Tuesday, May 1, 2012

A Little Bit Of Q&A


Not a day goes by that someone doesn't say something like this to me:

"I read your blog but you left ______  out" and then they ask me questions about Emily.
I love that people care about my baby girl.

If you don't mind, I thought I'd answer the most common questions I get, and hopefully you will all feel up to speed on this 3-days-away-from-9-months-old little lady.


Does Emily sleep through the night?

Yes she does, and she has done since she was just a few months old.
As far as we know, Emily is never hungry, and it's usually hunger that wakes a baby in the night.

It's me that has the problem sleeping through the night.
I wake up at least twice a night to check on the little lady, and I usually have to move her back to the top of her bed.
She's a mover and a shaker, and the length of her feeding tube is long enough that Emily could easily get tangled in it, and she has, and so I go in to make sure all is well.

Will Emily ever eat by mouth?

We truly hope so.
I jokingly tell people that we hope Emily is eating by the time she goes to her senior prom.
Our real life goal is to no longer need the feeding tube by the time Emily is two.

I'm learning that feeding issues are really misunderstood.
I can't tell you how many times people suggest that I just need let her get hungry...that I need to stop using the tube...if Emily gets hungry enough she will eat.
Everyone has good intentions...I believe that.
My sister once said something about a feeding tube being the easy way out.
She was teasing, but I burst into tears.
No one wants their baby to live with a tube sticking out of their stomach.
And I can guarantee that if I could feed my baby the normal way, I would.

It's a sensitive subject for me.

We have a therapist who comes to the house once a week to work with Emily.



How is Emily's health?

She's doing great.
Really and truly.
(Minus throwing up every day between 9:00 and 10:30am but even that isn't causing her problems.)

Emily's heart is fixed for now, and although we will have regular follow-up visits with her cardiologist, we don't anticipate the need for another open heart surgery for several years.
She may need a cardiac catheter sometime before then, to widen her left pulmonary artery that is starting to narrow again. 
They have ballooned it open in two of her three heart surgeries, and may need to do it again when she's a little bit older.

Do you see any problems so far in relation to her chromosome deletion?

Emily's throwing up is probably because of 22q (the short name for the chromosome deletion).
Her inability to eat may be because of 22q.

Other than that, right now, we don't see any other problems.
Emily is a little bit delayed in her gross motor skills (rolling over, sitting, etc) but is advanced in her fine motor skills, and has been for a long time.
And no one can say for certain if the 22q is the cause for her developmental delays.
Children who spend as much time in the hospital as Emily did are usually delayed.

In the immediate future we will watch to make sure her speech is progressing.

There are a lot of other little quirky things that are probably because of 22q, but none of them have any impact on the way our little lady is developing right now, and so I try really hard not to focus on them.

This is another sensitive topic for me.
I'm not at peace with her chromosome deletion...not completely...and I feel like an awful person because of those feelings.

Why does Emily need a helmet?

Her head was flat...really flat...on the back and left side.
Her ears were uneven because of the extreme flatness.
The last time we went in to have her measured they measured it three times because they didn't believe it had changed as much as it has.




God must have a lot of trust in you and Jason to send Emily to you.

If there is one thing I know for certain...one thing I know that Jason and I will always get right, where Emily is concerned...
It's love.
We love our little girl and that love will get us through whatever we have to face.

Jason and I both get emotional at the thought of what would have happened if Emily had been sent to another home...to other parents...
We're grateful she's with us because we know our little lady will never lack for the one thing all of us need more than anything else.








11 comments:

Kristin @ Simply Klassic Home said...

So not fair to make me cry right before I go to bed.

XOXO sending you all lots of LOVE.

Shan said...

I am reminded yet again of why I could never be a reporter. Most of those questions? Wouldn't occur to me to ask.

I feel bad for your sister with her joke that went awry. Happens to me occasionally, too. Awful.

I have never dealt with a feeding tube, but there are certain aspects of life with my son that I have had to work hard to wrap my heart and head around. Sometimes they still don't quite meet on the other side, honestly, but mostly they do.

Sending you love.

Elizabeth said...

Oh. my. heck! (I say that every time, I know, but oh. my. heck!) She just gets cuter and cuter! I really need to squish those sweet cheeks of hers. When do you need a babysitter?

xo -E

Mom on a Line said...

Those pictures are so incredibly cute, especially the last one of her sleeping. I love sleeping babies!!!

I'm with you on so many things you have said. I still have trouble understanding the feeding issues and I deal with it with my own daughter. I even ask her now "why don't you eat? I don't understand why you won't eat." Then she tells me "I'm eating, Mommy. See!", as she points to three bites of food taken over an hour.

The good thing though is that it should get a better. Each kid takes their own time to learn what textures aren't terrible. And someday, you will have the joy of seeing Emily light up for some food and actually put it in her mouth, chew it, and swallow it. I can't wait to read that post from you. And I'd like to hear the crazy conversations you and Emily will have regarding food, just like DQ and I. (She promises me everyone morning as I take her to school that she will drink lots of water during the day, eat lots of food, and grow.)

Sending you so many hugs!

Anonymous said...

What I think: Emily isn't just a baby with heart problems, 22q, feeding tube & a helmet. When I think of Emily, I see an adorable little girl who is wise beyond her almost year. I see a girl who smiles, laughs, teases her mama & keeps me entertained with her squeals & growls.

Thanks for having Emily & letting me be her friend!
xoxo
~Lewie

Annie said...

I bawled through this whole post. The one thing I know for sure, like you mentioned, is that we are our babies parents for a reason. Can't imagine life without them.

Lalis said...

"This is another sensitive topic for me.
I'm not at peace with her chromosome deletion...not completely...and I feel like an awful person because of those feelings."

Noelle, you're doing fabulous. I think that as Emily grows, you'll grow also. Right now you're taking HUGE leaps of faith into the unknown, and that is scary. Is scary for everyone and you're no less of a person, or a mother, for feeling that way. The important thing (which you say so yourself) is that you and Jason love Emily. That love, along with Heavenly Father's guidance, will enable you to care for Emily always.

You're not an awful person. You're simply experiencing mortality.

Anonymous said...

Wow, almost nine months old, and she is doing so well. A testament to all the love and attention she gets from her family, as well as early intervention services. Your answers to all the questions asked by readers are so wise ... she truly came into the right family!

Isn't it amazing how quickly the helmet is doing its job? In my work I have seen many children benefit from the helmets, and honestly afterward you can't even tell they ever had flat heads. I would imagine a good part of the problem could have to do with all the time she had to spend in the hospital on her back after surgeries. She is really a miracle girl -

Leslie in CA

Mr. Thompson and Me said...

Have I told you lately how great you are?

You are.

Beth Zimmerman said...

Tear jerker! She is so precious, Noelle! So are you!

Bridget said...

Big hugs Noelle!! Em is so blessed and lucky to have you! I sure hope that blessings get poured out on you for the wonderful Mommy you are!
And gosh, she is so stinkin' cute!! That last picture makes me just want to snuggle her or just sit and watch her sleep. Precious.
Lots of prayers and love headed your way.
Thanks for your friendship, you really brighten my life and I'm sure others' as well.