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 bathroom...it 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

C