Thursday, March 5, 2009

rambo and his TP tube

Well, things they are a changin'.

We came in so excited about Jonah eating last night. And he tried again this morning, and had eaten 5 or 6 of 10 cc's. They've now increased the amount he should have. We were so pumped walking in to see him, and lo and behold if they're not, as we speak, putting in a TP tube. It will run from his nose, down his esophagus, through his stomach, and just to his intestine. The nurse just came in and said it's in place and he did really well.

I have mixed feelings about it. I know he needs nourishment and quick, but it was just a shock this morning since he had started eating more. But Dr. Furlong had talked with Dr. Fine, and he said it would be okay, that he had done it on EB babies, as long as it is a short-term solution. The positive is that Jonah will get the nourishment he needs, will be able to heal and resist infection better, and he can still bottle feed. If he starts really picking up with the bottle feeding, we'll be able to take the tube out. I just hope they've found a great, tape-free way to attach it where he can't pull it out.

They've ordered him a special pulse-ox to go on his forehead. This morning he's looking very much like Rambo with a soft strap around his forehead trying to hold on his current pulse-ox. It's not really working, but he looks totally adorable.

I'm going to go check on him right now, see how the tube looks, and try to bottle feed him again.

Please pray that all will be well with the tube, that Jonah will continue to eat more and more, and that they can take it out very soon. I'm sure if this tube doesn't work and he doesn't start eating more, we'll be looking at a tube that will go directly into his stomach. This would be a more invasive surgery.

Sorry to bum you guys out. I'm slightly bummed myself. I'll get some pictures when I go in there.


Denise said...

Coming over to tell you that I will pray for this beautiful child and pray for you and his Dad...... Suffer the little children to come unto me Jesus said....... HE loves HIM more than you....... HE does not sleep and keeps constant vigil over Jonah.......

Sister in Christ

Cathy Meister Melton said...

I'm so excited to hear about the progress your sweet boy is making. Will continue to pray that God will help and heal him so that he can come home to his parents that were chosen for this special day.

Anonymous said...

OK, so positive spin...he can eat twice as much, bulk up, and be the most adorable Sumo Wrestler evah!

melanie said...

Hey, Aunt Melanie here. That anonymous comment on the Sumo Wrestler was from me. Not sure why it showed up as anonymous...duuuh.

Lindsay said...

Patrice, you do not know me but we attend your church and I have been following Jonah's situation. Steve and Erin Weeks sent out a prayer request to our class right after Jonah was born and I've been praying for him ever since. I've been following your blog and the facebook page and have sent out prayer request for your family to my friends and family. I know God can work miracles and I know all the prayers that your family is receiving is helping. I wanted to pass along some information from a friend of my cousin. Her name is Karen and she has EB as well. Her email is below:

"I have this same disease - my version is the simplex/webber type and the majority of my issues are external with the exception of my eyes.
where is the family? - I would love to meet them and put them in touch with some support. Much of my care is indivualized and on a case by case basis. And my doctor is at Duke Medical Center so much of my care was/is over the phone. There was one boy that was about 10 years younger than me. I met him through a make a wish type foundation. We emailed for several years - and sadly he passed away several years ago - he was in his late twenties."

I have her phone number if you might be interested in calling her. She might be able to offer some support and/or information.

I hope the feedings continue to go well and I hope the tube does not bother Jonah. He is so precious and you can tell that God's hands are holding him tight. I wish you and your family all the best, and I hope to continue seeing improvements with Jonah daily. May God continue to watch over you and your precious baby.

Many Blessings,
Lindsay Holder

lrm said...

Still saying many prayers for Baby Jonah here at our house. Somebody must be listening because little by little he keeps doing so good. He sure is a cute one!
Stay Strong!

Ggainey said...

Matt, Patrice and Granny Debbie,
Praise God for what he is doing in little Jonah's life. I was awake around 3:30am this morning myself and couldn't go back to sleep. Turned the computer on and went immediately to your blog. Looked at that precious face and started praying for him. God is so good and he is the "Great Physician" and we are all seeing proof of that day by day. I was praising him earlier for what he has done. You all are constantly in my prayers.

With Love and Prayers,
Gail Gainey

Stephanie said...

"Be happy with those who are happy. Be sad with those who are sad." Romans 12:15 ;(
We are still praising God that He is good and that Jesus holds all things together. Your steadfastness is amazing. You are an INCREDIBLE mom fighting for Jonah each step of the way.
I am just in awe of God's grace through you.
I am going to keep writing you comments until you turn me in as a stalker!!:)
My heart is with you and I love getting the updates. I am recruiting prayer warriors everyday for Jonah.
Jesus will be your center of gravity in this heart-wrenching chaos.

Life is not fair but God is good.
This is not our home. It must be so obvious in the NICU that this is not our home.
He is coming back for us. Stay strong. He loves you so much. His glory is SHINING from that hospital room and your heart.
"...we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord FINALLY brought about.
The Lord is full of compassion and mercy."
James 5:11

sarah said...

I am praying for physical care for Jonah and peace for you in the midst of the unknown. But mostly what I a wanted to say is "He is the cutest!" And you are right--his rambo look is the best.

a fellow mother on the journey

Anonymous said...

I am still praying relentlessly for your beautiful boy. For some reason I feel as though God brought me to your blog this weekend. I had a son born in April whos name is Gabriel Matthew. My husbands name is also Matthew. I feel such a connection to your family and want you to know you are all on my heart and my mind constantly. Thank you for sharing the updates and the pictures. He is one of the most beautiful things I have ever seen.

Much love and prayer,

LisaShaw said...


May the Lord's strength and encouragement fill you and your husband as you continue to trust in HIM for your precious little boy. I'm PERSUADED that JONAH is in GOD'S CARE!!!

Love you.

Anonymous said...

Big Hugs and love coming your way, wow yesterday was a day full of mixed emotions for you guys, keep the faith and always know your sweet baby Jonah is so covered in prayers and love, and our Father above is holding him tight every night, until you get to hold him in your own arms. I love you all

Donna T said...

Patrice,Matt,&Jonah: I was sent your prayer request by a friend who knew I recently had a grandson (born 12-16-08)who has been diagnosed with Cystic Fibrosis (another genetic disorder). I am a school teacher and my class and I are keeping a daily tab on Jonah's progress. I am praying for your little angel. Anxiously awaiting a good report, Donna Tate and her students, Pin Oak Elementary, Lexington, Tennessee.