Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Friday, March 30, 2007

Day +21

Alivia got a dress today and she was instantly in love with it and had to put it on over her pj's. Thanks Mrs. Kachur.

Here is Alivia helping Nurse Carol with her tubes.

Alivia recieved a bunch of nice gifts today and one not so nice one....an NG tube. The doctor came in at 7 am and informed me that she was getting one today. I was half asleep and in a state of shock so I just nodded. When I woke up more and my dad got here we talked about it and decided we wanted to talk to the doctor about it more so he came back and we talked to him, then to numerous nurses, Gigi, James and our transplant doc (who happened to be on the floor but not on service this weekend). All the medical people said that it was inevitable because by the time all of her meds are oral she will have to take up to 30 doses of meds a day. That means if they are all oral I will spent my entire day giving meds. No thanks. The next decision was to give it today or wait till Monday. Either way no fun. So after much discussion James and I decided that we should get it over with and give her a little more time to get used to having the tube. So 2 nurses came in and we started the whole process. It was horrendous. The measure the tube so that it will end up right inside the stomach and then can be taped to her check. She knew something was up and wasn't too pleased. Then they dip it in lubricant and start feeding it up her nose and down into her stomach. She flipped (as I would have) and she wasn't swallowing (what you need to do to get it down) and it came out her mouth. She was distraught, I was ready to freak out. I picked her up (I had been helping to pin her) and held her and she just grabbed onto my neck and wouldn't let go. She just kept saying Mama over and over and really crying. It was the saddest thing. AFter a bit I had to peel her off and lay her back down. It was so hard and I just wanted to call it quits and hold on for dear life. We tried again and she was crying but I was able to talk to her and tell her to swallow and she obeyed me (cause she is the best kid ever) and after a bit they got it down. Then she started to gag and throw up. They said it feels like a pill is stuck in your throat. The throwing up lasted for a bit and we got her some anti-nausea meds and I held her till she fell asleep. She didn't even want me to move for the longest time. Once she was asleep I finally let myself cry. This was one of the hardest things we've had to do in a while. All the chemo was hard because we knew what it would do but we never had to pin her. This was different and she was so sad even when she finally woke up from her nap (over 4 hours later). If you asked her what she wanted to do she would say no and point to her nose as if to say "I can't do that I have a tube in my nose" By the end of the eveing she was starting to perk up a little but is still pretty worried about the tube. Pray she gets used to it and it doesnt' even cross her mind anymore.
Her is what she looks like with the tube. Still the cutest girl I know. (and the sweetest and the bravest)


Thanks you to...
Georgann Kachur for Livi's new favorite dress and for the realy great cookies and brownies
Rach for the card
Jen Van Buskirk for the card
Sherry Vislosky for the stickers, flip-flops and book
Henry and Sherry Hill for the generous gift and card

Thanks to the following people who helped with the nurse gift
the Sheffer Family
The Bowden's
Diana Bennett and family
Shannon George
Cathy Schloemer
Deb Bartek
Jill Piper
Bonnie Myers
(most of the people on this list work with my dad...again I am so everwhelmed by your wanting to help me and bless James, Alivia and I. My dad sure works with some great people)

25 Comments:

Anonymous Anonymous said...

Livi just looks like a princess in her new dress! She is an amazing little girl to go through so much, but come out with a smile on her face. She know how much you love her.
I'm so sorry to hear about all that Livi had to endure on Friday. We will continue to pray for all of your requests and that God bless you with joy and peace with each new day.

1:16 AM  
Blogger Tori said...

As I read today's entry I just couldn't even imagine how hard it must have been to go through all of today's events on your end or Livi's end. And then to see the picture of Livi at the bottom shows what an amazing little girl you have and what an amazing mom you are. I pray that the Lord will give all of you sweet rest tonight and heal dear Livi. Vicki G.

1:46 AM  
Anonymous Anonymous said...

harrowing experience to say the least. You guys are all so brave. Cancer in a nutshell: SUCKS! I am glad that you were there to comfort her and help her through that ordeal. I am sure when she is old enough she will thank you for all you have done for her. We are always praying.

Love, Les

5:33 AM  
Anonymous Anonymous said...

My heart just aches for you! It is amazing how often you come to my mind througout the day. We have 2 teenage sons who are quite a challenge these days, just your typical teenage stuff! I find myself complaining then have the opportunity to read about your day! hmmmm. I can not wait till your biggest stress is when Alivia doesn't do her homework or gets a little sassy because she thinks you know nothing! ha ha (don't blink, those days will be here before you know!) You are an amazing mom! Did you ever think that you could touch so many people! I am truely honored to somehow feel as though we are apart of alivia's journey and to someday soon show her picture and say this is the angel we prayed for! Look how awesome our God is! Alivia is living, thriving proof his grace and love for us! In him, Mindi

7:41 AM  
Blogger momofcolin_chloe said...

Emily,

Stay strong. You can do this! Noone better for this job than you! You're such a great mom. You're doing such a good job! And, although that tube is yet another thing you hoped your baby would never have to endure, it's one more step to a healthy Alivia. Praying for it to not bother her and for the tube feeding and meds to do all that they should. Praying for healing always.

Christi

7:58 AM  
Blogger Jude's Mom said...

I cried and I wasn't even there. If I had to do what you did, I can't imagine how I would be, Emily. I think it sounds like you were amazing! The strength God is giving you...WOW! I'm sure you don't always feel that way, but you ARE strong and I think you might be the bravest girl I know! :)

Love,
Julie

8:36 AM  
Anonymous tina said...

i agree...she's still SO SO beautiful, even with the tube. it's AMAZING to me that you didn't cry til afterwards. i will pray for livi's adjusting to all of this. xoxo

8:39 AM  
Anonymous Anonymous said...

I arrived at the hospital yesterday AM full of faith in the sovereignty of God, and quickly "stumbled" when confronted by the ng tube thing. I was so distraught I didn't stay in the room for the placement. But you did Emily, you got her through it...helped her to swallow it and had to hold her down. As you said afterwards, "I feel as if I can't protect her from anything!" So I prayed to God "Answer me quickly, O Lord! My spirit fails! Hide not your face from me, lest I be like those who go down to the pit {the pit being that each request for something not to happen to Livi has}> Let my hear in the morning of your steadfast ove for in you I trust. Make me know the way I should go, for to you I lift up my soul. Psalm 143:7,8
So God sent me my husband Dave, who is encouraging us all every day with his faith and gentle wisdom, to point me to how thankful we needed to be God for this day. It was perfect. Gigi
Please, all of you, I implore you to pray for Livi and Emily. Livi has begun to sigh audibly more and more, especially today. Thanks

11:17 AM  
Anonymous Monica C. said...

Oh that poor, sweet, sweet baby girl. I am so sorry she had to endure that ... and Mom, I just want to send you the biggest hug in the world!! Thank the Lord it is over, and hopefully she will forget it is even there. Every time the image comes back in my mind of what you guys went through, I feel so sad! Again, thank God it is over. God bless you guys!

11:23 AM  
Blogger Patty W said...

Poor Livi and Emily,
What a hard thing to go through. NG tubes are something on my list of things I do to people but never want done to me. I have been on the "putting in" end of many of those and believe me I know how hard it was for all the nurses involved too. After one of those episodes you have to go to the bathroom, have a good cry, and re-convince yourself that you really are helping people and not just torturing them. What constantly amazes me is Livi's ability to bounce back after these things. What a great spirit she has and ( from looking at her in the pictures) what a great "hambone" she must have. Once again hope you can feel all our love and prayers. pw

11:27 AM  
Anonymous Anonymous said...

~ Our children mean more to us then anything we could ever have -- -- I can't even begin to imagine what you are going through ...
You are always on my mind..
Phyllis

11:33 AM  
Anonymous Anonymous said...

I'm a mom whose heart breaks when my boys have to get shots--I can't even imagine how hard yesterday was for you. I'm praying for joy in the midst of your daily trials, and for quick healing for Livi.

May you all know God's nearness today.

With love,
Amy

1:11 PM  
Anonymous Anonymous said...

Emily-
If reading your account of yesterday is overwhelming, I can't imagine what living through it must feel like. As I pictured precious Livi clinging to your neck for protection during the NG tube ordeal, I thought of you clinging to "the Lord's neck" for protection during this ordeal. I pray that He will continue to uphold you with His srong right arm and grant you peace as you walk this road.
Praying and praying-Grace

1:37 PM  
Anonymous Anonymous said...

I'm so sorry she had to have the NG tube! Reading what she and you guys went through just about killed me. I can hardly stand it. I'm praying for all of you. I think, that pretty soon, her little nose and throat will adjust to that tube being there, and she won't stay so aware of it. What a brave little girl. What a brave mommy. She's still the cutest girl around, even with that nasty tube taped to her little face. Only Livvy could make an NG tube look good, and she has.

You guys amaze me every day. We love you.

kristi

2:17 PM  
Anonymous Anonymous said...

Looking at the pictures of Alivia and how her appearance has changed over the months, I can't help but notice that some things stay the same; those big beautiful blue eyes, that lovely smile that's so full of life, and her resilient, joyful, tenacious spirit.

Some things are constant, some things are not.

But the same God who is constantly with Livi through this time of many changes, is the same God who gave her those constant qualities that we've all come to recognize and love about her.

Livi is such an inspiration. She's a living example of childlike faith. I wish I had the courage to obey every time I go through something painful. You've got a real heroine there, and Livi's got several heroes and heroines around her.

Still praying.
Alicia Joy LeBlanc

2:54 PM  
Blogger Bueche said...

Grace has and will sustain you, Emily and James.

We Bueches are still in full faith for Alivia. God is building something beautiful in all of you - to His glory.

3:21 PM  
Anonymous Anonymous said...

Oh, my gosh, Emily!
What a gut-wretching thing to go through! Just reading it was painful! You poor dear and poor little Alivia!
And, yet, you still can write about gifts and thank-you's and post beautiful pictures. That is SO evident of God's grace in your life. Jesus had to be right in the room with you, catching the tears and recording them in His book.
Hang in there! So many are holding all of you up in prayer. What an honor it is to pray for you, to know that God is near to you all to comfort you.
I pray that the tube doesn't bother her too much. Whatagal! Even when she was going through the worst of it, she had confidence in you that if you told her to swallow, it would be the right thing to do because her Momma would want the bestest (yes, I said "bestest" for her little girl!
(I think there's a spiritual parallel there, too.)

Still praying!

Mary Ann K.

3:37 PM  
Anonymous Moriah said...

While reading that post, tears came to my eyes. You are so brave emily. I can't imagine having to watch your little girl go through that, but you did what had to be done, even though it was so hard. I am glad you got to snuggle with her though after it. And just remember that it's ok to cry. You are going through a lot, and crying isn't a bad thing. Keep trusting God, and I will keep on praying for you guys.

love ya all,
moriah

P.S. Just like you said, she is still too cute even though she has a tube through her nose! :):)

5:28 PM  
Anonymous Anonymous said...

What a beautiful little princess! I'll continue to pray for little Livi and the rest of your family.
Love you, Maureen

6:34 PM  
Anonymous Anonymous said...

So, so sorry that you had to go through the NG tube ordeal. I sure hope they put the numbing spray in her nose first, at least! I am betting that she is already getting used to it and will, in her usual amazing way, bounce back again....My heart goes out to you as you had to be such an extra brave mom. Praying for healing, praying for comfort, praying for peace. God bless you -
Cathy S.

7:28 PM  
Anonymous Ang said...

I'm in tears after reading this entry & praying to God to have mercy on sweet little Livi...

-Ang

8:52 PM  
Blogger All the Millens said...

How hard - I can't imagine. These difficult experiences grip my heart. But the cutie pie photos make me smile.

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort, who comforts us in all our affliction..." 2 Cor 1:4

Katherine

10:32 PM  
Anonymous Anonymous said...

I'm so sorry about yesterday. that is really traumatic sounding -and i know what you mean about comparring it to chemo because you dont have to take physical part in that. It must be so hard to do something like that when it is the total opposite of what you want to do. im sure you were holding on to her just as tightly as she was holding you - so i am blown away by your love for her...that you wouldn't say "this is too hard for me to do, get someone else" but that you would be the person that is with her through it all. it is constaint unselfishness and unconditional love you show her day after day. if she goes through it, you go through it with her - such a reflection of Christ's love for us.

i love you and im praying so much for your whole clan.
love rebekah w

12:44 AM  
Blogger beth said...

love, prayers,
beth

8:57 AM  
Anonymous Anonymous said...

As I wipe the tears off the keyboard in order to type I am AGAIN amazed at reading that it wasn't until after she fell asleep that you cried. That has to be God's grace. Amazing to me. You are a rare find and despite all of Livi's trials, God sure knew which Mom she needed.
My first thought was that the quicker she gets nourishment and built up, the faster she can heal and go home. I pray that this tube does the job it is designed for and gets out and that Livi doesn't even notice it soon.
I am praying for you to feel his grace and simply to heal Alivia.
God Bless
Diana B.

8:55 PM  

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