper, put that against her skin, and covered that with another half of a preemie diaper.  It's worked great so far, but you still have to try to change it at least once an hour.  Neely's had a great couple of nurses the past 2 or 3 days, Jeri and Brandy (probably misspelling those).  They've been awesome at optimizing the process and communicating changes.

For me, the Broviac is the scariest thing.  This is the IV that goes right into her chest.  It's basically her lifeline and it will likely get infected at some point, but I hope that point is not anytime soon.  They'll eventually show us how to change the dressing on this, but I'm terrified.  The doctor is working on finding something a little more secure to cover up this line and we appreciate his efforts.

We meet with the home health nurses and the rep from Coram Infusion again on Monday.  We are all going to learn the Broviac dressing change together, so we are all on the same page when we start to care for Neely at home.  I'm definitely loving how proactive everyone is being.

It was hard leaving Neely tonight.  I'm so happy that she is learning how to use the pacifier, but now that she is using it to soothe herself, I feel bad leaving.  She is starting to flail around with her hands so much more and keeps knocking the paci out and I wish I could be there to put it back in so she can sleep.  She's with Brandy tonight and with Caty tomorrow, so I know she is in good hands ... probably better hands!

I think I finally slept for a few hours last night.  As I mentioned in the last post, these long days are taking a toll on Josh.  He was actually late for work this morning ... he's never late.  He's usually early.  We drove in once from Dallas after watching the Cowboys/Giants game, didn't make it home until 3:30AM, and that boy still made it to work early (probably 6AM at the time).  Anyone who knows him knows he has a strong work ethic and I know he feels awful being late.

I think the long days and the stress is starting to make us a little "short" with each other.  We get into some pretty ridiculous disagreements.  Well, they seem ridiculous now, but don't at the time.  For example, whether Neely can or cannot get on a Jet Ski when she is older.  Right now I'm thinking how blessed we would be if/when that becomes a real argument - like if we could fast forward about 14 years with all this behind us. "Jet Ski" or "no Jet Ski" would be an awesome argument to have.  It's a way better argument than "palliative care" or "transplant", though both have an obvious answer as far as mommy is concerned!

Having a sick child is probably real fertile ground for marital problems.  The stress and the different ways each person deals with the stress is ... stressful.  Must add "don't fight too much with husband" to my to-do list.

Well, it's 2AM ... time to decide whether I should try to sleep or go work on the household stuff that Laney wouldn't let me work on earlier today.  I think my sentences are making less sense, so I'd better stop while I'm ahead.

I miss my Neelycakes.  Wish I was snuggling with her right now.  

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