Tuesday, March 3, 2009

jonah - tuesday, march 3

Good morning (afternoon, night... what's going on?) friends.

WE HAVE BELLY PEOPLE! I was so pleasantly surprised after his dressing change to see exposed belly, and it looked so beautiful! I know that's just a small victory - a today victory, but I'll take it! If we wake up tomorrow and he has blister there, I will be so sad, but I'm so happy in this moment - it has made my day. I was literally dancing.

I was here by myself for about an hour this morning, and Jonah was the most wide awake I've ever seen him. He focused on me so hard, and I felt like he really knew it was me. We had some great one-on-one time (I cried through most of it), and I was thankful for his alertness. I hadn't taken the camera back with me though, so I missed out on some great pictures.

He is now wearing the pulse-Ox monitor on his upper left arm. He doesn't have a lesion there and they put ointment on first and bandages over it, so it won't stick. Hopefully it won't cause any further damage, but even if it causes a blister, it still makes me feel better to be monitoring his oxygen.

He's still not eating. He definitely seems interested, but he just won't swallow. I don't know if he doesn't want to or can't, but it's extremely frustrating. If the ENT doesn't get up here soon to check him out, I'm going after him/her myself. The speech and occupational therapists came today and say his tongue and mouth reflexes look good, but they don't want to force too much with the swallowing or increase his feeds until we know what's going on in his throat. His head and face continue to look good (and EXTREMELY cute), so that gives me hope. He's so adorable. I fall more and more in love with him every second. Five minutes after we got home last night, I looked at the pictures of him that I took and that I posted, and was ohhing and ahhing about how precious they were. I told Matt that I missed him and wanted to go back. :) But I did get a full 6 hours of sleep, so it was good that I took a break.

Here are some more great ones -


Pulse-Ox anyone?

Aunt Shaina meets Jonah for the first time.


89 comments:

Mindy said...

Patrice, I am so glad you got some good sleep and you got to see a beautiful belly!! We are all still praying here in TN!

I'm The Momma, That's Why! said...

His aunt is cute - but Jonah's cuter! He really does look better, doesn't he?

Saying my prayers,
Grannie in Florida

Anonymous said...

Amazing. He is looking better.

Anonymous said...

I will continue to pray for your sweet Jonah!!

Jane said...
This comment has been removed by a blog administrator.
lynn said...

Hi Patrice,
I know your sister-in-law, Kim, from church. That is how I found your blog. I just wanted to tell you that Jonah is absolutely adorable! I am glad to hear that you had one on one time with him, too. We are praying so hard that God will provide a miracle that will shock and awe the medical field. We are also praying for His hand to comfort you, your husband, and the rest of the people who love and care for Jonah.
Lynn Lange

j3k said...

Oh my goodness.... God is good!!! Look at that gorgeaous baby!!!! He is absolutely the best!!! I can't get enough of him. If I didn't have 4 kids and a needy husband I would take the 10- 12- 20hr or however many hour drive to just to come hold your hand through this. I have spent endless hours in a hospital with my daughter over the last 16 years I know how long the days and nights can be and how nice a friendly face can be at times. Please know my prayers are with all of you!

Hearts and Hugs
Marie

Kelly Bennett said...

He is so beautiful.......... what a cute little belly too!!!! We are praying for you and your family each and every day.....

Joanna said...

So happy to see you smiling! You are a radiant mama! Thanks for sharing with us these precious moments with Jonah.

Joanna

Anonymous said...

He's absolutely precious! God gives us these small victories to keep us going. Remember that with him all things are possible. I'm praying for a full recovery of your sweet baby boy!

Jane said...

Jonah looks much improved Patrice, so glad they could put the monitor on. I am sure you feel better about that. Thank you so much for sharing updates and pictures, so many people are praying for Jonah, you and Matt and are so interested in his progress. Leigh calls every day when she gets out of school to see if an update has been posted. Prayer is powerful and a lot of people are lifting you all up. May God Bless and keep watch over all of you, still praying.

Jessica K. said...

He is looking so handsome and cute!! I am here praying for him.. I have you guys in my thoughts and prayers. And he really looks just adorable. It is so nice to see some belly pics of him. The sores look better in the pics, are they gettign better?

Jessica, Germany

Cindy said...

What a great Victory Today. He is so beautiful. I am glad that he seems to be making progress each day, we will continue to pray that he is able to eat on his own and does not need a tube. I am not sure if you remember me but we used to go to CBC together. I hope the rest of your day is wonderful and Jonah continues to show progress.
Much Love:
Cindy (Mullinix) Galloway

Laura said...

Oh Patrice, he is looking so cute and his skin is looking better. Very exciting accomplishment for today. The night before last Eli wanted to say a prayer before I did at bedtime. At the end he mumbled something and I stopped him and asked what he said. He said,"baby Jonah". Nothing can be more innocent and pure than a child praying for another child. We are continuing to pray for baby Jonah, you, and Matt.

Laura Sullivan

Janel Waters said...

OH, Thank the Lord! He looks AMAZING!!! That is such a huge improvement!!!

congratulations on today's victory AND getting 6 hours of sleep!! You cannot neglect yourself right now - he needs you at 100%! Take care of yourself!

Janel

Baby Bird said...

Dear Patrice:
PRAISE THE LORD! I am so glad to see his sweet tummy:) I was dancing with you - he is so very adorable and you have every right to go on and on about him!
I was also glad to hear that you were able to get some sleep...keep taking care of you, so you can stay on top of taking care of Squishy;~)
Little scripture for you..."Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12
We love you and Matt and baby Jonah! Aimee Pence

Katherine said...

WOW! Patrice, he looks so much better, and you're right ... it is WONDERFUL to see so much "belly"! This is a much-needed spirit-lifter for the day. Thanks so much for posting these pictures!

Tracy said...

I'm so glad to hear that Jonah (and you) are having a good day!!
I hope things continue to improve...lovin his cute little exposed belly :)
I imagine you are extremely relieved to be able to monitor his oxygen now!
Hopefully you will talk to the ENT very soon! You have been one patient lady!
Thanks so much keeping us updated...we will continue to pray for your little boy!!

Anonymous said...

We need to light a fire under those ENT docs, huh? He looks so sweet Patrice!! And I'm so glad that Shaina got to go back!! I will try to get back by this week!! Stay Strong!

-Jennie Rickelton

Anne Conover said...

Patrice, he is SO beautiful! His belly looks wonderful - has it always been lesion free, or has there been some healing? Sorry if that's a stupid question, but I thought he was more 'covered' in lesions? I stare at his pictures and read your posts over and over. I just can't get enough of his cuteness and your updates. Thanks so much for them! Love you guys and hugs to all!

AmberS said...

He is looking so good! I have been praying hard for all of you.

Amy said...

He looks so great! Did you ever say how much he weighed? I know he is swollen, but he looks like he's a "healthy" boy.

Dirtpuddle said...

You don't know me, I just happened to stumble on your blog from a link on a different blog, and so on, but I just had to comment on what a cutie Jonah is! And that IS a nice-looking belly! I had to add your blog to my reading list now so I can keep up on the tiny little baby who's a complete stranger but has touched my heart :)

LisaShaw said...

Patrice since I found out today about your bundle of joy Jonah I've been praying and I came back over to HEAR A PRAISE REPORT of all the ways OUR GOD IS MOVING IN THIS SITUATION. I'm excited to see that I received what I expected -- the wonder working power of our GOD!

I'll be back for MORE praise reports. God is good!

Peyton said...

Whoah, nice sleep last night and then today you get bare belly, pulse-ox, some great eye-to-eye contact, and Aunt Shaina getting to go in and see him for the first time ... sounds like a good day. It's hard to be away, but I'm so glad to hear about all of the bright spots. Tell Jonah-Bo-Bona that Uncle Peyton says hey when you go in next.

Dawn M. said...

What a blessed day that Jonah had! Take joy for the small victories like cute tummies. Don't ever feel bad about being pushy with the doctors or nursing staff. It is your son's life that you are fighting for and you feel free to hunt them down :-)

blessedmomto7 said...

Precious-praying for your little sweet heart. and for you-glad you got rest.

Sara said...

In regards to his swallowing. I have a 15 month old w/o EB but shortly after she was born she had problems swallowing and seemed like she forgot how to swallow. She had barium swallow done and it showed she had SEVERE reflux and was aspirating into her lungs (which is REALLY bad and can lead to death. Once she started on reflux meds she began to eat and swallowing better.

The only way to determine if there is something wrong with Jonah's throat is to either do a barium swallow, which is an x-ray where he has to drink a special liquid, or scope his throat which you DO NOT WANT DONE unless there no other options. The scope alone will cause severe damage. I had my throat scope once and it caused severe damage that took weeks to heal. It was an adult when it was done and I couldn't imagine how much damage it would cause a baby, especially one who might have dystrophic EB. The doctor may tell you the scope won't cause damage or they will be extra careful, but I would still be worried. The barium swallow is less invasive, but if he won't swallow at all, then they would have to put a small tube down his throat to get the special liquid in there. But it wouldn't be in there for vary long. Does he seems to choke or gag on his saliva? Feeding difficulties are very common in EB babies. My daughter had to be feed through a tube till she was 3 weeks old and able to suck and swallow. Good luck. I hope the ENT comes soon!

Karen said...

Patrice,
I am so glad to be able to follow Jonah's progress on your blog. I'm checking it all the time! He looks great to me, such a sweet sweet little boy. It looks like his lesions are healing? I'm praying for you friend and have many family and friends that are too. You, Jonah and your family are constantly on my mind and in my prayers.

love, karen

HIS Daughter said...

I found your blog through Lisa Shaw and I want you to know I am praying for Jonah and for you guys as well.

Father please take care of this sweet family and baby boy.

Blessings and many prayers,
Teri

Tucker Family said...

The Tucker family from Raleigh are praying for you all!!!

BoufMom9 said...

I am so happy to read his belly is uncovered. This is great news.
I have been reading up on his disorder since discovering your blog and am so thrilled to see it seems there are some real advances going on. What a blessing.
Will continue to keep your precious boy in my prayers.
Blessings.
~ debi

Jenn said...

It's wonderful that you are taking happiness from the little victories.

Your happiness inspires hope and renews faith!

Amy said...

Beautiful belly...now he needs to work on filling it up. Much love to you, Jonah (and Mommy and Daddy)! Aunt Amy

Erin Edwards said...

We're thinking about you here:) My son (3 years old) was cared for at Brenner's & he has a severe skin disorder too (collodion baby/ARCI). We are local (Thomasville) if you need anything. I've had a lot of experience with skin:) beepbeepinajeep@ichthyosis.us

nancy said...

I was out of the house today and away from my computer. I could not wait to get home to read the update on Jonah! Well, just seeing you made me smile and then Baby Jonah........whoa, he looks beautiful! I want to just eat him up! He is looking better to me each time you post more pics! I hope he will be able to eat more soon! GET THAT ENT IN THERE! DOESN'T HE/SHE KNOW HE IS MOST IMPORTANT RIGHT NOW???? So glad you got some good rest last night and keep your charming, witty self! You make me laugh and cry all in one of your post! Thanks again for being so good about sharing him with us:) OUR GOD IS AN AWESOME GOD!

Sending lots of love from Pitt County!
Nancy lee

Brian and Morgan said...

Patrice, what a special little gift from God. I just spent the last 30 minutes reading your blog, and we will spend some time praying for your little man as a family tonight. He is so precious, and God is so big. We pray for His peace for you and Matt, an infection free week and full belly for Jonah, and thank Him for a sweet little tummy for his mommy to see! Love, The Gronewollers

singing mama said...

Hi Patrice and Matt,

Just wanted to let you know I am praying for your precious little man, in fact God even woke me up to pray for him in the middle of the night over here in Australia (which was most likely day over there) I am praying for full health and healing for him and I know God can do great things. He's got your little man in his hands whatever the outcome!
Praying for you too, for rest, peace and His presence to be very real at this time!
Luv singingmama

PS he is sure is a cutie!!!

The Five Pennies said...

Continued prayer for your beautiful little boy.

Miss Cook said...

yay for baby belly!!!

Alisa said...

Jonah is such a beautiful baby boy! I don't know your family but I promise to be praying for you and your precious son. I found your blog through a friend and as I write this I am sitting in the hospital with my own infant daughter. We spent MANY weeks in the NICU ourselves so although I don't know exactly what you are going through I have experienced something similar. My daughter has had several hospitilizations and surgeries, including our current stay which is going on 2 weeks now and she is only 7 months old. It breaks my heart to see her struggling and in pain so I can only imagine the heartache you must be feeling. I rejoice with you that he is having some improvement and I pray he continues to do better. Hugs and Prayers to all of you.

Christy said...

Oh my word, he is beautiful! He has such a handsome belly! I'm sure you are feeling better knowing that he will be monitored while the "Mommy Monitor" is not there! Praying for more wonderful days!

Anonymous said...

He is adorable. We are praying for all of you.

Rose said...

Patrice, HE looks SO good!

SUNSHINE MOM said...

Wanted to let you know that we are a local family praying for Jonah.

Jill said...

Patrice,

He is so beautiful - thanks for posting all the pictures. I was just reading all the comments. I am just like Anne. I can't get enough. I keep looking and looking at the pictures.
I am thankful you got 6 hours sleep.

Lots of Love
Jill

fulksfam said...

Patrice - I cried and cried when I saw the pictures of his whole body covered in gauze... and now I am crying tears of joy over seeing his perfect little tummy! God is SO good! We've got our church here in Searcy praying, my mom and dad's church in Durham is praying, and my mom-in-law has her many friends back in Florida praying. We are so happy for you guys - Jonah is looking more and more handsome every day!

Jessie and Chris

Anonymous said...

He is darling!! So glad to hear you got some good sleep last night. I stop often throughout the day to pray for Jonah, you and Matt.
Cindy in NC

bunchofbull-ers! said...

I am praying for Jonah! Sweet boy. And cute belly! ;O)
I will add his button to my niece's blog. She is in the NICU also. Bless these sweet babies!

andiegrace.blogspot.com

In Him~
Kelly

Anonymous said...

SO HAPPY TO SEE BELLY!!! OH my Patrice he looks so good! Prasie God! I'm so glad you got to spend mommy time with him today, i bleive you and Jonah both needed that. it makes me so happy he got to meet his other aunt today as well :)
we are praying strong every sec we get for Jonah.
Hope you have another great night of rest, let me know if you need anything. I CANT wait to read another update on the blog. I love you all!

Erica McKnight

Jill said...

I don't know you but I am touched by your story. Praying for your little guy and your family.

Kristina said...

What a sweet little baby you have there. I do totally understand why you were ohhing and awwing over him. He has such an adorable face :)
I will be praying that the doctors hurry up and check oh Jonah's throat and will also be praying that his throat isn't affected. All of you are in my thoughts and prayers.

LoveLladro said...

He is looking beautiful! Love that mat of black hair ;~) We're still praying with you guys!

Anonymous said...

He is so beautiful. We just continue to pray for you all in Missouri. Your baby is a precious gift from God!

Love in Christ Jesus,

Leslie

amber said...

WHOO HOO!! Go ahead Jonah!! Mom and Dad, hang in there, too!

Amber (Lauren's Friend and Co-Worker)

MelH said...
This comment has been removed by the author.
Anonymous said...

My thoughts and prayers are with you and your family.

Janet said...

I found your blog through COLE'S Foundation. My thoughts and prayers are with you and your entire family. Just by looking at his pictures, he looks better than the first day or so. God Bless.

Prayerfully,

Janet Inman(COLE'S Prayer Team)

anglswngs said...

I want you to know I am praying for your beautiful boy Jonah. He is just as sweet as can be in those pictures.
Debbie, Annapolis

Brooke Tate said...

Patrice, Matt and Jonah,

Just wanted to let you know that we are praying for you here in Lexington, North Carolina. May God show you His favor, love, comfort and HEALING during these difficult times. It encouarges my soul to know that there are steps forward (even if they are small)!! Praise the Lord for His mercy over you and Baby Jonah!!

Erin said...

what a beautiful boy! Still praying in Ga. Love and blessings~erin

Julie said...

So happy for some good sleep! And I love seeing pictures of sweet Jonah. He is so precious! Praying for all of you and a great day tomorrow!

brightleigh said...

Wow guys...major traffic jam on this blog! I love it!

I talked to our school's head custodian yesterday about Jonah. She is a very spiritual woman and said that she wanted to pray for him but she needed a picture to "put her hands on". So, I printed some pictures out--I put one on my door at school so that people will see it and ASK. I gave her the picture today and she said she had a scripture to pass on to you guys. It is James 5:16-

16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.

She said to go and touch Jonah and say this scripture. She said she would hold his picture and say this scripture.

I wanted to pass this scripture on to you and Matt...

Deuteronomy 31:6

6 Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.

We love you all very much and are surrounding you with prayer and love. Jonah is so precious and I know you just want to eat him up! Be strong and keep the faith!

Love,
Leigh (Rob & Seth, too)

Baby Boot Camp said...

A friend of mine from church passed your blog on to me tonight. I will be lifting your precious little sweet boy up to the Lord and asking Him for a complete healing. Jonah is a beautiful baby. May God give you courage and strength to face all that you are going through.

Chrissie
Charlotte, NC

Sarah said...

Oh, he is such a cutie! He is looking so good.

Continuing to pray for you all.

Anonymous said...

He is so precious!! I was so glad to see you had posted some new ones of him. I am praying and believing our God for a wonderful miracle in this sweet baby's life. I am going to pray specifically tonight that the ENT gets to you ASAP!! My baby boy is having tubes in the morning so I have ENT on the brain. =)
I know you don't know me or my family but your family is in our prayers.
Blessings,
Daisy (Alabama)

Tiffany said...

Patrice - I am SO happy to see his sweet belly! His little tummy looks so good I think -- still praying for all of you and hoping those ENT's show up first thing tomorrow! Best wishes for another good night of sleep, a great day tomorrow with more and more reasons to be thankful, awake mommy and daddy time, and more small miracles to lift you up each day. I check the blog SO many times each day and cannot wait to hear more good news - keep it coming!! I think we are already seeing God's plan for Jonah's life through all of the people who have been touched by your story. Charlie's prayer tonight was for more and more miracles for Baby Jonah -- Love to you all!! Tiffany

ccashane said...

Not sure if you have already found this or been shown, but it says it's the only National non-profit org dedicated to finding treatments and offering support and info for people w/ EB and their families. It's called DEBRA - Dystrophic Epidermolysis Bullosa Research Assoc of America.

http://www.debra.org/index.php

God bless. Our church is praying for you and your little one.

Flmgodog said...

Jonah is a a beautiful baby. I was sent here by a few other blogs I follow and have been checking up on baby Jonah. I just saw that a few other EB parents suggested bottles for cleft babies for feeding. I am sure the dr.'s where you are supplying you with what you need but my daughter was born with a cleft palate and we used several different cleft feeders. I have several un-used, unopened bottles. I believe I have for "Pidgeon" bottles, and maybe six "Mead-Johnson" bottles. I would love to send them to you if you could use them. They were quite expensive and I would rather send them to you if you could use them. Feel free to contact me if you think you might want them.

Anonymous said...

Dear Patrice:
I do not know you, but was sent your blog by a friend. As a fellow woman of God and mother of two (Cate 2 and Colin 10 months), my heart weeps for you. Your little Jonah is a cutie! Please know that I will be praying alongside you. Our God is so much bigger than I can imagine, so I trust Him to be next to Jonah every step of his young journey.

In Christ --
Chris Chaney
Monroeville, Alabama

Anonymous said...

Love the belly! What a cutie! Still praying!!

Katy (CA)

Storybook Woods said...

Hello I am new to your blog and have been reading about Jonah, I am so sorry. I will not pretend I know what you are going through. But I do know what is it like to have a baby in ICU. I will also tell you there are time when all we can do is barely keep our heads above water. It is not till later can we see all the ways the Lord was there, all the ways He has carried us. I will be praying for Jonah, I will be pray for the care he is getting, wisdom for the doctors and also for you. Blessings Clarice

Mindy said...

We will be praying for your family. Continue to lean on God for strength and courage. Jeremiah 32:27 "Behold, I am the Lord, the God of all flesh: is there any thing too hard for me?" Nothing is too hard for God!

Danielle Banks said...

I ran across your blog through a friend of mine and just wanted you to know that Jonah and his mom and dad are and will continue to be in my thoughts and prayers. I cannot imagine the turmoil you are going through, but just continue to keep your faith in the good Lord above. He will guide, guard and protect your little fellow. God Bless!
Danielle Banks
Cove City, NC

Kat and Crew said...

I found your blog through another and just want you to know that we are praying for your precious family throughout our day. Jonah is BEAUTIFUL! It is so wonderful to see that great looking belly. I have a friend who's 5 month old son was just diagnosed with EB also. May God continue to give you strength and good days!

Brooke and David said...

His little belly looks great! I pray for the next few days to show more signs of improvement. Your faith through all of this incredible! What a blessing you are to all of your blog readers! Stay strong and continue to keep the faith.

In prayer!

langhofflove said...

I am new to your story but have absolutely fallen in love with your sweet family. I have placed your "Praying for Jonah" button on my blog and continue to pray for him. May God be glorified in all things. Jonah is such a sweet baby - I can't imagine how badly you must desire to hold him. The Lord is holding you and Jonah so tightly.

Nightowl Mama said...

HI Congratulations on the birth of your beautiful baby. A mountain of prayers coming his way from Chicago!

Our Family's Spot said...

Jonah is absolutely beautiful! We are praying for his healing and for strength for you guys as well.

Blessings,
Kelly

Analiza Bernat said...

He's looking great Patrice. Hang in there, each day WILL get easier. Lots of LOVE and constant prayers!

Jax Hatmaker said...

Hi, I don't know you, but found you through MckMama's blog. I am praying for your family and just want you to know how beautiful Jonah is and that no matter what comes he is fearfully and wonderfully made...just for you! Congratulations on your precious son!
Carie Hatmaker

Stephanie said...

What a beautiful BELLY!!! Praying so much for his complete healing.
May you find treasures in darkness and hidden RICHES stored in the secret places.
Isaiah 45:3

Drea and Dre said...

Your love and faith have touched both Drea and I in ways that we can't put into words. You are continuously in our prayers. It was wonderful this morning to look at the prayer request you placed on Monday and see how God has answered them.

Love ya
Dre and Drea

careymomma said...

what a cutie!! We pray for his continued healing. Everyday is a step towards going home in your arms! Stay strong.

-Mel

Sarah Kelleher Ray said...

Patrice, I just went through and read your story and I want you to know that I will be praying for you and your family all the time and ask for prayers on your behalf from my church tonight.

Jonah looks like the sweetest littlest sweetest sweetheart!!!

I thought of you the other day!
I was trying to comfort my stepdaughter Sadie, who is going through some tough times, and it was crazy but something you said during a cabin devo at camp a LoOoNg time ago popped into my head: how you can think of your struggles as a "vote of confidence" from God (because of Phil 4:13).

Funny the things that stick with you. But here is a very belated thank you for your words that night. I always always always looked up to you at camp!

Hey Sarah Crump if you are reading this! miss you!

love,
sarah

Anonymous said...

Is there anything better than watching a miracle unfold right before you? Praying everyday for your sweet boy, he is precious!

Jennifer
Brooklyn, MI

Jru the Jesus Junkie said...

Hi Patrice and Matt! It's Jennie Ingram. I found your blog via facebook and have been keeping up with the journey of Jonah. I am praying for his healing and recovery.

Sonja said...

He looks so adorable! I found your blog through somebody else's and have prayed for you and your little boy the last couple of days. Just wanted to tell you that I hope everything turns out well!

clara said...

We are praying here too! Jonah is absolutely beautiful.