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!

She's in

We handed our angel over around 8:20 this morning. I HATE IT!! I felt as if my heart was ripping out!! God answered a prayer of mine and allowed my favorite anesthesiologist to be with Celia all morning!!! Thank you, Jesus!! We were able to place our angel directly into her arms, and she held her like she was her own.

Saw the surgeon around 9- he was heading back to scrub in.

Surgery should be officially starting now (9:35EST).

PLEASE PRAY!!!

It's time....

Photo taken when Celia was almost 4 months.

Courtesy of my dear friend, Natalie Howell of Natalie Howell Photography.

And we're off. Headed to the hospital. PLEASE PRAY!!!

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

Psalm 18:32

In Him,

E

9 Hours and Counting.....

*Ugh! No pictures tonight. Computer not cooperating!*

Oh my, what a day!! 6 1/2 hours of preop!! Oh yes!!

But first, I have to tell you this. Hubby, Celia and I were hanging out waiting for yet another nurse. Or doctor. Or somebody. There were some big windows in our room that overlooked some sort of atrium. Celia and I decided to look out for a bit just to people watch. I noticed a room called "The Voice Provided by the Ryan Seacrest Foundation" where lots of people were hanging out. And lots of flashbulbs were going off. Cool. Then a nurse walked in to go over a few more things. I handed C to hubby for a bit then started looking out the windows again. Wait. "Honey, that looks like Casey from American Idol." Weird. Oh wait! "That looks like Lauren...and Scotty....and Paul!" Yep, the top 11 American Idol Contestants were here for a "meet the kids and cheer them up" session! Celia ALMOST had her picture taken with the top 11 American Idol Contestants, but we had to wait too long for the next professional to see us. Can't you just see it- our precious 11 pound (yes, she's 11 pounds now!!! Woohoo!!) peanut smooshed in between all those singers. Lauren was hugging everyone- what a sweet girl she seems to be.

Okay, more about the day. Can you say LLLLLOOOONNNNGGG?!?! What a trooper Miss C is, though. Unless you are trying to perform a pre-surgery echo. Evidently, she has grown out of her love for those tests. Or she just wasn't too fond of the tech today. She screamed and screamed!!! They ordered a sedative (ugh!! Can't stand them!!) because there didn't seem to be any way to complete the test on a screaming octopus! While we were waiting for it to arrive, she fell asleep and slept without drugs through the rest of the echo. Thank you, Jesus!

After the echo, labs and xrays, we headed back to our preop room, dropped off all additional paperwork and headed out to find some lunch. Yes, lunch at 3:30. We have since landed at our beloved Ronald McDonald House in preparation for a good nights sleep.

Tomorrow. We have to be at the hospital by 6:15, and they will take Celia back around 8:15. Surgery should last until after noon, and I will be updating often throughout the day. Specific prayer requests-

1. Celia's strength both tomorrow and during the entire healing process. She will have to be on a heart/lung bypass machine for a good portion of the surgery. For those of you wondering, she has a total AV Canal Defect (2 ASDs and 1 VSD) as well as a PDA that will not close on its own. Also, both her tricuspid and mitral valves are compromised because of the AV Canal.

2. Feeding. Celia still suffers from severe reflux and still aspirates. We spoke to the team today at length about how to keep it at bay during and after surgery. And the conclusion? Take it as it comes. Hmmm....not what I wanted to hear exactly but I have faith in HIM who holds our daughter always!!

3. No infection!! No infection!! No infection!!

4. Dr. Kirshbom, our heart surgeon, and the entire medical staff assisting. Dr. Kirshbom is the same surgeon who performed Charlie's surgery, and we have such respect for him and the gifts God has given him. It is such a blessing and answer to prayers for us that he is the one God has chosen to help heal our girl's heart.

5. Our kids back at home and those caring for them. We could be away from home for a week or so and pray for each of our kiddos to feel loved while we are gone.

And please, pray for us as we prepare to hand our precious girl over to hands we are sure our Lord is guiding!! I stand strong in that truth tonight and cannot wait for her heart to be whole!!!

In Him,

E

Painting Fun and Flip Floppin'....and turtles!

Now, how's that for a title?!! Creative huh? Not hardly. No creative juices flowing here tonight. I feel like my brain is mush.

This is what happens when one certain girl has a great time at her brother's expense!!

He had no idea that I was taking a picture of him sportin' a snazzy mustache!!

Meanwhile, this treasure snoozed.

He LOVES finger painting.....and tasting!

Great OT!!

And guess what I found when I returned to the room earlier in the week?

She has done this several times in the last month but nothing consistant....yet.:)

And the sweet baby turtle that joined our family for a few moments. She would have loved to have kept him.

So, not more than pictures today. Remember, mush.

In Him,

E

Her Hero

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I sit here thinking and praying tonight about my life. My cushy life. Many days I don't have a moment to sit down. It's taking care of our home, homeschooling and loving on my kids. My healthy kids. Moving and moving with brief moments to sit and rock. I find myself complaining and grumbling. Or always thinking about the next thing I have to get done. Cleaning. Therapy. Cooking. Guitar lessons. Picking up farm animals. Then I think about Courtney, and I sob.

Courtney. A mother who rocks and rocks and rocks all day long it an attempt to comfort her son, Tripp. Tripp. Her Hero. A Hero who suffers like NONE of us can even imagine. The pain is like nothing we will ever experience. Tripp. The little boy who inspires so many and is moving lives for HIS glory!

Courtney has literally given up life as she knew it only 2 years ago to care for her precious son. Yesterday I read a poem Courtney wrote to God. With tears flowing uncontrollably, I handed the computer to my daughter. And she, too, began sobbing. Words no mother should have to write.

Please, stop by Courtney's blog. Read her poem. Read about Tripp. Look at his pictures.

PRAY!!!

Pray for God's perfect will. Pray for Courtney's peace. Pray for comfort for Tripp. And join me if lifting Courtney's arms.

¹² When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset. Exodus 17:12NIV

I am so burdened for this beautiful family tonight. May God HEAL precious Tripp in the way only Our Father can. May he be whole and pain free again. And may Courtney feels HIS love and comforting arms surrounding her each and every day.

In Him,

E

NO SURGERY TOMORROW!

No surgery tomorrow. Several babies were born this past weekend that are much more critical than our Celia. So.....surgery has been rescheduled for next Wednesday, July 27th. Please, pray for the new little ones who are awaiting their miracles. Tomorrow will not only be a hard day for them but for the mommies and daddies involved, too.

In Him,

E

I NEED HELP!

When Charlie had surgery, the girls and I made some super cool shirts using his picture and a scrapbooking website. We were able to print out our creations onto ironable (is that even a word?!) paper and iron them onto t-shirts. Viola!! Charlie Warrior tees for surgery day.

Now, Celia's surgery is in 5 days and I cannot find a site that allows me to create something special......for free! We were planning on making family tees this weekend but my plan may get tossed out the window if I can't find someone to save the day. You?!?!:) Anyone know of a great site? Remember, "free" is the keyword.

I am also looking for someone super creative (and ALOT more knowledgeable than me) about making blog buttons. A "Pray for Celia" button like Charlie's to the right that people can grab and share. THANK YOU! And maybe a printable prayer card? Please. You think I am high maintenance, huh? All for my girl!

In Him,

E

Where's Charlie?

He has been compared to all 3 with his new glasses on. Not sure I'm diggin' them. They don't stay on very well even with the behind-the-head strap tightened all the way. He is a master at removing them. Looks like we'll be getting even more new glasses. UGH! These are virtually indestructible. And I have a destructor on my hands.

In Him,

E

Celia's Story

Her eyes- the most beautiful shade of blue.

She is simply HEAVENLY!!

I continue to receive questions about Celia, and after rereading the pages of this blog I realize that I never really shared how God placed her in our lives. My prayer is that HIS HEART is evident through our family and the treasures we continue to receive yet are so unworthy of.

This picture cracks me up. She loves to suck in her lips and this is right after she was doing it. Notice no tube but a red place where the tape should be. She was in her carseat on the way to the hospital for tube replacement.:(

Basically, God knew about her and put us together. Really.:) We were not pursuing another adoption at this exact moment but were praying for His guidance and clear voice when it was time for us to move forward again. And He knew that we should have as little time as possible to think!! Celia was actually 2 days old when we found out about her from someone who knew someone who knew someone who knew of us.:) She got my number from Charlie's therapy center and called my cell completely out of the blue! Her birthmom, R, was very young and had no prenatal diagnosis. The fact that Celia has Down Syndrome had NOTHING to do with her decision- I want to make that absolutely clear. There was an adoption plan in place from the very beginning but things fell through when the diagnosis was made. I was able to speak with her birthmom on the phone that very first night (Thursday) and we met her at the hospital Friday about 2 hours from our home. I will never forget the words that my dear husband said as we left the hospital that first evening. Overwhelmed with all sorts of emotions I looked at him and said, "So, what are you thinking?". And he said back to me, "I think we just met our 5th child." God knew.

Celia spent 11 days in NICU before being discharged into our arms. During those days, we made almost daily trips back and forth from home to hospital. Long drives filled with prayer and much talking between hubby and I. One Wednesday was planned for her birthmom to sign. We planned to lay low that day and not visit the hospital thinking that she would want some time alone. That morning I received a call from R asking us to come. She wanted us to be with her when she signed. As in SITTING BESIDE HER!! Thank you, GOD, for those moments with R. Thank you for allowing us to be a part of her healing. I feel as if I was able to witness a glimpse of what our Father did for us through Jesus. The act of a mother releasing her child. Heart breaking and so incredibly selfless.

The evening of discharge Celia's birthmom walked us out and watched us drive away. Tears, oh my! We do still have occasional contact with her and have seen her a couple of times in the last few months.

Looking up at Mommy!

Headbands are a constant accessory these days to help hold her tube out of the way. Not a favorite of mine but they serve a purpose.

God continues to use each of my children to teach me such different things. And our perfect warrior Celia fights on. With all of her might she gets through each and every day. She shows us (and the nurses at the Children's hospital:) over and over how physically strong she is. But with every poke and taping and reinsertion of her NJ tube, my heart crumbles a little more. It is so hard to watch. She fights and cries more and more. In her 4 short months, my girl has taught me more about what it really means to be strong than I have learned my entire life. STRONG! She is my tiny hero!

You armed me with strength for battle; you humbled my adversaries before me.

2 Samuel 22:40 NIV

In Him,

E

13 Days and Counting....

Surgery date- July 20th.

Yep, that's the day we will hand our precious baby girl over to the surgeon whose hands will be guided by Our Father to mend her heart. I hate these days leading up to surgery. I find myself repeating "total reliance" over and over in my head all day. That's hard for me. Total reliance. I am soaking up every single breath of her's and staring into her brilliant blue eyes every minute that I can.

I won't lie. It seems like this time around is harder for me. Is it because I know what lies ahead for her? Is it because she has so many other medical issues and is still so tiny? Who knows. I do know that many tears will be shed and many prayers will be prayed early in the morning on July 20th.

These past few months have been somewhat of a blur, and I can't remember how much I have shared about our angel. Obviously, she has Down Syndrome.:) She also suffers from reflux thus one of the reasons for her GI issues (I will elaborate more in a minute). Her heart- Celia has a total AV Canal defect which seems to be the most common in children with DS. Charlie's was not an AV but instead a Gerbode Defect. Look it up- what are the chances?!:) Celia's PDA is also very large and isn't closing like we hoped. So, what does this mean for surgery? There will be some pretty major reconstructing going on. Her main hole is HUGE! So large that when the hole opens, it encompasses most of all 4 chambers of her teeny heart. Because the hole is so big it also affects both the mitral and tricuspid valve. They will both require some work to get them properly working again. And the PDA? The surgeon will close it for her. In theory, Celia should be in the hospital for less than a week, but we all know how that could change at any moment.

GI- Reflux. Yuck! Not yuck because I don't like being spit up on all day but yuck because my heart breaks everytime she does it. For around 3 months, Celia had an NG tube. Not fun for her, but at least she was allowed to eat as much as she possibly could orally for 20 minutes. I could also reinsert the tube if it came out.....and it did come out! She was never really a "spitter" but we knew when she was refluxing and occasionally something would come out. Early May we had a swallow study done and discovered she was aspirating. NPO- no per oral. That's right! I had no idea that morning would be the last time I was able to feed her a bottle. I would much rather be spit up on all day long than not be able to feed her. It breaks my heart. At a routine GI visit near the end of May, I expressed my concerns about her color changes. Not a good sign when your baby turns white/grey/blue around the mouth. Since the NG tube was in her stomach and food would collect there, Celia was able to continue to reflux and began aspirating (color changes because she couldn't breathe) on that formula instead of just oral feeds. In went the NJ tube. The NJ stinks because if it gets clogged or comes out, down to the hospital we go. And we've been.....quite a few times.....over an hour away. They know our names now!!:) And that's where we are today. It all began because of her reflux and poor weight gain due to cardiac issues. I am thrilled to say now that our sweet, sweet girl has hit the 10 pound mark!!! And yes, she is about 4 1/2 months.:)

Please, join us in prayer for our Celia. She is about to enter into battle and could use many warriors standing around and with her. If you would still like to send her a Love Letter, email me privately and I will share details. THANK YOU to each of you and your children who have sent such beautiful scripture, prayer and pictures for us to hang in Celia's room. (Mattie even sent one himself!!:) And most importantly, thank you for loving and praying for our girl.

In Him,

E

MUSIC!!

Hands down two of Charlie's favorite songs right now. He goes absolutely nuts every time one of them comes on!

Surgery update in a bit.....13 days and counting.
In Him,
E

Common Objections to Adoption

THANK YOU to those of you who let me know that this video was marked private. I had no idea. Click here to be lead back to Youtube and watch the video. And again, after watching come back here and tell me what you think.
In Him,
E

Down Syndrome Awareness

I have shared this video before but just absolutely love it!! Enjoy!
In Him,
E

URGENT ADOPTION SITUATION!!!

2 day old baby boy with spina bifida. Needs committed family now!! Please, read more here.

Are you REALLY ProLife?

I have said this before, how can one be ProLife but anti-adoption? Or at least not willing to pray about and open their hearts to children without families? Or pray about and ACT UPON aiding in the crisis? How can we truly be ready for the abortion law to change if we aren't caring for the children already here? Who will care for the millions of children aborted every year?

The following was taken from an article on the Orphan Justice Center blog. Note that the first paragraph is talking about entire congregations not individual Christians. Mind boggling and sad. I encourage you to read the entire article here.

"At this time, a very small percentage of the church is adopting the fatherless. Those children whom the world has named “unwanted” have not been received by the Church either. Currently, the number of Christian church congregations in America outnumbers children who are waiting to be adopted from U.S. foster care by about a 3 to 1 ratio. This means that if each congregation adopted even one child, there would be no orphans in America. God has given His church the charge to care for the oppressed, the poor, and the orphan. These statistics yield disturbing evidence that the church, as a whole, has not heeded His Word on this issue. Currently, the government is raising the fatherless, though the church was given the mandate.

God has defined pure and undefiled religion as caring for orphans and widows (James 1:27). But why? Why did He define it this way? Because it is imitating Him. It is the emulation of the very expression of love that the Father has bestowed upon us. When we were alone, orphaned and without hope, He ordained our adoption through Jesus Christ to Himself.

As a Father to the fatherless who sets the lonely into families, God desires to display His heart through His people. He commands us to vindicate the weak and fatherless, to do justice to the afflicted and destitute, and to rescue the weak and needy (Psalm 82).

Unless the nation is revived, and God’s people turn toward a fatherless generation of children, we are not prepared for a change in abortion law. Yes, we should keep contending for the law to change, but also for God to raise up a people who are not just against abortion, but are truly Pro-LIFE."

I am no better than you. Our family is NO better because we've adopted. That is absolutely NOT what I am saying! This is just something that strikes me to the core because Christians as a whole are failing these children. And for the record....I AM PROLIFE!!! Amen, Amen and Amen!

In Him,

E

Let the fun begin!

We have been getting plenty of unsolicited comments, questions and stares lately when we go out in public. Most of comments are about Celia- the extras she has hanging out of her nose, the attachments/tubes in the backpack and her size. Here are just a few-

*"What happened to her?!" said in astonishment.



*"What's wrong?" again about Celia.



*A lady while coming around the side of the stroller to get a better view- "Oh, she's so...(insert pause and gasp).... what's that!"



*And earlier today at the doctor's office-

Her-"So he's adopted?"

Me- "Yes."

Her- "And that's his sister?"

Me- "Yes."

Her- "Biological?"

Me- "No. She's also adopted."

Her- "She has Down Syndrome." (this was a statement not a question)

Me- "Yes."

Her- ....long pause...."I guess you wanted Down Syndrome kids."...silence.... (one of my pet peeves!! They aren't 'Down Syndrome kids', they are KIDS who just happen to have DS!!)

Me- "Absolutely! But we have other children, too. Older. Typical. We didn't settle for these two. They were chosen."

Her- "Hmmm......" silence.

Me- (BIG SMILE!!)






So just for kicks, we thought we'd have some fun and add to the stares. Enter eye patch. No, this isn't really something we chose but rather something this little critter is going to have to wear for the next 3 months. It's not full time fun- only 2 hours a day to try to strengthen that darn left eye.



I ran into Goodwill after Charlie's appointment and the stares started before we even reached the door!! The first guilty party? An older lady with tubes hanging out of her nose (oxygen)!!!!! No direct comments but lots of sideways glances. One little girl asked her mommy "why that little boy has a bandaid over his eye and the baby has something in her nose?" Mom couldn't scoot past me fast enough.



Let the fun begin! Dawn, opportunity central for practicing my Jesus smile and voice.:)

In Him,

E

Reasons NOT to adopt

So.... do I have your attention?! I hear so many reasons why people "can't" adopt. Watch this then come back to me and tell me why you can't.

In Him,

E

Love Letters for Celia

Celia Elisabeth

Celia: "Heaven"

Elisabeth: "God's Promise"

We knew from the moment God whispered her name to us that she would have to have surgery. Celia's open heart surgery is fast approaching- we should have a date next week.

When Charlie had OHS, the girls and I wrote him letters and drew pictures to place in and around his hospital crib. He loved them! And I loved them because I knew that each piece of paper was created with love and prayer.

Please join me in doing the same for Celia. I want her to be surrounded. Literally. I dream that she will have hundreds of pictures, letters, drawings and scripture surrounding her. As her momma, it will be a tangible reminder of how much she is loved and prayed for. A way to surround her in prayer. I know, she's only 3 months old. And I know she may have no idea what all of those beautiful creations mean, but one day I will be able to tell her. I'll be able to share with her how many people love and pray for her daily....even way back when God fixed her heart.

I mentioned the idea to my friend, Natalie, and within moments she sent me her "Love Letter to Celia" that you see above. Oh my....TEARS!! Thank you, Natalie! It's absolutely perfect in every way.

A couple of weeks ago, when Celia was hospitalized for feeding issues, she drew quite the crowd. Her big blue eyes sucked them right in!:) I knew God was using she and I there- in a most unlikely place and circumstance. We met an nurse who just happened to also be an adoptive momma. We were able to chat with her and exchange journey stories and our prayers along they way. She shared with me how God made them wait until the very last moment to be able to bring their son home from Guatemala. Just a couple days after leaving the country, Guatemala closed it's doors to international adoption. Then, a group of student nurses stopped by full of questions about Down Syndrome. One really quizzed me on special needs adoption. Maybe God will use her?! I met a precious night nurse who returned from a Uganda mission trip several months ago with her heart on fire! She is praying about returning and continuing her work with HIV+ orphans. I told her about Jonathan, and we shared tears together. Then, there was the nurse Celia had on our last day. She and her husband are in the midst of finishing foster/adoption classes so that they may adopt a precious little girl from the state system who has been neglected her entire life.

Why do I share all of this? Because our girl is a disciple! A mountain moving miracle packed into all 9 pounds of her teeny body! God is using her, and I can just imagine the hearts and souls we can touch by surrounding her with Love Letters. Not only will they be prayers for Celia and God's perfect healing, but they will be a true testimony to HIS goodness and perfect love to every person who enters her room.

If you don't believe what Love Letters can do, just stop by and peek at Tracie Loux's son, Mattie. Love Letters shouting HIS name from the rooftops and surrounding precious Mattie with prayer.

If you'd like to join us and create a "Love Letter for Celia", let me know (nogreatergiftmom@yahoo.com). After I receive your email, I will send you directions on how to get your Love Letter to us.

Hand drawn pictures, prayers, scripture, photos....all would be perfect! Oh, I can't wait to see what GOD does with this!!

In Him,

E

HIVES!!

HOLY MOLY!! This is what happens to a super cutie pie when he takes amoxicillin!!

Who knew?!?!

Just another day in the neighborhood.....

In Him,

E