Thank You!

It has been an extremely long day for us and if Lily allows, we will be going to bed soon! I can just feel my head hitting the pillow and it feels wonderful!
Our room here is TINY and although we have a bead/couch thing....it only sleeps one person and we are not allowed to have a cot in our room. Since Lily is nursing I have to be with her...not that I would have it any other way...but Josh is not going to be sleeping in here with me :( He had originally planned on sleeping on the floor but our night nurse came and told him that he can sleep on the couch in the PICU waiting room and he jumped at the chance! Happy for him but sad for me...hospitals make me nervous and I hate the thought of being alone here but I will be fine...I hope! I am such a baby!!
Lily had a sponge bath tonite but HATED it...she doesn't want to be held, she doesn't want to sit, she doesn't want to sleep...she is grumpy and restless! I guess I don't blame her, I would feel the same way if I had a tube in my nose!
We are hoping to leave sometime tomorrow, hopefully by noon!
I will post again in the morning with some pics!
Goodnight!

FYI....I have had over 50 hits on my blog today! I know that doens't seem like alot but I usually have like 5 a day so this is a big deal! Not that I really care how many people are looking at it BUT...I am confident that the lookers are also prayers and we appreciate the prayers! So far the news we have gotten has been good and we thank God for that...we are now just praying for answers!

Live from LBK

We got here last night around 7 and spent the night in a hotel. We were up bright and early this morning, 4:45 to be exact, and got to the hospital around 6. Lily has had her scope and biopsy and her pH probe is in place. Dr. H said that the scope looked "normal"....normal for someone with GERD (gastroesophageal reflux disease). We will not find out the results from the biopsy until the end of the week...possibly later.

Here are a few pics from our experience so far!


In the surgery holding room with mommy!


In the recovery room...tube in place!


Resting peacefully in her crib...AKA the metal baby cage!


See....I told you it looks like a cage! Lily obviously doesn't seem to care!


Awake and happy...chewing on her apple juice bottle!
Can you tell the bottle is a "foreign" thing to her???


Lily checking out the view from her room!


Going for a ride in the wagon!

The pedi hospital here is so nice! Today is the first day patients have been on the floor!
I will post some pictures this afternoon....Lily is ready to nurse and needs a nap!

Thanks for the prayers!
Hope everyone has a wonderful day!

One cute boy and one beautiful girl!

Last week was beautiful so we took advantage of the nice weather and soaked up some sun!
We had one of my best friends, Krystin, and her little boy, Preston, over a couple of times and the babies played while we drank sweet tea from Sonic...we LOVE happy hour!

DAY ONE!

I see you miss Lily!


Such a handsome and happy little boy!

DAY TWO!

Hey Preston! Come play in the pool with me, I promise I won't pee in the water!


I'm actually pretty happy here, but thanks for the invite!
I'll just watch you! You look pretty cute in your swimsuit!
Do you think you might want to grab a bottle when we're finished here???

Krystin and I always have fun together, and as you can see...so do our babies!
We love you guys!

SISTERS

This is the best snowcone I have ever had!

Here baby Lily, you want some snowcone??

Hey, can I get some more of that??

That's more like it! Thanks sister, you are the best!

I absolutely adore my girls!

a little update

It has been a beautiful week here in the Texas panhandle! We have spent the majority of the afternoons outside playing on the swing set, in the pool, jumping on the trampoline and blowing bubbles! I LOVE the warm weather! Sorry for my absence with blogging, it has just been too nice to be indoors! I should get caught up over the weekend though, we are supposed to have several days of rain!

Just a little update on what is going on with my itty bitty!
We got the call from the doctor today saying that her procedures are for sure scheduled for Wednesday...April 29th. We will arrive at Lakeside Hospital at 6am and she is scheduled to undergo a scope and biopsy of her esophagus and stomach at 8am. While she is still under anesthesia, Dr. H will place a probe at the opening of her stomach which will stay in for about 24 hours. After she gets out of recovery, she will be moved to Covenant Childrens Hospital. We will stay there until the probe is taken out and will hopefully be released sometime Thursday afternoon.

I have been very hesitant about all of this but after talking to the nurse today I am feeling more confident about it. I have also been reminded of a song that I sing to Lily daily as I am rocking her to sleep.

Tis so sweet to trust in Jesus
Just to take Him at His word
Just to rest upon His promise
Just to know thus saith the Lord

Jesus, Jesus how I trust Him
How I've proved Him o'er and o'er
Jesus, Jesus precious Jesus
O for grace to trust Him more.

This is one of my favorite hymns...and one of my favorite songs to sing to my sweet Lily!

It is now time for bed!

Goodnight!

Lubbock

So it looks like we will be spending a few days in the exciting city of Lubbock sometime in the next couple of weeks! No, no....not for vacation....we are headed to the hospital!!

Lily had her appointment yesterday with her pedi gastro doctor. After reading over her history since he last saw her, asking me a million questions, seeing her tiny size and getting insight on her "blue episodes"(more than likely being caused by aspiration), he came to the conclusion that medicine alone for her reflux is not doing the trick. Most kids are supposed to outgrow this by the time they are one and Lily's only seems to be getting worse. We have been uping the dose of her medicine to match her weight and she is at the max dose but is still so uncomfortalbe, especially at night, not gaining any weight and not eating.

We are not sure of the dates yet but more than likely we will be headed to Lubbock one week from today. Lily will be admitted to the hospital and several tests will be performed under sedation. She is having an esophageal scope and biopsy done to check the anatomy and condition of her esophagus and to make sure there isn't anything else going on. She is also having a ph probe placed at the opening of her stomach that will monitor her reflux episodes and measure the acidity of the fluid that is coming back up. It will be attached to a tube that will come out of her nose....and this is supposed to stay in place for 24 hours. We are hoping and praying that everything goes well and that we get some answers!

I am so torn with all of this. I hate seeing Lily hurt and I know we need to do SOMETHING for her reflux but it also breaks my heart to think about her going through all of this. Please join me in praying for painless procedures for her and peace for me!

Lily just woke up so I am off to get my sweet baby!

One more thing!! Stellan is having heart surgery this morning...as we speak...please say a prayer for him, his family and the medical team involved in his care! His button is on my sidebar if you want to read about his story!

following in daddy's footsteps

I am such a proud mommy!
Do you see that little soccer player??
The one with the PINK socks??

That's MY girl!
Daddy is pretty proud of her too!
He has played soccer since he was her age and was REALLY hoping he would follow in his footsteps!
So far, so good!!

Listening ever so intently to the coach, AKA Daddy!

Why is her mouth open??
Who knows!
Maybe she is yelling at someone to kick the ball to her!

Soccer practice...once again we are wearing PINK!
Kiley was upset to learn that she could not wear a dress to play soccer in but eventually cheered up after I assured her she would at least be able to wear pink!
What a girlie girl! I love it!

Mommy and Lily during soccer practice!
She absolutely loves my sunglasses!

I am so glad Kiley is playing soccer!
It is so much fun to watch...they don't really play, they just run in a cluster around the ball!

I hope everyone has a wonderful weekend!

Lily Bug Birthday

I am almost a week late but here are some pictures from Lily Bugs 1st birthday party! We had such a wonderful time...thanks to all of our family and friends for coming and sharing this special day with us!
(The pics are out of order but I can't figure out how to fix it!)


Mom, that was the most fun I have ever had!!


Mom, that icing looks great on your chin! Why does my sister look so scared??
Does anyone notice that my shoes match my cake perfectly???


What was mom thinking when she decided to use RED icing??


I am naked and ready to go...bring on the cake!


Here I am opening my gifts...I really wasn't that interested!


Mommy made me eat dinner before I got my cake....how awful!!!


Here is my cake...isn't is cute???


Me and my daddy hagning out before the party started!


Showing off my uber cute tutu!

And there you have it....pictures of the party....in backwards order!
Happy Birthday to my sweet little lily bug, I love you so much!

My big girl!

My sweet Kiley is growing up so fast and I am reminded of that daily!
Tonite, we made our weekly trip to Walmart...yay!
Kiley asked daddy if she could buy something with the money in her piggy bank...we give her change as incentives for helping mommy around the house!
We have never even counted the money so we had no clue how much she had! To our surprise, she had 15 dollars....in change....so we dumped it in the Fancy Nancy purse and off to Walmart we went!
Once we got there, we spent over 30 minutes picking out what she wanted...she wanted everything! She finally decided on ANOTHER HORSE!!
All of you who know Kiley know that she LOVES horses, ponies and unicorns!
So yes, we now have another one...without a name...she still hasn't named the two she got for Easter!
She is such a silly girl but I love her SO much! She is growing up to be such a sweet little girl and I am blessed by her daily!

On a side note, itty bitty is feeling better and no longer sounds like a seal! We will be going to Lubbock on Monday to see her Pedi Gastro Specialist...whom we have not seen in sometime. Dr. Scott is concerned about her lack of weight gain and lack of desire to eat, she thinks that her meds might possibly need to be changed....which is like playing Russian Roulett...please be praying for her...and for mommy, I need some sleep!

Happy Thursday!

Itty Bitty

I hope everyone had a wonderful Easter weekend!
Lily's party on Saturday was so fun and Easter Sunday was filled with church, hunting easter eggs, CANDY, big meals and family....we had a great time!!
Lily went to the doctor this morning for her 1 year check up and guess what??? she is TINY!!
I knew she was small....probably because she is still wearing size 2 diapers and 6-9 month clothes but I was shocked when the scale said 17lbs and 4oz....what???? and only 27 1/2 inches long....what?? BUT....her head is a whopping 18 inches! She is in the 3rd percentile for weight, 10th for height and 50th for her head!!
She may be itty bitty but she has a big ole brain....way to go Lily!

The bad news is....she is sick! After spending some time at the hospital getting x-rays....it was determined that she has a sinus infection and inflammation of her airway....which makes her sound like a seal when she coughs and breathes! Back to inhalers and medicine!

I will try and post some pics of the weekend when my baby starts feeling better!

Lily is.....

My sweet baby angel is ONE!!! The past year has flown by to say the least!! We are having a big birthday party tonite so I don't have time to write much of a post....I need to try and get Lily's personal, milk-free cake made while she is napping. I just finished rocking her to sleep while singing "Happy Birthday"....and crying! Both happy and sad tears!

Hope everyone has a wonderful weekend and Easter Sunday!

Easter and birthday pics will come next week!

Much Love!

Randomosities!!

Is "randomosities" even a real word??? Obviously not since my spell check is putting a bright red line underneath it but for today I am making it one!

I have alot to post about and finally got my sweet husband to upload my pics from the last few weeks but I am busy doing laundry and cleaning the house so I thought I would just post a few pics!

Happy Birthday Pa....we love you!!
Have we told you that you look younger and younger every year!!


Daddy and Kiley about to play in the snow....or should I say BLIZZARD! We got over a foot of snow!


Here are Kiley and I at her 4 year well visit! She is all smiles here but that soon changed when she found out she had to get FOUR shots! All of you moms who think it is hard holding your 6 month old down...wait until they are this age....it took THREE of us!
Don't worry though, her cherry lime from Sonic brought a smile to her face! We LOVE happy hour!


And sweet Lily with daddy....this is her FAVORITE thing to do....sitting on daddy's shoulders! Take notice of the ever so famous mohawk....not like I needed to point it out, you can't miss it!


I am afraid that is all for now....Lily is awake and we need some outside play....sidewalk chalk here we come!

We are going to see the Easter Bunny tonite....pics from that coming tomorrow!

Have a good Thursday afternoon!

The verdict!

As I blogged about yesterday, Lily's face has randomly been turning blue around her mouth and nose...for no apparent reason!
We went to Dr. Scott yesterday....LOVE HER....and she checked my sweet pea out!
She said that her heart sounded wonderful and she was certain that if something was wrong with her heart, we would have noticed it during one of her previous hospital stays. This lifted a huge weight off my shoulders!
She does however, think that it is an oxygen deficiency....but she is unsure what is causing it since there isn't really a pattern as to when it happens. Lily has definitely had her fair share of lung problems but she has been doing really well over the last couple of months so things are kind of confusing! She wants to monitor Lily's oxygen levels so instead of putting her in the hospital to do it there...AWFUL...she has arranged for a local home health care place to set us up with a pulse oximeter to use at home...WONDERFUL!!
I was told to make a journal of her oxygen levels throughout the day while she is doing different things and to most definitely keep an eye on them during her "blue" episodes! Hopefully this will give us some insight as to what is going on!
Thank you for your prayers!

I added a "Pray for Stellan" button to my page. I read MckMama daily and Stellan is her son. Click on the button to see their story and keep them in your prayers!

Much Love!!

Say a little prayer!!

Please say a prayer for my sweet Lily....over the last few weeks, she has been turning blue around her nose and mouth for no apparent reason. It happens while she's playing, sleeping and eating....but she shows no signs of distress. I decided to google it yesterday....BAD IDEA....all I found was alarming news so I decided to call the doctor....trying not to jump to conclusions as to what is going on with my baby! They most definitely wanted to see her so we are going in today at 2...I would be lying if I said I wasn't a little nervous! Lily really has been through alot in her short life....I am praying that this is nothing to worry about!



Have a wonderful Wednesday!