Saturday, August 6, 2011

In The Last 24 Hours...

...this is as much contact as I've had with my baby girl.
And it lasted a total of maybe 10 minutes.



She has a daddy who doesn't like to leave her side though, and I'm grateful that he's here.
 I'm grateful that Jason and his daughter have had a chance to bond one on one.


It's probably going to be a while before they let us hold our daughter but in the meantime we'll get as much finger holding in as we can.


My goal for today is to do whatever it takes for them to okay a trip to the NICU.

As of last night, the report we heard was mostly positive.
Emily has what they think is an infection of her intestine...although the doctors are baffled by the fact that she's not sick.  In fact, she's quite stable.
She has a breathing tube just in case, but she's doing most of the work and the doctors are pleased.

This infection will delay any plans they might have to operate on Emily's heart.
In fact, at this point they have her in the NICU and not the Cardiac Intensive Care Unit.
Once moved she'll be in good company.  Her little cousin Lucy will be her across the hall neighbor.

The cardiologist told Jason yesterday that they are considering two options:

1. They will go in and do what they call the 'full repair' right now and hopefully get things done with one major open heart surgery or

2. They will do a less invasive surgery now to hold her over until she's a little bit older, when they will do the 'full repair.'

They plan to do an MRI on Monday and then meet together as doctors, to come up with their best recommendation.

Short of having the blood test to confirm it, the doctors have verbally ruled out Down's Syndrome.
A fact which we thought we knew the moment we first saw the pictures the doctor took for us after they had Emily stabilized in the NICU.

What they haven't ruled out is a diagnosis of a condition known as DiGeorge Syndrome...
...a condition that can only be confirmed by blood work.
Little Emily's ears are 'lower' on her head than normal, and for now that is the only thing the doctors have to go off of, in their 'it might be a possibility.'
We probably won't know the findings there for a few weeks, and then, if she does have it, we won't know the severity for some time.

Clinically speaking, that's as much as I've got for now.
Emotionally...well, that's another story.
And I'm not sure that I'm ready to get into that yet.

The last 24 hours have not been easy for us.
And last night, when we finally had a chance to talk and to be together, Jason and I both shed a lot of tears.
My husband feels the burden of worrying about both Emily and me...and it's hard on him.

I got an anonymous comment yesterday...one that has left me unsettled.  And although I'm sure the commenter meant well...

"I have a hard time with something you and your family always say.  That is 'we all have the faith that what the Lord wants will happen', or 'God is in charge.'  It sounds like you're saying that the Lord has intentionally inflicted this suffering and I'm sure you don't really mean it that way."

The commenter then went on to interpret what he or she thinks I must really be saying...to define what it is I really must be thinking...according to his or her definition of what 'the Lord's wants'.

Opening myself up in a manner like this...blogging...I realize that I leave myself wide open for scrutiny, for judgement, and thankfully, mostly, for an incredible amount of love and support.  But to the anonymous commenter who I think really did mean well, let me say this:

...and in doing so, I remind myself of what I really believe.

God IS in charge, and His will concerning my daughter and her life WILL happen.
And in saying that, I am in no way saying that I believe He is intentionally punishing her for something...
God has a plan for everyone of His children...a plan that I believe was set into motion long before we came to this earth.

And by saying that God is in charge, I'm simply accepting God's plan...whatever that is.
That doesn't mean that I won't plead and hope for the best possible outcome for my daughter...
That doesn't mean that I won't pray for continued miracles and for successful surgeries...
But what it does mean is simply this: no matter what the outcome, no matter Emily's future, I believe that God will allow only what is best for Emily, and for me and Jason.

And that...trusting that God is in charge of Emily's life...that is how I define faith.
And between you and me Anonymous, I believe that God is more than okay with my definition.
If you believe that the purpose of this life is to align your will with God's...and I do...I think that at least for today, I'm headed down the right path.

To all of you who aren't so anonymous...
Jason and I are strengthened by your comments and messages of love.
As we read through them last night we cried again...but they were mostly tears of hope and gratitude.

We'll be okay...the three of us.
We may come out of this looking like we've fought a battle -
(that's how my mom told me I looked yesterday and it's physically how I feel today)
And we may have puffy eyes once in a while for the tears we are still likely to shed -

But we'll be okay...because we have each other, and the blessing of knowing that this little angel is ours forever.







41 comments:

Dazee Dreamer said...

She is sooo beautiful. I just have to stare at her pictures and marvel.

Anonymous commenters should just be ignored. They don't have enough guts to say what they want to say and let people know who they are.

I am so impressed with your faith in God. It is one thing that draws me to you.

You went through a rough battle just trying to have Emily. 24 hours of labor with 3 hours of pushing is not fun. Then a C-section, which in itself is an operation. Hold that little girls hand as much as you can. Talk to her. She will bond with you. I'm not saying it won't be hard. I had to leave the hospital without my oldest son, and it was really really hard on me. First of all, you are a mom, second, your hormones are all skewumpus. Third you never realize how much you love someone until you have a child. Its like no other feelings of love that you have.

Stay strong. Right about it. Continue those letters to Emily. She is in good hands. She has awesome parents and grandparents.

You guys will be in my thoughts and prayers at all times. I love you

wjmom said...

The last thing I did before bed last night was check for any updates on your blog. The first thing I did upon awakening this morning was check for any updates on your blog. :) The three of you are constantly in my thoughts and my prayers.

I understand that there are worries and struggles and battles ahead. But oh! the beautiful, marvelous miracle of this little one--who, as little as 40 years ago would not have had a chance. She is clearly in the BEST hands: the wonderful medical caregivers, her mommy and daddy (and family!), and God (who is getting an earful, believe me).

Your faith is beautiful, incredible, and exemplary, dear friend. I love you.

Amanda said...

Oh, that first picture had me chocking on the spot. Big hugs and prayers.

Kelly Howard said...

She is SO amazingly beautiful! She looks absolutely perfect in that last pic. And she is perfect, in God's sight. She is also a very blessed angel, to have parents like the both of you. I think of all the little angels in the world who NEED parents like you and don't have them. And about what is God's Will...it is a daily 'I WILL'! I will do the very best I can with what I have been given for today, cherishing each moment in hope for tomorrow. That is what you're doing! I refuse to believe any other outcome for Emily other than the BEST outcome, and I am praying that way every day. Prayer is such a powerful thing-oh that folks would realize its worth! If you are allowed to touch her head, daddy needs to bless her like in the Bible. "The LORD bless you and keep you; the LORD make His face shine upon you and be gracious to you; the LORD lift up His countenance upon you and give you peace." and to say, 'May He make you like Sarah, Rachel, Rebekkah and Leah'. And He WILL! I am sending a HUGE spiritual HUG just for you three!

Shan said...

Dear Noelle,

You are beautiful and so strong. You did it! Isn't it incredible what we will do for these babies of ours?

I know that my daughter's surprise four day NICU stay at birth does not compare to what you are handling. But I can relate to wanting so bad to see, touch, hold my girl and having to wait for the right moment. For permission. Getting access to one foot. And instructions on exactly how to touch that foot. And a time limit. It was miserable. I wish you didn't have to go through that.

I remember thinking I could not ever, NEVER leave the hospital without my girl, the daughter I always knew I would have. But for her health, I could. I wish you didn't get that experience, too. But there will be a different kind of joy and sweet relief when you bring your daughter home.

May that day be soon enough that you can look back and think, "It was awful when we went through, but it's not so bad from here."

Big baby lovin' hugs to you.

Mr. Thompson and Me said...

Because Nice Matters is the name of the blog. Sometimes the well intended doesn't read that way. I'm sorry you had to even think about that comment right now.

But I'm glad that you did because your faith and example is such a strength to me.

She's really beautiful Noelle...just like you.

walden said...

Hey you-

Loved this post. Look at her sweet long little toes! She's made it this far and that's a fight in itself...for any baby, but she's been valiant in her little struggle so far! Those blessings will keep coming.

From one recent c-section mom to another...stay ahead of your pain killers. You'll feel better and stronger the more you keep ahead of your pain. It's probably the single most important thing to keeping your strength.

Love you, honey, you guys are doing great! You are being a mommy right now in every sense of what emily needs, even though it must be excruciating for you to not hold her. You're being the perfect mommy as you pray and pull close to Jason and heal yourself.

She's so sweet and strong! We'll keep pulling for you and I know all will be well.

Love, Alison

Becky said...

Congratulations! Emily is beautiful! She is so lucky to have such wonderful parents. I will be keeping all of you in my thoughts and prayers.

My Life said...

Noelle, although my situation wasn't anything like yours. I felt much of the same feelings you have/are feeling.

"Look unto me in ever thought; doubt not, fear not"

This particular scripture got me through every day of my pregnancy, not knowing if Kian would make it, if I would make it and trying to cope with whatever came our way. I love you! You are amazing. You are an example to me on how to be faithful! You ALL will be in my prayers, as you have been, every day! I hope to see you sometime soon.

<3 <3 <3

Keileigh

Sam said...

Unfortunately I have to head off to work about a minute ago, and will leave a better comment later on, but just wanted to let you know I stopped by. And whether Anonymous meant well or not (I hate anonymous comments, by the way), in spite of its comment, I do want to say, your strength and faith throughout this has astounded me, and not only that, but your strength gives ME strength. Never for one second did I interpret your thoughts in that way, and I'm irked that they left that comment at all. I think God is more than content with your definition of faith, and I think the world would be a more peaceful place if more people shared your faith and hope.

Still thinking of and praying for your new family of 3, especially that rosy pink cutie. xo

Carrie said...

She is beautiful! I just want you to know that you have been in my thoughts and prays.

Platt Lucky 7 said...

Noelle..you and your family are truly amazing people :) Such faith and trust you ALL have. Children are a true blessing..and the things they teach US everyday is truly amazing. Whatever "challenges" they may bring with. We pray for Emily and cousin Lucy as well. How neat(not quite sure what word to put here) to have Lucy close to her cousin during these trials they are both going through. Maybe it is comforting for them?? Our love to you and your family and Lucy's as well.

Daniel and Elise said...

Wow, those pictures bring back a lot of memories for me, and tears. I know that what we went through with our first baby was hard, too, but it was definitely the Lord's will. I wouldn't go back and change a thing.
There is such comfort in knowing that families are eternal. And she is so beautiful! I'm so glad you have her forever!

Kirstin said...

Noelle, She is absolutely beautiful!! It may be a lot to take in and no one can ever prepare you for what is in store. Just remember, she chose you as her parents and she is a gift straight from God.

I pray that all goes well in the next few days and weeks. I know you have so much support, but if you ever need a shoulder to cry on or someone who can listen, I am alway here.

Congratulations! Kirstin

Rawknrobyn.blogspot.com said...

More virtual hugs, lots of love, and we're all holding faith too. She is so beautiful and such a fighter. She is your miracle forever.
xoRobyn

Elizabeth said...

First, people who have nothing nice to say and post anonymously are cowards.

Second, even if we're wrong in what we believe (and we're not ;) ), there is nothing wrong with believing what gives us the most comfort in times of trial.

Third (and this probably should have been first), Emily is so so beautiful. She is truly blessed in so many ways. Thank you so much for letting me witness a miracle-in-progress. She couldn't have been sent to a better family (see, God is in charge) and she really is yours for eternity. I'll keep her and her doctors in my prayers.

Fourth, I'm so sorry about the c-section after labor. Been there, done that. Super not fun. I'm praying for you, sweet friend.

Thank you, again, for sharing such special events. Emily is truly a miracle and I'm so glad she has you.

xo -E

adrienzgirl said...

Noelle, never feel like you must justify your faith to others. You are a shining example of what we all should strive to be. Your light reminds me everyday that God lives.

While others may try to challenge your words, faith or love, it's not their place to judge or question what you believe. Especially when they can't even do so with a face and a name!

Emily is beautiful. My heart overflowed with emotion at the first site of her beautiful little face. I cried tears of joy for you and Jason today seeing her little warrior hands gripping your fingers!

I am still praying that you and Jason are surrounded by LOVE and STRENGTH. Just embrace your faith, He will hold you up. I keep struggling with words here, I want to send you the comfort I know you are searching for in the few fleeting moments when you are questioning why?

I feel like I am repeating myself, but the words keep pressing on my heart and I feel like I must say them again, YOU and Jason were hand picked for this job. You were saved for this time, this family, and this special little spirit. Take comfort in that when you feel down and remember that because of your faith, your strength, and your love, you were CHOSEN.

Love you! ~B

le Chef said...

Any woman who has given birth has fought a battle. Any man that has had to watch his baby girl fight has fought a battle. Any family that has had to put up with comments that offer no hope, or shed no warmth of light, or bring no resolution or benefit into this world or the situation at hand, has fought a battle.

In every battle there are armies and warriors, victors and the defeated. Right now, we are your army of supporters, and your family ..including little Emily, are your warriors.
Defeat isn't on the agenda.

Any kind of holding is good holding hon, and I'm glad they finally gave you some time with your baby. And to Jason - good on you for keeping watch. Every little girl would be so lucky!
You are both AMAZING parents. Don't let anyone tell you any different.

{{Prayers and gentle hugs}}

TheBlogWriter8 said...

Noelle, honey, I love you- please do remember that. Each of these pictures made me cry; I can't imagine how you're bracing it all. I hope that God gave all of my strength to you as well and that that's the reason I feel so weak.

Mum and Dad blessed Emily's pictures. We're all waiting to see you guys get home and be a family together. I'm not sure what I want to say. I think I'll be back in a while. I love you. Stay strong.

Kisses to the gorgeous new favorite of mine. xoxo

WellaWitch said...

Your strength and faith are amazing. I am so sorry that you must endure this hard time. My prayers are for you and Jason and especially for Emily.
-Noelle Schepper Sanford

Kristin said...

The great thing about faith, is that no matter what anyone else tries to disprove, your faith is just that, YOURS. And nothing any anonymous person can say can take that away.

Your strength, even though you may not feel it right now, is beautiful.

Congratulations to you and Jason!! Your little girl is just precious!!!

Sending you lots of hugs and prayers.

Heather said...

I think of you often As an example of how faith works.
I can't imagine what you r going through right now. I'm so sorry you aren't getting to hold Emily. Please know you are still in my prayers.
(is her hair reddish? I can't tell in the pictures. Important details here huh?

-stephanie- said...

Look at her hang on to you! So sweet! Hey Emily...your mom will never let go. You are a blessed baby to have the parents that God chose for you.
My prayers continue for all of you.

Anonymous said...

Hi Noelle, it's me, the now infamous anonymous commentor. I want you to know that I did indeed mean well. I didn't think I was challenging your faith at all, and I feel badly that that's how I came across. I have no doubt at all of your faith in God, and I am so sorry to have caused you distress at a time like this. Shame on me. I am ashamed of myself, and I hope you will forgive me. I'm so glad that Emily arrived safely. She is so adorable, and I can't wait to watch her grow up. She is very, very blessed to have come to your family. I am praying along with everyone else that she will grow healthy and strong.

Sherrie said...

She is BEAUTIFUL!!!!!

amiracle4us said...

Keep your faith and your sweet baby will be in my thoughts and prayers :)

Marci said...

ah sweet girl...it's been quite a journey for you and that sweet little one.
i am so happy for you that she is here and you are both doing so well.
your faith through this whole thing has been an amazing lesson for me. it is in god's hands whether or not we want it to be. but he is a loving god and whatever happens he never gives us more than we can handle. what doesn't kill us makes us stronger, right? i think it's hard sometimes for people who think we are saved by grace and not by the life lessons we have been given and how we endure them.
i think you all 3 are amazing and you are in my thoughts and prayers. i love you, you sweet lady and am so proud of you!!

Cathy said...

God bless you and your little family. You all have been in our prayers. Please know that all do not have the same relationship and understanding that we have in God. You have such a wonderful way of putting your thoughts into words.
Take care of yourself and little Emily. Continue to update us because we care.
Cathy

Beth Zimmerman said...

She's absolutely beautiful Noelle! Love you much. Prayers continue!

TortugaRachel said...

Oh Noelle, she is so perfect! You're right, you're so right in your walk with God that it's an inspiration. I pray for your family and you have been on my church's prayer list for what feels like always. I love reading your blog because you are so honest and forthcoming. I wish I could just grab you and Jason up in a great big hug.

I am SOOOO thankful to God for the blessings He has given you. You will be fantastic parents and Emily couldn't have been placed in a more loving environment. God knows what He's doing and not only will Emily be your blessing, you will be her's.

God is awesome, keep your faith and with Him, you will move mountains.

I love you so much!!!

Joann Mannix said...

Emily is beautiful. And I know it with everything I have that all of this will become just a distant memory here very soon.

Look at her already, the doctors have discovered an infection, yet here she is, her little body doing everything it's supposed to be doing.

I look at the picture of you and I just want to wrap my arms around you and take all that sadness and worry away. Just keep remembering, everything is going to be alright. You and Jason and that sweet, sweet little girl are in good hands both here on Earth and up in Heaven. God knew what he was doing when He gave Emily to the two of you. The biggest part of faith is putting yourself in God's hands and you both have done that so faithfully and well, you will be rewarded when that sweet girl is in your arms and home with you. It will happen. It will. Big love and hugs and prayer for the three of you today and for all the days to come.

And as for Anonymous, shame, shame, shame on you for trying to trouble someone's heart at a time like this. What is wrong with you? Do yourself a favor and find something productive and good to do with your life. You'll feel better when you spread joy instead of misery.

I'm praying for you and your beautiful family. May God's peace wash over you. May Emily's heart be healed wholly and permanently. And may you live the life God intended for you with joy and love, the three of you wrapped in God's arms.

I love you , sweet girl. Stay strong.

TortugaRachel said...

This one's from my daughter (age 11):

She's adorable!

I feel bad for her and I hope she will be okay.

I pray for your family.

She's SOOOOOOO CUTE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lucas Family said...

So inspired by your faith and hope! My thoughts and prayers are with you and yours. Speaking from experience, having your baby in the NICU is scary no matter what. And frustrating. And so many other things that are hard for anyone to understand unless they've experienced it. Then having a C-section on top of it. Too too much. Hang in there!

Cheeseboy said...

She is adorable.

Continue to have faith, as I know you do and will. Sending prayers your way.

Mary said...

You are a family of fighters. If that can be passed on genetically, Emily can pull through anything. You have been strengthened so much by these trials. It amazes me. I keep picturing you in a blue denim jumper in NYC worrying that you were too hardened and tough. Now, you are so far beyond that.

Now get some sleep, so your body can recover faster, because YOU DO KNOW that God IS IN CHARGE.

Kimber said...

You, Jason, and beautiful Emily are in my thoughts and prayers. Love you, amiga!

TheBlogWriter8 said...

Checking. You're all being good, aren't you? Stay strong. Enjoy Emily's first Sunday with her- it's an important day of the week. I hope she has realized that already!

Amy said...

Amen. (say it reverently) What a lucky girl she is.

Katie said...

Noelle--I was so glad to read your comments about God's plan for Emily, and for you. He only gives us trials He knows we can get through, so remember that He has faith in you! We love you, and are praying for you. Hope you recover quickly from your C-section, and are able to have more time with your little girl soon.

Tricia said...

Noelle and Jason,

Congratulations on the arrival of Emily! I can only imagine the emotional and physical exhaustion you are experiencing, but I am so happy that Emily has arrived and that some of the unknown is now known. We are praying for you three and for the doctors making decisions and eventually performing surgeries.

Love,
The Sederbergs

The Chicken's Consigliere said...

I knew what you mean when you talk about God's will, Noelle, as I'm sure most of the folks do who read your blog. I think you have a beautiful family. There will always be people who misunderstand us, but there will always be people who understand us perfectly. And there will also be people who may not understand us perfectly but are willing to ask, clarify and learn. I hope Anonymous commented in that spirit.