Christmas

"On the third day of Christmas, my true love gave to me...a freezer full of elk meat."

Isn't that nice?  A friend gave us some elk (aka deer) and even gave us a batch of chili made with it.  Very tasty!  It was our first venison meal ever.  Luckily no one made the Rudolph connection.

Ellie got alot of very sweet, thoughtful gifts for Christmas.  Along with some adorable outfits and fun toys to shake, she was given some other meaningful gifts I wanted to share.

First, this is a collection of name cards that got taped to Ellie's crib when she was admitted to the hospital...made with love by the nurses.  Framed with the name cards is the playing card we posted a while back that was on the ceiling of the room she was in.  And of course the smile during that visit.  We now believe it was the heavy influence of pain meds that allowed her to smile like that on that day.

Next is a very touching gift from a co-worker of Jeff's brother.  This man offered us a piece of his heart that we will forever treasure.  He was the care giver of his dear sister Libby.  Libby had Down syndrome and passed from this world not too long ago.  She lived a full life well into adulthood.  Her brother heard about Ellie and took this wall hanging from his sister's belongings and gave it to us.  Dear Libby, please watch over Ellie and offer her comfort and relief from suffering as she faces some of the challenges I know you faced in your life.  I know you had a generous heart and would be happy to see it in little Ellie's room. 

You are still making the world special.

And finally, Julia was so sweet and filled Ellie's stocking with some of the bottles in which I store milk.  Courtesy of the children's hospital in Atlanta, I have a nice supply of these little bottles which start out looking like this:

 Then end up like this in the fridge:

And then finally either mom or the nurse makes a 24-hour batch in this and the bottles get washed and the cycle starts again.

Thank you Our Lady of La Leche - pray for us.

Stuffy Ellie

Holey Ellie is now Stuffy Ellie.  Our girl is so congested from what appears to be a cold.  We have a regimen of giving her breathing mask treatment, beating on her back then using a suction machine (fun times for her) to clear her out.  She's pretty fussy through it all so we're spending lots of time holding her. The good news is her numbers are all excellent so she's really holding her own.  Just wish she felt better.  We're giving her some meds to make her more comfortable and just trying to let her rest. 

She did play on the floor for a bit today long enough to enjoy some of her new toys.  You can see her little glassy eyes are part of her cold.  Poor girl, we're trying to help you out!

Meanwhile, Santa and our families all loaded the other kids up with enough to keep us very busy and happy around here for quite some time.  And the heat works great in our new home to keep our girl warm - a luxury in a world where people go without heat.

Christmas Eve

Ellie slept through most of the Christmas festivities tonight.  What a blessing to be together with family in our wonderful home.

Praying for all children to feel the presence of Christ and his love for all mankind tomorrow morning.  Santa will be eating a mold of himself made from white chocolate at our house tonight. 

Family and Christmas

Ellie awake for some family time.

Ellie (and maybe some of the other people on this couch) asleep off and on through the weekend celebrations.

Merry Christmas from all of us as we celebrate the birth of our Lord Jesus.

May we always celebrate His birth as well as the existence of every human being - born and unborn.

More grins

Ellie is flashing so many smiles at us we're keeping a log!  Today Xavier reports "22" as of 15:45 EST.  :)

In the "why not" category I decided to stop school this morning for a photo shoot and this is what we got.  Good stuff.  The outakes are lots of fun.  When you get to the bottom you'll see what we like to call in our family the "money shot".

 

Rocks

Today I'm happy to say things are a bit more relaxed.  It's mostly due to a new interest the kids have - pet rocks.  They brought rocks inside yesterday during the craziness and named them and started playing with them late in the day.  They have not stopped playing with them since.  I'm humbled that something I was tempted to say no to has turned into a very fun game for them.  Sometimes when you're home all day you really do have to pick your battles.  Ellie is comfortable and resting.  We even had a nice call from her surgeon in Atlanta to check on her. 

Jesus, you are our true Rock and we place our trust in YOU!

Plans and stopping plans

I woke up this morning with big plans.  Getting excited about the coming week and wanted to get ahead in schoolwork and chores so we can take a nice long break for Christmas. 

When the phone rings at 7:20 a.m. and it's the nurse agency telling you your nurse was up all night throwing up, you should just go ahead and get a stack of DVDs ready for the day.  But, my plans!!  We did get a nurse around 9:00 to fill in but sprinkled in the morning was non-stop phone ringing, doorbell ringing, neighbor visit, laundry pile up, and unauthorized activities such as tent building and "collections" being brought in from outdoors.  By mid-morning I decided to just sit with my girl and see if I could get her to do what she started doing yesterday...smiling.

On her 8 month birthday, Ellie pretty much started flashing us smiles on demand. I didn't think I could capture it on camera but this morning I tried and was successful - even if a hand got in the way.  Maybe she was waving too :).  She's also in her new little seat which works out very well for her for about 30 min. at a time - she gets tired and fusses after that but she sure seems to enjoy it. 

Bopping along

We've brought back the Boppy into Ellie's life!  That thing is 8 years old and may leave our family in a biohazard bag after all its been through!

But here she is getting some help getting her hands to some toys.  She's doing great this week - we're keeping her comfortable.

Santa has 11 more days to bring her some better working lungs :).

The girl went outside!

December 9th was circled on our calendar for months.  It was our first time in this subdivision that we experienced the annual tradition of lighting candles in bags at sunset.  The bags lined the street of the entire neighborhood and it was really a gorgeous sight.  Ellie got her stroller loaded with the essentials and we took her about 10 houses down to a court that served cookies and hot cider.  The older kids got to visit with some of their friends from church and we felt "normal" for that hour or so.  Well, other than the fact that Jeff reminded me I should not stand too close to the fire they had going.  Oxygen makes the fire bigger - think of what happens when you blow on a fire.  The flames get bigger.  We didn't want our first year to be that memorable.

I think Ellie knew there were cookies over there.

Aunts and Cookies

A very nice (and naughty) friend sent Jeff home today with a bag full of cookie-making ingredients!  Icing, sprinkles, dough - even butter!

Fair warning to anyone that comes to visit us after about December 20th - you will be helping us eat them.  Consider yourself invited too, speical "Tita" that gave them to us  (that's "Aunt" in the Phillipines).  Oh, and we'll be using the cookie cutters given to us by Ellie's Aunt Louise!

This baby CAN wait

There is a wonderful program to assist babies with developmental delays called "Babies can't wait".  They come into your home, assess the child's needs and provide you with free speech or physical therapy.

We signed up when Ellie was about a week old and made an appointment to start working with some basic tummy time skills. Then we went into the hospital and had to cancel.  We ended up cancelling a total of about four times until we finally got home for long enough to get a visit. 

Now we've had a very nice, skilled therapist come to our home six times and hold and love on Ellie and get her to roll around and reach for things.  She gave us that really cool mouth tool thingy too.  But a recent conversation between Jeff and I had us thinking we needed to simplify things and keep Ellie as stable as possible.  Keep her at home, let her rest as much as possible and not push her too much in any way.  Sometimes when the therapist would come she'd have to wake her up to get her session in.  Painful for me to watch.  So today the therapist came and I had a huge weight lifted when I told her we were going to take a break.  We'll still get a monthly phone call but that's it.

It's easy to break things down when you realize your focus is breathing, sleeping, growing, eating....that's it folks.

Sweet

How sweet Ellie fell asleep last night while we watched a very entertaining episode of Cake Boss - I think we like that show because Ellie's great Aunt lives blocks from there!

 

Sisters

The girls all join hands for some Chrismtas song singing. 

Then Ellie started her own singing/gagging rendition and Julia stepped in quickly to help. 

 The nurse had just left so Julia was my extra hand helping Ellie empty her stomach so she doesn't spit too much up and swallow it back into her lungs.  Here she is holding the syringe full of stomach contents for me.  And I had hoped one day they would simply braid each other's hair when we learned we were having another girl.  Boy do I dream small.

Coincidentally, Julia chose that moment to say "when I grow up I want to be a mommy".  I then told her if that's what God wants her to do I would help her take care of her baby like she is helping me take care of mine.

At least it's Advent now

Christmas coloring and conga lines forming.

I'd sleep too

Who says you can have too much fleece in your life?

Anniversary

11 years ago today, Jeff and I pledged to "accept children lovingly from God, and bring them up according to the law of Christ and his Church".

We are being true to eachother in good times and in bad, in sickness and in health.

We will love and honor one another all the days of our lives.

What better way to celebrate our life together than to watch our alma mater - the place we met - play an exciting football game.

The family cheers on the Dawgs.

 

The four little bulldog puppies.

 

A family day.

Same

How do you try not to have expectations for something that is out of your control but still manage to feel disappointed even though you told yourself you would not have expectations?  That sums up our day yesterday!

Although she's not by any means worse, we didn't get the news we'd hoped for that she's moving rapidly toward getting better enough for heart surgery.  She's pretty much the same that she was 6 weeks ago.

It was discussed that we may go ahead and have the surgery anyway despite her lungs not getting better.  That way at least her heart being fixed may improve her overall health and there is a window to jump in before she might start to get worse.  The problem with doing it before her lung pressures were better though is that post-operatively she could be very delicate and take longer to recover.  That's ok really, she's just very fragile and they will take their time getting her off the machines, etc.

She looks so good for now though that they are o.k. with letting us go until the middle of January for our next check up.  At that point we'll do alot of tests so they can approve her for surgery, if that's what the team decides.  The gagging she's doing is sort of undefined without a real worry.  They did think maybe a little milk protein allergy was making it worse, so no peppermint ice cream for mom this Christmas :).

So, for now she's doing great and the path may look a little different than we'd first thought but that has sort of been the way things have gone from the start!

The car ride up was rainy and Ellie was not happy some of the way but was calm most of the day.

 

No shortage of nice, understanding people at the hospital.

 

An "Ellie fan" thought having a tablet would make the hospital visits more bearable and she was right! A little distraction to pass the time waiting between check-in, blood draw, triage, ultrasound, appointments, etc. :)

Jeff and I competed with a little Scrabble.  We celebrated any time we could use enough brain cells to get a word other than "go, and, or to" :).

 

Ellie gets some attention from her favorite nurse. 

 She couldn't hold still - go girl!

The doctor did some lovely artwork for us explaining a few new terms - we didn't think there were new things to learn but there are!  This is a diagram of her heart, the holes, the vessels, the pressures, her on a time line, her reserve, the resistence she might start to develop to the meds, and the direction of her blood flow. 

Ellie studied it all and explained to us later that night that we are just going to have to wait and see how it all turns out.  Yes ma'am.

 



Picture day

Today our goal was to take as many pictures as our children would allow!  They were all pretty happy to cooperate!  Here are some samples.

The pictures of Ellie are in the same outfit Julia wore at 4 months or so at a studio.  We did a pretty good job recreating it at home - it will have to do!

Sweet angel - I love when she opens her eyes wide like this.

 

Then we had a heroic act of love by the children to sit for about 30 pictures taken of all of us.  There was one salvageable one that's not ready to release to the press quite yet so I'll leave you with this outtake.   

 Jacob went from sitting to slouching

Ellie is happy her mom pauses to straighten her oxygen

Jeff never really stopped smiling the whole time we took pictures

Julia catches something funny on t.v.

Xavier asked if we were done before we got started