Thursday, January 12, 2012

Reality

Emily's pediatrician saw her today...on his day off and when everyone else in his office was at lunch.
He gave me his cell phone number and told me to call him this afternoon, and again this evening.
He's doing everything he can to keep Emily out of the hospital.

Our Emily has been throwing up every day for the last 10 days.
It's been just once every morning but in the last few days she's decided to increase her offerings.
Jason and I walk around with a towel in our hands ... just in case.
In fact, Jason has his baby girl so pegged he can usually have her in position over the sink before she lets loose.

Emily has no other symptoms and we can't figure out what is wrong.
En route to the pediatrician today I got a call from him.  "Noelle, I'm trying to decide if I should just send you to the hospital."
He doesn't know this, but I started to cry.
I am so tired...and so over throw up...and so ... so ...

Emily's doctor thinks she looks good considering and for today we've dodged the hospital bullet.

I think there is a general feeling that now that Emily's heart is 'fixed' life must be good.
Phone calls have stopped, emails have slowed down, and Jason and I are mostly left alone.
And usually that's okay with me.  We've had so much love and support and I will be forever grateful.
But the reality behind our closed doors remains the same.
A cold or the flu could land Emily in the hospital that fast.
A cold or the flu could end up costing our baby girl her life.
And every time I hear her cough I send a silent prayer heavenward, asking for the strength to just make it through one more day.

Emily's pediatrician put it perfectly today.  "Noelle, Emily is scary.  I can treat 99% of my patients all of the time, but Emily is that 1% because of her heart."

That will never change.  Emily will always be that 1% and somehow I have to figure out how to do something other than cry.

Maybe that will be my New Years Resolution.



17 comments:

Angee and Thom said...

The first year I cried everyday! It's ok. Emily has plenty to keep you on your toes. I pray all will resolve soon. And with out a hospital stay.email me anytime angeequ@hotmail.com, or message me on FB remember I FB under my hubs name.

Judy said...

Oh Noelle, I hope that whatever is causing poor Emily to throw up is figured out and fixed soon! I also hope that you and Jason are enveloped with peace and love...hang in there.

Rachel Starchman said...

I am sorry Noelle. That's got to be heartbreaking. We are still praying, still thinking of you guys and still hoping that you feel it. I know its probably totally different, but my very good friend has a baby girl who is a CDH survivor. She is 18 months, has gone from NG tube to G tube and still struggles with eating. She is still a very, very delicate little girl. She has had issues growing because she pukes....everyday...all the time. Her poor mommy is a puke expert. I have watched her struggle and I can only imagine what your going through. ((hugs)) We love you guys and promise to keep praying.

Beth Zimmerman said...

Oh sweet girl! My heart aches for you! Still praying! He is still with you!

Jaime said...

SO glad you were able to avoid a hospital trip today.

Its hard when the calls and visits and constant help stop coming --- I remember feeling so alone once that stopped for us when the hubby was sick this summer.

You are Emily's mom. And you ARE strong enough to get this, again, and again. God knows that -- he sent Emily to you because you can do this.

And she is one lucky little girl.

Shan said...

That would make anyone cry. I'm sorry you are living with this fear. It can't go right away, but I hope that Emily's strength eventually lifts that burden.

rplatt said...

Hang in there!! I think you are amazingly strong, and I love you.

Julie said...

You have the great doctor for wee little Emily. Emily has the greatest mama and daddy. Could Emily just have air build up after sleeping all night and need to get it out since you said she mainly throws up in the am? Something like a bubble but different. Just a thought. I had a little boy here and he had tummy troubles and he wasn't a wiggler at night and everything sorta just laid in the back if the tummy and in the am had a terrible bubble stuck until he moved around a bunch and of course that brought up everything and after fermenting all night it wasn't nice at all.
Good luck with this my friend. She'll outgrow this problem. You know why she's in the 1% it's because she's 1 in a million, the one and only perfect wee little Emily the great.
Sleep well, blessings!!

Sarah said...

I am still sending prayers for you and your beautiful family!

Of One Heart said...

Noelle, Emily is that special, mystic, magical 1 percent. She will continue to fight. I'm glad you dodged the hospital bullet.

Enjoy her. She'll grow up before you know it.

Lalis said...

Noelle, remember that you do not bear your burdens alone.
Also, though I do breath better when I think of Emily, I have not stopped praying for her. I have not stopped putting her name in the temple (when I go). The pediatrician can tell you that "Emily is scary," but I think Emily is a miracle and she will continue to be.
Emily is in the Lord's hands. She always has been. The Lord has a plan for her. Trust in Him and He will give you peace.

wjmom said...

Sweet friend, the prayers have not stopped. And even if they had, you STILL would not be alone. Love you!

Amy said...

I am soooo sorry! I really apologize if my message came at the wrong time and contributed to that drowning feeling.

You are doing so amazingly well. Please remember you have a whole army of people praying for our Emily and for you.

pauline said...

Noelle,

You are never alone. You, Jason, and especially Emily are always on my mind and in my prayers. Keep the faith and know that you are loved.

Kiss Emily for me.

Joann Mannix said...

Oh my gosh, Noelle. This hurts. When my girls were infants, I was a neurotic mess whenever they got sick, thinking in the back of my brain, that they could, indeed, be that minority you always read about.

And here you are living it. I feel like all I do is apologize to you for this hard, hard road you're on.

I'm sending hugs and love across the virtual miles and as always, prayers for our sweet girl and for you, for God's strength to carry you through.

Theresa said...

praying for you. Can't imagine. May God send your little girl health and her mommy and daddy some peace.

Mom on a Line said...

I'm sorry to read that Emily is having vomiting problems. That was one of the most frustrating things for us to deal with. We KNOW when it is going to happen too. We couldn't go any place without DQ vomiting. We just got that under control about 4 to 6 months ago actually. When DQ was on a feeding tube it was worse. We realized that because we were tube feeding her the amount the cardiologist wanted, she was vomiting the excess her body couldn't handle. When we lowered the feeds, it got a little better. When we removed the tube (and she at a ton less), it got a little better. When we switched formulas multiple times and finally got her to amnioacid only, it got even better. Finally, adding prevacid kept the vomit down. It got worse again, the sicker her heart got. But, after her last surgery, the vomit subsided after we upped her lasix again because she had grown. So, at almost 4, DQ's GI doc told us a week ago that he is finally happy with her and we are not changing anything. And she made it up to the 3rd percentile on the growth charts (a first for her).

It is so hard to deal with these issues. I hope you find the right mix that works for Emily and find it more quickly than we found it for DQ.

Sending lots of heart hugs!