Better Day

The eye drops are obviously potent!  Ellie looked much much better this morning.  Or should I say much much wetter.

The nurse on today was the perfect nurse for this day. She jumped in and really never stopped cleaning, rearranging, scrubbing, sorting.  It was my kind of day!  I have completely lost my voice which makes the children wonder why in the world I am whispering and snapping to tell them their lunch is ready.

Ellie slept well and was easy going the whole day.  Check out the face.

This evening she took to some light reading about cows on the back of her picture card. 

I suppose she won't be a vegetarian.

Eye, Ellie

Breaking news - I am sorry to report that Ellie woke up this morning with only one eye open due to a matting, yellow, crusty goo all over her eyelid.  It was then a morning of scrambling.  Scrambling to call Atlanta, local doctors and anyone that has ever said "call if you need me".  Scrambling to clean up spilled orange juice, start a movie, doctor some of the other kids, get Jeff to bring Ellie's car seat home from his car and check the weather for our safe drive.

I am now happy to report the following:

1- A wonderful neighbor came right to our door in 10 minutes and stayed with the three kids (and the nurse) while I took off for the urgent appointment to see our local pediatrician.  Our new neighbor friend is a Catholic, homeschooling mom of nine who has visited and prayed for Ellie many times since we've moved here.  The kids absolutely loved her.  They sang, danced, played Clue and threw paper airplanes.  They weren't even that excited to see me come in with Chick-Fil-A.  The nurse and I then treated Ellie's eye (Ellie not a big fan of the process).
2- Even though Ellie does have "pink eye" which three of the "others" had in the house it seems to be her only symptom as of now (with the addition of a bit of irritability).
3 - The surgeon was consulted and he said for now he's ok with her still having the open heart surgery in the very near future with this current eye infection.  We are still waiting day by day to monitor her health before we're absolutely sure of a date.  But for the moment, this will not set us back 4-6 weeks like we were afraid of.

This is a fuzzy picture but it's mainly her left eye that is goopey and swollen.

 This is what Ellie sees all the time - we're still convincing ourselves it will help avoid spreading worse things to her.

On that note, it appears unfortunately that the damage done here today was an internal job.  How you have five sick people in a house and the sixth one not catch something seems to be almost impossible.

Case in point: this is little Julia after I got her eyes open this morning with a warm rag and applied some of Jeff's old eye drops.  Using those drops would not cut it for Ellie, the surgeon wanted an official report from an MD and I'm grateful they take it so seriously and I'm also grateful for how accomodating the doctor's office was today.

Julia wants her and Ellie's eyes to stop hurting.  

 

Monday

Yeah, Monday was hard.  Still lots of sickies, including myself having a bit of a sore throat.  All gloved and masked up I tried to care for Ellie while working through some staffing hiccups with the nursing agency.

By the end of the day Jeff said "what can I do to help" and he got his answer...take the three on some errands and don't come back without two large pizzas.

Notice the ketchup and tartar sauce for the giant bag of fish sticks we picked up over the weekend.  How have we made it through 8 Lents with children and never had them?!  Also notice the row of medicines in the background that are for the "others" as Ellie takes over the entire bar area.

 

Today's school was a little math, a little coloring and my latest trade of making complicated airplanes for Xavier.  This was my third, and I must say, most complicated aircraft.

Ellie was a tad bit fussy but nothing major.

Blood

WARNING - these pictures may not be for the faint of heart.  Consider yourself warned for the next few weeks for that matter :).

The details of the surgery are beginning to come together, although we don't have a confirmed date yet.  Part of what we've learned through the phone calls is that families are given the opportunity to give their own blood for their child's surgery.  So we said yes to that right away.  It took several days for it to be arranged for our local Red Cross to draw the blood, label it and transfer it to Atlanta.  It takes up to two weeks to prepare it after it's drawn so we had to do it quickly.  

Amazingly, God put Jeff and I together as the same blood type and we were both a match for Ellie.  Jeff is a veteran donor and was all set to go but at the last minute we learned he could not give because of his cold.

So I went as my first time ever donating blood.  I was amazed at the screening process.  The questions you answer about your travel habits, where you have been, what medicines you take and tons of other personal questions were quite thorough.  Be assured if you get blood from a blood bank you are in good hands!

My physical including a finger prick showed I was a candidate to give.  I watched two other walk-ins come in and share with the whole room they continue to get turned away for low iron.  I really thought that might happen to me but it was very high.

I was prepped, had a giant television in front of me and a crossword puzzle to keep me distracted.

Once we got started it moved right along!

 

15 minutes later, we were all done!  It appeared to be more than enough hopefully for Ellie's needs when she's in surgery.  There is no way to know how much she'll need but she'll have my blood first.

Thanks to my sister for watching the other kids while I went - taking them would not have been wise since they were all a little concerned that it was going to hurt me and look "scary".  Plus, I would have had a hard time getting them away from the snack table afterwords. I did manage to save them a few cookies to bring home though:).

Friday

Friday was like a "breathe" day around here.  The nurse was here all day and we were able to get the wheels turning again on some major chores while still taking care of a couple sick big kids.

Friday evening we even went out for a bit, just the five of us.  A first in many, many months.  We came home to find the nurse taking good care of Ellie.

Survival

This day is dedicated to my lifetime friend and cousin in California who is "surviving" her first few weeks with her newborn son.  I frequently borrow one of the songs played at their wedding reception "I will survive" to try to get through days like today.

No nurse came at all today, one delay after another with the back up plan.  Still some compromised immune systems and coping mechanisms over here for the little people, but we're moving in the right direction and Ellie is still very well.

A bath at the end of the day got us both in the right frame of mind.

Thanks Mom, that feels good. 

 

No, thank you Ellie!

The awesome news is that tomorrow is our first ever 12 hour shift due to the loss of hours today.  The nurse will be here 8:00-8:00!  

Willy Wonka the nurse

A sweet moment holding Ellie last night while relaxing after a long day.

Then an early start this morning with a phone call that the nurse called out sick.  Yesterday two new nurses trained to prepare for some vacation times coming up for the others.  But still with five to choose from, only one is available today and not until after lunch.  So we'll wait.  And watch a video.  Thank goodness Ellie is content this morning.  This was our house yesterday.

Pretty afghan huh?

Today, a scheduling conflict gave us a nursing shift from 1-8 pm!  The morning was long but incredibly smooth considering and it was so nice to have the help later in the day.  

This is how the nurse left tonight and the other three were virtually asleep too!  

Another man down over here - Jacob was not well today and had the same temp and symptoms Xavier had.  

Pray Ellie has a bubble around her!

Time together

We have enjoyed our time together these past few days.  Time celebrating with family (Happy Birthday Grandma), time healing from sickness (Xavier is taking some medicine), and time with our girl.  She's so fun to hold - she is the perfect size to carry like a sack of flour. I absolutely love holding her.  Speaking of, off to do that now :).

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.