Nature Walk

This morning we went for a walk!  I convinced the older three this was strictly for exercise so I could stay firm on making it short!  Indeed, we were all exhausted! 

Well, Ellie didn't work tooooo hard I suppose :).  This stroller was special given just to her when we were pregnant - the miles that have been put on this baby in hospitals alone!  Now it's great to get outside and see her stretching out and taking in the fresh air!

 

 A quick stop at the swings.

 And look at the blessing we received!  Can you see his head poking out right between the boys' heads?

 An exercise station got the hearts pumping!

So thankful we can get out now and all that's in the bottom of the stroller is some keys and a blanket.

Pukies

Ellie has a cough this week so she's a little gunky in her chest.  With that, when she coughs she starts this vicious cycle of choking up mucus then gagging on it and puking.

I had just cleaned up a throw up from a little cough while she was rolling around when I carried the basket of milk and towel back to her bedroom to change her shirt.  Mid-hallway she started up again so the basket caught the carnage.

Some how an innocent plastic ice cream cone became a victim.

Check please!

"Yes we take credit cards, thank you for your business!"

Photo credit: Xavier

Ummm...not safe

Wow. I vacuumed, Ellie was near the cord, I unloaded the dishwasher and turned around and found this.

I believe she must have some kind of invisible rod through her core that allows her to spin like a rotisserie chicken.  No more house chores for you miss! 

By the way, if you click on the picture it should make it really large and you can see her new top tooth!  

Goodbye Mullet

The girls both got haircuts this weekend!  

Ellie held out as long as she could seeing if the mullet for babies would catch on. We were both very surprised that we didn't start seeing it in baby magazines.  So we called it quits and went for something a little more traditional.

Julia got a trim too.  She was happy to hold Ellie in some new cute clothes!

A change of hair accessory and she was back to rolling!

The lone syrienge

Here we are...the end of medicine as we know it.  After two weeks of weaning and cutting down the dose, Ellie's last medicine was drawn up and shot into her feeding tube. 

It feels so good to not administer the medicines any longer and feels even better to realize it's because she no longer needs it.

Star student

Ellie showed up at school once again!  I really think she's beginning to be able to go where she wants to!  This seems to be her favorite spot.  It takes two turns for her to get there and then she just stays there perfectly still and content!

Later, she made another complete arch and made it to the pile on the floor after we were done with school.  I think something I said sounded strange to her so she decided she better check those facts. 

Little helper

The toe is feeling so much better than yesterday!  I think I owe it to my big helper Ellie.

She shared her morning ice cream with me.

But she's quick to tell me that I've had enough and she'll be eating the rest.  "Step away Lady."

Then she helped me with some laundry. 

She even listened in on some school this morning and was a very quiet pupil. 

 "Hmmm...is that so?  Very interesting."

 "Glad you feel better Mommy!  Excuse me, I have places to go now."

Meanwhile, the boys were doing what they could to break a bone of their own.  Somehow the bicycle helmets make me feel better about the tackling.

The oxygen has left the building!

We know a lot about oxygen now in our house!  We know about concentrators, different sizes of cylinders and their names, cannulas, regulators, tubing, humidifiers and turn keys.  After 15 months and clearance from her doctors...it all left our house!

Bye-bye hissing concentrator that ran 24/7 and beeped when the power flickered and made whistle sounds when the humidifier was out of water and produced heat and dust on whatever it was near.

Jacob helps wheel a giant tank out the door.  These tanks accompanied us on many Atlanta trips for check ups.

We used perhaps close to 100 of these little tanks over the year...the company constantly came out (rapidly) and replaced them when they were depleted.

Two hilarious stories about the oxygen in our life -

One was the night we went to the ER in town then were transferred by ambulance to Atlanta's ER where we stayed for 4 hours and were released at 11:00 at night.  In some confusion I had sent the portable tank home with my mom who had sat with us in the local ER because I was sure we'd be admitted to Atlanta.  So when Jeff got the call that we were not being admitted, he jumped in the car, my sister went to sleep on our couch and he was almost to the hospital at 1:00 a.m. when I called to make sure he had gotten the tank from my mom.  The answer was no.  So painful a phone call.  Luckily, the O2 company is amazing and agreed to meet Jeff halfway in the middle of the night.  (no, the hospital does not loan out oxygen tanks - I tried!) So at 2:30 he pulled in with the goods and scooped us up and we headed home.  About an hour later, Jeff was in need of a coffee refill so we stopped at an exit with one gas station and one red light.  When waiting to turn at that light we noticed there was only one car around us and that was behind us.  So we agreed making the turn on a red light would be justified in these circumstances.  We. Were. Tired.  And Ellie's time on oxygen tanks is always limited.  Once we made the turn, we were then introduced to a nice, merciful, compassionate man who gave us this nice memoir of our night.

Luckily, it was only a warning. Our bank account did not need the hit of a traffic ticket!  We got home safely and it definitely "woke us up" in more ways than one.  The kids love this story.

The second story was our July hospitalization - we were there three whole weeks.  We had plenty of oxygen with us for the drive home and we were READY to hit the door when we got the word we were being discharged.  Going over the checklist with the nurse, we started to unlock a new tank but could not find this magic little "key" which is actually called a wrench that opens a new tank.
And again, the hospital could not help because all their tanks are different than what home supply companies give you.  So we had to ask an Atlanta company drive to the hospital and loan us a key but first had to go through insurance to get them approved!  The nurse let us stay in our room with our luggage all packed and Ellie just sitting there looking at us like "can you people puh-lease get it together?!"  I now have three of these wrench/keys and am going to somehow make them into Christmas ornaments and hang them on our tree.

So we are all taking a deep breath of ROOM AIR as they say that this part of our lives is complete.

Oops

Guess what this is an x-ray of?

Not Ellie this time!  It's a mom who hastily shut the door of the room of her napping baby to run and see what the yelling was about in the other room and compressed her pinky toe resulting in a little crack in the bone.

It's not that bad - just hard to walk on. I'm thinking of telling the kids though that the doctor said I need to lay around all day and have them just bring me their school work and trays of food and magazines.  If I never post about that happening, it didn't occur.  But if you see pictures of that tomorrow, I'll be sure to disclose how I pulled that off.

Happy Birthday Holey Ellie!

One year ago today we were in our second hospital stay and were trying desperately to keep up with the news we were being given, never mind deliver that information to loved ones.

So, Holey Ellie was born and it has blessed our family tremendously.  We love communicating with all of you so quickly and easily and love that you keep coming back to check on little Ellie.

So here we are the day before we started the blog in 2012.  This was a particularly difficult day with a bad IV spot and a fussy girl and I was wishing I could get out requests for prayers and updates quickly and easily.

On that day we took a cute video of Ellie in her hospital bed.  I hope you can notice how she's breathing - that used to be how she breathed all the time.  What a difference a year and a closed cardiac defect can make!

And to mark the anniversary, I thought I'd put out a video of her today.  Here is Ellie last night.  We're grateful you've all been following along and praying for her all this time.  Oh how many prayers have been answered - even if the prayer was simply "God, give them strength."

What we've learned this year more than anything is "eye has not seen, ear has not heard, what God has ready for those who love him".  Julia randomly opened the book to sing this song as I starting to record Ellie rolling around so I am surprised I kept it together enough to sing.  I apparently was the only one going for verse two and Julia gets her pants stuck on the knob of the cabinet door.

Detour

Something else to celebrate today other than our girl's health.

After looking and looking online for a bathtub I was determined to get for Ellie, we finally got it!  (thanks for your help Colleen!)

It was a bathtub chair I'd seen years ago when Jacob was a baby. It sat up in the tub and the child sat in it just like a chair.  It was very simple.  But you had to be older to sit in it so we got the ones that take up the whole tub.  Here is Ellie at one month old in her giant bouncy seat bathtub.

Unfortunately, this bath tub seat I speak of is discontinued due to a safety recall.  Now before you go forming too many opinions about our judgment skills, sometimes those recalls just don't matter for what you're trying to do.  I wanted a bath Ellie could be supported in since she does not sit yet so she could join the other kids without taking up the entire tub!  So after refusing to pay high dollar for one on ebay, we actually found a local one on craigslist!  The phone number turned out to be a thrift store in Atlanta 10 minutes from the hospital!  We had it held for us and Jeff drove there while I pushed Ellie through the halls from one appointment to the next.

What we came home with (after bleaching and scrubbing and checking screws) caused much excietment in the house among our four.

 

Four clean children are now sleeping...and all in good health.

Goodbye

No, not goodbye to you all.  Hello, in fact.  How are you?

Today surprised us - like everything else with Ellie...you just never really know.

She did really well in the x-ray chair during her swallowing test.  She ate a few bites of food and took some water (mixed with white chalky barium) and it all went down the right way!

Then we had her ultrasound on her heart and it looked great - her pulmonary hypertension is under control after her heart operation!

And lastly, we spent over an hour in her appointment discussing her progress with her cardiologist, pulmonologist and nurse practitioner.  Ellie looks FANTASTIC!  Alleluia - she can come off of her remaining two medicines!  A dream come true!  We can finally see those lips without dry peeling skin all over them.

And here is the goodbye - the folks that we've seen since day 14 of Ellie's life told us...we don't have to come back to Atlanta any more.  The clinic site here in town can forward her tests and progress up to them and they told us we didn't have to necessarily come back to see the team up there.

What a team they are indeed.  Some tears were shed - just by me of course.  But I couldn't help it.   Goodbyes are hard, sad and confusing.  They know a lot about our family and we even know a lot about them.  We know their kids' ages, we know two of them are also Catholic, we learned about some interesting vacation spots we'd never heard of.  We had some wonderful laughs along with the tears this past 16 months.  They are special people and they took excellent care of our girl even when our brains were too foggy to even know that what they were doing was saving her life.  I sincerely hope they feel fulfilled at home every night because they have been instruments of God for Ellie.

Now that I've given you all the nice, shiny, polished, glossy news - here are some realities that are well...real.

1. She did swallow some water into her lungs when I showed them how I put my straw in her mouth and let water flow into it.  It catches her off guard and makes her choke.  They said don't do that anymore. O.k.

2. Ellie's heart still has a small leaky mitral valve. While minor mitral valve regurgitation is relatively harmless, severe leaking can lead to heart failure if untreated.  Ellie's is mild.  All we'll do is go annually (we think) to her local cardiologist to keep an eye on it and check her heart repair and that will just be part of  Ellie's routine.

3. It will take one month to back off the two meds - we came up with a schedule of weaning.  We already started tonight though and it was nice to not give as much!  I better call the supply company to stop the package of 200 syringes that are being delivered this week!  What a fun call that will be!

4.  Her weight is down.  At home, our nurse and I had noticed the more we fed her by mouth the more it made her throw up and loose all those calories we gave her in her tube.  So we are backing off the oral feeding and making sure we stick to the number of ounces she needs per day going into her tube.  She needs her nutrition to grow and be strong!

We're still adjusting to the reality that we don't have to travel any more, as far as we know now.  Like I said, it was a surprise probably because we really just didn't have very many expectations.  I had really hoped the medicines would be gone soon so that is just amazing and wonderful!  Thank you Lord!

Wonderful day!

Ellie would like to tell you she and her mother are too tired to type the wonderful news we got today in Atlanta!  "Stay tuned" as they say!

Goodnight!!

Getting ready

Ellie practiced a few bites of chow tonight to get ready for her swallow test tomorrow.  She ate two bites, then gagged and started to dry heave but luckily nothing came up.

But she was so happy about it!

Tomorrow we're taking with us four different foods (thank you Aunt Colleen for leaving us with some yogurt!) so we'll see what she does!  We'll send out an update as soon as possible.  Thanks for your prayers!

Doing great

Ellie's doing great and feeling much better!  She's rolling around, smiling.  We've tried feeding her some food each day but it usually goes down the wrong way, makes her gag and she throws it up.  But she does not seem to really be bothered by it!

Please keep us in your prayers, a big day is coming up Tuesday.  Ellie has a check up in Atlanta (it's been since May since we've been there) and we're hoping for all sorts of good news!  Weaning of medicines would be great, the swallow test showing no aspirating when she eats, her hypertension looks better on her ultrasound and her weight is ok.  If your last name ends in A-K, pray for the first two things...if it ends in L-Z pray for the last two :).

In other news, Xavier and Julia got married today. They wanted the moment captured on camera.

New bed?

In a few weeks Ellie will be getting Julia's old crib.

I think it's time!

Push ups

I tried to devise a little exercise tool for Ellie to work on some arm strength.

  It worked for a minute.

 And then she rolled!

 And then it became a place for sisters to meet.

School

School has officially begun around here!  Ellie likes rolling around the "drop zone" where I drop all the books that we complete each day.

We try to avoid her rolling around too much when we have multiple puzzles going but she's not happy for long in the seat unless someone is entertaining her.  Julia usually takes that job.

Xavier took over for a bit and showed me this picture he took.  She is a sweet thing is she not? :)

Football and family

Tennessee Vols, Notre Dame Irish, Georgia Bulldogs...and a lot of potato chips.

Papa the ND alumnus.

The fruit of UGA alumni!

Aunt Colleen here to entertain. 

The best seat in the house.