Here and Now

Favorite new song!!! What an amazing message! This is one of the bands from our new church.

A Breath of Fresh Air....

2 Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The LORD has done great things for them.” 3 The LORD has done great things for us, and we are filled with joy. Psalm 126: 2-3

She used to be my middle. Now she is the second oldest and stepped right into

the responsibilities that come along with it. This girl keeps us laughing....

all day long!!

A couple of weeks ago we were talking about singing in the shower.

I told her I did not do such a thing and she said to me,

"Mom, everyone sings in the shower! Have you not seen Elf!!"

WHAT?! She acted quite serious as we rolled!!

I pray that she never looses the way she see things. So simplistic.

Such a breath of fresh air.

In Him,

E

My Warrior....

It is God who arms me with strength and keeps my way secure.

Psalm 18:32

(LOVE Target clearance. Today got this costume for $1.70- 90% off!! I had no idea who in the world it was until I asked my sister....who just happens to have 3 boys. And guess what? She knew instantly!)

In Him,

E

True Beauty...

"Each one of them is Jesus in disguise."

~Mother Teresa

(my middle. her soul is so quiet, so deep. yet her love for the Lord and His precious children

pours out and blesses all who know her.)

In Him,

E

The rest of the story.......

Yes, I realize there is a hair in the picture. It's not your screen but my camera lens.:(

Sorry I have been away so long, but I have been up to my eyeballs in this snugly, smiley goodness! Can you blame me?!?!

Not much of an update tonight as I am in the midst of some other stuff that has taken precedence. But I do want to share the back story of the song I posted earlier by Mark Schultz. This is taken directly from another website and was written by him. Pause here and run to get some Kleenex. I have read it through several times today and still can't make it without the rivers flowing!! You MUST read the 2nd to last paragraph beginning "Inspired by this family's story......". Have those Kleenex ready!!!!

“What It Means To Be Loved” is a song that basically wrote itself. I just happened to be in the room when God dropped it in my lap. Its genesis was actually from a story that my wife told me about a family that she’d worked with at the hospital.

The mother was expecting a child and was told that tests revealed health issues that meant the baby probably wouldn’t live long after birth. Although the doctors suggested terminating the pregnancy, the mother decided she would love the child as long as she could. I took those emotions and that unselfish commitment and poured them into the “What It Means To Be Loved” lyrics.

The song starts out:
For five months eight days
My wife and I had waited
Getting ready for our baby girl
But when he called the doctor said, “I need to see you”
And “Could you come in soon”
Something died inside of me to sit with him and hear
A test had said our baby may not live to be a year
And turning to my wife he said
What do you wanna do
She said…

It was at this point of the song when I was writing it that these words just came spilling out:

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
I wanna live every moment, until that day comes
I wanna show her what it means to be loved…

And I knew as soon as I hit this chorus and tears were running down my face that this is one I’m going to be playing for a long time. It’s the only song that I’ve ever played in concert where it got a standing ovation before the end of the first chorus was over.

To me, what the song says is that we as Christians are called to love. If that means loving a baby that’s going to be here for 7 minutes or 70 years, it doesn’t make any difference, you just wrap your arms around them and pour yourself into them.

I love the last bridge going to this:

Well ever since the day
We got to bring her home
She’s been out to prove the doctors wrong
You should see her now
She’s as pretty as her mom
And there’s a boy at the front door waiting just to take her to her high school prom
And he wants to give her the world
Wants to hold her hand

Inspired by this family’s story, my wife continued to look at the implications for our own family. She said, “Since you’re adopted I think we should adopt kids too.” I said, “Ok that’s fine.” She said, “I think we should adopt kids maybe with special needs.” And I said, “Ok, that seems like a tall order.” She continued, “Maybe someday we adopt kids with special needs that the doctor only knows they’re going to live for a year or two.” I responded, “Honey, why would we do that?” And my wife said, “Because before they go to heaven, I want them to know what a great Christmas is like and I want them to know what a great birthday is like and let them know that they were loved well before they get to heaven and realize that love. I want them to know that they were loved here on earth and celebrate them here.”

That’s the kind of wife I’m married to. These are the kinds of songs that come out of those stories. It’s a special song and I’m grateful for all the people who’ve walked through loving unconditionally. I hope the song means as much to folks as it does to me.

In Him,
E

I am still here.

I am here, though only momentarily. I hope to be able to sit down tonight and fill you in on what is going on in our lives. Until then, I just had to share this video. The story behind the song weighs heavy on my heart today for many reasons. Though it is sometimes against my will, I adore watching God work in my life and the lives of those close to me.
In Him,
E

HOME!!!

....and so happy! Details later.

PRAISING HIS HEALING NAME!!

In Him,

E

Rough night

An update- realized I hadn't done that in a bit.:)

Yesterday, little C was moved to the Cardiology Step Down Unit. And can I say that as happy as we are to be taking these steps toward home, I am so sad to say goodbye to our CICU team. We loved each part of the team this time around!! They took such great care of our girl!!

Sarah (our beloved CICU nurse!) transported C to Cardiac Step Down. As soon as we walked into the room, 4 nurses were at bedside reconnecting machines and getting everything situated. Before I could blink, one nurse proceeded to RIP the tape off of one side of Celia's face (to remove the oxygen cannula). Without ANY adhesive remover!! I was MAD and asked if they had any remover. I also slipped in there that if she didn't want to use it, I would. Another nurse opened the cabinet 10 feet from the bed to get the remover (yep, didn't even have to step out of the room to get it!) while the tape removal nurse walked into the hall for a minute. In the midst of chaos and me talking to our surgeon's nurse (you following yet?:), the tape removing culprit reentered and RIPPED the other side off......before I could even open my mouth!!! I said a few snippy things, and no, Dawn, I don't think she saw Jesus on my face at that moment. Of course, her little face was super red last night and still is today. I just don't get it! Take a perfectly happy, content baby and make her go into hysterics? When there is another option?!!

Last night was hard. She and I shared about 2 hours of sleep....total. We're not sure what is going on. Pain? Discomfort? Tummy? Reflux? Away from home? Mad at Mommy and Daddy?:)

She just had her chest tube removed along with her last IV. PRAYING that having the chest tube out will allow her to move more freely, breathe more freely and overall be a happier girl. Evidently, it is very uncomfortable having it in. Again, this is my baby who hardly makes a sound so hearing her cry for HOURS is so hard!! And yes, she has been receiving Tylenol with Codeine. She also just received a little Versed for the chest tube removal and is sleeping soundly.

We are heading down to Xray in a few minutes to make sure heart/lungs look good.

Phew! I am tired but PRAISING HIM over and over and over for a healthy, PINK baby girl!

In Him,

E

Quick update

Very quickly while we wait our turn to meet with the team-

*Remember her screaming and screaming last night? Because of the amount of blood and pressure pushing against her arterial line (IV that goes into her groin) while crying, it was ruined and had to be pulled during the night. Not good but not terrible because she would have lost it today anyway. The reason for it failing, though, is so sad. Prayerfully, they will not have to stick her again for any blood draws.

*She is now up to 20mLs per hour of formula and still no signs of reflux!!!!

*No poop since Monday. I am certain you all wanted to know that. Granted, she only begain receiving real food yesterday but we would still like to know that her plumbing is working efficiently.

*Just talked to nurse Sarah (our favorite!!), and she does have her for the 3rd day in a row! So glad because we are comfortable with each other and she knows our girl. Celia is sleeping peacefully now but we do need to figure out the cause of her fussiness. When Sarah got there around 6:30, her night nurse (also Sarah) was holding her because she was again pretty fussy. Talked to her a bit about pain and she "shouldn't" be in pain because she is still receiving morphine. Any insight from momma's who have been through this before? I suppose morphine could just not be very effective for her? Grasping here.

At this point in Charlie's stay we were preparing to go home. Can you believe it? His surgery was on Friday and we were home by dinner on Sunday- crazy!

More later. PRAYERS FOR COMFORT!!

In Him,

E

So sad...

Bad, sad night. Lots of screaming, tears and kicking from an angel who hardly ever makes a peep. Please, pray for her comfort.:( So heartbreaking!! And to feel so completely helpless.

But......you ready......she is being NG fed!! No NJ!!! And tolerating it without one single episode of reflux!! Now, granted she is only up to 15mL per hour but it is progress and her max at home was only 25. So, we are on our way!! Pray it works!!

If we could just get that pain under control and keep her calm.:(

In Him,

E

More pictures!!

Finally figured out a way to at least get some of the pictures from my camera to the blog. I will update the entire day later tonight. It is shift change now so we had to leave but you better believe I will be knocking down that door very soon.:)

Wednesday morning on the way to the hospital. She had know idea what was to come.:(

We have a picture of Charlie and hubby in front of this same goofy guy.

Lovin' on his girl!

Snuggling with Daddy before receiving her "goofy" meds.

Killing time and keeping me sane!

With oldest sister before surgery.

I had just seen her and the girls were waiting their turn!

UGH!! My precious, precious girl!!

This morning looking so much better.

Keep on praying!! She is doing much better this evening!!

In Him,

E

Self Explanatory

In Him,

E

PICTURES!!

****WARNING- Some pictures below are graphic.

These are in such random order. The picture program I have on my desktop at home is quite different from this one, so I am just uploading a few pics from our phone. I want you to be able to see who you are praying for.:)

We've been kicked out again because sweet C is getting a new neighbor straight from the OR.

This is our precious girl this morning! Such an improvement from yesterday.

Her crib this morning. The Love Letters you see are about 10% of

the Letters Celia received. Oh my heavens- you guys totally ROCK!!

Love poured out for our girl through these Letters!!!

Space is limited in the CICU so don't worry if

you don't see your Letter. We hope that once she is in a private room

we will be able to hang each and every single one.

Again, this morning just different view.

Look at that angelic face!! LOVE!!

This was right after surgery when she was still on the vent.

Notice the tear coming out of her right eye. Can you see it? Heartbreaking!!

And another post surgery yesterday afternoon.

LOVE YOU, PRECIOUS ONE!!!!

In Him,

E

PRAISES!!!

Just finished meeting with C's care team (cardiologists, nurses, respiratory therapists).

1. Vent gone- YAY!!

2. Glucose way down from 304 yesterday to 94 this morning. Elevated glucose is a common response that the body has toward trauma (surgery). Yesterday, it continued to rise so insulin was ordered.

3. Loosing IV in neck and several other drugs- milrinone, insulin and others.

4. Will place an NG and do a test run- only 5ML per hour. She was up to 25 per hour at home so this really is a tiny amount. BUT we need to see if her little tummy can handle even that small amount without refluxing because she has had no food in her stomach for 2 months now. PRAYING this will work so we can get rid of that darn NJ!!! And praying for no reflux as it is so painful for her even without her chest being newly open.

5. Her amazing nurse, Sarah, is back today!! Loved her yesterday and so blessed that she will be in charge of Celia's care for the next 10 hours! She has a 2 year old nephew with Down Syndrome who also had OHS a couple of years ago.:)

I'm sure there is more I am forgetting but my mind is focused on getting back in there to scoop her up!! Only 16 more minutes!!!!

In Him,

E

Breathing!!

Extubated around 1:45 this morning!! Our warrior girl is breathing on her own quite nicely!! She is much more comfortable without that darn breathing tube but still spells that break this mommy's heart. We are going to be able to be part of rounds this morning and actually sit at bedside with her team to discuss the plan for Celia today. This is new and not something we were able to do with Charlie (privacy for other patients). Can't wait to get in and hear what they have to say.....and say I want to say!:)

PRAISING HIS HEALING NAME!!!

E

It's Rough

Oh me. From 6:45-8:30 all parents are kicked out of CICU for shift changes and briefing. So you better believe that at 8:31 we were back at Celia's bedside. Her nurse told us that she had really been agitated and fighting, so they had to give her some more meds to calm her down. At this point, they wanted us to try not to touch her much nor talk to her. SO hard for the momma!! She was quiet and relaxed so I listened.:)

Around 30 minutes later, the respiratory leader noticed blood POOLING around and under her head!!!! OH MY HEAVENS!! It turned out to be no big deal- only a cracked piece of a connector to the IV in her neck. But this meant changing all of her bedding and washing her head......which meant moving her around......which meant stirring her........which meant a very sad baby. The silent tears. Just streaming down her face. No sound coming from that precious mouth (because she's still on the vent) but her mouth moving like she was crying. My heart wash shattering and I couldn't do a thing. After being cleaned up, covered up and situated, she calmed and rested fairly well for the next couple of hours.

I knew going into today that Celia's surgery and recovery would most likely be nothing like Charlie's for many reasons. He was a healthy baby with absolutely no feeding or lung issues going into surgery. Celia has severe reflux and aspirates, recieves all feedings through an NJ tube and is on Captopril to keep her lung blood pressure down. Celia's recovery has been COMPLETELY different from Charlie's. At this point, Charlie had been weaned off of the vent and we were able to hold him. We PRAY Celia will be off the vent sometime in the morning but there is no rush. And no, we haven't been able to hold her yet.

HARD, SAD, WONDERFUL, HEALING DAY FOR OUR GIRL IN HIS NAME!!!

More tomorrow- I am falling asleep while writing.

In Him,

E

Yay! Yay! Yay!!

Just spoke with surgeon. Our precious Celia's heart is whole!! Need to watch her left valve because of the reconstruction. It handles alot of pressure and combined with the scar tissue that may build up, it has the potential to cause problems later.

She is headed to CICU, and we will be able to see her in about an hour (1:30 EST). OUR GOD IS SO GOOD!!!

OFF HEART/LUNG BYPASS!!!

PRAISING HIM!!!! Off heart/lung bypass. Closing her up now!!!!

Waiting for surgeon to come out and brief us. Happy dance in HIS name!!!

On Heart/Lung Bypass...

Our angel is now on the heart/lung bypass machine and the repair has begun. She is tolerating everything well. We lay her life in HIS hands!!!

Began....

Just got a call from the OR. Surgery has begun. All IVs, monitors and supporting

machines are in/on and she is doing well. TIME FOR HEALING!!

Lord, please heal our baby girl!