Tummy time

A hello from Ellie doing her aerobics in her pink jumper.

Hold that head up Ellie! 

Now, drop and give me 20! 

Her space

On home improvement shows they call this the "reveal".  Here is Ellie's new room!  A weekend of painting and hanging pictures and the girl has the perfect room for many years of enjoyment and God-willing, good health.

I may have mentioned before that the older three organically chose red, orange and yellow as their favorite colors.  So they were thrilled to choose green as Ellie's favorite color for her - now we have the first four colors of the rainbow covered!  So green was an easy decision for her wall color.  We wanted a calming green and found the perfect deep sage that is very relaxing.

Here is the view walking in the door.  Somehow a bizarre effect unintentionally added haziness to the room.

Here is the new "corner" for the nurse to sit in.  It's quite cozy!

Ellie loves sleeping in here room both day and night.  She does soooo well for naps - our days of "sssshhhing" are over as we now close her door and turn on her noise fan and we easily hear her when she wakes up talking.  Today we did art class, used the blender and went in and out the back door 550 times without worrying about waking her up - priceless!

A bulletin board with some of our favorite homemade cards and the poster from her heart surgery. 

All of her "beads" from her procedures - the yellow ones are for "overnight stays".  There are 44. 

The frame of her first "smile" along with her name cards from her hospital beds and the playing card we found on the ceiling. 

She has a fantastic view - her room is on the side of the house and instead of looking at the neighbor's house she looks at trees due to the slope of our property.

Her closet provides plenty of space for her hanging clothes, equipment and paperwork- it's nice to have these things out of sight! 

The room is joined to Julia's room by a bathroom - very convenient to give her real baths every day! 

Hard to see this but this is a little hand print done for her by one of our nurses. I painted it the same color as the wall, it looks really neat. 

A handmade ceramic of  "St. Louise" - so precious.  I attempted to photograph the description of her life but it came out poorly. 

We are very much enjoying Ellie having her space. Not only is it fun to walk in and look at all the beauty but it's a reminder that she's home and with us.

Pigs

A tube of farm animals as a present for Julia's birth started a love of pigs in our house.  The animal kit came with a large pig and two small pigs (a sitting and a standing little pig).  These three pigs immediately were named by Jacob "Mommy Pig" and "Baby Pigs".  Jacob took to the Mommy, Xavier took to one of the babies.  Mommy Pig and Baby Pig have traveled state to state with us, been hidden around the house for "pig hide and seek", had their own birthday celebrations, and most importantly been part of thousands of stories and adventures.

We've lost these pigs dozens of times but they always did eventually show up.  But once at the beginning of 2011, we looked months for one of the babies and could not find it.  I went to the two craft stores in town that I knew sold these types of tubes and I learned they no longer carried this particular set.  So I had to search on line for the company and order it.  The boys were so happy when they came!!  That now gave us three babies and two mommies.

At this time in the spring of 2011 we decided to list our house for sale.  It began a huge clean out process to get it ready to show.  During this time we were also heavily praying and discussing whether we felt our family was complete.  It was not an easy decision and it was one we prayed about often.

One day as I was moving some furniture around...I found a tiny, pink, plastic creature.  It was one of the baby pigs.  Now the baby count was back to four.  I was really happy to have all the babies back together again.  A short few months later we decided to add a fourth baby human to our family.

Over the years the pigs have sustained injuries - mostly broken legs and ears.  In fact the original Mommy Pig has a super-glued leg in a safe place in Jacob's treasure box.  Xavier wants to play with all four babies so I find that electrical tape works best for casts.

I thought I'd share a picture of Mommy and her four babies.

Today

We are loving Ellie being in her room!  I've decided to wait until we paint her room to show you her new corner of the world.

But today I bring you...her old corner of the world!  My computer time came before my laundry folding time today so I humbly show you a live picture of our couch.  Jacob is watching golf at 5:33 pm EST.  I found an old picture of the den and lo and behold - laundry!  At least we can now compare apples to apples.  Er um...sheets to sheets.

All that space!  For the most part Ellie is still 90% right in the middle of all the action here at the house. It's just wonderful to have a space for her to nap (her swing is in her room now) and sleep in a little in the mornings.  She has a queen bed in her room we can sleep on to still be near her.  The nurse found a little space to work in the playroom while the girls played by the window.  

Julia wanted to see if Ellie wanted to practice being a nurse.

Then my little helper joins me for milk collection as well as treating a sinus headache I've had for a few days now.  She says she prays for me when she sees me doing the nasal rinse. :)

Yogurt

Ellie took some bites of yogurt tonight!  Isn't she cute?  Her little pose is saying "yeah, I'm sitting here chilling with my Moms eating some yo-yo".

 

Then I left the room for 5, 4, 3, 2 and 1... 

Then she was wearing all the yo-yo!!!  Didn't seem to bother her!

Luckily Julia was my helper cleaning her all up.

Pill crushing

Exciting event today - there were seven pills left of Ellie's drug that she's now off of and we got to throw them away!  It's a shame really - thinking of kids in poor countries who go without life-saving drugs such as these.  I was about to toss the bottle in the trash when the nurse suggested we crush the pills in case anyone found them and was tempted to take them.

Funny, I was unaware of an abuse problem of dual endothelin receptor antagonists used in the treatment of pulmonary artery hypertension.  Better safe than sorry!

And Ellie loved her room today and took two long, quiet naps in there!  From the beeping ICU to our living room - finally the girl gets a quiet place to sleep!

Slow and steady wins the race

This expression means that although progress may be slow, caution will eventually be more beneficial than being careless just to get something done quickly.

I admit to wanting things to move quickly with Ellie now - we've waited so long for her to be better.  But today proved it's enough to just be thankful she's doing well and not be hasty with her medical plan.

Bottom line is, she's doing great - her tests all looked good.  The best news is that we officially are weaning some of the medicines!  So we start with two (of 6) medicines today and after a month or so we'll go on to another medicine.  Then at the end of a four month period we'll go back to Atlanta and the final weaning will be the oxygen at night.  It turns out that's the last thing they want to take from her therapy.

The drugs that are weaning today are: #1 the really expensive drug we had to sign liability papers for and we have to quarter the pill and dissolve it to put it in her tube. #2 is the dieuretic that makes her lips so dry!  It's getting cut in half, yay!

She still does have a little leaking of a valve in her heart that may never be an issue but it will be something to watch.  But it's nothing compared to what she's survived her little life.

"Where we goin' Mom?"  

It's lunch time Ellie - we've got to stick with tradition girl!  We've eaten Moe's by the hospital I don't know how many times now! 

 

Ellie helps the technician with her echo today. 

I love my Daddy. 

Time to go home now! 

Now this is the big change - we were going to wait until she was off oxygen to move her big 02 machine into her room but I was so excited about the possibility we went ahead and did it when we got home!  Here is her spot with her bed and machines moved.  Stay tuned for pictures of her in her room!

Goodnight Ellie.  Glad you had a good check up girl.

Prayers

Tuesday, May 21, 2013 is:

• 3 1/2 months after open heart surgery
• 1 month after sleep study that determined Ellie could be oxygen free for day time hours
• our 12:30 appointment in Atlanta to determine if Ellie can be free from O2 all the time and some medicines can begin to be weaned

Prayers please - God's will be done!  We pray for good report but we pray if it's not what we hope for that we can gracefully accept the outcome.  We'll update you asap.

Airborne

Ellie's high chair needed a little back support so we put a travel pillow behind her.  It looked like a parachute!!!  

Even better that I got her to smile and look like she's saying "Geronimo!"  

Games

Ellie joined in some of the game playing this week.

First she found herself buried under the Twister mat.  

Then an updated version of "which toy will she grab".  This one was on the floor and involved a score card. 

She takes her time looking.

She makes her pick. 

 

 "Mummy" and "Cocky" had the high scores.

 Glad you can join us Ellie!

Our week

Hello friends!

This week we all had a small cold but it wasn't really that bad at all.  Ellie got the sniffles and required a little extra holding but now she's feeling much better!

I've been busy with a project this week.  I've put more than 900 photos into three large photo albums.  It's something I've always done and the kids love looking back at "their" albums.  This large order of prints dated from June when we moved and ended at the beginning of 2013.  As a journalist at heart I tend to take a picture of random things that "tell a story" of our life that I don't want to forget.  An example would be the food tray during our July hospitalization before I started the blog.  It was important to me to capture the Kit-Kats - the result of an extra $.25 or so I had left in my breastfeeding food allowance each meal.  I would hand them out to doctors as they came in the room.

So I've been writing all week, just on paper and not online.  Keeping it old school.  The truth is as I looked at a lot of these pictures I  had a hard time remembering what I wanted to remember! :)

Oh and Jeff did some home improvement projects - and some art at the same time.

Mother's Day

Ellie makes motherhood full of extra adventure, excitement and blessings.

  Who me?

Yes you little one. 

A thoughtful rolling cooler as a gift to carry important things to picnics. 

Important thing. 

Celebrating at church.