Sunday, September 30, 2012

Thursday, September 27, 2012

Baby girl updates

Wednesday:  Kyleigh got to eat today!!! She loved every drop. Plan is to start slow and increase as she tolerates

Prayers please for me this time. Having complications. The e.r. told me to wait til a.m.. to see doc wanted to do. Now its morning and things are considerably worse.
Thursday:  from mom: Keep Brittany Weaver Hartman in your prayers, her incision came open last night. She is in the OR right now to close it up.

Well they put humpty back together again. Not my favorite day.. kyleigh is doing fine. She has been able to get all her bottles!

Friday:  We are increasing her feedings... hoping her tummy will move a little faster... she gets 20 ml or 2/3 oz. Per feeding. 

She's up to 25 mL's per feeding, and if all goes well she'll hit the one oz mark at midnight!!! 

These are a few days old, but i'm way behind getting things up.  i can't get on blogger from our tablet, and Trav's had the laptop to do school papers. So sorry.

The plan is to increase her feedings today and Friday, and probably be up to full feeds on Saturday if all goes according to plan.  Her x rays are good so far and labs are great.  We got her belly moving (that's the nice way of saying it) because the barium seemed to be holding things up. Hopefully this solves our belly problem... if not we might need to figure that out as well.

if you want to visit call/text one of us, so we can TRY to avoid having a ton of people at the same time. With only one visitor coming back at a time, it can take awhile.  Please only visit if you're healthy and over 18.  

Wednesday, September 26, 2012

Sunday, September 23, 2012

Kyleigh day 4

Pretty much everyday in the nicu has its good moments and bad moments.  Her morning x ray showed the pneumatosis was a little worse than yesterday, but not as bad as Friday. She has more blood in her belly than yesterday too.  They sent it off to see if it's still my blood or if it's hers... most people vote it's probably hers.  They started zantac in case, which seems a really wise move in case there's any slight upper  gi bleeding.  Her blood levels are good, her h/h are going up, if she had any signifcant bleeding, they'd be going down.  The docs are slightly baffled because she acts so well... But the plan is to play it safe and stay w/ the 7 days of antibiotics and no food.  They're not resetting our 7 days quite yet, they'll see what tomorrows x-ray says first.  She's fiesty and strong and adorable and we can't wait to bring her home.

Saturday, September 22, 2012

Little sweetie is doing pretty well.  We'll be here at least another 7-10 days, unfortunately. Her belly needs to rest from the infection and irritation before she can eat again. She's getting all her nutrition through an i.v.   She still has a tube in her nose that's draining all the dried blood from her belly... we're hoping the drainage stops soon and that can get that out.  Hopefully its uphill from here...  what a day.

Friday, September 21, 2012

Kyleigh is being admitted to the nicu for a possible serious bowel infection. Please pray.

Wednesday, September 19, 2012

Only a few more hours...

Guess who isn't sleeping well tonight?!

Watch for updates, we'll get them up as soon as we can! 

Tuesday, September 18, 2012

A very pregnant woman's guide to decision making.

Being that I'm new at this level of pregnantness, I figured I'd share some observations to common dilemmas pregnant women face.

Problem 1: Dropped something on the floor?   Question: Do I need it?   Answer: Yes.  Question: Do I really need it?  Yes.  Can I pick it up with my foot?  (Always worth a try)... No?  Can it be kicked out of the way? No?!   Is it REALLY a tripping hazard?  Yes.... Can someone else do it for me???  NO?  Then I really probably don't need it anyway.

Problem 2:  Need to go to the bathroom...   Question:  Right now?  Answer: (Always) YES. Now.  You can either go now, or run to the bathroom in approximately 2 minutes.  Go now, pregnant people aren't cute when they run... or waddle.

Problem 3: Baby always wakes up when i try to go to bed... Every.single.time.  Solution: About an hour before bed, once little man is asleep, lay down for about ten minutes... Really still.  Baby gets up, has her miniature dance party, and is asleep by the time you really wanted to go to bed (which was actually about 3 hours ago, but lets be realistic here.)


40 more hours....

This sums it up.

So, I've been trying not to post a downer blog for awhile, but here it is. (A big TY to my friend Tracy for chatting with me last night and trying to help find ways get make things better... i really appreciate it.)

Another mom blogger said it way better than i can, so here's an excerpt.  Her daughter has different challenges than Micah, but you get the idea.  

So, I put Harlie in the car and we go to her Daisy meeting.  I get her out of the car and one of the moms happens to be in the parking lot getting something from her car.  She comes over and says hello and asks me how I'm doing.  And I started to cry.  Ugh.  I didn't want to.  But, I was just so overcome with sadness for Harlie.  For how much she has to deal with.  For how much we have to deal with. For how incredibly hard it is to do normal things.  I can't tell you the effort that goes behind everything we do!  And the drooling.  It just makes everything THAT much more difficult.

It's the proverbial straw.  We've handled and dealt with so much, but it's the drooling that's going to push us over the edge.  But, what are we going to do?  Stop dealing with it?  Well, that's not an option.  Tonight one of the girls sat next to Harlie and squealed, "Ewww!" when she drooled.  I know.  I get it, sweetheart.  It's gross.  And I don't blame you for thinking that.  But she can't help it.  And it breaks my heart.  Then they started to play duck, duck, goose.  Not exactly the best game for a kid who can't talk or run.  But, she didn't care.  And she did it.  She didn't sit in the right place when her turn was over.  And one of the girls said, "That's okay, Harlie, you can sit wherever you want to."  And I wanted to cry all over again.

The reality of knowing that there will be no true break (from heart break or the physical demands) in the future is exhausting in itself.  No weekend away would ever be able to touch the heaviness of all that's involved with a child like Harlie.  We've left the medically fragile intensity of years past and entered the emotionally difficult phase.  With medical oddities and challenges thrown in.  And when I find myself asking God to make things easier for us, I take it back.  Because I know it won't ever be easier.  As long as she's here, she's going to have challenges to deal with to try to overcome, or accept.  So I tell God, never mind.  Just give us the strength, okay?

Yep, that pretty well sums it up.

Monday, September 17, 2012

A case of the giggles to rival Anderson Cooper :)


We got a new app for our Nook Color (thank you grandma and grandpa for the birthday gift card!) We've been wanting to get a few things to occupy him when baby sister comes.  Needless to say, this one was a winner (it's "Monkey Lunchbox Preschool").  Unfortunately, the funniest thing that happens is when you get something wrong... So, not a lot of learning going on :)  Cute app though, and very age appropriate.  This morning it wasn't nearly as funny, but still entertaining, so i'm glad i got the video when i did!  if you need a laugh, you've come to the right place!

And if you don't get the Anderson Cooper reference, here it is... i've watched it probably ten times, and laugh every.single.time! 
Baby sister seems to be doing fine and planning on hanging in there til Thursday.  We're about as ready as we're going to get, i suppose... Things aren't coming together perfectly smoothly, but oh well.  As i told someone yesterday.. things have been crazy and unpredictable for the last 3 years, why stop now?  
We SOOOO appreciate all the prayers and joy w/ this baby... We didn't get a "fun, easy" pregnancy last time, and we're having such a good time around this time.  A couple in our church have been especially funny, as they have two little ones and  know exactly what's coming!  :)  We also are so grateful for all the yummy food that's showed up on our doorstep over the last few days... Our fridge and freezer are full... Such a blessing!  

Mitochondrial Disease Awareness Week

Mitochondrial Disease Awareness Week. About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. Mitochondrial disease is progressive and has no cure. More children die from mito than cancer, and yet it doesn't have nearly the same kind of support or awareness. Mitochondria are the energy centers of cells, without enough energy to power the body, organ systems begin to fail. A number of children who have mito need feeding tubes and so I know far too many children with this disease.
We're supporting our Mito friends this week! 

Tuesday, September 11, 2012

Black Pine Animal Sanctuary

For those of you from the area, you should visit Black Pine Sanctuary... it's pretty neat, and a bit different than your typical zoo.   The animals are up close and personal, their chimp was super friendly and Micah couldn't be more thrilled and one of the birds talks (and mutters funny things if you listen closely enough...) We had a good time.

Friday, September 7, 2012

Photo Card

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Big ornery boy!

Well, well, well... Mr. Micah has grown a TON! He's in the 85th percentile in height, and about 60th for weight. Big stuff! No wonder lots of people assume he's older. So nice to hear a doctor say that i've got a healthy kiddo! :)
  Here's the ornery boy. :)