Titus Update: Going Home


Yesterday Emily came to visit, and the two of us together, we’re just the right mix. Even when we’re talking about sad stuff, we can howl, laugh with tears and doubled over can’t breathiness. I’m holding off to share how our community has surrounded us, but I have to give hints here and there. Laughter is the very best medicine, and some of our online community sent her with more than knee slaps. We feel loved.

Last night, too, Seth’s amazing sister watched Titus and let us slip away. She gave us several hours, and all we knew to do was go to a restaurant and just sit there. We sipped on our drinks for over an hour and finally split fajitas. We had two tortillas leftover, people. That’s when you know something’s up. When we weren’t running our fingers through our hair and sighing into all the things we’ve learned this week, we were, again, laughing. Nobody knows how I work like he does. The waitress called us love birds, and I thought it a miraculous thing to be called.

As of now, we’re going home today, and we couldn’t be more grateful. We think Titus will do better at home. We still have more questions than we have answers, but we feel comfortable right now going home with this feeding tube that bypasses his stomach and goes straight into his intestines. This type of feeding is called TPT, and he’ll only have them continuously at night. During the day, we’ll pretend to be normal and pray he doesn’t tug on the tube. He’ll be eating until he feels full, and he’ll be happy not attached to any beeping poles. The plan is to increase his nightly tube feeds until he starts gaining weight, and otherwise we’ll be in close communication with his doctors.

New findings for Titus are an allergy to egg protein that is possibly anaphylactic and a brain malformation called Chiari Malformation, Type 1. The doctors told us this probably isn’t the cause of his failure to thrive, but we’re to watch him sleep to check for apnea. My crazy eye googled out a little bit more.

Last night we watched the Olympics on our 12th night to sleep here – the pain, dedication, and prize of it all.

Out the window across the way is a building that reflects what’s behind – the Arkansas State Capital Building – and what’s above – the helicopters on the skillet sky.

Titus is yet to gain weight. Please continue to pray. Glory.

amberhaines
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37 Comments

Tanya Marlow
Reply August 3, 2012

So glad to hear that you're home! Continuing to pray for you all. Much love x

Rebecca Mouk
Reply August 3, 2012

Great news! My nephew had a g-tube and it wasn't so bad. You'll do fine at home and we will continue to pray!! Clara-Leigh is available any time if it would help. Love to you all for a safe journey home and re-uniting with the entire family!

HopefulLeigh
Reply August 3, 2012

Glad for the answers you've received so far and for the answers that will come. Glad you get to go home today! Ever so grateful Emily could visit in our stead. Love you, friend. Looking forward to how our prayers will be answered.

Kelly @ Love Well
Reply August 3, 2012

Glory indeed. We see in the laughter, in the love birds, in our broken but beautiful lives. Even as we wait for answers, He is here.

Lora Lynn
Reply August 3, 2012

Glory be.

Melody Reid
Reply August 3, 2012

Amber, My oldest daughter had a Chiari Malformation that we didn't know about until she was 17. She had several surgeries and at 23 she is a 3rd year pharmacy student at Samford. Should you need to see anyone about it, I highly recommend Dr. William Boydston at Children's Hospital in Atlanta. He is the best! Please email me if I can help with any other information. Praying for you and your family!
Melody Reid

PS My Twitter name is @MelodyReid

ats
Reply August 3, 2012

this girl is praying.

Lore Ferguson (@loreferguson)
Reply August 3, 2012

Gosh. I'm praying for you guys. Every moment I think about it.

Prudence
Reply August 3, 2012

Best news of the day. Praying for healing in your little man and ounces gained and for those to turn into pounds. Love you Haines family.

Karen Huber
Reply August 3, 2012

Amber, I was glad for the chance to meet you, Seth, and of course, Titus on Monday at ACH! I am so glad you are going home and look forward to hearing good things about Titus... We'll keep praying!

A.K. Logan
Reply August 3, 2012

Continuing to pray for your sweet family. Cheering Titus on for weight gain! Happy you guys get to come home.

Monica
Reply August 3, 2012

So thankful that you're going home with your baby. Praying for you as you learn this new way of living and caring for him. Also, thankful for your words and the laughter that you write of even in the midst of this trial...you were surrounded and you saw that.

Airs
Reply August 3, 2012

I like smiles and margaritas and families going home. You are total lovebirds! <3

Nacole Simmons
Reply August 3, 2012

Oh goodness Amber, praying for you right now--by that I mean, pleading the name of Jesus over your entire family and especially that precious baby boy. Praying for his healing, and for doctors to figure this out, for peace and rest. So happy you are all able to have the comfort of home. Blessings and love to you.

Elizabeth
Reply August 3, 2012

When we were in LR last weekend I drove by ACH a few times and prayed for Titus each time. I then I prayed for his mama, and particularly for the exhaustion you must be feeling. Home is a good place-I'm so glad you get to be there soon.

Nacole Simmons
Reply August 3, 2012

Ahh...well, apparently there is someone else who has the same blog name as me and I put in the wrong blog address... OOPS! *This* is me....not the link above with my comment.

Carissa
Reply August 3, 2012

yes, praying... so glad you're all going home.

René
Reply August 3, 2012

You are so good at honest. I want to cry for you and Seth, but I'm also seeing your tender toward each other love and it is miraculous. Precious boy, may you be filled with the Spirit of the living God today and may every thing that opposes your life and health be crushed and gone forever. So be it, dear Jesus.

kendal
Reply August 3, 2012

i'm just overwhelmed for you.

Ann Kroeker
Reply August 3, 2012

Sometimes, when I get overwhelmed, I remind myself not to look too far ahead and just do the next thing. Sometimes for you the next thing may be to manage the feeding tube; sometimes it may be for you and Seth to giggle and heat up a leftover fajita. My next thing is to pray for you. Right now.

Linda
Reply August 3, 2012

Thankful you can go home. Praying for you always - for grace and strength, for wisdom for the doctors, for healing (please Lord).

Diana Trautwein
Reply August 3, 2012

One foot, one step, one breath prayer at a time. Glad you can take your sweet boy home, praying that nourishment will bring him back to center with the weight, that more answers will appear somewhere - most likely in your own mama's heart. Oh my.

Chris Mouk
Reply August 3, 2012

Im glad to read that he at least gets to go home now, thats encouraging! Ive been praying for him and for you and Seth and for the boys and hope to see little Titus's strength and weight grow in the coming months. You all will continue to be in my prayers! Congratulations on the positive progress!

imperfect prose
Reply August 3, 2012

i love you so much.

Genevieve @ Turquoise Gates
Reply August 4, 2012

Wow - that egg protein allergy could be quite something to live with! Epi pens all around the house, I guess?? And the Chiari malformation? Any explanation on that one? Thinking of you and lifting you up for grace, endurance, glimpses of beauty amongst thorns and ashes...

Leslie
Reply August 4, 2012

A friend of mine passed along your blog to me through a post on Facebook. I know that Chiari Malformations can sometimes be due to a CSF leak (so it is a symptom of the true problem rather than being the actual problem itself.) The spinal fluid leak causes a downward pull on the brain as well as many other symptoms. Just wanted to mention--it may be worth asking your doctors about. Lifting you and your family up in prayer.

Kimberlee Conway Ireton
Reply August 4, 2012

Amber, So glad to hear you're going home! I will continue to hold you and Seth and Titus in my prayers. I am praying for a diagnosis, so you can know not just what's going on but why. Also praying for more laughter-filled moments like your friend Emily brought you.

Earlier this week I re-read this passage from Streams in the Desert, and thought of you and your last post about Titus. I first read these words the day my twins were born, less than 24 hours before the younger twin was ambulanced in critical condition (his lungs kept collapsing) to Seattle Children's Hospital. It sustained me in the scary days that followed. Perhaps it will sustain you, too.

"No matter what the source of the veil, if you are in God and surrounded by Him as by an atmosphere, all evil has to pass through Him before it comes to you. Therefore you can thank God for everything that comes, not for the sin of it, but for what God will bring out of it and through it. May God make our lives thanksgiving and perpetual praise, then He will make everything a blessing." (Streams in the Desert, July 23)

Praying,
Kimberlee

Robin ~ Pensieve
Reply August 5, 2012

Out of town & on the road, but I was thinkin' about you just a bit ago and checked in just as soon as I could. SO very thankful you're headed home with a few answers. Accepting of what is and what will be.

I think the prettiest picture of Jesus you can show anyone is being called out as lovebirds. THAT is beauty!!

xo

amy
Reply August 5, 2012

Led here by Ann Voskamp.....Standing in line at a Women of Faith event....God brought you to mind and I prayed for you.....Laying my head on my hotel pillow...again.....God brought you to mind and I prayed for you......Walking through my front door.....buying lemons.....feeding chickens.....making supper.....God is continually bringing your precious family to my mind......You all must be a very big deal:) to wear out this ol Kentucky gal's mind like HE is doing......I thought you might like to know you seem to be always on His mind because He certainly is putting you in mine every time I turn around:) A verse that comforts me when I am uncertain....Isaiah43:19.....May it comfort you all too.......Hugs and Prayers, A

Faia Cage
Reply August 5, 2012

So, glad that Titus is getting well already and can be able to go home now. Take a full rest in your home Titus and for sure you can recover your strength instantly baby.

Cassie Boorn
Reply August 6, 2012

So happy you are home. So many prayers being prayed your way. xo

Steph {HopeUnbroken}
Reply August 7, 2012

continuing to pray. . .
steph

Pauline Stacey
Reply August 8, 2012

So, glad that you are going home. This is really a good news.

Lisa @ Crazy Adventures in Parenting
Reply August 11, 2012

Continued prayers to you guys. Hoping Titus is faring well at home.

Laura Parker
Reply August 16, 2012

I will always send prayers of Titus. Gladly that you are going home already. This is a good news. I am happy for you Amber.

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