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.

Tuesday, July 03, 2007

Day +115

Today was rough...rough, rough, rough. I spent a large amount of time crying. It started with little to no sleep last night and got worse as the day progressed.

Last night Alivia had a fever. Not a strange thing for a transplant patient. Only problem is she is already on every antibiotic and anti fungal. All her blood cultures have been negative for weeks so its nothing bacterial. Throughout the night and day her breathing was fast and her fever came and went. She hasn't thrown up since yesterday but is frequently gagging on the drainage from her nose. She is so tired from not much sleep but can't really seem to get comfortable. There were nurses and docs in and out all day checking on her resporation rate. We ended up testing her blood gas. The test was to see how much carbon dioxide was in her blood. If the level is high that means her lungs aren't able to clear the carbon dioxide which is a clear sign of respitory failure. If she goes into respitory failure then she would have to go the the intesive care unit and be put on a ventilator. If that happens chances are she would never come off. To keep her on the ventilator would require steriods and that is what we are trying to get out of her system so she can fight the lymphoma. It is a thin line we are walking. Thankfully the test came back showing it wasn't carbon dioxide but instead she was acidodic (don't know how to spell it) meaning her PH is compensating for a part of her body that is making too much acid (or something). Too much for me to understand. In the time we were waiting for the results to come back we had a very serious talk with one of the doc's (one of the one's we really like) about what to do if she stops breathing, whether or not we would resusitate, when is enough enough and so on. I could hardly breath throughout the talk. James and I have some serious things to discuss. She is still holding her own but as the docs have said we are on the tip of a two edged sword. Tomorrow we will get the results back from Mondays EBV test. If the EBV level is up from last week then that means they will have to figure out something new to do because the chemo must not be working.

We need prayer...we need a miracle...we are desperate.

92 Comments:

Anonymous grande aunt lisa said...

Oh Emily, James & Livi...

I lift my desperate pleas with yours for the miracle that is so needed right now. Heal Livi, Lord! My love and hugs are extended from Pgh. My heart cries out.

Infinte XOXO,

GAL

11:07 PM  
Anonymous Anonymous said...

I am continuing to pray for a miracle. Please tell Gigi to call me anytime, day or night if she wants to talk. I am here and praying as hard as I can. Betsie

11:08 PM  
Anonymous Anonymous said...

Oh Emily...I can only promise to pray more fervently. My heart breaks for you.

~krissy evans

11:23 PM  
Anonymous Anonymous said...

For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.--2 Cor 1:8-11

Praying,
Kathy S.

11:37 PM  
Anonymous Anonymous said...

No words can help, only prayers for God's merciful healing for precious little Livi. Oh, my dears, what more can we do? We feel so inadequate. Yours, Marmie

11:40 PM  
Anonymous Anonymous said...

Sending my love and prayers. I am so glad the doctor you like is the one you are dealing with right now. Thank you Lord.

Praying hard. Please Lord, heal Livi.

Vicki G.

12:19 AM  
Anonymous Anonymous said...

My desperate prayers go out to the Lord!
Kristen E.

12:28 AM  
Anonymous Anonymous said...

We are crying out for you-
kim's

12:41 AM  
Anonymous Anonymous said...

Along with everyone else, I am praying for a miracle for little Livi. Praying for much needed rest for you all and clear thinking. My heart aches for you.
Praying that God heals her. Beth Fulmer

12:46 AM  
Blogger Carol said...

Praying too.

Carol M.

12:51 AM  
Blogger Steph B. said...

My heart is aching for you!!! We are praying!!!!

1:13 AM  
Anonymous Anonymous said...

oh emily
i am praying to God who can do miracles. i will be praying harder then ever...

bekah walker

1:40 AM  
Anonymous Anonymous said...

We are desperately praying for that miracle. Our hearts are so heavy for you. We are praying for God's peace and wisdom for you. We love you.

Yoders

1:45 AM  
Anonymous Anonymous said...

I sit here with tears in my eyes.....you are constantly in my thoughts and prayers......BE STRONG.....praying harder for your Livi, you and your family.

1:51 AM  
Blogger momofcolin_chloe said...

Praying!

5:24 AM  
Anonymous Anonymous said...

Praying here this morning
Lotinskys

7:26 AM  
Blogger All 8 of Us said...

Continuing to lift you all up...my heart is breaking for you! Praying for that miracle.
Blessings,kathi

7:55 AM  
Anonymous Anonymous said...

Just want you to know that, along with so many others, I am praying for you.
Cathy S.

8:00 AM  
Blogger Bueche said...

God is with you with all of His compassion, love and power. Truly His ways are not our ways, and His thoughts are not our thoughts...they are higher. He invites us to present Him with our requests though, and we do it with all desperation.

Loving you all like always. I plan to call James tomorrow (the 5th).

8:22 AM  
Anonymous Anonymous said...

I think about Paul and his trials as I pray for you and Livi, 2 Cor. 12:9-10...you are serving the same Lord as you walk through these days and the same promise is for you...when you are weak, He is strong. Turning up the prayer support for your special family.

Frank-Sov. Grace, Indiana, Pa.

8:26 AM  
Anonymous Anonymous said...

Emily and James,
Praying for you constantly. Praying for a miracle for Little Livi and strength and peace for you, James and your families. I wish there was more we could do.
Jessica

8:29 AM  
Blogger Damien Drago said...

Lifting little Livi up in prayer before the throne of grace~
The Drago's

8:40 AM  
Anonymous Anonymous said...

Praying in Pittsburgh

Marie and Tim Watters

8:56 AM  
Anonymous Anonymous said...

Praying for a miracle. My heart aches for all of you!

Natalie M

9:04 AM  
Anonymous Anonymous said...

oh emily,james,livi, and all.....
praying...praying...praying!
laura m.

9:06 AM  
Anonymous Anonymous said...

Praying, praying, praying. -Sue F.

9:32 AM  
Anonymous Anonymous said...

Praying often for you.

Karla Sensenig

9:38 AM  
Anonymous Anonymous said...

Soooo sorry to hear about your hard hard day....We love all 3 of you so much & wish there was more that we could do--thinking & praying tons for you guys in these hard days.
Scott & Ang

9:42 AM  
Anonymous Anonymous said...

Praying from Colorado

9:57 AM  
Anonymous Anonymous said...

Crying with you and praying, praying, praying!!! I have no words - my heart is breaking!!!
You are all in my thoughts!!!!
Vicki Moore

10:00 AM  
Blogger Brandon, Amy & Gary Wilhoite said...

My heart breaks for all of you, and all that you have been through. Please know that we love you and we're praying for a miracle.

Always in Christ,
Amy

10:07 AM  
Anonymous Anonymous said...

praying, praying, praying for you!
Calvettis

10:31 AM  
Blogger Teresa said...

Continuing to pray and crying out with you (and many others) to the Lord for a miracle.

Buddy, Teresa & Nicole Baker

10:40 AM  
Anonymous Anonymous said...

praying with you much today,
L&K McKelvy

10:48 AM  
Anonymous Anonymous said...

Standing with you in Pittsburgh.

10:56 AM  
Blogger pashoff said...

Continuing to pray to our faithful God.

Pat

10:58 AM  
Anonymous Anonymous said...

praying hard. praying desperate prayers. He hears. He knows. He loves.

Kristi

11:17 AM  
Anonymous Anonymous said...

Praying for a miracle.

With love,
the Fedelis

11:18 AM  
Blogger beth said...

desperately praying.

love, beth

11:20 AM  
Anonymous Anonymous said...

Throughout today...I want you to know Alivia will be on my mind in my heart and in my prayers ..
God give you comfort

Phyllis

11:21 AM  
Blogger Seth and Janet said...

we are praying and will be praying for you all.

11:41 AM  
Anonymous Anonymous said...

Hey Emily:

I am praying hard for Alivia and for all of you. I have sent you a couple of e-mails to your personal e-mail address in the last couple of weeks, but I am not sure if you are even able to check your own e-mail from the hospital. I will send you one more and if I don't hear back, I will stop because you may not have e-mail access there in the hospital. Take care. This seems to be like riding a roller coaster. One day things seem so dark and the next day they lighten up. I don't know if the back and forth makes it all any easier, but you all are doing a wonderful job handling all of this. God love all of you.

Caroline

11:44 AM  
Anonymous Anonymous said...

Continue to pray for God's peace, and wisdom for the decisions that have to be made. I'm so sorry for what you are going through...

11:57 AM  
Anonymous Anonymous said...

Praying for you frequently.
-Jenn Grover

12:24 PM  
Blogger Becca said...

praying, praying, praying hard for a miracle my hear is breaking for you all! I wish there was more that I could....

12:47 PM  
Anonymous Anonymous said...

Crying out to God for a miracle.
~Sarah Kearney

1:10 PM  
Anonymous Anonymous said...

you all are heavy on our hearts today... lifting desperate prayers to our great God...
the kings - sgcindiana

1:20 PM  
Anonymous Byers Family said...

Dear James & Emily & Livi,
We are really praying hard for a miracle to happen today!! My heart is so heavy & my tears are rolling down my face as Scott & I read your blog. I know God will give you wisdom to make the decisions you need to make! Emily & James ONLY you two know what is BEST for your BABY LIVI than anyone else besides our precious Savior!! YOu will make the RIGHT choice! Livi knows just how much you LOVE her daily, hourly & every second you watch over her & care for her so patiently & with so much faith! You are such a great example of Christ to Livi & to every single person who walks in your room & all those who read your blogs of the words that pour out from your heart all over the country! The Lord is right there holding your hands yesterday, today & tomorrow as you walk thru this trial! God is giving you enough grace to get thru it all! Take every moment you have with your precious baby & make each second that goes by very special!! We all don't know if this could be our last day before we meet face to face with Jesus so live today as if it were last! Give your girl a big smile, a kiss & hug, a tickle, something to laugh at, a story to listen to & a llulaby you can sing to her! She is so blessed to have you both as her mommy & daddy! Keep trusting & keep holding on to Jesus's hands as you pray with out ceasing!!

We are thinking of you three all day & we are PRAYING for you!

Love in Christ,
Hannah, Scott, Tirzah & Naomi Byers

1:25 PM  
Anonymous Anonymous said...

God still heals today. And we are all praying because we know He still heals. Jesus Christ is the same Yesterday, Today and Tomorrow. Lord Jesus, we are asking You to heal Livi today. That you would rend the heavens and come down to Your little one's aid. She needs a miraculous touch from Your hand. One touch of Your Hand, Lord. Heal this little one, Father. Amen. janet s.

1:33 PM  
Anonymous Anonymous said...

We're praying for you Livi!

The Ryers

2:02 PM  
Anonymous Anonymous said...

Praying for a miracle. As I was reading the blog this afternoon I was thinking of the song "Jesus Loves the Little Children" and how very much He loves Livi and how precious she is to Him. Praying for all of you.
C.J. Frederick

2:56 PM  
Anonymous Anonymous said...

We are praying for healing for Livi and strength for Emily,James and the family.
Mike, Joanne and Jeffrey

3:32 PM  
Anonymous Anonymous said...

Jesus, we need you so desperately. God please move on this family's behalf. Oh God, please touch this precious child.

Thank you God that you still do miracles today. God we cry out for a miracle for Livi.

Thank you God for loving us. That you for your sacrifice.

I will continue to pray and cry out for your miracle. My God be your comfort and strength.

Holly W

3:37 PM  
Anonymous Anonymous said...

Oh Emily and James,
Words can't express how sad we are that you both have to make such hard decissions. I thought about last year when the doctors said Ian wouldn't make. John and I prayed harder than we ever have in our life. When we got the news Ian was getting better not worse, what a testinony that was to share with everyone I could.
John and I promise to pray just as hard for Alivia. God hears all prayers and loves Alivia more than anyone. He is in control even if you feel out of control!
Kristy and John Scherf

3:58 PM  
Anonymous Anonymous said...

Our hearts are heavy as we read about Livi. We will continue praying for Grace for all of you!
God is Good and Miracles do happen!
love,
Beth & Vince Palilla

4:35 PM  
Blogger ~Danielle~ said...

I'm praying for you.

6:04 PM  
Anonymous A Canadian friend said...

Dear Lord, I pray that your arms are holding these people so tight to your chest Lord. I pray that all of our prayers and thoughts will comfort this family as they ache. Please provide them with wisdom and comfort as they face yet another hurdle. Please hold little Livi snuggled in your arms and Lord, never let go! My heart aches God....why? why does this gift from God need to suffer and feel the pain of the world? Please do not let her suffer anymore. Heal her body Lord, let her parents have the joy of a miracle and feel the love of their father. Lord I am weak with compassion and worry. Please be with this family right now. Let them feel the love from all over the world Lord.

7:53 PM  
Blogger vandernecks said...

We are praying for Livi's healing and for strength and faith and grace for all of you. You are in our hearts and prayers, and Emily, you and James make your decisions guided by the Lord, as you always do.He will not forsake you. God bless you all, and heal beautiful little Alivia. We are all praying. Love, the Vandernecks and extended family

7:55 PM  
Blogger Adalie Plain said...

Oh Emily. I will be praying.

8:25 PM  
Blogger Joe.Karen said...

your family is in our prayers every day. a million hugs for you.

love,
karen & joe

8:43 PM  
Anonymous Anonymous said...

crying out to God most high for a miracle right now.

Jan

8:49 PM  
Anonymous Anonymous said...

still praying, blessings to you.

9:27 PM  
Anonymous tina said...

praying for beautiful livi...for you all...for the miracle we all desire. much love to all of you. xoxo

9:38 PM  
Blogger Briana Almengor said...

Oh my dear friend. Along with so many others, my heart is aching for you. My thoughts turn to you most of the day no matter what I'm doing. we are praying all the time, asking God to move in power and to move quickly. Hasten that healing, Lord! Praying you are experiencing His nearness, knowing He is close to the broken hearted.

Love you much, friend and Praying always.

10:35 PM  
Anonymous Anonymous said...

As I drove past your house in Neffsville today I prayed for you guys. And I am praying now. Lord please heal Livi and show your amazing grace to James and Emily.

Geoff Sensenig

11:01 PM  
Anonymous erin w said...

I am clinging to hope and praying more than ever. Miss you all a lot.
Erin

11:16 PM  
Anonymous Anonymous said...

i am continuing .... there is such a burden on my heart for you emily. and james and all of the family... and livi. you will never hear me say "i understand what youre going through... " because i dont. maybe i never will. but i know that God has suffered and i know that the bible says he can identify with your suffering...

i am praying that he sustains your bodies, minds and emotions...

god please heal livi's body,for your glory. thy will be done.

linda

12:25 AM  
Anonymous Anonymous said...

praying in pittsburgh

rachael s.

12:26 AM  
Anonymous Anonymous said...

Oh Em and James!

I'm praying so hard. While I'm reading this and it's blurred thru tears, I keep thinking the night is darkest before the dawn. I'm praying so hard for you guys. All our love from Alexandria....
Love,
Steph C.

6:36 AM  
Anonymous Anonymous said...

Praying.
Maryann Plesnicher

8:56 AM  
Blogger Heidi said...

Praying for you and your family!

9:46 AM  
Blogger sarah said...

Praying for you ...
Love,
The Herr's

9:59 AM  
Anonymous Anonymous said...

Dear Lord,
Please heal Alivia Rachael Haughery. Please be with James and Emily through this difficult time. Give them strength to keep going, and livi strength to keep fighting.

Amen

I am praying for you guys.

love ya,
moriah

10:23 AM  
Blogger Sara said...

praying...

10:35 AM  
Anonymous Anonymous said...

Dear Emily, James and Livi, God reminded me to pray for you this morning even before I read the email of the 3rd.
He cares, He loves you and He hears our cries for Livi. Much love, Bonnie O. Sov. Grace, In, PA

11:01 AM  
Anonymous Monica C. said...

Shutting the door to my office, on my knees, and praying. God bless you guys,

11:21 AM  
Anonymous Anonymous said...

We're all praying for God's mercy and healing...finding comfort in knowing that He is Sovereign and good!
with love,
Matt & Viv

11:33 AM  
Anonymous Anonymous said...

Praying for strength

11:46 AM  
Anonymous Anonymous said...

I'm praying for each of you, I'm so sorry that you have to go through such difficult trials. Love you, Maureen

12:36 PM  
Anonymous Anonymous said...

youre in my thoughts today

linda

3:17 PM  
Anonymous Anonymous said...

Thinking of you...and praying

4:31 PM  
Anonymous Anonymous said...

Praying for that miracle ... Love, Janet S.

4:35 PM  
Anonymous Anonymous said...

Praying hard for God to send your miracle for that beautiful little Livi! Thanks be to God that he hears our pleas and is delighted to know we trust him in times like these.
Lori Freeman

4:59 PM  
Anonymous Anonymous said...

Continued prayers for all who love Livi and most of all my never ending prayer for Livi's health and happiness.

M.H.

6:15 PM  
Anonymous Anonymous said...

I'm praying...I'm really,really praying.
Rebecca Parry
(Randy O'Neal's Aunt)

8:36 PM  
Anonymous kb said...

we are praying for you now.
kathy

8:39 PM  
Anonymous Anonymous said...

Dear Emily and James,
I am praying...
God be with them right now... please let them feel your presence... be near them.

Vicki G.

8:53 PM  
Blogger Jude's Mom said...

Just returned and got caught up on Alivia! Oh, Emily...we keep praying and holding on to faith and hope for your sweet girl. We love you guys.

Julie

9:22 PM  
Anonymous Anonymous said...

Emily,
We are all praying waiting to see a miracle of God in your little one's live. We continue to cry out for total healing.
Love,
The Burns

9:26 PM  
Anonymous Mona said...

Praying fervently for Livi!

9:45 PM  
Anonymous GAL said...

Emily,

Got your msg. Pete, Marmie and I are together. As always, our hearts are with yours. Praying for Livi, for you all. We love you guys so much. Wish we could be there with you.

Be strong,
your aunt Lisa

9:56 PM  
Blogger Dani said...

We are praying and praying for you here little Alivia-praying for your miracle. And for you Emily and James-that you would feel the peace that surpasses all understanding regarding your precious baby.

~The Madison Family

10:04 PM  

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