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.
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So glad to hear that you’re home! Continuing to pray for you all. Much love x
Tanya Marlow recently posted..Wrecked: the surprising cure for dissatisfaction
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!
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.
HopefulLeigh recently posted..This Is How We Met: Leanne Penny’s Story
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.
Kelly @ Love Well recently posted..11
Glory be.
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
this girl is praying.
Gosh. I’m praying for you guys. Every moment I think about it.
Lore Ferguson (@loreferguson) recently posted..RED ROSES like SIN
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.
Prudence recently posted..New Dressings & Hope
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!
Continuing to pray for your sweet family. Cheering Titus on for weight gain! Happy you guys get to come home.
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.
Monica recently posted..Here
I like smiles and margaritas and families going home. You are total lovebirds! <3
Airs recently posted..On chiming and changing
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.
Nacole Simmons recently posted..Deer in the yard was only the beginning…
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.
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.
Nacole Simmons recently posted..Fear Won’t Stop You {And Gratitude}
yes, praying… so glad you’re all going home.
Carissa recently posted..process
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.
i’m just overwhelmed for you.
kendal recently posted..wednesday night news, verklempt and a prayer for sons
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.
Ann Kroeker recently posted..Food on Fridays: Cherry Republic
You are good, Ann. Thanks.
Seth recently posted..August Rain: Introduction (a Tweetspeak Poetry Piece)
Thankful you can go home. Praying for you always – for grace and strength, for wisdom for the doctors, for healing (please Lord).
Linda recently posted..Six Year Blogiversary
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.
Diana Trautwein recently posted..The Pulse of a Church: Faithfulness
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!
i love you so much.
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…
Genevieve @ Turquoise Gates recently posted..The midnight oil
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.
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
Kimberlee Conway Ireton recently posted..The Mountains We Can’t Climb
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
Robin ~ Pensieve recently posted..My sister & the Traveling Red Dress ~ Part 3 (Finally, the pictures!)
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
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.
Faia Cage recently posted..Weak Erection: Know how to get hard and last longer in bed naturally
So happy you are home. So many prayers being prayed your way. xo
Cassie Boorn recently posted..How to Take Amazing Photos With Your iPhone
continuing to pray. . .
steph
Steph {HopeUnbroken} recently posted..rest
So, glad that you are going home. This is really a good news.
Pauline Stacey recently posted..How to get a Celebrity Smile
Continued prayers to you guys. Hoping Titus is faring well at home.
Lisa @ Crazy Adventures in Parenting recently posted..Reason 234892374 Why I Need a Man-Servant Named Hans
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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