Palliative Care

Miss B and I have been BUSY.  Her birthday party was great!  I want to blog about it and share some pics, but that will have to wait for a day we have more time.

You have all heard/read me talk about B's WONDERFUL doctor before.  We totally adore him and his team.  I wanted to share an article about their team.

http://www.foch.org/2011/04/nurturing-life-when-life-is-threatened/

This was written back in 2011, but it is a quick look into what the Palliative care team does.  They have been a lifesaver for us.  Adam and I often say that we feel like we have been to therapy after we have an appt.  It's SO much more than a doctor who is in and out in 5 minutes.  These people get to know you...get to know your family...and are there for it all!

I've been on Facebook and seen what some parents have to go through to get simple care for their children with T18.  It's not pretty.  Of course the palliative care team sees many other types of cases, but t18 is what I know.  We are SO blessed to have found this type of care for Battley.  This team supports our decisions, and I truly consider them friends.

They are in the running for a $10k grant.  Please take a moment to vote for them.  It's a vote for Battley and a vote for Mississippi!  It's a one time vote.

http://vote.livestrong.org/regions/4/

Click on Palliative Care

Then Blair E Batson Hospital in Jackson, MS

THANK YOU!

C

ONE

Battley is ONE!  One year of bliss with our tiny princess!

This week has been very emotional.  I've been thinking over the past year and a half...thinking about what it was like to be so excited about a new baby, the heartbreak of learning there may be something wrong, the anxious anticipation of waiting for test results, the prayer...oh, the prayer, the results...the devastating results, the gift from God of a better attitude and HOPE, the new friends, the planning, the praying...did I say that already?, the sleepless nights, bonding with B while she was in my belly, then the day came...the day of her birth.

The doctors, the nurses (oh these wonderful people), the photographer, the LDP, the room, the anesthesiologist, Dr G, the moment I saw my precious girl for the first time!...there was nothing like that.

I'll be honest...the rest of that day was fuzzy.  I remember bits and pieces.

Then the WILDEST ride I could not have ever imagined happened!  

We decided a long time ago that Battley belonged to Jesus.  We were going to accept and enjoy whatever time we had with her.  

This has been a wonderful year.  I wish I had the time to sit and write thank yous to each one of you who have walked this journey with us.  Adam and I could not have done this alone.  We thank God for putting each of you in our lives.  

This post is a jumble of emotions, I know...it may take me a few days to come off this roller coaster.  

I know I said I would post each day of birthday week...it was just too much...sorry!  We had a blast doing something special each day.  B is actually still sleeping bc of all the fun this week!  

Birthday party tomorrow...see you there!

C

Birthday Week Day 1

Today was BEAUTIFUL outside.  We woke up and sang the birthday song, ran some errands, picked out some pink flowers to plant with B, started painting the cornice, went for a walk, did our exercises, and now Miss B is snuggling with her daddy after a bath.

In Speech Therapy we are working on pre-feeding exercises to stretch B's mouth muscles and get her ready to eat someday.  She likes to hide her tongue in her mouth so we have been working on getting her to stick it out.

Ta-Dah!  She has been doing this all day!

And I just remembered these are the first pics I am posting of B without her ng tube!  At first I looked at her and thought something was missing and was reaching for it when I dressed her.  Now I am pretty used to it and am just loving this face!!

We found these door hangers on Etsy.com a while back.  We put them out every Thursday.  They are staying out all week for birthday week now!  B and Adam during the planting:

Ready for bed:

And my fave pic of her right before her surgery...it just shows her little personality so well:

C

51 weeks and party deets

We have had a slow week.  B has had therapy and a few makeup sessions from when we missed last week.  She is feeling better daily, but still not 100% herself just yet.  She has been very tired so I've kept her home so she can rest.  

Battley's FIRST BIRTHDAY PARTY!!!

You know I have procrastinated planning a party with everything else that has been going on.  We really do want to celebrate the past year with all of you that have prayed for us, visited us, brought food, sent encouraging words, and loved us.  We aren't sending out invitations so THIS is your OFFICIAL notice...YOU are invited!

Our House...if you don't know where it is, then that's all the more reason for you to come!  Email me and I'll send you directions!

Saturday, March 23rd

10am until you leave...it's early, yes, but stop by and then go do the rest of your Saturday

I don't know any other details...going to whip this thing together this week!

Actually...we are "stealing with pride" an idea from a friend with a daughter...they do a whole birthday week with some kind of surprise each day.  I'll try to post our bday thing each day...birthday week starts this Saturday!

C

Sunday update

It's 10am and B is still asleep!  Of course you can subtract an hour for springing forward, but we have one sleepy gal!

Yesterday was good.  The site where the gtube is was leaking a good bit.  We had to adjust a few things and hopefully have found the answer.  

Other than that B is doing well.  We finally got a few smiles from her last night!!  I am so excited for her to feel good again!

On tap for this week:

*H is out of school, so we must find something fun for him to do...this isn't easy since he can't do any real physical activity other than walking

*work on B's cornice and curtains

*figure out what to do for the BIG 1st birthday celebration

*I think we just have one doc appt and it's for H

*therapy (PT, OT, ST)...combined we have 5 appts

C

Home Sweet Home

We got home around 7pm last night and had a great night!  

B is still having some pain.  She has a very large incision from the Nissen.  We are managing with Tylenol and Motrin.

The new pump was delivered yesterday about 30mins before we left.  I am still reading the instruction manual, but it seems to be easy to understand.  A reader named Tracy emailed to let me know that the pump we wanted wasn't discontinued...it just has a new distributor.  I am so thankful she did email!  This pump fits so much better with our lifestyle.

We are working up to a normal feeding schedule.  B seems to be very hungry this morning and handling the feedings well.

When we got home we bathed her and fed her and she went right to sleep.  This morning we are on our regular schedule so far!  Yay!

Adam said this morning that it was amazing we only stayed 5 days in the hospital when we had her and 6 for this!

I do have lots of new things to figure out.  The gtube, since it is directly to the stomach, works differently than the ng tube.  You have to be careful not to spill milk everywhere.  Adam has already spilled medicine all over the bed.  The nurses all told us we would spill it all over a few times before we got in a habit of doing it the right way...they called it feeding the bed.  ha!

The past week was a wild ride.  We never imagined we would have to give B over to someone and let them operate on her.  But we certainly couldn't have dreamed we would be blessed with all this time. It's hard to hand your child over to someone for something risky.  I could see the pain in so many parents' eyes in the hospital.  It was hard with B, it was hard with H, it was even hard when H had tubes when he was 2.  We never had "that feeling" about doing the Nissen...you know, the peace that God gives with decisions.  We just had to trust that we would have known not to do it if we weren't supposed to.  

Thank you all so much for your prayers for our family.  They got us through a hard week.  We appreciate all of you!

C

We got the final word

We are headed home tonight...lots to do before we go, but we are going!!

C