Wednesday, May 23, 2012

What It Is

8:00-9:00

-Emily wakes up
-mix formula for the day
-change out Emily's feeding bag, tube, etc
-do a load or two of laundry
-do dishes

9:00-9:30

-feed Em
-clean up whatever Em doesn't keep down

9:30-10:00

-give Em a bath
-change out gauze on Emily's feeding tube
-get Em dressed for the day

10:00-12:00

-if I'm lucky Em might take a nap
-sometimes I get a shower
-pack up Em's diaper bag
-give Emily her meds through her tube
-play time
-work with Em on physical therapy
-fold laundry

12:00

-feed Em

1:00-2:00

-run any errands I might need to, both for work and for me
-head to work

2:00-4:00

-try to work while Em plays
-feed Em

4:00-6:00

-take Em for a walk while she winds down
-Em finally takes a decent nap
-I have about an hour or two to get as much work done as I can

6:00-7:00

-feed Em
-pack up and head for home
-run any errands that I need to

7:00-8:00

-get Em ready for bed
-change feeding tube gauze
-play with Emily
-give meds through tube

8:00-9:00

-Em is finally ready for bed
-snuggle in the rocking chair until Em falls asleep
-a load of laundry if I'm lucky

9:00-midnight

-feed Emily
-mix more formula
-find something to eat for dinner
-pull out computer and work for two or three hours

Midnight

-start Em's overnight feed

And then, hopefully, I can crawl into bed.

* * * * *

Emily's occupational therapist, who helps with feeding issues, came today.
I've been telling her for a couple of weeks that Emily is getting worse, not better, when it comes to being interested in food.
The OT tried to feed Emily and after 15 minutes of fighting with Emily she looked at me and said, "She won't eat anything will she?"

And then she said to me, "What did you eat for dinner last night?"
I told her I ate a bowl of cereal.
"What do you have in your fridge that we can give Em?"
I haven't been grocery shopping in weeks.

"Does Emily sit at the table with you and Jason when you sit down for dinner at night?"
We don't sit down for dinner at night.
We rarely even eat at the same time.

"Are you increasing her feeds as fast as we've talked about?"
I'm going more slowly than the therapist would like...if I push Em too fast her tummy doesn't do too well.
"Until you can feed her a feed in 15 minutes she won't ever eat well."
"You need to find food that Emily gets excited about.  Make pasta and let her taste the sauce."
"You need to get to the point where you don't feed Emily at night.  She won't ever eat until you do that."

About 20 minutes after the OT left I got a phone call from another therapist.
"Noelle?  Emily's OT tells me that Emily needs help in other aspects of her development.  I'll be coming next week to do an evaluation and tell you where I think Emily is lacking, and what help she needs."

I hung up the phone and cried all the way to work.

* * * * *

A friend of mine has been pushing me for weeks to get together.
I finally found a time where I could fit it in and I texted her and told her I would leave work early and come and visit her.
She offered to feed me dinner and then sent me another text:

"Can you please bring that dessert my kids love?"

That dessert takes me three hours to make.
I haven't made it since Emily was born.

I waited a little while and texted my friend back and told her that I wouldn't be able to make it to dinner after all.


* * * * *

There's a line in the movie Return To Me that I love.
A girl who had a recent heart transplant found out that her new heart came from her boyfriend's deceased wife.
In tears she yells out to her friend, "What was God thinking???"

I sat on the floor of my sister's office today and cried and cried to my mom and asked her the same question.
"What was God thinking?  I can't do this.  I'm failing Emily."

Although it wasn't at all intentional, Em's OT made me feel like it was my fault entirely that Emily isn't eating.
On any given day I feel like I'm failing at most things in my life: my job, and my role as a wife and a friend.

I try really really really hard not to blame myself for Emily's not being able to eat.
I try to tell myself that Em will develop as she develops, and that no matter what, it will be okay.

But today ... today ... if you were to tell me Emily's heart defect and chromosomal deletion are my fault, I would believe it.

I'm grateful that every day isn't today.

* * * * *

Em and her bunny and I watched American Idol for a little while tonight.
Em loves American Idol almost as much as she loves Mickey Mouse Clubhouse.













19 comments:

Marian said...

Keep your head up. Tomorrow will be better! If in doubt, find your sweet Em, sit down with her and cuddle her! She is so precious and beautiful...and she needs YOU! You are her world.
I'm sure your therapist was trying to help (and I'm sure they probably know what they are talking about), but you are the mom, and you know your girl better than ANYONE!!
You are a lucky lady to have such a precious girl! Enjoy every minute!

Jackie@The Cookie Corner AZ said...

You are doing a wonderful job as Emily's mmom. I have two daughters- a 15 and 8 year old. The feelings of being "not enough or not right" come up still! That's part of our job description. When we know better- we do better. I believe Dr. Phil says that and I often remember that after I've done something something silly.

I also find myself wondering why I didn't think of something so simple-like creating a chart of cleaning expectations for my girls! i just assumed because I've whined about my expectations five hundred times they should know what I expect when in fact they probably tune me out! They love my new "friendly" chart.

When we know better-we do better.
Tomorrow will be a new day and Emily will love you more tomorrow than she did today!

Cha said...

I've been reading your posts ever since I found your blog few months ago. I am also a 'heart mom'. I could really relate to how you feel especially when you're down. My heart goes to you.

Beth Zimmerman said...

Hang in there, Noelle! You are not failing Emily and God knew EXACTLY what He was doing! (My FAVORITE movie of all time, btw)

Are you allowing people to support and help you? I swear ... if I had more money and less pain I would be on the next plane to Utah! And I HATE planes!

Please take care of you TOO, Noelle! Because you are precious! And we love you! So does God! :)

Judy said...

I wish I had words to write that would give you comfort, but just know that there are people who truly care about you and your precious Emily.

No matter what anyone says, Emily will call your name blessed one day and she will know of the sacrifices you have made to make her life as beautiful as it is.

Tammy in GA said...

Noelle, you are doing a wonderful job with Emily. Don't ever let anyone make you feel otherwise. I know when you're feeling fragile (tired, exhausted, tearful) it's easy to believe everything is all your fault...but it's not. God entrusted you with this precious girl. Do your best to do your best-and that's all you can do. Hang in there!

Stephanie said...

I found your blog through a friend who said she loved your heart. So, I just had to stop and say hello. I think what you are is a mommy who loves her daughter. We all worry. We all second guess ourselves because we want to do right by our children. And that comes from only love.

And we all make mistakes, but God has given us the ability to forgive ourselves because He has paved the way to forever. He already has forgiven us. He has created precious Emily and chosen you to be her mom. Hang in there. One breath and moment at a time.

Anonymous said...

You are doing wonderful. Emily is a beautiful girl. It is inspiring to listen to her story and see how she is progressing. I can hardly wait to see what a kind, friendly pretty girl she grows up to be.

Anonymous said...

Working and juggling the needs of family is challenging for any mother. That's why McDonald's does so well. Give yourself a break, Noelle. I had a co-worker that never sat down to eat with her husband and child, either. And her husband was home all day. When I worked part-time, I cooked dinner most nights, but we didn't eat until 9:00 at night, either. You're using up all your time just keeping Emily fed the only way she has the ability to eat right now. I hear what the therapist is saying though, and it makes sense. It's very stimulating for the apetite to smell food cooking. What about asking (or letting) family members come to your house and prepare dinner? They all live nearby, and they could take turns. You need some help and you need to allow people to help you. I know, it's hard to admit defeat, but we all must come to a point in life that we have to say, I can't do this alone. We need each other, and there are people waiting to be needed. I know they would do this for you gladly. You just need to let them, and maybe even ask them. You can do that, but it might be hard, so just do it for Emily. Heck, if I lived close to you, I would come over in a minute to cook you a delicious roast chicken dinner. Or spaghetti and meatballs. Or bake some chocolate chip cookies! Let people help, Noelle, it will make tham feel so good! Sometimes our best gift is given by receiving the gift of others.

Marie

Mom on a Line said...

All I can say is what I've said to you a million times before: feeding issues suck! It is not your fault. Therapists push. That is their job. Your job as mom is to listen to the pushing and decide where to draw the line. You know what Emily's body can handle. And that OT is not the one who has to watch Emily vomit with increased feeds. (And even if she sees it once when she is there doesn't mean she understands how it feels to watch it over and over and over again.) I know you will find the answer, even if it feels impossible right now.

Sending lots of hugs your way <3

Tiff said...

Cory tells me all the time that life is good and that things will get better and that it will all be okay. He tells me that it's okay to cry and it's okay to be mad. He tells me that I can say it's unfair all I want. And he even thinks it's cute when I swear.

Noelle, it's okay to cry. Things will get better. It's okay to be mad at dumb therapist people (and anyone else you want). Life is unfair, and anytime you want to swear, you call me.

I sure love you!

Lalis said...

Noelle, there's a world of difference between being a failure and being overwhelmed! You are overwhelmed, and you want to be perfect for Emily. It's okay if you're not. Let me repeat that: It's okay if you're not perfect. That is why there are people such as OTs. Granted, perhaps they could be more tactful in the way they say things... But they're not there to make you feel incompetent, they are there to help because they are aware that Emily is not your typical baby.

You're not meant to this alone, Noelle. Not in the mortal sense nor the spiritual sense. There's a whole team of cyber-buddies pulling for you and the Little Miss. And then there's your team of doctors, nurses, and therapists. And more importantly, there's your Father in Heaven.

You are right that Emily will develop as she develops, the Lord has a timeline for her. Trust in Him and don't despair. :)

And as far as making dessert and going to dinner... I think you should tell your friend the facts. Said dessert takes three hours and you have a baby that right now won't eat by mouth. THAT is your priority ;)

Annie said...

Only you can feel what's right for Emily. You are her momma. And despite knowing that I always felt inadequate in knowing how to best help Conner, I still tried to go with what I felt in my heart and tried to listen to the quiet whisperings of the spirit to help guide me. Not even therapists can truly understand the frustrations of feeling issues unless they have a child themselves who has gone through such. It's just something you can't really comprehend...the burden, the guilt, the burning desire to help them, and the feeling of coming up short, no matter what you do. Heavenly Father heard my prayers, I know he did, but it was still so hard, and there were days where I just cried at every feeding. Emily is just so precious. I love her even though I haven't even met her. I don't remember where you live, but if it's possible, I'd look into seeing if you can get in to see Helene Taylor (Conner's feeding therapist) at the Intermountain Taylorsville location. She was so amazing. I'll pray for you and Em and your sweet family. Much love to you.

cathyjoy said...

What Marian said!

And? None of this is your fault..it is no one's fault.

But? If God didn't think you were the exact right mommy for Elimy, He would not have given her to you.

So? Remember...God chose you. And He doesn't make mistakes!

John Bradfield said...

Noelle,

You're doing amazingly well. Your routine is so similar to my wife's routine! You two need to talk.

Believe me, we feel exactly the same way. We look at our little Em and all we can see is all the things we aren't doing well enough.

We aren't giving her enough auditory stimulation, we aren't using sign language enough, we aren't doing enough physical therapy, we aren't feeding her often enough. (some days we don't get to feeding her orally at all.) There are so many things she needs us to do, we don't feel like we could ever possibly do them all.

But she is making steady, slow, progress that ebbs and flows. Your Emily will too.

Keep at it.

Our little Em is allowed to eat a whole tablespoon up to 4 times a day, but we haven't worked up to that much yet, and sometimes she simply refuses to open her mouth.

She likes peaches, bananas, carrots and sweet potatoes.

I've found that if I wipe her bottom lip like I'm cleaning a drip from her mouth she's more willing to open for me. (That's only when she isn't burying her head so I can't get the spoon near her mouth.)

Every kid is different and each one moves on their own timeframe.

Our little Em didn't even pass a swallow study until 2 days after her first birthday. So don't stress too hard, She has time. And you're doing amazingly well.

Dazee Dreamer said...

You know, if I had to eat that icky baby food, I wouldn't eat it either. I went with my own gut when it came to feeding my kids. What you have to remember is in the olden days, parents did what THEY thought was good, not what all the doctors and books said. And look how many kids survived eating real food before they were one. I like the idea that she had about having her try things that you are eating. Mush it up. I bet she would love cake. Ok, shutting up.

Joann Mannix said...

What Mom on a Line said and more.

If I were there, oh, if I were there.

I'd keep your fridge stocked. I'd make your dinner where you wouldn't have to lift a finger and I would watch that little girl as much as you'd allow me, so you can get some breathing time. AND clear your head, so you can realize that you are doing a wonderful job. No one knows their child better than their mother. Listen to the OT's and then do what it's in your heart. And don't let anyone make you feel like a failure.

You are extraordinary.

Shan said...

This breaks my heart. Even though our circumstances are so different, I can relate. Sending love.

Laura said...

I don't know how old your little Emily is and I don't know all that her health issues will affect her feeding even more than a "normal" baby. but to hopefully give you some comfort, i had three healthy babies. none of them liked me feeding them 'solids' at first. it was a struggle for all of them. Baby #1, just wanted to do it herself, so she finally ate okay once she could finger feed herself (9-10 mo). Baby #2, also finally started eating okay in the last quarter of her first year, feeding herself and letting me spoon feed her. Baby #2 also didn't sleep through the night, woke up for feedings until she was almost 18 mo. a glimpse at #3:

http://therobecks.blogspot.com/2011/12/to-feed-or-not-to-feed.html

it didn't get better until after her 9 mo check-up.

my husband and I (and kiddos as they came) have always eaten dinner together. sometimes, I think there's nothing you can really do to get them to eat, except keep trying every day, and eventually they will start eating more. my new philosophy with #3 also was to not push it. if all she wanted was one or two bites, i may try for a third, but i wouldn't make eating a 'fight.' That kept both baby and mom much more relaxed (except of course the nagging, motherly worrying 'is my baby getting enough?')

my heart goes out to you. You (and your blog) are an inspiration. Hopefully, some of her feeding issues are personality, and perhaps one day she'll just decide that food on a spoon isn't that bad. we all feel the worst at our jobs sometimes; i'm sure that you are giving your little one just what she needs (and now that American Idol is over perhaps a little So You Think You Can Dance?...=). Good Luck.