Easter

Ellie is our life-sized Easter egg.

Walk

A beautiful Holy Saturday here!

Ellie had her third walk in our neighborhood in her little life today!

The first one was when she was about 10 days old and we didn't even live here yet.  She was tube free due to our lack of knowledge of her health issues and I remember we were all hot and struggling and....adjusting.

The second one was the week after we moved in and she had all kinds of tubes and it was all kinds of hot and there were all kinds of adjustments to deal with!

Today she was free from oxygen and happy as can be and the weather was crisp and beautiful!  Maybe we're somewhat "adjusted" but let's not put the stroller before the baby.

Easter

A greeting from Ellie (and Pope Francis :) ) on Good Friday.

Slow morning

Ellie did a 90 degree turn in her sleep - I think she liked the way her feet felt against the side of the bed!

On the floor playing with her baby - a towel to support her back so she can build her side muscles. 

"Good morning, I'm still half asleep."

"No more pictures please."

Push Ups

Some therapy really worked our girl today - trying to get her to bear weight on her arms.  She did great!

Bunny

Ellie got a package in the mail today - her own personalized Easter bunny basket!

Tastes good even without the candy in it! 

"Hello Bunny - I will soon be filling you with sweets!"

For now I will take a break from my baby push ups.

Mass

A little nap before mass today.

Feeling her breaths on my face. I counted them and timed them in a minute.  At her worst health, Ellie was breathing 105 times a minute.  Normal for her age is somewhere around 20-40 per minute.

Today she was 38!!!

Ellie goes over a checklist before we head out.

Seat belt - check.

Cute shoes - check.

Sweet smile - check.

Spring, school and sleep

Our first tulip has bloomed!!!

 A lap desk makes Xavier very happy.

Ellie is getting so big she's starting to "slump" sideways in her swing!  We have to keep it on low now to provide very little rocking for her so the momentum doesn't help her slump even more!  Go girl! 

Oxygen

I guess it's a good thing that your fourth child has oxygen pumped into her nose when her siblings think this is absolutely hilarious.  I guess Holey Ellie has a Holey Blankey.

Toys

A new giant butterfly toy to hold in the swing.

New socks with toy rattles on them for her to grab and play with.

Surrounded by toys during a trip to the boys' room.

Big brother #1 and toys.

Big brother #2 and toys.

 

Camera girl

Not until I checked the camera late in the day did I notice I had a 3-year-old on a photo mission today.

First she captured Ellie on the floor after we noticed her feeding tube had come unplugged through the night (this is maybe the 10th time now in a year?) and flooded her crib linens.  Thank you Lord for our nurses.

Julia must have then been curious what Ellie gets to see from the floor. 

We then have a break for a couple self-portraits (attempts). 

She apparently ended her photo shoot at the computer.

St. Patrick's Day

Our little four-leaf clover today rolling around.

Daddy feeling "lucky" to hold his girl. 

 Happy little shamrock!

 With some back support, a cute little sitting Ellie.

 

 

The four in green. 

A visit from Grandma makes Ellie feel lucky! 

Mass

Ellie so happy to join us for mass!

She did great through the whole service and fell asleep toward the end.  It was such a gift for all six of us to be together at church.  Thank you God!

Weekend

Happy Saturday morning to you!

Getting ready around here for Ellie's second trip to church later today!

Trying to figure out what to feed her and how much - still tweaking all that.  Sometimes she spits up, sometimes she doesn't.  Sometimes she takes a bite of oatmeal mixed with milk, sometimes she lets you know "she don't like it" as Julia says.

Today I do have some ripe bananas that I might see if she takes off a spoon.

No pictures to share, maybe later!

Mass seat

I wanted to post this mostly as a memory for myself so I can reflect on this later but I know most of you can appreciate these types of experiences life holds.

Ellie was born on Tuesday, April 17, 2012. Sunday, April 22, 2012 our family went to mass with five day old Ellie and it was...rough.  We were barely holding it together physically, emotionally, mentally.  By we I mean mostly me :).  Anyway, we got a perfect front row pew on the side, right next to the door and I sat on the end.  Ellie was a curled up ball in the sling with no feeding tube, no oxygen and not a single surgical cut, blood draw nor IV had touched her skin.

Fast forward 11 months later and last night by complete coincidence Jeff chose the same exact pew for us.  I of course sat...in the same seat on the end.  This time she was sitting up in the sling looking at me and smiling.  She once again had no tubes (except she had a red line on her cheek from where I had just pulled the tubes off her face and I had disconnected her feeding tube hidden under her clothes) but I felt like we were all on a different planet from that first time.

Of course, we're not where we want to be...but we're not where we used to be.

Our day

What a day!  HABEMUS PAPAM!

Kids watching the television WAY to closely.

Two nurses training.  Lots of laundry. 

All of this and a bath made Ellie very very sleepy! 

To celebrate our new pope - we all decided to go to mass and then a soup dinner following.  We had a great time!

First as we loaded up the van Jeff started using "Habemus" (we have) when at all possible.  He started with "Habemus Full Van". 

Julia in the special seat to be able to "touch Ellie". 

Xavier was blue that he could not see her.  He then made it to Jacob's side where Jacob gave him some kind of strange but loving brotherly "neck hug" and we decided Xavier would get to sit next to Ellie at mass.

Ellie did so great during mass!  She made very few quiet little noises but they were sweet little sounds.  So many people that have been praying for her were so happy to meet her.  What a wonderful gift to have an outing as a family!  We can't wait for the next one!  Most likely mass this weekend - yay!!

Doctor visit

Some details from our doctor's visit yesterday!

Ellie slept most of the way.

Getting situated in the room - it didn't occur to me until later that we were dressed alike! 

Medically speaking in terms of her heart surgery and recovery she is doing great!  She's moving right along with growth, energy and healing.  There is one little thing they are watching, which very commonly heals with time but it's a "new" thing to follow now.  Another little part of her heart is still leaking blood into the lungs, it's called the mitral valve.  It was a part of the original defect and they did their best to repair it but it's not perfect by any means.  Anyway with time we pray it will reconfigure itself as it adapts to the new design of the heart.  Some of the medicines she's on will continue to help pull some of that fluid off of her lungs that's still there due to this leaky valve.  There are valve replacement surgeries but we're hoping to never have to go there. 

The best news is that she can start having little breaks off oxygen during the day!  About an hour at a time two to three times a day!  Then after that we'll need to perform a sleep study on her to see if she drops her oxygen levels at night and when napping.  If she passes that then she can come off the oxygen all together!  Exciting to think about.

So to celebrate, she accompanied me to the boys room to tuck them in and do a little laundry.  She tried to help some too. :)  No big plans yet for trips or anything but maybe she'll soon make it to her first mass since she was a week old!