Thursday, February 28, 2013

49 weeks and surgery update

B and I hit up speech and occupational therapy this morning.  We are home now singing happy birthday and getting ready for surgery tomorrow morning.  

I am not sure exactly what time her surgery will happen.  Amy will probably do a blog post once we are all finished.

Here are our prayer requests:
wisdom for B's doctors and nurses
we are choosing the right procedures for her health and well being long term
skilled hands
anesthesia is uncomplicated and she breathes on her own immediatly
she doesn't have much pain and we can soothe her easily
B will recover quickly from each phase so that we can skip the pediatric ICU and head straight for a room
no complications
God is glorified in everything

Thank you ahead of time for your prayers!  They mean SO much to us!

C

Wednesday, February 27, 2013

Big News

I've kind of left one subject hanging for a few weeks.  We weren't too sure what was going to happen and were just trying to live on faith.  MY JOB.  If you don't know, I am a sales rep.  And if you didn't know that then you didn't know I LOVE MY JOB!  Not many people can say that.  The company I work for is a family owned, Christian led, wonderful place to work.  I worked hard to get this job and really treasure it.

Since Battley was born, my company has allowed me to work from home and do what is possible thinking that I would return to work (let's just call it what it is) when Battley was gone from this Earth.  It was my one thing to look forward to in what we were told would be our darkest time ever.  Obviously we have been blessed beyond our dreams with more time with her.  This business is not a work from home business...it needs a person out there making face to face calls.
 
Battley obviously isn't a candidate for daycare (not that we would ever take her to one if she were) and a nurse is too expensive.  So, the time has come for me to move on to my gig as momma full time.  This is a HUGE leap of faith for us financially.  Going from 2 incomes to 1 with a child who needs lots of medical care and one that will be in college (excuse me while I cry for a few...totally not ready for this) in 4 years is wild.  We have prayed and prayed about this and this is what we feel like is right for us.  So...I was watching tv last week and heard a woman say this...it fits me perfectly: when people ask me what I do from now on...

DOMESTIC GODDESS

I am pretty sure that includes it ALL.  haha!

On a serious note, if you are my customer: keep calling...I'm not gone yet!  I have appreciated your support, business, love, and prayers.  I know my replacement personally and you will LOVE HER!  I do!

I hope that you will all support her in her new role and also support the company that has shown my family so much love and that they truly walk the walk that they talk about!

If you're not my customer and need some carpet for your office or commercial space...I know the perfect company to support you too!  They sell worldwide!

And just for math's sake that is 3 months of family medical leave + 9 months of work from home and do what you can time that = a YEAR of a commitment to my family.  I am in AWE!  How many businesses would do that?

I would be lying if I said that this wasn't hard.  It's very scary for me to leave the working world.  Here I go with that leap of faith thing again!  Of course when you look at the big picture this is all very easy since I get to hang out with someone as great as B!

C

Monday, February 25, 2013

dinner at the table

We ate dinner AT THE TABLE this week!
This is B in the feeder seat at the table.  She liked it for a while and then was too sleepy but yay for another first for us!

B hasn't spit up (with 2 small exceptions) in almost a week!  I read a scary article about Mirilax a few weeks ago and we worked to find something else to take the place of that.  I'm certainly not a "crunchy granola chick" as Adam likes to say, but I would always rather go the natural route before going the medicine route.  We had tried prune juice in the past with not much luck.  I decided to give it another shot last week.  With that and additional water WE HAVE A WINNER!  FINALLY!  Praise the Lord...I am so thankful!

We are still scheduled for surgery on Friday.  

C

Thursday, February 21, 2013

48 weeks

48 weeks today!!

* Therapy is going GREAT!  It's fun for me to learn the "correct" ways to teach B!  These therapists we are working with really know their stuff!

* We have been to the doctor a few times this week and have one more appt to go...here's the scoop so far:

B will have a gtube placed next Friday, March 1st!  She is also going to have the nissen fundoplication.  It's a long story why we chose to go ahead and do this, but we feel pretty comfy with this decision.  While we were at the surgeons office he sent us for an upper GI study.  This was similar to the swallow study B did a few weeks ago.  This time they pushed the barium through her ng tube and watched where it went.  Remember a while back when I was pregnant with B...they never saw a stomach present on the sonogram.  We have just assumed she had one all this time.  Well...I am happy to report that all is "NORMAL" (exact words used by doc) with her GI system!  Woo-hoo!

This surgery will be a 3-5 day stay in the hospital.  I was not expecting that, but we will work it out.

Then we had a consult with the plastic surgeon yesterday about correcting her palette.  It was a great appt.  We will report back in 3 months...B is too small to do anything just yet but is a "good candidate" for having this done!  yay!

* We have been almost 3 days without spit up!  I have been praying about this like crazy and I think the exercise helps too!


Some pics from the past few weeks:

a visit from B's friend:

B with her Meem and Pock (on his 65th bday):

Girls:

This gal is happy all the time...this was at the doc office:
C



Monday, February 18, 2013

47 weeks

B was 47 weeks last Thursday!  We have been busy ladies the past few weeks and obviously the blog has taken a back seat to other stuff.

B's stats for 47 weeks:
* weighs 10lb-15oz (this is not enough weight gain lately due to spitting up)
* wears size 2 diapers and is between 3months and 6months clothing depending on the brand
* has been sleeping in her room in her crib for 2 weeks now...she sleeps very well in there!  She sleeps most nights all night except for one last week when she had a tummy ache
* is ticklish all over
* still loves bath time, rocking, singing, and chatting
* is working so hard in therapy...we started last week!  We go once a week for physical therapy and work on things like flexibility and holding her head up.  Then another day we go for occupational therapy and speech therapy.  Right now in OT we are doing things that are similar to PT and things like reaching for toys, stretching her hands so that they naturally rest in the open position, and such.  Then with speech therapy we are working on pre-feeding things and communication.  It's all super exciting!  They are really teaching me so that we can work on these things at home...more on this below.  Hopefully when we get her gtube done we will have more time for this because right now it's a stretch to fit in all our therapy with feedings.
* laughs and smiles all the time

She has goals in therapy to work on for the next 12 weeks, and then we will measure where she got with them.  One goal is to talk in conversation turns with me 5x in a row.  So I say something and she coos back (or another sound) and so on 5 times.  She can check this off her list already...we have a talker!  She is just like her momma...loves to run that mouth...I love it!  Another goal is to look at Momma when we ask her to 5x.  I think she will get this one quickly too...she has done it this weekend without having to ask her 5x.  Lots of the goals she has are things we do every day but it's nice to have someone helping me!

This week we have our appt with the surgeon who will place her gtube.  It's just a consultation but we are going to have to make a decision about doing this other procedure with it...prayers appreciated!

We also have a consultation with a plastic surgeon about correcting her palette.  I have no idea what to expect.  I've already been warned it is probably more than one surgery.  I'm very hopeful that we have that good ole gut feeling about the right thing to do like we have so far.

Last week we had an appt with her cardiologist.  Long story short: her lungs are still keeping too much blood from shunting the wrong way through her heart.  That is great!  Strange news I did NOT expect to hear: the surgeon has reconsidered and is willing to FIX the hole in her heart...meaning open heart surgery...the surgery we were told no one would ever do (which we always knew we could find someone in another state to do but didn't feel it was right for B).  There is a lot more to this story like the fact that it doesn't necessarily improve her life expectancy or quality of life and could actually make her very sick.  We don't think that we will pursue this at this time because we feel that God has shown us the way and that's not it.  I just wanted to share because my hope and prayers are that this doctor's mind and others may be opened to other Trisomy babies who do need this surgery.  I hope that B has shown that babies with T18 CAN be strong and survive.  I hope that if a chance needs to be given to another that it is.

Thank you for all the help locating the rattle and rings...got them!

C

Monday, February 11, 2013

46 week update

I'm late.  I wouldn't even be blogging today if it weren't for the fact that I need some prayers!

We had our GI appt 2 Fridays ago.  Here's the scoop:
Battley needs a gtube. 
The gtube would be a permanent replacement to her ng tube (in her nose) where she gets all her food.  It is surgically placed on the belly and goes directly into the stomach.  This has nothing to do with us fixing her cleft palette so that she can take food by mouth some day.  That is still in the possible plans.
There is a SMALL chance that she can have this done in a doctor's office (think like having your wisdom teeth out) with an IV and a scope.  The 2 factors that will determine IF this can be done are:
1.  she can't spit up or vomit...well, she does.  all the time.
and 
2.  she's really tiny...this would be done with a scope and B is super tiny

SO

we tried a new medicine (Lactulose...it's a laxitive...to see if we could get her to stop spitting up)...didn't work

The doctor and the GI doc both think B also needs a procedure called a Nissen Fundoplication...I wasn't convinced.  I'll admit that I'm still not 100% convinced but that's another story.

We are FINALLY seeing a surgeon next Tuesday to talk about the procedure.  We are more than ready for this to happen.  I am hopeful that this gtube will do a few things:
1.  STOP her from spitting up.  She normally spits up about once a day but it can be as many as 4 times.  Each time she screams because of the pain.  It's so AWFUL to have to watch your child suffer when you have tried everything you know how and the things that should work don't.
2  allow us to feed her faster...she still eats 4x per day at more than 2 hours per time...that's 8PLUS hours a day I am feeding her.  She's officially starting therapy this week and she has other things to do with her time!
3.  our dream is to sit at the table as a family and eat dinner and have B eat with us in a reasonable amount of time

Please pray for these things for Battley.  Thank you!
C