Monday, November 7, 2011

The Ride Doesn't End

Oh hi.
How are you?
How was your day?
Mine was filled to overflowing with a little bit of everything.

Jason is reading a People magazine at the moment.  That's something.  I am sure this is the first People magazine he has ever even looked at.  It's Kim Kardashian that intrigues him.  He said, "She's photogenic."  I said, "Say it like you mean it ... 'she's hot'."  He didn't deny it.  Rats.

When I left my house this morning I ran into my across the street neighbor. She was walking her dog. Jason helped them move in not too long ago but we haven't ever had a chance to get to know them other than to wave in passing.  I stopped to tell her how beautiful I thought her dog was (because he really is beautiful) and she asked about my baby.

She didn't know Emily has been in the hospital and when I told her about all that has happened in Emily's life she got emotional and asked, "what can I do for you?"  I never know how to answer that question and I told her we were okay.  She asked if she could bring us dinner and I told her that we would appreciate that.

When we got home tonight there was soup on the stove and brownies in a pan.  (My sister came to let our neighbor in the house.)  My little family has been so blessed.

My brain is still spinning with all that was discussed today in regards to our Emily.
Emily had visits today from her cardiologist, her cardiothorasic surgeon, her nurse practitioner, and her GI doctor.  In addition, the infectious disease people and the immunologists have been consulted.

"There is no easy solution," is how the GI doctor ended our conversation.

Here's what we're facing:

Emily can't take food.
She's on an IV nutrient called TPN.
Long term TPN use can cause serious problems with Emily's kidneys, especially in the first year of her life.
The longer Emily has the IV line the greater the chance of developing an infection, which could easily get into her heart, and that would be bad.
Emily needs food and or TPN to grow in order to be ready for her next surgery.  (The goal all along has been to do her next surgery at 6 months.)
Emily's body will most likely not be able to tolerate food until after her next surgery.
Because who knew...the gut and the heart are related.

The solution everyone feels is Emily's best chance?

Fix her heart now.
Be still my heart.
Now?  Open heart surgery again?  Now?  As in possibly this week?  Is she even big enough?  Can her heart handle another surgery?  Are you SURE this is the best possible solution?  Are you even sure fixing her heart will fix her gut?

These are all of the questions I asked when the nurse practitioner told me what was being considered.

I thought the idea of the feeding tube made me sick to my stomach.  This takes being sick to my stomach to a whole new level.

I looked at Emily and said, "Girlie, this means you're never coming home."

Annie, the NP, said "Noelle, it means more time now, but so much less time in the future.  If we can fix both her heart and her gut right now, she will go home a different baby.  She may even get to drink from her bottle."

The decision hasn't been made.
The entire team of doctors will meet on Wednesday to discuss and weigh the pros and cons of every option.
Annie promised me that no decision would be made until they all felt sure it would be the best plan for Emily, and after we agreed with their decision.

Open heart surgery...again...possibly this week...

It's no wonder I clench my teeth at night.

20 comments:

Sarah said...

I cannot imagine your struggles, but I pray for you and your beautiful family still.

Jamie said...

you are a beautiful Mama...you are perfect at being a Mama...you are looking out for your baby, and that is the God provided trait of a Godly, Loving, "cannot-give-Emily-enough-kisses" kind of mama!

I am so sorry this is all happening, but I am still praying. James and Maggie are still praying. The Glory of God is being shown through the strength of Emily. His purpose is for all people to know Him, and you are living proof of the Gracious God we serve.

These Dr's are seeing God through you and your family, expecially through Emily.

I will continue to pray, I will challenge others to pray, I will join with my children praying for Emily! She is a beautiful baby, and she is going to grow into a beautiful young lady!

Much love to you, Jason and Emily!!!

Joann Mannix said...

Prayers and love, my girl.

Getting down on my knees right now.

Amanda said...

Tabloids can be a great temporary escape.

If it's any consolation, I saw pics of Kim without her slap the other day and she looked remarkably undistinguished. I imagine that would be quite a let down for a guy who's only known the photoshoped version.

Hugs and prayers Noelle...

Bridget said...

Oh Noelle. Big hugs! We will continue to pray for you and Emily and all of her doctors.

Laurie said...

Noelle,
You have the best Doctors in the Country working and thinking and discussing what is best for baby Emily. You are in a state-of-the-art facility where all the best diagnostic and procedural equipment is located. You have a large loving family and caring supportive friends who daily remember Emily and you and Jason in their prayers. You three have constantly been included on the prayer rolls of the Holy Temple since before her birth. The Holy Priesthood of God has been called upon to bless this child and you, as her parents. Those loved ones who are beyond the veil are Emily's guardian angels who watch over her and plead for what is best for their little loved one who had left them so recently.

Now, amazing, beautiful Noelle:...be still, and know that He is God. Know that God the Father, who is Omnipotent and Omniscient, knows and loves Emily. He hears our prayers. He knows the tender feelings of a young mother's heart. Be still and know.

Erka said...

I hope and pray things work out for little Emily! What a miracle would that be to have both her heart and intestines fixed soon! We are praying for her, my little girl is planning to send her a Christmas present!

Unknown said...

I am so glad you are able to see good things through all of this. You are a spiritual giant!! Obviously, I was wrong about the intestines and her heart. I wasn't thinking about how she has only a partially repaired heart because she looks perfect on the outside! The gut definitely needs good blood/oxygen flow to work properly, and right now, it doesn't get what it wants. It's spoiled. Emily has a spoiled gut. (ha!)So, like some spoiled children, if you give them what they want, they stop whining. Maybe her belly will stop whining if we just give it a little more oxygen. I will stop by this afternoon after I get to work.

wjmom said...

My continued love and prayers are with all of you (which I hope you already knew, but I thought it was important to remind you)!

Mom on a Line said...

I know you don't want to consider this. It is never, ever easy. I will tell you my experience is that open heart surgery can help a gut. My sweet little girl has never eaten well, but in the summer of 2010, she ate practically nothing. She did not grow for the entire year. And when she'd drink milk, we'd hear it sloshing around in her belly for hours because of how slow her body would digest it. Almost immediately following her last open heart surgery, she was able to eat and digest. Helping her heart heal was necessary for everything else to improve. It is a vicious cycle.

I can't pretend to know all of the complexity involved in decided whether Emily would be better off on TPN for a while longer, having open heart surgery, or something else, but I can hold you all close to my heart and hope for best answer for your family. Sending lots of heart hugs.

Kim Molnar said...

Noelle, I was brought to your blog by my dear friend, Joann Mannix. She and I have been friends for many, many years. I first heard of your blog shortly after my husband and I lost our daughter, ironically, named Emmalee whose original due date was August 5th. She was born extremely prematurely and died after just 18 hours.

During your pregnancy, I prayed for you and for your unborn baby. I prayed that you and Jason would be able to meet her, and hold her, and love her. I’m so incredibly happy that you have been able to do all of those things.

Your story has and continues to be a true source of inspiration for me. It has helped me with my own healing. I am amazed daily by your grace and perseverance and by the strength and will of that BEAUTIFUL baby girl of yours.

I continue to pray for your entire family. I know that these times are not easy but please know that you are not in this alone. We are all pulling for you and Emily.

Heather said...

I will pray for your doctors to have have wisdom!

I hope for the best.

Of One Heart said...

Really? I'm glad the doctors know what is going on. We need that gut infection to go. Thank you for the update,dear friend.

Noelle, I'm going to certainly say a strong prayer tonight. Emily will outlive every single one of us because she's learnt to fight before any of us bothered learning anything at all. Breathe. We're close to going back home with her.

Be okay.

Sam said...

Noelle! I have been without power for 8 days and unable to keep up with your blog. I am so sorry to hear all of this and am keeping you in my prayers as always. Poor little Emily. <3

Lalis said...

Ah, my sweetest Noelle... My stomach sank but, the good news is that there's a team of experts working for your baby. I'll be praying that they'll be guided and that the best decision will be made. Emily is our miracle baby, I have faith she will continue to be so.
I will stop by soon to give you a hug.

Shan said...

I, of course, don't have any answers, but I can point you in the direction of babies whose lives have been turned around by terrifying surgeries. Here's to Elimy being one of them.

Unknown said...

Good Morning Ms. Noelle, I looked up the conference talk. It's by Robert D. Hales, Sunday morning, called "Waiting upon the Lord: Thy Will Be Done". The part that especially stood out to me is, "We may not know when or how the Lord's answers will be given, but in His time and His way,...His answers will come. For some answers we may have to wait until the hereafter. This may be true for some promisies in our patriarchal blessings and for some blessings for family members. Let us not give up on the Lord. His blessings are eternal, not temporary." Hope the talk touches your heart. <3

Kozy said...

You don't know me, hope that doesn't freak you out. I found your blog through a friend's blog.

Such a big decision! You all can do it! I happened upon this today and thought of you, well, mostly of Emily -
http://lds.org/broadcast/ces/0,7341,538-1-61-181,00.html
"I had a body of sufficient capacity to let my spirit function through it."

Taylor said...

Praying!

le Chef said...

She might be "photogenic" but that girl's "hot" comes to a screeching halt once you get past all that skin and makeup.
Fact.
Your beauty starts with the glow you emanate, travels into those worried mama's eyes, and straight into that compassionate heart of yours.
Also fact.

Another surgery. Hhmm. Well. I have found, when faced with decisions where none of the options leave me leaping with joy, I try to find the gentlest way to accept the best solution. In other words; when you can't change your situation, change the way you think about it. (Which sounds slightly trite, but when put in a tight spot, sometimes it's all you can do to keep from screaming.)
So.
So she'll get to come home a whole new baby? With a healthier heart, and happier gut? OK God, if that's what you want .... I'm in.
I will be praying like nobodies business.
Just so you know.