Saturday, November 5, 2011

Things Remain The Same

Does it surprise you to know that Emily is still in the hospital?
It shouldn't.
She'll be there at least another week.
We're waiting to see if her little body works like it should.

The little miss was born with an 'infection' in the lining of her bowels/intestines.
Specifically the infection is air bubbles that are only seen through an x-ray.
If left untreated the infection could cause the intestines to 'die', causing life long problems.
Her first surgery was postponed by several days until they were confident her infection had cleared up.

While Emily was back in the hospital because of the infection in her sternum , the doctors saw signs of a repeat infection in her intestines.
The treatment is simple: bowel rest.  They keep her stomach and intestines empty for 7 days, and then reintroduce milk at a very slow rate and pace.  The entire process increased Emily's stay by 2 weeks.

Emily had been home for a week when she started throwing up, and having diarrhea.  I've mentioned several times how traumatic it was for all three of us.  We didn't sleep at night for fear of Emily choking. There were several times we would hear Emily whimper and get up to find her little face covered in bile.
The morning we took Emily back to the hospital we found blood in her diaper.

Her x-rays showed no sign of the infection but they stopped her milk just in case.  Her symptoms disappeared almost immediately.  Every day for three or four days they did an x-ray and every day her
x-ray looked good.  They started Emily on milk again, a little bit faster and at a higher volume.  On the third day her symptoms returned and they stopped all feeds.

Emily is kept filled with nutrients and lipids (fats) through an IV in her arm and continues to gain weight.
She has gone so long without food in her stomach she no longer feels hunger.
Emily's doctors agreed that they needed to extend her treatment period and so she went 10 days without milk.
In that time they ran some tests and found nothing anatomically wrong with her intestines.
They are confident that this infection has nothing to do with her weakened immune system.
And it has nothing to do with an intolerance for milk.  Emily's formula has neither dairy nor soy proteins and is the most easily digestible formula there is.

We have been told that we may just have to 'slog' through this until Emily has her next surgery, when the doctors are hopeful Emily's body will no longer have this problem.

Day 10 was yesterday.
They put a feeding tube back in and started Emily out at one mL of milk an hour.  They raise the volume by one mL every 12 hours.
The goal is to reach 24 mLs an hour.
Clearly we're going to be in the hospital a while.

Seeing the feeding tube makes me sick to my stomach.
I have mini panic attacks at the thought of Emily coming home and getting sick again.
I have slightly larger panic attacks at the thought of Emily not ever being able to tolerate food.
I cry every day at least once because of the worry I feel.
And every day I feel guilty at the relief I feel knowing that Emily is in the hospital, where I know if she throws up she'll be okay.
Last week Emily's doctor told us they lost a baby to this same infection two months ago.

That little lady of mine is so patient through it all.
She tolerates the daily shots, the daily x-rays, the tube being stuffed down her nose...and she does it mostly without crying.
She sleeps through the night and is rarely fussy.
She smiles at the nurses and doctors, and she watches football with her daddy.
Really, you should have seen her today.  Emily's eyes were glued to the football game her daddy was watching.
She does everything her physical therapist puts her through, and holds her head up for as long as she can.
And those eyes of hers are always watching...always observing...she doesn't miss a thing.

Emily has had two blessings of healing - I believe that some men, Emily's daddy and grandpa among them, have been given the authority to act in God's name and give blessings of healing and comfort.  In both of these blessings, Emily has been promised that her body would be healed - not of her heart condition - but of her gut issues.

I have faith that God will honor those blessings...and I'm doing my best to have faith in His timing.
Emily's life...her health...they are almost completely out of my control, and the ONLY thing I can do is pray, and trust that God will hear and answer my prayers.
It's the hardest thing I've ever had to do.  And it's exhausting in so many ways.

There have been times when people have asked me why - why is Emily having to go through all of this?
There have been times when I have asked why.
Everywhere I go there are healthy babies and when I see them I think of my sweet baby, who has spent six out of the last seven weeks of her life in the hospital.
It's really hard not to ask why.

I always stop myself.
Asking that question isn't going to change anything, and it will probably only make things harder.
Instead I say a quiet prayer asking for the strength to get through this...asking for an increase in faith and trust...and hope.
And in the end, I always give thanks for my Emily ... I love that little girl with all of my heart.


le Chef said...

Sometimes the waiting out the "having faith" part is hard. We want things done ... sooner rather than later for our poor brain's sake.
I can't do anything about the time; he doesn't work on our same schedule .. is what I've had to learn. .. Slowly .. because I'm the impatient sort.
I just have such a positive feeling about her getting better.
My little sister had similar gut issues, from birth to about 2/3 years old. Back then there really wasn't much in the way of formula, so they went with goat milk. Thankfully that worked. But WOW was she a mess until they found something that worked.
It will take time, and I can't imagine the stress of 6 weeks in hospital.
Whatever his plans are for her, they're awfully big, and important.
Always in my prayers -

Kim said...

Noelle, I am new to your blog and I am deeply sorry that you have to watch Emily suffer right now. I think you have the right attitude however, not asking why and just praying for his blessings of strength and grace and keepnyour Faith. I have been lviving with infertility for 3 years with o children, and I had to to do the same. The why's are too painful and the answers haven't been revealed yet, if ever. So I just keep trusting in Him and his timing. He is incontroll so Faith and believing are my only options.

Your little girl is beautiful, as are you. She is blessed with such an amazing mommy and daddy. I am here praying for Emily, and your family. I pray that God heals her, and she doesn't suffer. I pray that he continues to bless you with his Grace. Keep the faith.

wjmom said...

Fasting for a with you today. I love you.

Joann Mannix said...

Oh Noelle.

I am in awe at the way you've handled this. You are so brave, whether your realize it or not, so honest, so noble, so faithful. You are a testimony to grace in the face of such hard adversity.

And don't feel guilty. Right now, the best place in the entire world for Emily is there where capable healing hands can help her in the best way possible.

I'm keeping you in my prayers. Keep that beautiful faith and walk with God. He'll show you the way.

Lalis said...

I'm still praying, Noelle.
Sometimes we just have to leave it to the Lord while we wait.
It's the waiting part that is hard.

jayayceeblog said...

I don't get to visit your blog as often as I'd like, but I do think about you and your sweet hubby and your beautiful baby Emily every single day. You are in my thoughts and prayers and I wish with all my heart that I could take all of this pain and uncertainty and stress away. I do believe it will happen - Emily will get better and go home with you to stay. Your strength and love feed her spirit.

And your amazing photographer took some wonderful pictures. Brought tears of joy to my eyes. Emily is so adorable in her little flowered headband. Thanks for sharing her with all of us!

Anonymous said...

Praying for you all, too.

Julie said...

We can ask why or even know why, we just have to accept and try and understand and keep loving. Praying for you and Emily and all.
Blessings my friend.

Of One Heart said...

This story makes me want to study and know my stuff really well. We'll win. Faith wins. I love the faith you have.