Wednesday, November 30, 2011

Yes We Need A Little Christmas...Right This Very Minute

I'm in need of an intervention.

I grew up in a home that was constantly under construction.
So much construction that for what seemed like forever our bathroom was open and exposed to the world.
Literally.
The bathroom was on the second floor and the walls were knocked out of it, leaving nothing between us and the air outside.
We would bathe at night with the lights off so that no one would see us.
In fact, the light we used was the glow of the street light on the corner.

The walls of our home were nothing but sheet rock.
For years.
We used those walls as our personal drawing pad.
We drew pictures on the walls.
We practiced our signatures on those walls.
If you were to peel back whatever is on the walls now, you would find our life history.

In my closet alone you would find the name of every boy I ever loved, and every babysitter I ever hated.

After years of living with this construction, we came home from a vacation to find all of our old furniture on the back porch.
We couldn't decide if someone had robbed us or if our parents had decided to move without telling any of us.
When we walked into the house we found our answer.
My mom's family had spent the week we were gone finishing our home for us.
Our walls were painted and wall papered, our floors were carpeted, and we had new furniture.
My mom's family saw a need, and knew of my parent's lack of money to finish the construction, and stepped in and helped out in a big way.
I'll never forget that.

Now, the intervention I need isn't on such a large scale.
In fact, it pales in comparison.
BUT...the fact remains that an intervention is in order.

I'm having a hard time feeling the Christmas spirit.
Perhaps it's knowing that our Christmas will be spent in the hospital.
(Maybe the hospital will let me set up a small tree.  I must find a small tree.)
Or maybe it's just because I'm tired.
(Just because Emily sleeps through the night doesn't mean that I do.  I'm a bit of a worrier and I check the baby monitor every 7 seconds.)
Whatever the reason...

Do you think if I beg and plead my sisters will agree to help me put up and decorate my tree?

And the rest of you?
If you see Christmas spirit, send it my way!

Tuesday, November 29, 2011

What Do You Do To Feel Pretty?

Emily is tucked in for the night.
Jason is working late.
And I just finished off a bowl of soggy Cheerios...soggy because right after I poured the milk Emily decided that she wasn't quite ready to be asleep for the night.  She needed a few more minutes of quiet snuggle time with mommy.

I'm feeling a little bit lost.
Not lost as in no direction, but lost as in 'where's that person I used to be?'
I called my mom tonight to check in and before I could even talk I was crying.
She listened and then gave me some perspective into why I'm feeling the way I am.

"When you got married you were in a better place than you've ever been: physically, mentally, emotionally, and spiritually.  And then you got sick, and stayed sick the entire first year of your marriage.     You got pregnant and had a really hard pregnancy: both physically and emotionally.  And then you had Emily, and nothing about that situation has been easy.  It's okay to feel the way you are feeling."

That's good, because for now there are days where I can't feel any other way.

Anyway...

In an effort to find myself again I had a plan.
I knew that I would have two hours tonight where Jason would be home to take care of Elimy, before he left again.
I left Elimy tucked in her daddy's arms and got in my car.
My destination was the mall.
I was going to get a cosmetic makeover.  I need a new look and nothing makes a girl feel better about herself than feeling pretty.
Guess who wouldn't give me a makeover...
Who knew that I needed to make an appointment?
It's really too bad for them.
I was ready to spend good money on 'pretty.'

I have a hair appointment on Thursday.
It's with someone new.
If she knew how much hope I was putting into her version of 'pretty' she would probably cancel on me.

Anyway...again...

Here's something that perplexes me.
Have you ever noticed that most actresses on TV wear dainty little necklaces in the hollow part of their neck?
Loralai Gilmore wore a different necklace in almost every episode.  In fact, that was what amazed me most about the Gilmore Girls series.
I want the same kind of necklace...something dainty and elegant.
I've wanted one for years.
Years.
The perplexing part is that I can't find one...anywhere.
Do you think they only make dainty necklaces for TV stars?
If that's the case, I think that's kind of rude.

It's time for bed.
I know this because I just tried to use my baby monitor as my mouse.  And I don't even use a mouse with my laptop.

(PS.  For those of you who might be wondering: 'Elimy' is how my four year old niece says Emily.  The nickname stuck.)



Sunday, November 27, 2011

Jason Is Not Lady Gaga's Biggest Fan...In Case You Needed To Know

Don't you love when you get to your mom's house for Thanksgiving dinner and in the process of getting your baby out of the car you snag her feeding tube and pull it out?

What?  Your baby doesn't have a feeding tube?  You are so missing out.

Three hours is how long we spent in the ER on Thursday afternoon waiting for the on-call radiologist to leave his Thanksgiving dinner to come and put Emily's tube back in.  Nothing makes me want to swear more than Emily's feeding tube.

And if you add an oxygen tank to the mix...well, we may never leave the house again.  

I'd like you to know that I fixed dinner today AND baked chocolate chip cookies yesterday.  
Holy cow that's amazing.  Trust me, it really is amazing...well, except for that part where I sliced my hand while slicing an avocado.

Our little lady is doing well, thank you for asking.  It seems she falls asleep a little earlier each night and almost always sleeps through the night.  As she continues to outgrow her shunt she will have less and less energy.  When she's awake she's an incredibly happy baby, and loves to smile and play with her mommy and daddy.

Yesterday she was lying on the couch watching TV.  I happened to look over at her at the same time a man on the TV smiled.  Emily saw his smile and smiled the biggest smile back at him.  She's truly a joy.

In other news...

I found 17 new grey hairs.
Jason lost his car keys.
A very kind blog friend brought us dinner.
I wrote 12 thank you notes.
I almost had an attack of vertigo.  It was close.  It scared me.  Thankfully my medicine worked.
My washer is going all day long, thanks to the blow outs Emily has at least twice a day.
A third baby girl joined our family...we love you baby Lizzy.
My sister found mint m&m's and bought me a bag.
Emily got to meet her adopted grandparents and aunts who came from Mexico for their daughter's/sister's wedding.

Don't ask me what I was doing with my smile...I have not a clue.

I think that's all the other news.

If I could talk I would say, "Seriously Mom?  Can you add any other tubes/tape to my face?  Give me a break already."

We've got two weeks...December 13th to be exact...until we have to take Emily back for her next 
open-heart surgery.
Sigh.
We don't love open-heart surgery - but we love that surgery gives our baby girl a chance to live.






Tuesday, November 22, 2011

A Full Heart

At the moment Emily is swinging in her posh princess swing and Jason is making faces at her.  They are both smiling, and every once in a while Emily makes a sound that we are most certain is a laugh.

Have you seen Emily's posh princess swing?  Please hold while we attempt to get a picture of it.
In case you were wondering, you were on hold for 20 million seconds...it took Jason that long to get a picture he liked.



I'm emotional.  That's nothing new...not really.  But in the last few weeks I've been able to talk about my little miss without crying.

Up until yesterday.

For one brief moment life is as it should be.  We are together as a family.  Emily is sleeping in her own bed, in the bedroom her daddy and I so lovingly prepared for her.  We don't have to leave our baby girl at night, and I can go into her room as often as I would like to check on her.

But knowing that it's temporary...that in three weeks time I have to take her back to the hospital, where she will have her second open heart surgery...well, it makes me tear up any time someone asks me 'how's Emily?'

After Emily was born and we were told about her chromosome deletion, I spent a lot of time reading about Emily's syndrome online.
One night while I was still recovering in the hospital I clicked on a link that I thought would give me a detailed description of DiGeorge Syndrome;  instead what I found was an on-line support group for women who had chosen to terminate their pregnancies upon learning that their unborn child had the same chromosomal deletion.

I didn't read very much...I couldn't...but what I did read is burned into my memory.
As I stood at the entrance of the hospital Monday afternoon, waiting with Emily while Jason brought the car, I again thought of that website.
And while I watched my beautiful Emily sleeping peacefully, I cried tears for what those mothers missed out on.

Tomorrow will find us sitting around a table filled with my mom's best china, sharing with each other the things we are most grateful for.
This Thanksgiving I can sum up all that I'm grateful for in one word: love.
My little Elimy is love, in its truest form, and I could never have asked for more.

Happy Thanksgiving friends.  Thank you for being a part of our lives.

Monday, November 21, 2011

Reason To Celebrate

With an oxygen tank in hand, we are home.
All three of us...for three weeks.
We are going to make the most of those three weeks.

Thursday, November 17, 2011

Wednesday, November 16, 2011

Remind Me To Tell You A Story About Jason


That little miss of ours...
If it's not one thing it's another with her.

Today she can't keep her oxygen saturations where they need to be.
For someone with a healthy heart, normal is the high 90s.
For Emily, normal is anywhere between 75 and 85.
They don't like her higher or lower than that.
When she sleeps at night she drops down into the 60s.

The nurses try to avoid giving oxygen to Emily.
And it's not for the reason you might think.
They all know that Emily's daddy gets annoyed.
Not with the oxygen, but with the stickers that hold the oxygen cannula in place.
In fact, I think it says somewhere in Elimy's chart 'If you have to use oxygen, remove the stickers before Dad gets here for the day.'

The lower oxygen levels are most likely an indication that the little miss is outgrowing the shunt that was put in to bypass her pulmonary artery until she was big enough to have surgery to repair it.

Here's another piece to Emily's puzzle.
The formula Emily is getting is diluted so that her gut can tolerate it.
In order for Emily to get the calories she needs to gain weight she would have to have something like 
36 mLs of formula an hour.
But that amount of liquid would cause her heart to work too hard, and her lungs would be flooded.

The plan, as of today (and keep in mind the plan changes pretty much every day) is to get Emily to 26 on her feeds, making sure she can tolerate them, and then to send her home.

Don't get too excited.
It's only temporary.
Emily has an infection that is commonly found in kids who have had long-term hospital stays.
Emily's surgeon feels that Emily will have a better chance of recovering from the infection at home.
Once she has recovered and her body is free of any and all bacteria, they will operate.
The time frame I heard today is 2 weeks.

Our hope...our wish...our goal...our prayer...is to have Emily's surgery and then to have her home by Christmas.
It's a long shot and we know it.

On the chance that you think it's mean and cruel to operate on our little miss during the holidays...
It's actually a blessing, and something we asked for, knowing that Emily is okay to have her surgery now.
Plain and simple?
Our insurance starts over again January 1st, and having to meet our deductible twice in four months?
Ouch.
Double ouch.

By tomorrow the plan could be entirely different.

Would you like to see the trend we're noticing?



Oh my honk she's cute.

Thanks for loving my baby girl...


Tuesday, November 15, 2011

On Growing Up and Becoming Something

I'm losing my hair ... the amount I pull out every day is alarming.
Jason tells me I need to find a way to have less stress in my life.
He thinks he's funny.

Not too long ago I asked if any of you had any burning questions you wanted to ask me.  Two of you humored me and asked me a question.  One of the questions was what I wanted to be when I grew up.  Of course those aren't the exact words...and in fact, I may have completely forgotten what was really asked, but I'm going to answer the question I think I remember.

I grew up with six siblings: two brothers and four sisters.  My favorite thing to do with them was play school.  I was always the teacher, and depending on who my teacher was at the time, I was either nice or mean, mirroring what I saw every day at school.  I was in high school before I said I wanted to be something other than a teacher.

What kid doesn't go to Sea World and come away wanting to work with the dolphins?  Through my high school years I wanted to be a marine biologist...never mind that I had a huge fear of open bodies of water...and never mind that I didn't live anywhere near the ocean.  

One of my first classes I took in college was a gerontology class.  By that point in my life I had spent a lot of time helping my mom care for my grandma, and I knew that I wanted to spend the rest of my days helping the elderly generation during their final days.  I did a lot of volunteer work and spent a lot of time visiting people, who became friends, in a care center.  The pain of losing my grandma to Alzheimer's was too fresh though, and I couldn't handle a life filled with similar emotions.  My sister confirmed my decision when she looked me in the eyes one night and said, "You are never allowed to work with old people.  Your mental state simply can't handle it."

Let's see...from there I took a break from college and spent 18 months in NYC as a missionary for my church.  I came home feeling a little bit lost.  I enrolled in college and spent a week looking through the classes, trying to decide on a major.  I finally settled for English and when someone told me I had to declare a minor I picked Sociology.  A day later I went back into the enrollment office and switched my major to Sociology.  

Once I graduated I spent a lot of time volunteering.  I tried again at a care center.  I spent time volunteering with Hospice.  I worked with a group as a court appointed advocate for little kids.  And I spent a lot of time  doing humanitarian work in Central America.

I decided to get a masters degree in social work, and then changed directions and moved to Mexico for a few months.  I thought about law school with the determination to eventually become a judge.  Life threw some curve balls and law school was put on the back burner.  Later, I thought long and hard about becoming a family therapist.

Just recently my sister told me I missed my calling in life...she told me I should have been a journalist.  There's a funny story behind that but I'll save it for another time.

If I had an endless supply of money I would jump with both feet into the world of humanitarian work, and start my own non-profit organization.  

And after all of that...what I actually do has nothing to do with any of it.

I've had dreams my whole life of changing the world...of doing things that would make a difference in a big way....and perhaps those dreams won't ever fade completely.

But a tiny little miracle named Emily has taught me that if the only life I ever touch is hers...it's enough.


Monday Passed By In A Blur

It took me four hours last night to get through my 'to be ironed' pile.
Four hours.
Those are four hours I'll never get back.

In a strange and unexpected twist the little miss is now tolerating her feeds.
As of 8:00 this morning she was at 17 mLs an hour.  Our goal is 26.
It could be the formula change, it could be the new antibiotic they are giving her to treat a possible bacteria, or as the nurse practitioner told us, "It's Emily.  It could be the fact that you put a headband on her."
Really, it's an answer to prayers.

If she reaches 26 mLs an hour, and stays there with no problem, Emily will come home and surgery will be postponed until she gains a little more weight.

Besides being more exhausted than I ever remember, I'm torn with this turn of events.
I want my baby girl to come home, but I want her to come home to stay.  Just when we get back into a routine, and feel like life is normal again, it will be time to take Emily back to the hospital for her next surgery, and we'll be starting over. 

Oh...don't listen to me...

Yesterday my nephew Josh, who is 5, called me to thank me for the water bottle Jason gave him for his emergency kit.
We talked for a few minutes and then Josh said goodbye.
Two minutes after hanging up my phone rang again.
"Noelle, I forgot to tell you something about my day," Josh said.
"I hurt my lip.  It bled for about an hour."
"I thought my tooth was going to fall out."
"But my tooth can't fall out yet, because I have to get my pillow fixed first."

I asked what his tooth had to do with his pillow.

"I've heard some kids talk about the tooth fairy.  I know the tooth fairy brings money."
"I've tried putting money under my pillow to see if it works, but the money always falls behind my bed."
"My pillow must not work right, so I have to fix it."
"But if all of my teeth fall out I'll just wear my fangs."
"Goodbye."

And with that I have nothing else to say at the moment.
I'll be here rocking with Elimy if you need me.

Friday, November 11, 2011

Our Family Is Forever

We're on hold.
They're giving Emily one more try with a different kind of formula; if it doesn't work, surgery will be within the next two weeks.
At the moment our little miss is getting 2 mLs an hour.  She only made it to five last time before she got sick.
Emily's track record would suggest that surgery is in our immediate future, but maybe she'll surprise us.

Two years ago at this time Jason and I were just getting to know each other.  For those of you who are new to our family, Jason and I met online and wrote back and forth for a month before we met face to face.  I initially joined the online dating world for blog stories.  I never expected to find a husband along the way.

In a few short months we went from being total strangers to this:



I've thought a lot about the path my life has taken...I've thought about the choices I made along the way...the people who came in and out of my life.
When I met Jason I was still dealing with some of the emotions of ending a relationship that hadn't been that great.  And I wasn't at all sure that there were any good guys left.
Jason showed me otherwise.

I've known all along that I made the perfect choice for me when I married Jason, but to see him now...to see the love he has for his baby girl...to see the love she has for him...

There's not another man that I know who is as perfect as Jason is to be Emily's daddy.

And I love that together we're now this:



I love you Jason.  Thanks for sending me that email two years ago.

Thursday, November 10, 2011

By Small and Sometimes Not So Small Things...

Should a girl feel special when she gets her very own letter from the IRS?
The answer is no.
The girl should feel picked on because the letter will likely say she owes a lot of money.

Once I bought a house.  The state paid a small portion of the down payment through a grant program.
At the time,  I was told I didn't need to claim the grant money on my taxes.
I guess I was told wrong.

Last night I sat on my couch going through bills and writing my response letter to the IRS.
I was calculating our hospital expenses and thinking of the reality that Emily may very well be in the hospital through November.
I was just getting off the couch to go in search of chocolate when my phone chimed, telling me I had a new email.
I opened it to find that a dear friend of mine had made a very generous donation to Emily's heart fund.
Instead of eating chocolate I sat and cried.
Five minutes later my phone chimed again.
It was another very generous donation from another friend...one I haven't seen in years.

A few minutes after that Jason walked in the door carrying a package that had been delivered to the hospital.

These were inside:





Jackie at The Cookie Corner sent them .  The colors represent strength, hope, courage and faith.  Not only are they beautiful to look at, they are delicious!  When Jason saw that I was going to eat one he said, "But they're so pretty!"

I don't know how I'll ever begin to thank you all enough for the love and kindness you show us...but know that we're grateful...so so grateful.

Wednesday, November 9, 2011

So That You Don't Have To Actually Click Over To My Other Blog

Dear Baby Girl,

A little over three months ago you joined our family.  Your daddy and I thank our Heavenly Father for you every single day.  I'm at work today and I'm missing you.  Your daddy is with you though...we don't ever like to leave you alone.

This morning you are in the intensive care instead of your normal room.  I talked to your nurse a few minutes ago.  She had just given you a bath.  She told me that you were not happy when she put your lotion on.  I think it's because you know the lotion she's using is not the special lotion your friend Sandra made you. 

You've had a hard few days sweet girl.  You have been put through a lot of painful procedures, and some of them scared you a little bit.  A few days ago when your daddy was with you they did a really painful test to see if you had any problems with your intestines.  Your daddy stood right by your side and talked quietly to you.  Your eyes never left his, and you knew that he would protect you.  That same day they had to put in new stitches to secure your PICC line (the IV that goes into your arm) and they had to numb your arm to do it.  You cried a little bit, but your daddy held your hand the whole time.  Daddy said you slept in his arms the rest of the day.

A few days later your PICC line started to leak and your doctor felt it was best to try and replace it.  I went with you down to the special procedures room and stayed with you until you were sedated.  The doctors tried over and over again to put your new line in behind your knee but they couldn't get it, and even though you were sedated the doctors knew that you were feeling some discomfort.  They brought you back to the room and I held you all afternoon.  You would wake up and cry every few minutes and I knew that your little leg was still hurting.

Yesterday your surgeon wanted to do an MRI of your heart so he could get a really good look at it before he decided if he was going to operate.  In order to do the MRI you have to be completely still and so you and I went downstairs to the ICU and saw some of our friends on that floor.  I was sad because we were right next to the room where your sweet cousin Lucy passed away, and I really missed seeing her little smile.

The doctors gave you a lot of medicine to put you to sleep and then I left the room while they put a breathing tube down your throat.  You had your pink teddy bear next to you the entire time, and I made sure that your elephant binky was safe with me.  You were gone for three hours and then it took you another hour to wake up.  Your throat hurt you after they took the tube out and it took you a few minutes to start breathing well.  Even though you were asleep we could tell that you were sad.  Your daddy picked you up and rocked you in his arms, and almost immediately your heart beat slowed down and your oxygen levels went back up.  You knew that you were safe in your daddy's arms and so you were finally able to sleep peacefully.

I don't like to see you in pain sweet baby.  I always cry when you are hurting.  But I know that you have to go through these things so that you can get better and come home.  People tell me all the time that it's good that you are small because you won't remember what you are going through.  But you know what you're going through right now.  You know that when you feel something cold and wet on your leg the nurse is going to give you a shot and your body goes tense.  You know that you don't like anything near your nose because you remember how painful it is for you to have a tube put down your nose. You know other things too and even though you might not remember I always will.

When you get older and ask me to tell you stories about when you were a baby I will always tell you that you fought hard for your life.  I will tell you that you went through things that nobody should have to go through, but that you did it perfectly.  I will tell you that you brightened the days of the nurses who took care of you.  I will tell you that your story touched people's hearts.  I will tell you that you had people all over the world praying for you, and keeping you in their hearts.  And I will tell you that you are a daughter of God, and that He loves you.  God is real sweet girl, and I know that before He sent you here He took you in His arms and gave you a long hug.  He told you that it was going to be hard, and that you would go through a lot of pain and suffering.  But He promised you that it would be worth it...that the blessings He had for you would far outweigh the pain.

I promise you that it's true.

I love you Baby Girl.  The love I feel for you  is something that I can't put into words.  If you keep fighting, I will too.

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.

A Little Of Both

Do you want the good news or the bad news?

I'll start with the good news.
The company Jason works for has quarterly meetings, usually in Colorado.
It's a small company...just 5 employees.
Everyone but Jason lives in Colorado, and so it makes more sense for Jason to travel to Colorado than the other way around.
But because of the situation with Emily, Jason's boss flew everyone here for their quarterly meeting which started yesterday.
The good news is that Jason was home for the bad news.

The bad news?
I changed Emily's diaper last night and saw blood. 
I changed another of Emily's diapers and saw even more blood.
It was at that point I started to cry.
The nurse, who was new for us, gave me a hug and cried with me.
Later last night Emily's tummy girth went from 36 to 38 in a matter of a couple of hours, and it was then they stopped her feeds, although so far her x-rays look good.

I don't know what plan K is.  (Because we've already been through plans A-J)
I'm not sure Emily's doctors know the plan either.

I'm taking a deep breath and keeping it together...that's my plan.

This sight?  The way my sweet girl holds on to her little elephant?  It melts my heart.


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.


Thursday, November 3, 2011

We're Having A Quiet Day

I'm trying something new.
I'm taking the stairs instead of the elevator.
By the time I get to Emily's room I'm out of breath.
Remember when I climbed mountains?

I've been sitting here for an hour trying to come up with something to write about.
Can I tell you the one question I have more than any other? ...at least where my blog is concerned...
How many of you are there who read what I write?
Every day of my life I learn of someone else who reads this and at times I have to take a deep breath and say 'Noelle don't be intimidated.  Just keep writing.'

I'm taking Jason away for the night.
We're not going far...and we won't leave until we know our little one is tucked in for the night...
But at least it's something.

I'm giving up...I have nothing riveting to say.
Do any of you have any burning questions you are dying to ask me?

I'll leave you with what I think you come here for:


Tuesday, November 1, 2011

We're Still Here


A local talk radio station took a poll.
This was the question:
Which group would you be most likely to do volunteer work for?

animals
the homeless
people living in poverty
sick children

Care to guess which group came in with the most votes?

It wasn't sick children.
It was animals.
The talk show host asked one of the voters why she picked animals.
"People and kids can take care of themselves."

For obvious reasons her response made me a bit sad.
I thought of all of the volunteers who have spent hours holding my baby when I can't.
And I'm grateful that they picked sick kids.

We have been inundated with love...

visits from friends
cookies in the mail
treats left in Emily's room
smiles from our favorite cleaning lady
our favorite nurse spoiling our baby girl

We have no idea how long we'll be here but we are being well taken care of.
THANK YOU!

Oh...just one more question:
Are there support groups for binky addictions?  I've got a feeling we are going to need one. Or ten.