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Saturday, February 14, 2009

Update on Dr.'s Appointments



We'll start with the fun stuff first. Here are the girls in their Valentine shirts that daddy got for them. Rick is so sweet and just loves taking care of all his girls and making us feel special. He is the best daddy and husband, we are so blessed! He got a shirt for me too but umm, well, it was just a weeeee bit too tight. That's what happens when you get a shirt in the teeny-bop section of the store for an almost 31 year old with a post-pregnancy body. Fo sho right laydeez? FYI, along with Holla sometimes I kind of like saying fo sho, translated "for sure" for those of you who don't understand the lingo. Anyway, the best idea now days in clothing for me is to try and camouflage the muffin top as much as possible instead of drawing attention to it. Moms with muffin tops, are you with me here? So obviously I need to exchange my cute shirt for a bigger size. Thank you though babe, you are SO sweet and thoughtful! Also, Ella rolled over today for the first time from her tummy to her back! I know this might not be exciting to anyone else but it is extremely exciting for us. Yea Ella!

Okay, so the not so fun stuff is the information we learned from our doctor's appointments this past week. This post is a little lengthy, just a warning. Here we go, this past wednesday Ella had an Upper GI procedure done which, I'll spare you the details but just know that it was terrible. She would not drink the barium (shocker!) even though they wheeled in a tv with baby einstein playing for her and 5 nurses were standing around singing Old MacDonald Had a Farm. Negative, so they had to put a tube down her nose and into her stomach to get the barium in that way to do the x-rays. It was awful, she was screaming and crying the entire time and I was about to lose it myself. At least they got the images they needed but it was just not fun for any of us. On Thursday we had a follow-up appt. with the GI doctor to go over the pH probe, Upper GI results, etc. I was fully prepared that she was going to say that Ella had severe reflux, here's the new med and that's it. Not the case.

She did say yes, Ella does have significant reflux, here is the medication but that there are some other things wrong internally as well. I'll try to explain this as best as I can since I am so not medical and don't completely understand how everything works with the whole GI thing. Starting off, her small intestines and colon are malrotated which means they are in an abnormal position in her body. This more than likely happened in utero when everything was forming and apparently in every fetus there is a period of time when the intestines come out of the abdomen, rotate around and return back into the abdomen. With Ella, hers just did not complete that rotation and because of that they are not in the correct position. The doctor said that this is not that common but it is also not uncommon. Do you see a running theme here with sweet Ella on the not-so-common things happening to her? sheesh! Anyway, there are people walking around out there that have this same condition and never know it or know it and know how to deal with it. In my understanding, malrotation in itself may not necessarily be a problem but there can be complications that present themselves and then it can become a serious problem and surgery would have to be performed. Basically for Ella this is important information for us to know as far as her future health is concerned but nothing is going to be done or needs to be done at this point about it unless she really shows signs that something is going wrong. Time will tell but more than likely things will be fine.

Okay, I'm not done yet. In addition to the malrotated intestines Ella also has a hiatal hernia which is common and pretty much goes along with reflux. In addition to that she also has a tortuous esophagus which means her esophagus is curvy and wide as opposed to a normal esophagus that is straight and narrow. There you have it. I think I covered everything from our GI appointment. Needless to say, I burst into tears in the doctor's office because I was not prepared for all of this info so it was kind of a blow. No wonder this poor baby is having trouble eating! However, despite all of these things we do feel like once the reflux and esophagitis gets under control she will eat better. We are so blessed that Ella is such a happy baby even though she has been through so much. Things will get better but it is just going to take some time.

Last thing. On Friday we had an appointment with the Cranial Band people to get Ella's head evaluated for a band or helmet. Her head is flat on the right side because she has trouble looking to her left due to her shoulder problems. We try to position her as much as possible to relieve pressure on the right side but there is only so much you can do. So we had an evaluation and they said that on the scale she is in the severe range and is a good candidate for the band. She has plagiocephaly which is flattening of the head as well as brachycephaly in which the head forms in a wider, shorter shape. We realize that they have a product to sell and it is ultimately our decision on whether or not to get a band for her but we feel that it is important to have this taken care of so we are moving forward with it. The time table for how long you have to wear the band is different for every baby but it is usually around 6-8 weeks we were told and it must be worn 23 hours a day. We'll go back this week to have the mold made then it will be a week or two before they get it back to do a fitting. After that we'll have to go every week to make sure it is fitting right yadda yadda yadda. Awesome right? As if we really need one more issue to deal with. We just kind of laugh at this point because it really is amazing and what else can you do. Cry? I do enough of that already so I would rather laugh. Anyway, my friend Holly said she would buy a Bedazzler and we'll just slap some rhinestones on that bad boy and Ella will be good to go. So, get the creative juices flowing people, I need helmet decorating ideas. Send me your serious, funny, silly, whatever suggestions, we could use and appreciate the humor.

Okay, I'm sure there are other things I need to update about but this post is long enough so I'll stop for now. Thank you for all of your prayers this week for us. It was a hard week finding out all of this but we are glad we know more because it is just steps in the right direction to helping Ella get better. Much love, 10-4.

21 comments:

Nancy Giurlanda said...

ohhh, could Eva and Ella be any cuter......they are both so beautiful !! I love their Valentine's Day outfits !! Good job Daddy they both look so sweet and despite what Mommy says I am sure she looked just as beautiful in her Valetine's Day shirt. I am glad you got some answers this week, although hard to hear and I am so sorry you have to go through all of this, but you are right they are all steps in the right direction to get Ella healed and healthy. What a happy, precious baby she is. I am so glad to hear you are laughing more, you will get through this honey it is just going to take some time. Keep that wonderful sense of humor that makes me laugh out loud while reading your posts !! Eva and Ella are so very lucky to have such a wonderful Mommy and Daddy. Oh and the bedazzled headgear...I can only imagine !! Sweet Ella will love you for those pictures in years to come..haha You are doing a wonderful job, I love you all very much and my thoughts and prayers are with you daily.

Jennifer said...

First of all, I'm so sorry for all of your frustration and tears over everything. Someday, SOMEDAY you'll all look back and say, Whew! We made it through that mess!!

Second, I don't know anyone with two more beautiful girls than you guys. They're just gorgeous.

Third, check out the Steece Quads website because that chick can DECORATE and all four of her quads had to have the headbands and they looked PRECIOUS!! I think you'll have to go back a ways to find the pictures, like a year or so ago, but it'll give you some great ideas!

Ashley said...

Fo sho about the muffin top. You are a nut and it is good to hear your humor for all of this.

Second, we will be praying that the band is successful. We are so sorry that your family is going through all of this, but know that one day this will pass and she will have dealt with or corrected all the physical issues and then she will be good to go.

Third, do you really think Holly should be the one with the Bedazzler. I love that girl, but I don't remember her being the craftiest of your friends. I am just saying, you might request some samples of her work before you put Ella through that. :)

DCVol said...

Way to go Ella the roller!!! We celebrate that milestone with you, sweet girl! Those two valentine cuties could not be more adorable.... and I am totally feeling the mommy muffin top with you, Amy. I'm thankful that at least you have some GI answers amidst all the madness....bless her sweet little precious heart~ I just want to kiss those cheeks of hers. We love you guys~ it was so great to chat last week Amy....I have thought about our conversation a lot this week and am so thankful for you. Hugs, KJS

Haley said...

Ok so here is a blog about a family with quads that all had the crainal bands. The mom really jazzed them up and actually was put in their calendar for the bands. I know it's hard with everything else going on, but just remember that this family (the church) and us love you all and are praying for you all the time.

http://thelifeofsuz.blogspot.com/

You might email her and ask her some tips and advice. I'm sure with 4 of them she knows a few things. Love you

mindy said...

Our grandson Jackson had to wear the helmet and Shelly decorated it cute for him. Please know that we continue to pray for all they you go through. Love all the pics!

Jodi said...

I too give a Fo Sho (with lots of enthusiasm) about the muffin top. As I sported my maternity jeans to church this morning 9 weeks post-preggo trying my darndest to suck in as much as possible, I was reminded that 2 csections later... well, I am just not in my 20s anymore. Sux. So, HOLLA at the ladies that feel my pain! :) Man, Amy, just love ya. Crackin me up all over the place

As for all the other stuff... girl, you are a rockstar. And you obviously have a little rockstar on your hands! She is just precious beyond words and is such a trooper. (Yay for roll-over!)And we thought she already had enough to deal with... wrong! Again, sux. BUT, hang in there, all 4 of you. I keep saying this, but be reminded you are prayed over nonstop. Our sermon this morning was about putting the Fear of God in place of the fears of man. It hit home for me big time. So, I will also be specifically praying for God to not only take away your fears, but replace them.

FYI, I might be calling you about the cranial bands sometime this week. ONLY ANSWER if it is a good time, if not, call me back in a year or so. :) Really though, B has her flat head on the left (seriously, if we put their heads together they would be perfect!) and we are trying desperately to avoid any helmets. So, I want to pick your brain on all of this. Then, we can "laugh" together about all the things we want to cry about, or just laugh for the sake of laughing. Sound ok?!?!

LOVE y'all SO much. Love. Y'all. So. Much.

Chesley said...

I LOVE that Ella has a big bow on her head! She is a doll! I also love Eva's outfit. What cute pants!
I am so glad you got some answers last week. I guess the positive is that you know and you don't have to wonder.
Girl-I hear you loud and clear on the muffin top. I have some nice buthighs to go with my muffin top thanks to G. Too bad it doesn't look as yummy as a real muffin. :)
Love you friend!

Hayley said...

What beautiful girls you have! I think about you and your family often!

Natalie said...

Here's a link to Suz' pics of her quads with the bands. She decorated Savannah's with jewels and such. Here it is: http://thelifeofsuz.blogspot.com/2008_01_01_archive.html

Ann Reese said...

Yeah, I'm going to have to second the motion that Holly not be the decorator or "The Bedazzler".....I think I should do it. I'm so very creative. :)

Oh Aimes, you are so funny! You are prayed over and so are Ella and Ricky and Eves; you are all loved beyond what you'll ever know. I hate that all of this is happening, but I praise God for your faithfulness to him. And for your ability to press on every day even though it is extremely tough right now. I love you so very much and wish every day I could just make it all better.
I know, I could try on one of your shirts and then you would truly understand the meaning of "muffin top". Oh, goodness. Reminds me of a story. The other day I was bending over to pick up the toys and here comes B making a beeline to tickle my muffin top---really? Could have done without that. Thank you my sweet two year old. Anywho. Holla at cha lata fo sho. I"m embarrassed that I just wrote that. 10-4

Rick said...

So now with 2 comments about Holly's decorating skills, I must address that Holly will not be touching my daughter's helmet with any decorating utensil. Holly is very nice but truly not the most creative gal.

Brittany said...

Guys, WE LOVE YOU!!! Sweet Ella is going to have an amazing life story and will bless many other lives in the years to come, she is already blessing my freakin' socks off. What an amazing little joy.

Ok, my idea for the helmet is to make it into a beautiful, sparkly crown to signify the precious little princess she is and also that she is God's princess of royalty. I would love to help with it if you need it!

Julie said...

No baby should ever have any body part labeled "tortuous"!!! It just isn't nice!!!

So much going on on the inside for someone who has such a perfect little face and smile!!!

She'll be adorable in the crani-band if you decide to go that route. Girls love accessories.

Hang in there...you are always on my prayer watch!

Holly said...

Seriously? Seriously? Don't hate people! Rick, I understand your concern but I have made a folder of all my creations for your approval to go forward with coolizing your daughters band. Granted, it looks like Corbin did most of the projects, but work with me here!

We love you guys and we are thinking and praying for you more than you know.

Destiny said...

Hi-
You dont know me, but I have been reading your blog and praying for your family since your precious Ella was born.
Anyways, there is another blog I follow called-the life of suz. She is a mother to 18 month old quads, and they also had to have the head bands. And like you- she wanted to decorate them. So she did. You can go to her blog and see what she did, maybe it will give you an idea of what to do with Ella's. http://www.thelifeofsuz.blogspot.com/
Blessings,
Destiny.C
Serving the Lord in Uganda
www.calvaryfortportal.com

Shelly said...

Catchin' up on the Carders---wow. I can't imagine how hard it was to take all of that news in. Praying for you all and trusting God to continue to take care of sweet Ella and provide all the strength and and energy you need each day. Big hugs--

Mere Ware said...

Ok I just reentered the blog world today... And i been readin yo blog foh a minute girl. ah snap no ella di'int have all that mess goin on up in her bizness. Ain't y'all dealt with enough a that dookie yet? Jus tell her to brush dem shouldaz off girl! We can bling up that helmet fo sho! A'ight den.

Giggi said...

Oh girl, I am inspired by your humor. And trust me you ain't got no muffin top. Your girls pics are beautiful. I am so sorry for all the tough news, but you are right that it is all needed to get sweet Ella on the road to recovery. One day you'll be putting those pics of her in her bedazzled helmet in her senior scrapbook remembering how much the Lord has done. God bless you all - you're in my prayers!

Kerstin said...

Just wanted you to know that even though Nurse Kerstin is all the way in Denver she still thinks about her little Ella Bella and all of you guys! Y'all are definitely still in my prayers.

LYN said...

Forever live boogers! I caught one of my grandsons picking away...and I said, "Oh, honey, don't do that." He said, "OK" and promptly put his finger with the booger in his mouth. Oh, well! Gotta love them, LYN