The Feeding Tube


I could tell Titus wasn’t gaining weight, so I called my girlfriend who is also his pediatrician, and she told us to come in the back door of the office. We got to see leftover birthday cake on a side table and peek into the real-life world of doctors with cubicles full of photographs of their own children. The medical world mostly freaks me out, and I’d just as soon see a medicine man in the bush than go back to the hospital, but she’s such a friend, and I trust her.

Titus laid naked, all grins, on the scales, and I knew he hadn’t grown, but it showed he had lost a pound. As if we had never visited the hospital, he was back down to 15.4 pounds. I had all the boys with me and called Seth to meet us in a procedure room so we could learn together how to insert a feeding tube for home.

If you’ve never seen one, it’s a tube that goes down the nose and into the tummy. I basically stick a turkey baster to the end of it and pump in the needed formula. Without the tube, things could be bad super quickly, but we have peace along side frustration. I finally cried with my community group last night. Brothers hugged me good and sisters wrapped their arms around my legs and sat with me. One sobbed into my ear. The tears were good.

Other than that, I cried this morning about Tom Cruise, which has to be a red flag for misplaced emotions, if I have my guess.  My head is throbbing, and I’ve eaten so much chocolate cake for breakfast.

Right now a guy from our community has the oldest boys down at the creek, and it’s nap time for Titus. The air conditioner is working hard. I feel outside of  my body. Seth is at work having to be a person. Titus is not okay, and we have very few answers.

Right now I know for certain that God loves me as much now as He loves me when we are all well. I can’t do extra begging or jumping jacks to get him to pour it on thicker. It’s already thick. I know that Titus is not mine. I know that you don’t earn your giftings. You don’t earn God.

He just is.

You don’t know how brave you really are until you quieten down at the burning bush.

amberhaines
About me

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54 Comments

deb
Reply July 19, 2012

Sending so much love . and prayers piled on prayers of course.
Kisses for Titus. And hugs for mama.

Carissa
Reply July 19, 2012

I am glad you cried... I hope you keep giving yourself that permission!
So thankful for community groups...

I love these words... "I can’t do extra begging or jumping jacks to get him to pour it on thicker. It’s already thick." So much truth there.

Prayers are still coming.

Nicole Phillips (Nicci Staples)
Reply July 19, 2012

Amber,
We're praying, loving, hoping with you.

kendal
Reply July 19, 2012

quieten down at the burning bush....what? no yelling or bargaining? hmmmm. praying for you and that beautiful son.

Fiona
Reply July 19, 2012

Praising God for your girlfriend Doc. Times like this you need an advocate who can carry you and walk alongside you and beside you.
I'm sorry this has to be a part of your story, but I know know this, that God loves your boy even so much more that you do - and that's a whole heap......He's got this. He's got this.

Cathleen
Reply July 19, 2012

Praying for you and your sweet Titus.

Anna
Reply July 19, 2012

Amber,
I hurt for you and with you. I love y'all so so much. Wish I could give you a real live hug, but sending you all a long distance one instead!
Anna C

Hannah
Reply July 19, 2012

Oh Amber, it has taken me so long to even try to understand that His love is already thick, but I'm still doing extra jumping jacks for you and Seth and Titus and the rest of your brood. Light and love...

René
Reply July 19, 2012

I am comforted when truth is told out loud for us all to hear.

Stacey
Reply July 19, 2012

Im one big goosebump....I don't know what to say. Just wanted to let you know that we are following all your posts here and on Facebook and wishing our relationship was closer than the Internet. We love y'all crazy much and are hurting for you and all the questions you have. But the faith....wow, what an inspiration the faith is!
Love you

Lore Ferguson (@loreferguson)
Reply July 19, 2012

Praying with and for you. He is faithful.

Sarah Bessey
Reply July 19, 2012

Standing beside you all, shoes off, praying and begging heaven to do something here.

Cara Sexton
Reply July 19, 2012

Praying for Titus, for your family, for your misplaced emotions and that somewhere in this all is rest and peace and even loveliness that comes with trust in Him. I can't even imagine. Love to you all.

the Blah Blah Blahger
Reply July 19, 2012

Wrapping my arms around your legs from far away...

Ann Kroeker
Reply July 19, 2012

Lord, as I ask about daily bread today, please help this sweet boy take it in, absorb it, and grow strong, nourished and flourishing.

Airs
Reply July 19, 2012

Our church family will be praying for you. I wish I could take it all away, so so much. I feel the farthest of far away and it's not fair but I am thanking Jesus you have that community. Grateful for leg-holders and sob-havers. Thank you for coming here and keeping us all in the loop so we can be in prayer. Keep resting under the shadow of His wings. Love y'all. <3

We are THAT family
Reply July 19, 2012

My girls and I are hovered around Titus' picture right now and we are lifting y'all up. We love you and Jesus is still the same. Hold onto Him. xoxo

Genevieve @ Turquoise Gates
Reply July 19, 2012

Sweet, sweet little boy. Oh, those days of not knowing, just knowing something is not right, and knowing you cannot fix it by yourself. Our Amy has been on this shadowy path with so few answers and you feel like you are just putting bandaids on brokenness and it needs surgery, not bandaids. I am so glad you were able to let tears go free and your friend is your doctor. Praying for answers for you and yours, and the "peace that passeth understanding" to undergird you and hold you through whatever lies ahead.

Cassie Boorn
Reply July 19, 2012

All my love and prayers and thoughts are with your family right now. I love you.

Joy @ Joy In This Journey
Reply July 19, 2012

those pictures sure bring back memories. I learned how to insert a tube (ours was yellow), and handled many a 30-CC syringe. We bought the fattiest yogurt we could find, poured oil and butter and cheese into everything we made for her, and I threw out my hippie "no processed foods or sugars" ways to try to fatten her up. We are praying for strength for you and Seth and that TL's little will grab those calories and grow grow grow.

Nish
Reply July 19, 2012

Hey.
I love you.
You know we've been kneeling for Titus.

Imma pray for Tom Cruise, too. Just for good measure.

xo

Sarah Markley
Reply July 19, 2012

praying for little titus, girl. i love you. i hope you feel it from california to arkansas.

Kris
Reply July 19, 2012

Praying for you, for sweet Titus, for the whole Haines family. God give peace and answers and have mercy.

Amanda [life. edited.]
Reply July 19, 2012

The way you string your words together, I could just drink it up (and I do). Thank you for inviting us in even as your heart hurts. Praying for Titus and his mama as I drift off to sleep and hoping you get sleep, too.

Annie
Reply July 19, 2012

Praying for you Titus & for you all.

AllisonO of O My Family
Reply July 19, 2012

O, Amber. I am so sorry. Praying.

LoveFeast Table
Reply July 20, 2012

Friend, you have our prayers and our hearts. Praying that you, your family and Titus continue to feel His strong hands holding you. Praying for life...and answers.
k & ca

JennieLynn
Reply July 20, 2012

I have no words, but Titus and your family are constantly on my mind, pouring out prayers to our Good Father.

Mike
Reply July 20, 2012

praying for all

Dana
Reply July 20, 2012

Praying for you, Titus, and family. Praying for growth for your little boy and peace for all of you.

I've been here. My son was born with a slew of undiagnosed health oddities, including only a shred of an appetite. At 18 months, he was still barely eating, and despite all our best efforts, losing weight. He then had a week-long hospital stay and a feeding tube for several weeks. But it worked- the feeding tube, along with an appetite stimulant medication and much of God's grace, jump-started his appetite. Within just a couple of weeks, my son became a champ of an eater. And while still pretty tiny at age three with some medical questions that linger, he's growing and doing quite well. But you have said it well and I'm learning it slowly, God's love is always thick. Thanks for the reminder.

Handsfull
Reply July 21, 2012

Amber, I've been lurking for a while now, but have to comment this time. My third-born also refused to eat or drink much, and his lines went down instead of up on all the graphs and scales... but none of the professionals would take me seriously, and insisted that he'd be fine. I knew he wasn't, and could see him becoming gaunt... and I remember the terror that I tried to cover over, the not-knowing, and thinking that I'd already mothered 2 other babies and I should know what to do by now.
But I didn't. And I was so scared.
I know how that feels.
My boy's problems started to be resolved when the reflux that he'd had since birth was finally officially diagnosed and treated. He's nearly 5 now, and is growing and healthy, but it took a long, long time before he started eating anything even close to normal.
I don't have any suggestions, but I remember that feeling... and I'm praying for you and Titus

Mandy
Reply July 22, 2012

love to you. <3

erika @ the life artist
Reply July 22, 2012

You make me want to be better then I am. And my phone alarm just went off, heralding the "Wisdom Hour" and beckoning me to pause for a moment to pray for steadfastness, surrender, impermanence, maturing and wisdom. I pray them for y'all too.

Love,
Erika

Nacole
Reply July 22, 2012

Amber,

my heart aches for you with a knowing--i *know* just a little of this pain--although, not quite to this extent. my baby was mal-nutritioned and she was breast-fed. she was allergic to cow's milk, so she could only take my milk. it took several months to figure out what the problem was and to have her gaining weight. she is still not talking at 2 1/2, but i know God will take care of her. trusting Him with you....blessings, dear Amber...

Kristen@Chasing Blue Skies
Reply July 22, 2012

Beautiful Mama, so many surround you with love and prayers. This mama in Colorado is no exception. Oh, how I love you!

May you feel Jesus closer than close. xo

Amy Hunt
Reply July 23, 2012

Oh girl, this acknowledgement of Him...even though...it's such beautiful worship. The knee bending to receive His love is remarkable. And it's the living and all the stories before now that have brought you to this place...that even when it's really hard, you still See Him. He's so amazing, isn't He?!

You honor Him in these words. Truly.

Praying you peace. And sustenance, my friend.

Sarah
Reply July 23, 2012

Amber, friend, prayers for your whole family -- for strength, for grace, for growth and peace. Keep us posted.

Eyvonne
Reply July 23, 2012

Tears at my desk at work. Praying for your sweet little one, and the rest of the family too.

r.elliott
Reply July 23, 2012

prayers being lifted right now for your sweet little one and your momma’s heart...

Judy
Reply July 23, 2012

Amber - for you:
"He tends His flock like a shepherd; He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young." Is 40:11 NIV
Yes, He cares for you and yours.

Jennifer
Reply July 23, 2012

I just stumbled on your blog and I wanted you to know that I lifted your little Titus up in prayer. Our God heals and He is moving. I pray for complete healing for Titus. I pray that he will be evidence to everyone that our God is still a God who works miracles. God bless.

Jessi
Reply July 23, 2012

I found your blog in the most round about way... just wanted you to know that there is this big ole' group of us moms with tube-fed kids (those who need a tube for a season or for longer) and please, contact me if you want any info. I know it is such a scary, depressing, hard step. Very bittersweet. Our little guy got his permanent g-tube at a year and has since been tube-weaned (have LOTS of info on that!) and only uses the tube for water now. Keep your chin up, mama, your little guy is getting that nutrition in his belly and you can take a deep breath. Lots of love.

Michelle S.
Reply July 23, 2012

Our first ng tube experience was August 2007. Since then our son has had a permanent Mickey button placed. I just wanted you to know that I don't know you or your story, this is the first post I've read, but I know what you are going through emotionally, the questions, stress, the hurt. I want you to know that God is there, right now, holding you and our husband and your little boy and all your other children. He is always there even when it feels He isn't. He will you carry you through this, even in the night when the rest of the world is sleeping, oblivious to what is keeping you awake. He will give you the strength you need, the wisdom, the answers. A song I played over and over during those long nights was By Your Side by Tenth Avenue North. I pray the words bless you. http://www.google.com/url?sa=t&rct=j&q=tenth%20avenue%20north%20by%20your%20side&source=web&cd=2&ved=0CFIQtwIwAQ&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DJ95rAr0gOFU&ei=hggOULPANqrF6gHl04HQCg&usg=AFQjCNGbDb51lJK1TLd6_fi8C_XJ_XHvwA

Amy Smith
Reply July 24, 2012

I just came to your blog for the first time and I wanted to mention that children with Celiac's disease (gluten intolerance) can have failure to thrive. I assume the doctors have tested for that but in case they haven't I wanted to mention it. If you eat wheat or gluten containing products it would be in your breast milk. My son who is adopted can't have gluten and his biological sister had failure to thrive as a baby because she had Celiacs. Once they removed gluten from her diet she did just fine. Praying you get some answers soon!

Theresa
Reply July 25, 2012

I just stumbled onto your blog. It breaks my heart to see that adorable little boy with a feeding tube. I've sent up prayers for him and the family. God is with you!

Lori
Reply July 25, 2012

Just thank-you for this. I will add my voice to those praying for your sweet boy.

kelli
Reply July 25, 2012

Two or more are certainly gathered here, but I add my prayer, as well.
Jesus, be healer and be glorified.
Amen.

tonia
Reply July 26, 2012

Just now saw this...praying with you, for you all. May that good peace of God pass all reason and understanding for you today.

Holly
Reply July 27, 2012

Celiacs was my first thought, too. My fifth child - a little boy, struggled so much with gaining weight. He was 14 pounds at 14 months. We saw doctor after doctor - he had repeat hospitalizations.

Turned out to be gluten intolerance. You know, with a baby, a colonoscopy might not show it. They are not necessarily old enough for a scope to reveal damage. But a hypoallergenic diet (specifically gluten free) and work to "heal" his digestive system worked. He is now a very healthy ten year old!!

Praying for answers for you. It is so sad to see your little one failing to thrive - but to not know why!

Willa Taley
Reply July 31, 2012

I will pray for your sweet Titus and for you. I hope Titus will get well soon. I know you are a strong woman and which is always there to support your little Titus. Just be strong always and God will always guide you and give strength to Titus.

Molly
Reply August 6, 2012

Definitely praying for you and your little boy. I will be praying for strength for you and your family. I've just come across your blog, but you have my support and prayers.
God bless<3

Ann Fantom
Reply August 9, 2012

I will definitely send prayers for Titus Amber. I hope the strength of Titus will come back soon.

Wendell
Reply September 1, 2012

I pray that God give you and the family that the strength to carry on so that little T can have the B days he deserve and many with cake and friends to enjoy with he a blessing.
love

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