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.

Monday, April 02, 2007

Day +24

The last few days have been filled with frustration for me. As you know Alivia got the NG tube on Friday and up until this evening I had not heard her laugh. If you know Livi you know she is a happy, smiley girl and so days without her laugh is torture. This tube has affected her so much. They keep telling us she will adjust but I dont' see it.

The most frustration stems from the seeming miscommunication between doctors. Up till now things have been so smooth and great but this NG tube experience and the discussions of discharge have frazzled us all. On Thursday I talked to Dr. A (we'll just call them Dr. A and B for reference) and discussed the possible NG for Friday or Monday. Then Friday at 7:15 I was awoke by Dr. A telling me we would do the tube that day. I was shocked as we had decided after much discussion to wait till Monday. I talked to my dad, James, mom, the doctor again and the nurses and after pressure decided to go ahead with it. The next day we talked to Dr. A again and said how bad it was and he said "if she'll eat and take her meds orally we'll take it out". I was under the impression that it had to be done. Well today Dr. B came in and said we had to do some meds orally and that we wanted to remove the tube as soon as we can. My question is why did we do it in the first place? Part of the reason was her eating wasn't enough to get off IV nutrition and the other so she wouldn't have to take oral meds. Now because of the tube she won't eat at all, she almost constantly pooping (10 times today) and she still has to take some meds orally.

The other concern is discharge. They would like to discharge us later this week which would be amazing if we had somewhere to go. But our house is still in a major state of disrepair because of all the improvements we are doing to make it safer for Alivia (ie..as germ free as possible and with the best air quality for her) There is a place that they usually send patients too but it is not currently available because it is being renovated. So we are stuck in a holding pattern. Can't go home, can't stay here. Never thought I would actually want to stay here longer than needed but I don't feel safe taking her just anywhere.

We definetly need a huge dose of prayer.
1. That she would start to eat
2. That the pooping would stop being so frequent
3. Her bottom would continue to heal (it looks pretty good but all the pooping could make it bad again)
4. The NG tube issues would be figured out (ie. keep it, take it out, feeds, meds, etc)
5. That they would find a place for us to go.
6. That they wouldn't discharge us on Friday. Weekends are really hard to get a hold of someone if you have a problem because clinics aren't open so I would much rather be discharged on a Monday.
7. That work would get done at our house so that we could go home.
8. That Livi would be happy again. She spends her days with her head cocked to the side that the tube is taped to. She is so aware of it. She just sits and sighs. She even sighs in her sleep. They say when you are sad you don't heal as well and she is most definetly sad.

27 Comments:

Anonymous Anonymous said...

Emily, im so sorry. im sure confusion is just another thing extra after all the saddness and hardship this already is. im glad i checked this before i went to bed so i can pray for you tonight.

i pray you sleep well...knowing that the Father in heaven never sleeps, never takes a break from sustaining us and loving us and comforting us.

i cant wait till this is over for you and james and livi. God is near and he is not confused and his promises are never contradicting.

love you and im thinking of you and praying for your night.

rebekah

12:40 AM  
Anonymous Anonymous said...

I am so glad to have checked one more time before bed. I can't even imagine how hard this must be for you all. But I do know that God is at work and He will only do what is best! I also know that He will be faithful to supply all the Grace you need to walk through this. He is not surprised... His plans are not thwarted by confusing or conflicting doctor reports. Rather, our God is sovereignly, lovingly, perfectly working all in the best possible way for Alivia and for all of you.

I can just imagine now that He is lovingly placing His hands on your face and gently lifting your eyes to look toward the hills for your help... to see Him as the Maker of Heaven and Earth knowing that He will not let your foot slip, that He will never take His eyes off of you or Alivia... that He, who watches over you, will never slumber or sleep.

Renew their strength, Lord. Increase their faith... fill them afresh with your spirit. Please Lord, give them sweet rest tonight and fresh grace for the new day!

We will continue to pray... thanks for letting us know how!
Rochelle Calvetti

2:04 AM  
Blogger Kathi Baillie said...

Emily,
I check in here daily and I'm praying for you all. I am so sorry about the miscommunication and Alivia's response to the ng tube. Praying for God's sustaining grace to literally hold you up during these difficult days. Trusting that soon, soon your sweet girl will giggle and laugh and smile again and that her sighs will be a distant memory.Thought this poem might encourage your weary hearts...
Sustaining Grace byJohn Piper
Not grace to bar what is not bliss,
nor flight from all distress, but this:
The grace that orders our trouble and pain , and then in the darkness is there to sustain.
Praying for you and carrying you on my heart...
Kathi Baillie from Sovereign Grace Church in Cherry Hill

8:05 AM  
Blogger momofcolin_chloe said...

Praying for it all right now. Hope that it all comes together and you are able to go home to a complete and healthy house. I wish I was closer to help in some way.

Also, I promised you cards for the nurses, but I won't be sending them now. Chloe has the measles! I know, right!?! And, her doc said she shouldn't be contagious, but we won't risk it.

Praying, praying, praying!

Christi

8:05 AM  
Anonymous Anonymous said...

Praying this morning!

The Yoders

8:19 AM  
Anonymous Anonymous said...

What an overwhelming ordeal. I cannot even begin to imagine, but God does. Hebrews 4:15-16 says we have a high priest who is able to sympathize with our weaknesses, so we are able to draw near to the throne of grace with confidence, to find grace and mercy in our time of need. I pray for much grace and mercy for you as we await God's answers to the requests we make on your behalf.

8:31 AM  
Anonymous Anonymous said...

Emily,
I'm so sorry and sad for all you (all) are going through, esp. Alivia. You are on my heart and in my prayers. Praying for a quick and complete healing, smiles and laughter.
Maryann Plesnicher

8:45 AM  
Blogger Jude's Mom said...

I shall never complain about having to change more than one poopy diaper a day again! You poor thing! And poor little Alivia. I'm assuming she still has a sore behind as well.

Praying! More and more all the time!

Love,
Julie

9:52 AM  
Anonymous Anonymous said...

Please know that we continue to pray...

10:04 AM  
Anonymous Phyllis~ said...

The sadness and uncomfortable feeling you are enduring is more than any one should have to go through.
I do Pray for you ..and I really hope the doctors can come to a conclusion to help DARLING Livi -
PLEASE KNOW THAT YOU ARE IN MY PRAYERS
GOD GRANT YOU PEACE AND COMFORT
Phyllis

10:29 AM  
Blogger Bueche said...

Emily, the troops are rallied and praying with renewed vigor.

I just got off the phone with Loretta and updated her regarding your latest entry. In between her tears, she said to tell you, that “When we pray for Alivia it is as though we are praying for our baby, and when we pray for Emily, it is like we are praying for our girl.” She speaks for all us Bueches in that.

You may already be doing this, but don’t be afraid to go “Mama-bear” on these doctors. They may have the expertise, but nobody knows Livi like her Mama. You have every place to aggressively question and challenge them, respectfully of course, before you and James make decisions for Alivia.

Please pardon the presumptuousness of my giving advice. I try to stick to encouragement. But Loretta and I have been in this situation a few times; none nearly as serious as yours, but they felt serious to us. Guess what. Mama-bear was right.

10:37 AM  
Anonymous Anonymous said...

You are SO right about Mama Bear, Tom Bueche!
I'll just leave it at that...
God is not confused over Livi's situation, as the "experts" are. Thank God for modern medicine, but thank God even more that He is in control and for His sustaining grace! Just the right "dose" for every situation!

Still praying!

Mary Ann K.

12:01 PM  
Anonymous Moriah said...

I will pray for you guys. I hope and pray you hear your sweet little girl laughs soon. Keep trusting God, he will make a place available for you guys to go. You are in my thoughts and prayers.

love ya all,
moriah

12:11 PM  
Anonymous Anonymous said...

Oh, honey. You must feel so, so frustrated. I'm so sorry! To have to see your baby suffer, and then to have confusion surrounding the most current cause of her suffering must feel unbearable. And then, on top of that-- being pushed into a new unknown. I'm feel so bad for you and your family. I can't begin to imagine how pressed down you must feel.

The only encouragement I have is to ask the Holy Spirit to comfort and still your heart, as often as it is in turmoil. It may be hundreds of times per day. But He promises to comfort as often as you ask.

from an old hymn

"Fear not for I am with you, O do
not be dismayed;
for I am your God and will still
give you aid;
I'll strengthen you, help you and
cause you to stand,
Upheld by my righteous, omnipotent
hand.

When through fiery trials your
pathway shall lie,
My grace, all-sufficient, shall be
your supply;
the flame shall not hurt you; I
only design your dross to
consume and your gold to
refine.

The soul that on Jesus that has
leaned for repose,
I will not, I will not desert to
his foes;
that soul, though all hell should
endeavor to shake,
I'll never, no never, no
never
forsake.

praying for you,
kristi

12:58 PM  
Anonymous Anonymous said...

Praying hard for each and every single request... Wish there was something else I could do. I hope Alivia's smile and laughter bounces back and that healing is stonger than ever! Sending you good thoughts so that you may smile and maybe the contageous factor for that will be a good thing for Alivia to catch! Love, Jessica

1:16 PM  
Anonymous tina said...

praying today. much love xoxo

4:09 PM  
Anonymous Anonymous said...

I can only imagine the knot in your stomach, the frustration, and probably not a little fear as things seem to be going a bit crazy with, "What are they doing with Alivia and the NG tube?" and "When/how can you go home?" Praying for resolution that makes sense, praying for healing, praying for comfort and peace for all of you - that means for sad Livi too. God bless -
Cathy S.

4:50 PM  
Anonymous Monica C. said...

I hope they take that draned tube out asap and I PRAY that Alivia would be so thrilled to have that tube out that her appetite would rebound and she would start eating and drinking on her own again. Thank you, Lord!

I pray for a nice, clean, safe, germ-free, wonderful environment for Alivia to live in upon her discharge - whether it is her home or someplace else - I'm thanking the Lord in advance for providing a wonderful refuge.

Thank you, Lord for: being in control, making a way out of no way, your grace, your mercy, your healing, the Holy Spirit, your love, your promises!

God bless you guys!

4:59 PM  
Anonymous Anonymous said...

I'm praying for you guy's. Emily, you and James, and Alivia are troopers. Alivia is a blessing to you and to our church. God uses trials to bring us closer to Him.
Pamela Bueche

6:33 PM  
Blogger Lynne said...

My heart breaks for you all as you try to sort out what to do next, to make sense of oonflicting directions....Know you are in my thoughts and prayers...
Lynne T, Den too!

6:39 PM  
Anonymous Anonymous said...

You all know (though we all need to be reminded) that God carries out all things within His own perfect timing. Whatever He has now for you, Alivia, James, or anyone else has been carefully and perfectly planned for your best. When you don't trust, or seemingly can't trust, ask Him for more faith and He will give it to you!!! We are praying for dear Livi and for all of you.

Chris & Steph Freeman

7:18 PM  
Anonymous Hannah Byers said...

We will be praying for all these very important needs! God will work out every detail! Keep on trusting. We will be praying with out ceasing & will be praying tomorrow in the Minich's Care Group! Keep smiling for your girl & she will start to smile again, it's contagious! :)

Blessings,
The Byers

9:44 PM  
Anonymous Anonymous said...

GOD BLESS YOUR NIGHT
PRAYERS TO ALL
Phyllis

10:17 PM  
Anonymous Anonymous said...

Praying for joy.

Love,
Amy

11:25 PM  
Anonymous Anonymous said...

Emily and dear family,
I cannot begin to imagine your frustration. I am frustrated just reading about it. But to live it ... God is our Unshakeable, Unflappable Rock. He doesn't change, and I am so thankful for that in the midst of confusion and constant change. Praying for your stamina, emotional as well as physical. And, mostly, always ... for a miracle. :) He is the God of miracles. Janet S.

11:46 PM  
Anonymous Anonymous said...

You don't know me, but I have been following your story and praying for you and your family. Your faith is such a tremendous example. I am sorry Alivia is going through this, but she is so lucky to have you helping her through it. If Alivia is able to use the computer, check out this website- kneebouncers.com. I have a daughter close to the same age and she loves it. They can hit any key to activate it.

1:10 PM  
Anonymous Anonymous said...

Emily,

You do not know me, but I work with your Aunt Kathy in Pittsburgh. I have read your blog almost everyday since Alivia was diagnosed. I have a little boy who is a few months older than Alivia and I cannot even begin to imagine what you are going through. Please know that you and your enitre family is in my thoughts and prayers daily.

I know at one time, you were asking if anyone had any Pampers Reward codes they were not using. I had quite a few saved up, but did not notice that they had an expiration date on them. Here are a few that are still good. They all expire on 3/1/08.

6RHNTHHKJW4JMWP
7K9T7V6977DK76X
GKKGDV4WTKKXTWW
KV7HCX6JTWPVNDH

Alivia is so lucky to have such a wonderful mommy and one day she will thank you for everything you've done. You are an inspiration to more people than you know.

Sue Sonson

2:58 PM  

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