Tuesday, April 23, 2013

Birthday Pics

Whew...glad to have gotten those on here and out of the way!

I knew I would forget something last week when I blogged...Remember a few weeks ago when I posted about voting for our Palliative Care team to win a 10k grant?  Well...THEY WON!  Thank you all for voting!

On to a special gift...
Remember before we had Battley we literally had:
Adam's bassinet
2 blankets
1 "woobie"
2 gowns
1 hat

This girl needs another room to hold all her stuff now.  We have been so blessed by all our friends and family and even strangers helping us collect all the things she needs...and more!

I received an email from Kaity a week before B's first birthday.  She reads our blog and wanted to make a quilt for Battley.  I am so touched by her kindness...I'm a big mess of emotions now though so you will have to read for yourself.  I will start crying like a baby if I tell the story.

Here is B this morning on her quilt from Kaity:
We love it!


Wednesday, April 17, 2013

So much info I can't come up with a title

So much to get to...hope I don't forget anything!

We lost the cord to our camera, and I can't get pics from her birthday party until we find it.

Here are a few pics from lately until we can find it:

B had her vision checked today.  We didn't have a vision or hearing test when she was born so it was about time we got around to that.  Her eyes look "great" and "healthy"!  Whew...I thought everything was good, but it sure does have a nice ring to hear that something is "normal"!

She is super sensitive to heat and light.  I found her a cute pair of sunglasses in Target a few weeks ago.  When I put them on her...whoosh...those eyes opened right up...she loved them!  Then my brain kicked in and decided to see what sunglasses were actually recommended since she liked them so much.  These actually have the right UV ratings for what she needs...approved by doc today...yay!

PT, OT, and ST are all going well!  B and I are learning so much and she is showing progress in all areas!

Hmmm...what else??  Oh yeah...Battley Cate is going to be a big sister later this year!!  We are very excited.  I know what everyone wants to ask so I'll just answer it now...

We are not concerned at all about another chromosome abnormality.  There is no greater chance of us having another child with one than anyone else.  We have faith that everything will work out just as it has before.  I am considered high risk and will have a test (non invasive) done with the maternal fetal specialist in a few weeks.  Everyone who has been down this path is considered high risk from here on out apparently.  Of course we would love your prayers for this new baby!  I think it's a girl...Adam says boy!  We have had 2 sonograms to date and everything is good.

So...this brings up some funny business.  As some of you have witnessed first hand, people used to ask about B all the time with her ng tube.  Now that we don't have it everyone asks the usual baby question.  EVERY SINGLE TIME..." old is she?"  When I say "ONE" the next question is ALWAYS "Aw...was she a preemie?"  So I'll admit that sometimes I say "no" and keep walking.  I'm not trying to be rude, but I haven't gotten my story down to a short enough length for some circumstances.  Sometimes I tell B's story and sometimes I just hand folks a card with our blog info so they can read for themselves. I am with a one year old who is the size of a 3 month old (11lb-8oz last night) and looking pretty pregnant already!  It makes for some funny stares and let me just tell you...folks are NOT scared to ask whatever they are thinking!  If there is an opportunity to have some fun...count me in!  So...I've got my friends working on elevator stories for when I get asked about having 2 babies so close together.  Here are a few examples:

* They are twins...she (Battley) just came a little early.
* We are shooting for 20, so we have to pack them in close together!

Now on to feedings...I probably will not be able to put into words what kind of a change has happened since I blogged last.  You know it used to take HOURS to feed B before her's what I did all day long.  Well...I knew about another feeding method that doesn't use a pump, but I was scared to try it because it is so drastically different.  A few Fridays ago I just decided to go for it and see what happened.  IT WORKED!  We have been doing this ever since then...2 weeks now I think.  Here is how it works:

*connect a line to her mic key button (you use this even with the pump; it's about 12 inches long)
* connect a large syringe to the end of the line without the plunger in it
* pour the milk in the syringe and gravity moves it into her stomach as fast as she can handle's almost impossible to overfeed this way b/c without pushing milk into the stomach it just goes at its own pace and won't stretch her stomach out beyond where it should go

So now let me tell you how long this takes....

10 MINUTES!!!!!!!!!!

And without spitting up there are never any problems!  It's been a life changer...literally!

We have come so far!  Thank you all for your continued prayers!  I will do my best to post about a special gift she received before this weekend.


Friday, April 5, 2013

One Year Stats

I'm behind...what's new!  

March 22, 2013 Battley's Stats:
* 11lb-2oz
* Height we don't know because it's different each time she is measured!
* wears some size 3months and all 6months in pajamas...she has very long legs and feet
* wears size 2 diapers
* eats 130mL 4 times a day using the pump (7am, 11am, 3pm, and 7pm)
* medicines: Prilosec for reflux and a very small dose of Phenobarbital
* has had 2 professional haircuts to date
* loves music, bath time, snuggling, sleeping in, therapy (except tummy time), and is the happiest baby ever

The Tuesday after her birthday she got her first tooth!  She loves it.  She keeps pushing her tongue over it trying to figure out what in the world it is.

Hmmm...what else?  We had a wonderful Easter.  Battley looked so adorable in her dress.  The Easter bunny brought her a new tooth brush among other things!  It was a great day to celebrate Jesus' life.

I need to get Adam to show me where the camera cord is so that I can upload pics from her birthday and Easter to the blog.

Post Surgery Update:
The gtube works really well!  The new pump is wonderful.  Her feedings are now taking about 45 minutes each.  There is another way to feed her without using a pump.  I use this method when I give her water and juice (prune...yum!) in the afternoons.  You hold a large syringe without the plunger upside down and attach it to her gtube using a 12" line.  Then you just pour what you are giving in the syringe and gravity does the work.   It is really the best way because it is so fast and you can't really over feed doing this because gravity won't let you.  We will transition to this feeding method over the next few weeks.  This means it will take approx 15-20 mins to feed her each time.  What a change!  This gtube has allowed us so much more time to play and do other stuff.

Just FYI...she has a Kimberly Clark Mic Key.

About the Nissen...You all know we had mixed feelings about doing this.  We left it up to God to let us know which was the right decision.  Since we never felt like it was not the right thing to do, we did it.  I cannot accurately put into words the amazing effect this has had on Battley's life...and ours!  I am SO thankful that we did this.  They basically wrapped the top of her stomach tighter around the esophagus (okay now my nurse friends may need to correct me here) to prevent her from spitting up or throwing up.

Battley used to spit up each time she strained to go to the was almost every time and up to 4-6 times a day.  Lots of T18 kiddos have issues with this any many elect the same surgery.  Because she did this we could not ever leave her unattended for a second...I'm talking we were scared to walk into another room to grab something and run right back.  We lived with a bulb syringe no more than arms length away at all times.  I've said I would be more likely to leave the house without a diaper instead of leaving the syringe.  The possibility was that she would choke on her spit up and aspirate.  It was also very painful for her and many times we had to give her oxygen after she spit up because she would turn colors.  We are talking very serious.

Well...she has not spit up one time since the surgery!  It's literally a whole new way of living!  She is more comfortable, we are more comfortable, and it was absolutely the right thing to do for her!  Thank you Lord for leading us down this path.  It sure was a scary one, but it was so worth it!

More later when I can get to those pics