Football

Despite all our cheering, our team lost today.  But we had fun watching.  Ellie caught some of the game too!

Quilt

Ellie got upgraded around here last night with a new bed in her suite.  We added a quilt under her that's extra padded and extra meaningful.  It's handmade by my paternal grandmother, God rest her soul.  It has the stitching of her name and year in the corner - 1980.  This grandmother watched her healthy, active teenage son become paralyzed in an instant after a swimming accident.  She cared for her son for more than 40 years before his life ended the year Xavier was born.

I think she'd be well pleased her great-granddaughter is enjoying her blanket.

Best seat in the house

My view from the couch.

Germs and groceries

Ellie had a super great day today - very calm and slept well off and on throughout the day.  Smiled a lot too!

The day began with some puny kids - one especially.  So, pray please that whatever might be starting is well contained and stays far from Ellie!  Here they are all in the sick "nest" that just has to be Mom and Dad's bed.  It's the best right?  We can do our best to keep the kids away from Ellie but keeping them all away from each other is near impossible.  Jacob was determined to find the right movie and Julia was preaching the gospel.

A particularly large load of cleaned bottles (thanks to the nurse) for milk storage that seemed like a photo op where it was sitting.  This little Easter basket came in handy being still out and around the house when she was born two weeks after the holiday.  Being positioned under the Last Supper (which precedes Easter) seemed worth pondering.

While I was in the kitchen, I decided to share that Progresso soup was on sale at Walmart and sounded like a wonderful idea for a simple dinner for the next few cold weeks of January.  It will give me an excuse to throw ingredients in the bread machine and fire up some rolls to go with it! 

Ellie falling asleep this evening in Daddy's arms. 

 

We hate to tape up her sweet face but we must.  Good night!

Relaxing

 Ellie got a nice bath this morning and was then wrapped in the most wonderful, soft fleece blankie.

She was fascinated with the probe on her finger to measure her oxygen.

 

She even did her best E.T. impression.  "Phone Home".

All of this cozy treatment will be briefly interrupted by a quick vaccination she's getting this morning.  It's to keep a serious cold at bay so she can stay healthy going into her surgery.  There will be more cuddling afterwards.

Surgery it is

Well, our girl is taking too long to get better!  It seems the best tool for her stubborn case of pulmonary hypertension is to close the hole in her heart.

So we're scheduling open heart surgery within the next few weeks!  We can't believe it - all this time waiting and wondering about when her heart surgery would be and now it's coming into the picture.

She didn't look good enough to wait, the longer you wait the more it takes to bounce back from this level of high pressure on the right side of her heart.  So closing the hole in her heart is most likely what is needed for her heart and lungs to play well together again.  It will just be a delicate operation and recovery period but she should do just fine.

So that is the plan!  She is in GREAT hands (God's and the doctors') and we're excited about helping our girl be as strong and as well as she can be.

Driving in the dark, early this morning.

 The "wake up" look.

 Radiology confirmed her pressures are still the same.

HOME...Xavier took some pictures and captured my break from holding the phone when we got home.  The kids were happy to see us and were quite easy on us if I am brave enough to say that. 

If you are interested, here is the description we left with today.  We do our best to understand what is going on and to explain it to others, but this shows you the level of complexity we're dealing with and how we're ever so grateful for the hard working doctors, surgeons and nurses that are guiding us through this.  
Jesus, we place our trust in you!

I just might have to change the name of this blog when she gets her heart fixed!  But she'll still be "holy" so I'll just let people think I can't spell.

Prayers

Thank you in advance for all the praying I know you will all be doing tomorrow!  January 15th has been set in our minds for almost two months now as we merrily enjoyed our holidays and just let this day roll around as slowly as it could. We can't help but think she'll be better based on how she's doing at home.  Sometimes those things just don't align though.

We'll post a report as soon as we're able.  Today was a full day at home getting all the medicines/notes ready and of course important details of her wardrobe for our trip to the big city.  Today she was again a Bulldog.

Sisters

Ellie graciously shared her beauty secret with all her toys moments after I took that picture as she spit-up all over the place.  All those toys are now in the wash.

Then it was rest time and Ellie got to help me tuck in Julia!

Julia was protesting Ellie's leaving but a promise of apples and peanut butter and a cookie when she woke up distracted her. If only all of life's problems were so easy to solve. 

Toys

Julia put herself in charge of the entertainment committee this morning.

It's just us girls as the boys are golfing.

Long Day

The following picture means lots of things.

1. Your child's medicine port from her feeding tube popped open in the middle of the night, spilling appx. 8 oz of milk in her bed.
2. Your child is an excellent sleeper who does not seemed to be bothered by being soaked.
3. It is going to be a busy laundry day.

I think Ellie knows something we don't.  Since this happens more often than we'd like (even happened once in the hospital), I think Ellie is on to something.  Maybe this is her beauty secret - milk baths.  It seems to be working!

After a real bath (taking along a portable oxygen tank), the nurse cleaned her entire crib and gave her a change of clothes - good as new.

Nothing like golf in Hawaii time zone to get your kids bathed, fed, prayer time and on the couch together.  Xavier posed for this picture with Ellie then... 

said he wanted to know what it was like to be a a baby and look at Mommy. 

 Ellie then played with his ear - he hardly noticed.

And Jacob wanted to hold her before bed time.

We had a fire drill at the house today with firemen that came and taught us some things about escaping and storing Ellie's oxygen tanks. Long day indeed! 

John Paul

What?  My cousin John Paul was born today?

 I'll stop playing with my toes for a moment to send him

a wave hello!

Ellie's photo was taken to the hospital for his birth and he joined this world on a Tuesday morning, just like Ellie.  I hope the two of them get to meet one day soon!

Go Irish!

Some years ago, a fine lady named Eleanor had a son who went on to go to the University of Notre Dame and then he too had a son who went to Notre Dame.

Today, our Eleanor is ready to cheer for the Irish!

Note: it is Ellie's Papa and her Uncle Ken who are the ND alums and Uncle Ken is in fact in Miami probably getting ready to find his seat in the stadium!

Break Over

One last night of the three of us staying up way too late enjoying each other's company.

Reality set in when I had Jeff bring me a pile of books to organize school for the week.  Still didn't stop us from finding something funny on t.v.

Epiphany

Today I had an Epiphany to try to investigate the photo problem and found a solution!

So, hello from Ellie!

Ellie heard we had elk for dinner so she decided to try some of her reindeer. 

Don't you know after you've eaten and played all you really want to do is take a nap?  I love how the blanket was in the perfect spot for a pillow.  I also love how it took four children for us to have a child who can do cute things like this regarding sleep. 

Cold January days have been filled with lots of couch time.

Photos

Greetings everyone - and Merry Christmas (still have two more days left!). 

For some reason this site is having trouble uploading photos - of which I have plenty to share.  Oh well - maybe it will work again soon.

Ellie is doing fine and seems to be totally free from her cold!  Playing and happy and napping like she usually does when she feels well.

Hopefully the technological glitch will be fixed soon and you can see her sweet face.

God bless all of you and a big hug from Ellie.

New Year

Happy 2013 from Ellie!

Jeff and Ellie ended the year doing what they do best. 

 

When he put her down I put a blanket on her and then came back to find her like this. I don't think there's much to worry about though when your child has air literally piped through her nose 24/7.

 

This year a dear family member told me of a New Year's tradition from Cuba that I could not resist trying.  It sounded like the perfect way to end 2012!  They fill a bucket with water and toss it out their door as a symbol of putting the past behind them. 

 

Although our life is a continuum of days that form who we are on this journey to be with God forever in heaven, it's o.k. to say "we did it, we survived" during something hard.  I even had dirty mop water to do it with!  It was very theraputic to envision the bucket being full of all the tears we cried, including Ellie's tears through all her procedures and rough times.

 

So, out the water went!

 

Then it hit Xavier the year was over. A child doesn't quite understand that today is really yesterday's tomorrow.  Simple, huh?  :)

 

 

But what a child does understand is when their mom says they can eat an entire candy bar for dessert... 

 

there is always a reason to celebrate this life. 

Happy Feet

Jacob loved getting the chance to hold Ellie this morning while I sort of stayed close by.  

She enjoyed playing with his face.

Happy girl having some fun in her seat today. 

How cute is that?

Bath

A morning bath for Ellie with a little cleaning out of her nose and wiping her face down really well.  She enjoyed it.  Julia is becoming quite the shutterbug.

Family

The sun is rising and shining on the back of the Christmas tree this morning - what a lovely sight.  It's just me home with the girls due to some late sleeping by Julia.  Jeff will soon be on his way home with communion from mass.  Ellie is still sleeping - I love it when she sleeps late in the morning.  It usually means she feels good.  She's almost all clear with a little lingering but is happy and relaxed for the most part.

May you spend today celebrating The Holy Family as well as your own.

Less stuffy

Ellie is clearing up!  She woke up pretty rough this morning - she was crying when the nurse was taking off the tape on her face and she blew blood out of her nose all over the place.  Laundry has gone to a new level around here these days!  Anyway, we gave her some treatment and it really seemed to help.

By the afternoon she was very clear and was happy to just sit on the couch and look around.  And play with her feet.