Blog Takeover!

I told Catherine yesterday that could update the blog today after surgery, but I guess I missed the memo that she was accepting. Oops. Well, I still have my access to the blog from the day Battley was born, but after today Catherine may revoke my privilege!!

First, I have set up a site for meals for the family while Battley recovers. If you would like to drop a meal just pick a spot at www.takethemameal.com. Recipient last name: Terhune    Password: Battley

Now, onto my real purpose for this post. I joined Catherine and Battley the other day for Speech Therapy. It was so cool to watch the therapist working with her, and I can't wait to see Battley in action at PT one day. Well, I think I was meant to be at that appointment on that day. The therapist was showing Catherine some equipment that they should consider purchasing for their home. She suggested Catherine set up an Amazon.com wish list to share with family and friends. She said family and friends will want to know what to get Battley for her birthday and this will be equipment that will be great to have at home, but it's going to be expensive to try to buy it all yourself.  Catherine proceeded to take out her phone and start taking pictures of everything to go home and research it herself. Her response (no surprise to anyone who has known her long, and I'm sure many of you can hear it now...she said it in a very shocked voice like the therapist had suggested she make a Christmas wish list of luxury items for herself to send to total strangers), "oh my goodness!!! I would never do something like that! We already had a six month party with presents, and everyone has given us too much already!!!" Sometimes you need friends to protect you from your own self so that's where I'm stepping in. I asked ST, PT, and OT to put together a wish list of therapy items for B to have at home.  I set up an Amazon wish list under Adam's email address. Some of the items are more expensive than others. I put them on the wish list anyway because you can also purchase an Amazon gift card online to send to Battley to put toward a larger item. Keep checking back because I'm still waiting on the list from OT, and I may convince C to tell me some things B needs. I added a few pieces of clothing as examples. Battley will need 2 piece outfits, snap up or zip up the front onesies to have easy access to her G-tube, but I think clothing is a lower priority. Catherine loves surprises, but it is safe to say this is not the kind of surprise she is into. She may kill me, but we have been friends long enough she will have to forgive me. Besides, I'm leaving on Sunday to go out of town for a week!! Haaaahaaaahaaaa!!!!!
Www.amazon.com
Far right "Wish List"
"Find a wish list or Registry"
Search by "Adam Terhune" or "Adam.terhune@gmail.com"

We are finished with surgery

I apologize for the late post.  B is out of surgery and it went well.  She is resting in the pediatric intensive care unit now.  The doc had a hard time getting her breathing tube down this morning so they are going to leave it in overnight so that she can rest and we don't run the risk of having to put it down again.  This means she is on a ventilator.  She is breathing over it as I type.  This is excellent news!  Our prayer is that she have no trouble coming off the vent when it is the right time.  She is mostly sleeping but restless.  They are working to get her pain meds right so that she can just rest.  I'll update later.
C

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

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

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

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

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