Titus Update: The Break


Tonight will be our 6th night to sleep in chairs here at Children’s Hospital. Same as at home, when the little eyes finally close, Seth and I crash and process what we can.

I keep thinking about last Sunday at church, how all I could repeat in prayer was, “I don’t want to break.” After telling a friend about my weariness, she said that maybe that’s exactly what I’m supposed to do – let myself break. I’ve realized that one of my greatest fears is losing my mind, my understanding, and my faith – that I would ever reorient so much that I question God’s goodness. I tell myself that if I break, I might lose all three. Oh but I know I am not the one in whom all things hold together. I am free to shake until I burst open.

The day before yesterday, Titus had thrown up all his meals from afternoon through the night, and his glucose plummeted. The room settled after we thought surely he wouldn’t keep getting sicker. It was 4:45 AM. Seth encouraged me to sleep, so we can stay well, but I finally held his worn-out body and wept. I talked to God. I said words like “Glory.” I said words like “trust.” I said, “no matter what.” What made me break was God here like a roar, how the weak place is the syphon for glory. I sat in a place I could hardly bear. Then I closed my eyes and took a morning nap with Titus stretched out on my chest.

The next morning, all the doctors looked confused and called him a mystery, a puzzle – after this many days. His genius, loving, and highly qualified team had several meetings to discuss a new course.

They changed his feedings to drop by drop through his feeding tube – continuous feeding. He was to receive 40 mls of elemental formula an hour for 4 hours. At the end of that period they were to remove residual fluids from his tummy. We found out that his feeding did not get distributed through his body. Much of the milk was pooling up in his tummy, so that’s why he continued to reject feedings. They removed what was pooling up and continued to feed him, so by this morning, he had gained weight!

Today they lowered his feeding to 30 mls an hour, and the last feedings have shown no residual fluid in his tummy, so I think that means he can only digest about an ounce of food an hour. Now we’re in a position to move forward because we know what he can tolerate. THIS IS HUGE.

In the meantime, Titus has proved what a bruiser he is. He ripped out his 2nd IV, which isn’t cool because often it take 3 and 4 tries to get one in him. Then at one point today he lunged toward me inside his crib and busted his eye wide open. He bled everywhere and wore about 4 nurses out while they tried to clean out and put butterfly bandaids on his eye. They totally gave up on replacing the IV. Titus is his perfect name. When he’s not kicking and screaming, he’s smiling and blowing kisses.

Now we pray for the doctors to find out why his body is not distributing food appropriately so they can treat it. We’re waiting for more test results to come in, and on Monday we’ll do an MRI to make sure it’s not his noggin telling his tummy to act that way.

I cannot express how grateful I am for the messages and cards and food and visits and calls. This room is a circus, and I just wish I could show you my heart, how loved we feel and grateful we are that you’re carrying us how you are. Seth and I love you so. Thank you for praying.

amberhaines
About me

70 Comments

Connie @raise your eyes
Reply July 28, 2012

Poor sweet babe...prayers ascending...

LoveFeast
Reply July 28, 2012

Loving you all from afar but keeping you close in our hearts and daily in prayer. So glad there is forward movement! Praying for more answers!

deb
Reply July 28, 2012

Amber? No words.
xoxoox

Rachel - A Southern Fairytale
Reply July 28, 2012

My prayers have been with y'all, and remain with y'all.

Love to y'all

Courtney Nelson
Reply July 28, 2012

still on our faces before the Lord and blessing Titus with complete healing.

Airs
Reply July 28, 2012

in that gap still. <3

Jennifer@GDWJ
Reply July 28, 2012

Tears here. All kinds of love in every little drop. We are praying here in Iowa.

linda
Reply July 28, 2012

Prayers and love to you all.

Allie
Reply July 28, 2012

Bunches of prayers for your little bruiser and family.

Sarah Bessey
Reply July 28, 2012

Love love love

Melissa
Reply July 28, 2012

OH AMBER! That was exactly what they had to do to our boy! On his birthday....they removed all input until the inflammation settled. He was literally starving....15 lbs off his 40 lb start...he was chewing off pieces of his chapstick. BUT once his tummy got the rest he started to absorb again and there was no looking back! They also never had an answer for us...maybe a virus caused inflammation so bad it stopped absorbing but none of the specialists ever really knew
OH YAY! So happy for this turning...Praying with you...

Lori Harris
Reply July 28, 2012

No words, only groaning with you. My heart breaks and bears this burden with you.

Mae Mouk
Reply July 28, 2012

Sending our love and prayers to y'all. Miss you bunches and am holding you near, while far away.

Lora Lynn
Reply July 28, 2012

Holding you from afar. Praying peace and wisdom. Love to you all.

Carrie&Troy
Reply July 28, 2012

Oh, my friend. An ounce is such a tiny little bit, but so glad for the progress. We will pray more! "How the weak place is the syphon for glory." That is so true! We love you guys.
Peace, Friend!

anna {girlwithblog}
Reply July 28, 2012

Oh, how I am lifting up your sweet boy. And you, mama. You too.

You are being thought of by the One who never forgets.
psalm 139:17-18

imperfect prose
Reply July 28, 2012

sarah and i are sitting here, tears in our eyes, reading your words, amazed at how beautifully you love, dear amber (and seth). saying words like glory, and trust, and how we cried out to God on your behalf last night on the porch of our cabin, looking out onto mountains touching heaven, and all i can think is, God heard. he is hearing. titus is a fighter. i see this in how he pulled out his IV. don't give up friend. and i'm going to pray tonight that they put a cot in your room, for pete's sakes. (who do we need to write a letter to? ps. sarah wants to know where to go for the petition.)

Jennifer Kennamer
Reply July 28, 2012

Thinking about you and your beautiful family. If there is anything we can do, please let us know! Love Jen & Chris

Lisa @ Crazy Adventures in Parenting
Reply July 28, 2012

Who knew the weight of one ounce could be THAT magnificent? Continued prayers for your sweet, sweet boy. xo

Lindsey Nobles
Reply July 28, 2012

Love you guys! Praying for answers, for strength, and for rest. Wish I could bring you a coffee and a chicken biscuit.

Jennifer_StudioJRU
Reply July 28, 2012

Love and prayers, Amber. Love and prayers.

Shelly R
Reply July 28, 2012

Amber, I have been following along Titus' story. I just wanted to say I am praying for your family, for Titus. Always, praying.

Kelly @ Love Well
Reply July 28, 2012

Our hearts are with you, Amber and Seth. I don't understand it, but maybe we are bearing some of your burden? Maybe we are sitting next to you in those chair at night, whispering hope and faith and peace? Maybe we are Aaron and Hur to your Moses, lifting your arms because we know that is how the battle is won?

I'm reading in 2 Chronicles right now, and I keep thinking about this verse: "You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the Lord will be with you." A good word.

    Amber@mercyrising
    Reply July 29, 2012

    @Kelly,

    This is the exact thing that I am praying for @amber, that we would hold them up like Aaron and Moses.

Kari
Reply July 28, 2012

Just recently came across your blog....praying for Titus and your family. I can't shake the idea that I need to ask you if they've tested for indicators of mitochondrial disorder. My girls have it, you story just sounds very familiar.....asking God for healing and answers soon for you.

jOHN SCHULENBURG
Reply July 28, 2012

praying for God's healing, strength, trust, faith and Perfect Will for you guys

Genevieve
Reply July 29, 2012

Oh, these feelings - I know them like I know my own two hands. I think of it like Abraham walking up the mountain with Isaac, knowing there is no other lamb. Wondering, wondering, wondering - as you break open like a ripe melon under an axe - why it is the child innocent that has to suffer to break the hard parent wide open for Grace?

Praising God for the little rescues of the last day - the continuous feeds, the weight gain, that Titus still has enough kick in him to rip out IVs and bust his eye open lunging around.

Two things that buoyed me - this verse: "What time I am afraid, I will trust in Thee." muttered constantly like "ora et labora" the prayer that we breathe never ceasing while we work each day. And the refrain to this hymn:
There'll be no dark valley when Jesus comes (repeat x2)
To gather His children home!

    Nacole Simmons
    Reply July 29, 2012

    Gen,
    your words and verse, hymn made me cry. you are a dear, dear woman.

Cheryl
Reply July 29, 2012

Ah dear sister, I am lift you, Seth, Titus and your entire family up to the Throne of Grace. May God sustain you minute by minute until you reach the place of Titus's healing. And that He would comfort the other children while you & Seth are away.
Grace and peace to you in the Name of our Saviour.

erika @ the life artist
Reply July 29, 2012

Here.

Jo Gower
Reply July 29, 2012

Dear Amber and family,you are all in my prayers and the prayers of all the prayer warriors I know. We love you and are holding you all at the feet of Jesus and at the throne of God. In my mind and heart I carry Titus in my arms as I walk through the gates of heaven and give him into the arms of our Lord Jesus Christ for complete healing then I bow before our Father God and say Holy Father by Christ stripes little Titus is healed because Jesus paid the price we couldn't pay Holy Father we pray this healing you've done for baby Titus brings all glory to You oh God. We know Holy Father that the very Spirit that raised Jesus from the dead lives in Titus and I pray that He will supply all of this child's needs and raise Titus to live a strong, healthy life in and for You oh Lord God Almighty. All praise and glory to you Holy God by the authority of Jesus Christ I pray, Amen

L. Ann Guzman
Reply July 29, 2012

Praying for Titus, and praying that as you face your greatest fears, you will continue to see that God is greater still. In doing so, and writing it here, you are bolstering the faith of many, even if your own faith feels battered and bruised at times. It feels almost hypocritical, as someone who has never ben in your situation, to remind you God is more than enough... but He is. He loves Titus even more than you do, and He will never leave or forsake you, or Titus, or your husband, or your other three boys. He will always be right there. Praying you will feel His presence, and see His hands in tangible ways.

HopefulLeigh
Reply July 29, 2012

Grateful for this answer and praying the tests will provide more answers still. Praying peace and mercy over you guys.

Ang
Reply July 29, 2012

prayers and hugs

Danelle
Reply July 29, 2012

Praying for you Amber. Praying you feel all the love I am sending your family.

Nacole Simmons
Reply July 29, 2012

Amber, just speaking the name of Jesus over you and your family as i read. pleading His blood, the power of His sacrifice. your words-- glory, trust, no matter what--they move me. they have me in awe. that sweet baby's face--my heart breaks right open--continuing to pray...

Caroline
Reply July 29, 2012

Praying for you and yours.

René
Reply July 29, 2012

Gage will be in LR tomorrow--need him to deliver anything from here? He leaves tonight--

Michael Ann Ramer
Reply July 29, 2012

Amber,
Praying for you and Seth, Titus, and your boys. If there is anything we can do....keep your boys, check on your place, help in anyway - please call on us. God bless you all! love, Wade and Michael Ann

leslie
Reply July 29, 2012

I don't even know you but i have been praying for your precious boy and will continue to do so!

Bethany
Reply July 30, 2012

Praying praying praying, heavy-hearted and hopeful.

Janel
Reply July 30, 2012

Amber,Seth and your dear family...I am so thankful to be able to read about your continued journey with little Titus. Thank you for sharing your heart with us in the midst of such a mentally and emotionally exhausting journey. I praise God that your dear family is close and can take your other dear little men and love on them and support you. I also praise God for the comnunity that not only lifts you high into His presence but also strives to provide for your other needs as well. I continue to pray for wisdom and insight for the doctors tgat tgwy will be given insight into how to best care for little Titus. May the Lord hold you two so near to Him and may you feel.His sustaining. And may the Lord give little Titus the continued spirited response that he has been showing. May the Lord fill your room with his peace and grace and I pray that you will all be part of s miracle that shows His powrr,might and love.

Ashley
Reply July 30, 2012

Continuing to pray for Jesus' upholding - His strength in your weakness. For moments of glory and healing and knowing His love.

Shaun Groves
Reply July 30, 2012

Praying here in Nashville.

Jess
Reply July 30, 2012

this brought tears to my eyes. Lifting you up to Christ right now and will continue.

Lee Morton
Reply July 30, 2012

Seth and Amber,
We are praying for healing for Titus! We ran into your boys on a hike at Devil's Den. What a fun surprise. They were so sweet talking about the weight he had gained. We pray that God will strengthen you in your inner being by the power of his Holy Spirit. Eph. 3:16 Love, Clay and Lee Morton

Kimberlee Conway Ireton
Reply July 30, 2012

Amber, just wanted you to know I hear your heart's fear: of course you don't want to break, to lose your mind or your faith. To doubt God's goodness, to doubt God. After my twins were born, I broke. I lived in that deep pit of fear and doubt, clinging to God and faith by my fingernails, and my community held onto me, held on to faith for me, just held me. And your community will do the same for you. That's why it's the body of Christ, so when one of us is scared or broken, the rest can hold us in place, even as God holds all of us together.

Please know that I am praying for strength and peace for you and Seth and a speedy diagnosis and healing for Titus, whose name is written on my prayer window.

Grace and peace (and sleep!) be with you.

Kari Clark
Reply July 30, 2012

Amber and Seth... there are no words I can say that will convey what I am feeling for you tonight. A hug would say it best, but it couldn't be done without tears. When I heard, I cried. When I following the FB link to this page, I could barely open my eyes to read it. No. Not you. Not your boy. You, your family, Titus... shouldn't have to hurt like this! But then thankfulness enters and I realize you share that place of blessing we have treasured so many days... that place that only comes through feeling as if you are truly in the presence of God working, no matter the chaos that surrounds! Our God overwhelms me with JOY even now, to think of Him walking the night hours with you, when little ones don't recognize common hours to sleep or the mind of a parent wanders when the quiet finally enters. I am here, we are here if we can help in any way, and our hearts will be connected to yours, caring deeply about your family, praying prayers that God will strengthen your hearts for His will and for the best possible outcome for all. My heart breaks for you dear friends...

Annie
Reply July 30, 2012

You guys are heavy on my heart. Praying for Titus and for all of you.

Malia
Reply July 30, 2012

Adding my prayers to the many.

Robin ~ Pensieve
Reply July 31, 2012

Taking the shift in the middle of the night; labored prayer, the way a mama gives birth. Expectant, eager, full of hope and grace.

xo

Shanna
Reply July 31, 2012

Praying for your little guy right now - for healing. And for you & Seth for strength and stamina and clarity despite the lack of sleep. For your doctors - for discernment and knowledge and compassion.

Lisa-Jo@thegypsymama
Reply July 31, 2012

We love you seem like very small words. But we do. And we're holding you in our hearts and our prayers and cheering for break throughs and doctors and one small boy with that fighter's heart.

Amy Hunt
Reply July 31, 2012

I am overwhelmed at how difficult it is to trust in His goodness, though delighted that we can. There's purpose in all of this. Praying you peace, friend.

r.elliott
Reply July 31, 2012

Oh nothing tests a parents heart like watching helplessly as our children suffer...in these moments we are driven hard on our knees...our faith is stretched further than we thought possible...and yes...to hold on tight to the truth of God’s goodness...His perfect love...no matter what our natural eyes see. prayers for your sweet family...blessings and grace~

Amanda
Reply July 31, 2012

Oh, sister... I somehow found you through instagram, and finally found your blog to learn your story. My heart aches for you and for Titus. I can barely manage the everyday stress right now, and can't imagine what you're going through. I am amazed at how God shows His glory, goodness, faithfulness, provision through such pain and suffering. Yes, it's okay to break wide open and let Him put the pieces together... He is the best at putting these puzzles back together. Praying for you guys, for answers and healing and glory revealed.

Janelle
Reply July 31, 2012

Have followed your words with pleasure in the past. Prayerfully and painfully following now. God bless you and your family. God bless Titus.

elizabeth
Reply July 31, 2012

Oh dear, my husband only had to sleep one night on those chairs in Children's waiting room. If we still lived in Little Rock, I would beg you to come sleep on a real bed at our house. :(

Hold on through the breaking. There are no words, no easy answers. {{{hugs}}}

Sarah Markley
Reply July 31, 2012

we love you so. praying for little titus and you all.

Jennifer Dougan
Reply July 31, 2012

Amber,

My family, and now my blog friends, join you in praying for little Titus. http://www.jenniferdougan.com/2012/07/neighbors-and-breaking-7-year-record.html

My daughter had a cancer scare when she was four or five years old, and I still remember those feelings, those prayers, those tight-chested moments, and calls out God...

Thinking of you and Seth and Titus tonight,
Jennifer Dougan
www.jenniferdougan.com

Gretchen Louise
Reply July 31, 2012

Praying for you...with tears because I have my own little boy who had his own eating issues last year...and the pain and the fear is oh-so-close to the surface...

Kara @ The Chuppies
Reply July 31, 2012

Praying tonight...
Praying Psalm 62 for you...that you can pour out your heart to Him.

ann myers
Reply July 31, 2012

praying for all of you dear amber..i am so sorry to hear titus is struggling so much. we've been keeping up thru susan.. we send our love and prayers.

Annie@Hotels Near Disney
Reply August 1, 2012

hoping for the best.... love for you amber

Jane Anne
Reply August 1, 2012

I am praying for Titus, you, Seth, the doctors and the whole family.

erin a.
Reply August 1, 2012

Right now I am crying for you & crying out to God for you! Sweet little man, Jesus heal him!

Carol Scott
Reply August 3, 2012

I hope Titus will be fine soon. I will just send prayers for Titus. You are strong woman Amber. For sure God will hear all your prayers. We are always here.

Emily
Reply August 7, 2012

Amber, I know you don't know me, by any stretch of the imagination...but it hit me, as I was reading this, that you were going through this day...the28th...on my birthday. You are in my heart and I'm praying...I completely understand how it feels to love little sweet sons.

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