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

50 weeks

B is 50 weeks old today!  I just got to the hospital, and she is a sleeping beauty this morning.  Daddy stayed the night again so I could go home to shower and rest.  We normally hang signs on our front doors every Thursday, but since we aren't home we had to move the party.  I grabbed the first thing I could find that we could hang up in the room...it's a Star Wars birthday banner.  She'll love it!

Where did we leave off yesterday???  We stopped the chimney feedings and the pump is directly attahced to her gtube line.  She is still on continuous feedings (24 hours a day) but we hope to start condensing those down to regular feedings today.  It will probably take a week or two to get back to normal.

Just had my gtube lesson...we are ready to go.  Hopefully we will be home later today!

C

Wed morning

B woke up at 5:30am feeling like herself.  She was smiling and happy.  Hooray!

Overnight she met her goal for feedings and is off IV fluids.  There have been no feeding issues.  She is napping now.  I'm hopeful that when the doc makes rounds today that we can go to regular bolus feedings.  She is being fed continuously now...meaning it's slowly dripping in her gtube 24 hours a day.  Bolus feedings are like regular feedings.  A feeding of a certain amount...time between feedings...another feeding...just like we eat.

The nurses fixed up a "chimney" feeding that we still have going. She has a long piece of gauze hanging over the bed with a syringe hanging over her belly.  The feeding pump is slowly dripping into the syringe which is hooked to a line that goes into her gtube.  This is to let any air out that gets in there at first.  When we start the bolus feedings we will ditch the chimney part.

A reader emailed me with the REAL scoop on the feeding pump.  It's not discontinued!!  They are just changing distributors.  So...I started my quest to get the pump we really want this morning.  Like all other things, this may take me a few days.  Fingers crossed!  

I love when y'all email me.  It lets me know I'm not blogging for no reason.  I know my dad reads this, but some days I think that's it.  Haha!

I'll try to update later.

Oh, and I'm hoping to go home tomorrow!

C

Guess what

Guess what...I just realized that B will be 1 in 17 days...wow!

I just wanted to share this b/c it's cute and totally my kind of thinking...

The gtube needs something around it in case it leaks.  The leaking can cause irritation to the skin.  Most folks use gauze and tape...so I've been told.  I found a tutorial on Pinterest for a cotton "button buddy" with a snap or velcro.  They can be made of different materials and thrown in the washer.  This will keep us from using tape on B's skin.  My mom whipped up a few prototypes this weekend.  We haven't used them yet.  Then I was looking around on the internet yesterday when B was napping to try to keep myself awake.  I found the cutest site: www.tubiewhoobies.com  They have gtube pad shapes...how cute!  I  had to order a few.  I love their philosophy...it's so us:

Tubie Whoobies is about embracing what you have and living to the best of your abilities, not being embarrassed or hiding your differences.  We make different products to add function, fashion, and fun to people who do things differently.

So it's Tuesday afternoon around 4pm.  We started our feedings about 2 hours ago.  So far...so good!  We will increase them every 4 hours if all goes well!

It is time for us to get a different feeding pump.  I am NOT good with change...do I get points for knowing this and admitting it?  I have done research for a few weeks so that we don't get one and then find out there is a better one out there.  There are really 2 basic pumps on the market....that I have found.  The Kangaroo Joey and the Infinity.  If I am wrong, please correct me now!  I selected the Infinity.  I selected this particular pump because it's more portable than the Kangaroo.  The Kangaroo has to have a bag hang above the pump.  It has a backpack...but no thanks!  The Infinity can just be tossed in the front of the stroller like we do now or in the diaper bag...no worrying about the bag of milk being above the pump.

We arranged for the pump to be delivered today so that we can practice before we go home with it.  Guess what...it's been discontinued!  What?!?!?!?!  Argh!  Change on top of change...grrrrr!

So they brought us a Kangaroo Joey pump to try.  I will get over it, but I had to have my 30 mins to grumble.  Now, as my mother says, CHIN UP...DRIVE ON!

I can't remember if I told this before...the reason I have an aversion to the Kangaroo is that the guy who first demonstrated it for us the day we came home had never operated one before.  He couldn't answer any of my questions and he actually thought it was okay to have me waste about an ounce of breast milk each day!!  NOT okay!  We laugh about this now...it took a while!  And that whole story turned out okay b/c my awesome friend (LDP) came to the rescue with a pump for us!  We are eternally indebted to her!

B is resting now.  She is feeling a little better this afternoon.  Yay!

C

Tuesday...I think

I think it's Tuesday morning...I think.  It's hard to keep up with the date here.  

B is doing well.  I can't post a pic from here.  She doesn't feel like herself just yet, but we are seeing little glimpses every now and then.

SO...whew...the past few days were a blur.  We stopped her feedings on Sunday night.  Monday we found out she had a possible partial ileus (bowel obstruction) which is common after surgery.  That was another whole day we didn't feed her any milk.  Her medicine is the only thing going in the gtube now.  The doc said that she did have bowel sounds (which is good) but that we couldn't feed her again until she (okay brace yourself for some real unladylike talk...just trying to be honest though) had some gas or a bm.  SO...we prayed for poop.  I went home last night to hang with H and sleep...daddy had a turn staying the night.  This morning I feel refreshed and am happy to say our prayer was answered!

We are waiting for the doc to make rounds today and give us the final okay to start feeding again.

We have had some issues with Oxygen also.  It's very tedious medical detail, but we have had problems explaining to the residents who are here at night that we aren't here to "cure" T18 and the pulmonary hypertension that has come with it (this is the natural banding of B's heart that we feel so blessed by) we are here for a gtube only.  Hopefully we are all on the same page now...B's awesome doc did some clarifying in her medical record for us.  Now we are hopeful that her pain goes away quickly so we don't have to give medicine for too much longer.  This would help the whole situation.

How long will we be here?  I have no idea!  We need to work our way up to semi-normal feedings and make sure there are no other issues.  I'm guessing 2-3 more days.

B is having some pain from the surgery.  It's a fairly large incision...especially for such a tiny gal. 

Prayer requests:

pain goes away quickly

feeding goes well and we can get home soon with no complications

oxygen is no longer an issue

Thanks!

C

In a Room

B is sleeping soundly!  She's had some pain today but it is under control now.  We are in our own room on a floor now...hooray!  And I'm already in love with the nurses on this floor.

This room is great because we can turn off the lights!  B likes to sleep in the dark.  We can also sleep in here...in the PICU we took turns staying up with her while the other person slept in the lobby.

Prayers now: feeding continues to go well and progress to normal feedings and everything continues to heal nicely.

C

Sunday morning post surgery update

I am sitting at B's bedside typing this.  We spent our second night in the Pediatric Cardiac Intensive Care Unit.  We should be moving to a regular room today.

B's surgery went well.  She was very unhappy about having that breathing tube (ventilator) down her throat.  It was hard to calm her.  Apparently she tolerates lots of pain medication.  One nurse told me that that is a characteristic of T21 so maybe it is also one of T18...not sure but signs point to Miss B being that way.  The tube came out before noon on Saturday and she was immediately a happy girl again.  Then her pain meds wore off and it took a bit to get the right combo.  I think she's been sleeping since around midnight.

She has started to have a feeding in her gtube.  It's such a small amount (4mL per hour) at first.

I'm not sure what else the day holds for us...will try to update later.

Thank you all so much for your prayers.  We have so much to be thankful for and each of you are on that list.

On another note, this place is amazing.  I have lived near this hospital most of my life and not known what a blessing that is.  It's like another world here...one where time on the outside stands still.  I've met parents who have been here for weeks and months who sleep on cots in the waiting room every night.  I also met a woman who woke up and started her day thinking it was just a normal day and after an accident had her daughter airlifted here yesterday afternoon.  She literally arrived with just her purse and lives hours away.  Wow is all I can say.

C

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