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Thursday, November 18, 2010

Update And A Whole Lot Of Pictures!!

I just couldn't bring myself to start off this post with the yucky pictures so I decided to put my new favorite one up first. Anyhoo........here is where we are with Ella and the feeding issues. It was decided a few days ago that we were going to go ahead and put a G-tube in Ella. For those who are unfamiliar, this is a tube that goes from her abdomen directly in to her stomach. Yes, this is a more invasive surgery than just putting a tube down her nose but since it would be in the stomach area, it would be much easier to cover it with clothing just as we do her central line. And besides, who wants a tube covering up that cute face of hers!!! This is where it got a little bit complicated. In order to put a G-tube in, they need to do an Upper GI scan just to check to make sure everything is okay in her abdomen area. Well...in order to do an Upper GI, you have to drink a contrast fluid. Ha!! Isn't the whole reason we are doing this because she won't drink anything??? Sooooo, today, they decided to sedate her and put an NG tube down her nose so that they could give her the contrast that way.

Well, they had to wait for her to wake up before they could give her the contrast so that she wouldn't accidentally aspirate the fluid into her lungs. How, you ask, did they keep her from pulling the tube out as she was waking up? By putting no-no's on her as shown here...
and here!! (notice she is managing to carry that
darn diaper though)

Basically, the poor thing can't bend her arms up to reach her face. But my mom said that it hasn't seem to bother her much and that she has figured out how to do almost everything she wants to. Unfortunately, she isn't able to blow kisses which is a real bummer as that is what everyone in the hospital looks forward to when they see her. By the way, I mentioned above that "my mom said" and this is because, once again, this mother of the year wasn't at the hospital today. They weren't planning on doing this so soon but her numbers were coming up and they hoped there might be a chance of putting the G-tube in tomorrow so needed to get the Upper GI done today. All in all, today's procedure lasted about 10 minutes and it wasn't much more than an xray so I didn't miss much. They have decided to leave the no-no's on overnight so they can try to give her a few feedings through the NG tube and get her stomach working again. I believe they will take them off tomorrow and see what happens in regards to her keeping the tube in or not. I don't think there are many people expecting it to stay in very long but you never know.
So yesterday her ANC was 20 and today it was 175!!! Unfortunately the surgeon wants it to be up to 750 to put the G-tube in so it is highly unlikely that they will be able to do the surgery before the weekend. At this point, they have her scheduled for Monday morning and then we would probably stay in another day just to make sure everything is healing okay. Then they will show us how to feed her using the tube and barring any complications, we should be home before Thanksgiving.....God willing!! We will still be working like crazy to get her eating by mouth but this will be our back up until she does and also to make sure her stomach keeps on working.

Is this not the most pathetic picture you have ever seen? I don't think she is really this sad, I think the photo just caught her this way. She received yet ANOTHER Build a Bear today through a different organization. I am sure it was just the right thing to make her feel better.

Now for some catch up from the last week in pictures.
This is one of Ella's feeding therapy sessions. The
therapist is using Elmo to help Ella want to eat. They
started off with a hug.
And then a "high five"

Now Elmo is attempting to feed Ella her bottle

Pondering whether or not the strawberry formula is
acceptable or not.

Now it is Ella's turn to feed herself. I believe she is praying
for the strength to make herself stick the bottle in her mouth.

Sorry for the bad quality of this picture but I thought it
was too cute to pass up. Do you notice Ella and Elmo's
matching "diaper" hats???

Eating at Spaghetti Factory with my cousin Robin who
came in for a visit from Oregon last week.

Here is Robin visiting Ella at the hospital. She hadn't seen
Ella since she was 3 months old.

Emma and her soccer coach

Abbey and her BFF Cami

"Mr. and Mrs. Baldie"

I would say that her energy is coming back,
she is moving so fast that she is blurry!!

Hanging in the sink with Build a Bear
number 1

A completely adorable hat made by a friend of a friend
just for Ella. The generosity of people never ceases to
amaze me!!

I just loved this outfit on her and tried my
best to get a decent picture of her in it. Not
very easy these days when dealing with a
moving target!!


Cory said...

She is so beautiful and it is hard to know and see that she is going through all this. I know it is all for the greater good though. We are continuing to pray for you all here.

Megan said...

I know you know this but you are a great mom. The pic of Ella and the bottle, looking like she is praying always makes me giggle. Hopefully with the NG tube she will want to start eating. Ice cream always worked for me when I didn't want to eat. Bananna Splits from Dairy Queen to be exact LOL.

Tina said...

Thanks for all these pictures...I know they are doing what's best for Ella but seeing her with those tubes down her nose is just too painful, why won't she just get on with it and EAT! Would save herself so much trouble and us so much heartache. Denise she is just so beautiful, and yes despite everything she is going through she continues to amaze me with her strength, and her spirit. This girl is a fighter and these are just hurdles on the road to total and successful recovery. Sending her many many cyber hugs, positive energy and thinking of all of you daily.

Cammie Heflin said...

It is amazing how I only got to meet Ella for a couple of hours, but I miss hugging her so much! This is not the post I wanted to read, but I do want Ella to get stronger so I know it needs to be done. Addy wouldn't be here without her g-tube so it will be a blessing. Love you guys!

mandd3 said...

Denise, I sent a friend request on FB - I keep seeing all these beautiful picutes of Ella and can't comment on them until you accept!
The diaper lovey is just about the sweetest cutest thing I have ever heard of or seen. Whenever I am changing Tomas' diaper i have to get two new ones out - one for him and one for me. He hold onto his for a bout 10 minutes, but I just love the way Ella takes hers everywhere.
I hope the G can be very temporary, does she have one more round after this or is this it? If she does it will come in very handy, and meds won't even be an issue anymore.
I'm praying once she is home and well and in her own environment that eating will seem like a good idea again.

Karol said...

Love her!!!!!! In fact, I have to admit that I WANT her. Somehow I just know she would make us laugh....alot. The diaper thing makes me miss Laynee so much. What is it about these silly girls and lovin' the "diapies"

Michelle Z said...

Still giggling over the diaper hats! Oh good grief, she's sooo cute! She looks good, for all she's been going through. Such a tough, beautiful girl!

Bulldogma said...

Ella is amazing! Almost as amazing as her mommy :o) You're doing an amazing job juggling your family with your diaper-hugging little one. Big Hugs!

Dani said...

Denise- she is soo amazing..and so beautiful..I can't even imagine how hard this is for you guys..just know we think of you guys every second of the day and say prayers constantly that she will get better soon and you guys can once again be home...please - please let me know if there is anything I can do for you or bring you : ) let me know if you are going to be there over the weekend

Suzie said...

She is absolutely precious! Love the diaper, but didn't like the picture in the wheelchair, sooooo sad :-(
You're are amazing too mom. Keep yourself well :-)

Sweet Pea's Mommy said...

I am just in love with Ella! So many of her looks are a mirror image of Sweet Pea! It's a little strange that when I look at Sweet Pea, I often see Ella! I think it is because Ella has done all the things before Sweet Pea and so I've seen that look before.

I hope that her stomach is working well and that her counts magically jump over 750 today so that they do the surgery, but at worst case that they do it on Monday so that you are home for Thanksgiving as a family!

I will continue to pray for sweet little Ella and just adore the new photos. She is so precious!!!!!

Rochelle said...

Denise I would put you up for mother of the year any day sister!

I teared up on the sad pic of Ella in the wheelchair, she did look pitiful. But, the continual diaper every where we go pics crack me up! Love that girl!

Sorry her eating hasn't taken off will spend more time in prayer specifically on that issue and for only needing the gtube for a short while.
Love and hugs to you all as you jump over this bump in your road.

Anne and Whitney: Up, Down and All Around said...

i am so sorry that ella's feeding issues are continuing - i wonder if by some miracle she would start eating or leave the ng tube alone over the weekend so maybe just maybe she would not need the g tube??? the picture of her with her dora top on and the sad look on her face broke my heart - but luckily there were lots of other fun pictures with her looking really happy and full of energy to see! thinking of you guys!!!!!!!

Zoey's mom said...

Well ... my text said it all yesterday.You know i think you are the best mommy ever and your family has done an amazing job with all that has come your way.I am certain the next bump will be hit straight on and rolled right over and happier times will come before you know it.Although,seems like you all are really happy and have adjusted to your new norm beautifully.

We love you guys and too bad we weren't a few miles closer ... we could force feed these two darlings together!

Mama Mason-Mann said...

Hey Denise. Wow, those pictures are really something! Poor girl! Poor momma! I think you'll find the g-tube to be a HUGE relief. You won't HAVE TO force feed her anymore. You'll probably feel a weight lifted off your shoulders. PLease let me know if you ever have any questions about the g-tube. Chloe just had her site closed after 1 1/2 years and is doing GREAT!!!! When she's ready, Ella WILL eat. She's just got more important things to do right now. ;) Love to you and your family.

Kristin said...

Love the diaper/blanky...
Also... this charity provides once a month house cleaning for those who are in chemo treatments... don't know if there are any participating 'maids' in your area, but maybe check it out :)

my family said...

denise she is so beautiful, some of those pictures break my heart but she in several she looks like she is just too full of spunk :) we love you precious girl.

Alaina & Kyle said...

Stay strong Denise!! Ella did look so sad in the wheelchair picture but she sure looks cute in the others. Beau has had a g-tube since the beginning and they aren't to bad. The hardest part will be for you I think to not have her eat like she use to. Give Ella kisses from Beau!!

ABandCsMom said...

Making my rounds tonight. Checking in on all my friends. Guess I'm about caught up for the night!
That picture of Ella with the hat on is a new favorite of mine. Love those beautiful eyes!

Emily said...

I love all of these pictures... She is gorgeous and absolutely amazing. Stay strong... our prayers are always with you...

Kacey Bode said...

I love the picture of Ella and her new hat, which is adorable! My Ella has that same purple outfit and I love it too : ) The picture of Ella looking so sad seriously made me cry, even though you said she wasn't really that sad, I just think about all she is going through and it made me sad. I hope all goes well with the G-tube surgery and pray that you are all home for Thanksgiving!

Lori said...

Oh, the no-no's break my heart. That is no fun.
We will be praying for a successful surgery tomorrow (assuming it is still on -- hey, miracles can happen, and I haven't given up hope of her deciding to eat on her own!)
Hugs to you all!!

Melissa M said...

I love the matching diaper hats!!