Monday, March 9, 2009

jonah - monday, march 9th

Jonah had several changes over night.
His TP tube is now an NG tube (going only to his stomach, not his upper intestine) after it slipped out last night. They seem to think this is no problem, and replaced the tube today with a smaller, softer one.

His PICC line is out now. This was Jonah's decision, not the doctor's. Dr. Furlong had wanted to get it so that his right arm and hand would heal better and they could wrap it easier. However, she wanted to try him on oral pain meds for a couple days before removing it. He had other ideas. They started him on a different pain medication today (methadone), which they gave him orally. He was in a lot of pain today as they did his dressings, but hope to give him the methadone earlier, so that it will have more time to kick in before they have to do change his bandages.

His WBC count is 11.8, which is good. :)

His blood culture is still negative after four days, which is very good. :)

They have begun to turn off his feeding tube an hour before bottle time, in hopes that he will feel hungry and hopefully eat better. It worked for his 11:00 feeding. He was actually crying for it. He ate 25 of the 50 cc's in the bottle. It was encouraging. We have only attempted one bottle feeding since then, due to his hangover, but he wasn't interested at all. I'm about to go attempt another feeding here in a minute, so hopefully that will go better. Gradually the idea will be to only feed him by tube once every three hours (instead of constantly over 2 hours) in hopes that he'll get hungry and take the bottle before the tube feeding. And then, hopefully NO TUBE. It will be a slow process, but I'm looking forward to trying these changes.

Here are some pics from the last couple days.

A hat we fashioned out of burn netting. Jonah was cold.

Attempting to wash Jonah's hair. This is what happens when I tell Matt to take a picture of me washing baby's hair, and he doesn't know how to use the zoom out function on the camera.

Jonah and his new hair-do. As one of the commenters said, "Embrace the mohawk." He's one greasy little boy, and I LOVE him.

Matt attempting a bottle feeding with his only good hand, which unfortunately, happens to be his left one.


73 comments:

Katherine said...

Another good day, it seems! Always does me good to check in and see Jonah. I check back several times a day, not just to get news but also just to see his face. I just can't get over how much he reminds me of Jake, especially as a newborn. I know Matt looks a lot like Grayson, and Jake looks a lot like Grayson, but it really takes me back 10 months to when Jakey was that age!

We love you so much; thanks for keeping us updated.

RLR said...

So glad to hear today's good news! Praying every step of the way with the feeding changes, dressing changes, medication changes.... God is holding you all in the palm of his hand!

Katherine said...

Apparently I use the word "just" a lot. Sorry.

hgodwin said...

He is such a doll! Goo Jonah! Glad he is making progress one day at a time! Before you know it this phase will pass and you all will be home as a family!

Sarah said...

What good news!! I feel so encouraged for you! I really love the hat :)

Laura Hopper, Midwife said...

I have been reading your blog since since Jonah was born. He is such a fighter! Praise God. What a handsome little man you have!

Jennifer Pelkey said...

We have never met, but I have been following Jonah here on the blog and facebook. He is just the most precious little boy. We pray for you each and everyday. It was so wonderful to see the beautiful pictures of the both of you holding him a couple of days ago and we look forward to new pictures everyday! I have no doubt Jonah is getting the best care. Our son, Matthew, was in the PICU for quite sometime there and the nurses and doctors are fantastic...and of course they are in NICU too! Brenner's is fantastic! Please know that we think of you and pray for your strength and for Jonah's strength each and everyday. He has become a part of our family it seems. We find ourselves pulling up this site to "check in" on him all day long!

melanie said...

Great to get a positive update and see more wonderful photos. Keep 'em comin'. We miss and love you guys!
Melanie & Jake

Kathy said...

You guys are sooo amazing! I can't wait to get home each evening to check on Jonah! :)

You are in my prayers and thoughts - constantly.

Kathy B
Hartsville SC

Niki said...

OK, while I haven't checked the site in a couple of days, I am SOOOOO happy that he is having a good day today!!! I personally LOVE the mohawk, but of course you know Jason and thanks to him I've learned to appreciate the more creative hair styles :) I was also happy to tears when I saw that you guys were able to hold him. I continue to pray for Jonah, and for peace, strength, and comfort for you and Matt. I've also been spreading the word like wildfire about Jonah and the blog. Talk to you guys soon....lots of love and prayers!!!

Maggie and Baxter McGuirt said...

You don't know me, but I'm actually friends with Lauren Thorn. She let me know about you guys and I've been following the blog. We are praying for you guys every day! Jonah looks great! We're here in Winston so please let us know if there's anything we can do for you. Lauren would be glad to give you my number.

Erin Edwards said...

He looks great! I LOVE his mohawk:) It sounds like he's doing wonderfully & I'm so excited for you that you were able to hold him again:):):) Is he out of the humidified isolette now?

Let me know if you'd like lunch on Thurday. Or, if something else would be more helpful I'll be happy to bring it by. I remember reading a lot by Ethan's bed. Is there a book you'd like me to bring by?

I also was wondering if children with EB can sweat.

Hope you have a successful feed tonight:)

Jolene said...

I just found your blog a few days ago, and I just wanted you to know that I am praying for your precious baby boy. Glad he had a good day!

Sarah said...

He looks so great! Continuing to pray.

Raising Olives said...

Congratulations on your beautiful baby. We are praying for him regularly!

Blessings,
Kimberly

Lambert Family said...

I am so happy to hear of the progress Jonah made overnight. I check daily to see what changes have occurred. I pray for you, Jonah and Matt throughout the day and have had your names placed on our temple prayer roll where you are prayed for daily as well. You are amazing and and an inspiration to me. You touch my life. Jonah is the sweetest baby and so full of strength. He was sent to you because of your strength. He is a special spirit and loved so much by our Heavenly Father. Your faith is unbelievable! I know our Heavenly Father is watching over you and Matt and Jonah each day!

Anonymous said...

What a great day that Jonah had. That feisty spirit (complimented by the mohawk) is going to help Jonah cope and kick this EB in the booty. Much love and continued prayers. Dawn M.

Anonymous said...

Jonah looks wonderful...big improvements seen over the last few photo sessions! It must be quite a challenge adjusting his pain meds (too much, Jonah is out of it; not enough, Jonah is still in pain). Praying the doctors determine the correct dose and Jonah wants to eat. Jonah is beautiful, and he is a fighter.

Gail
Annapolis, MD

amber said...

Just wanted to tell you guys that our two-year-old prays for "baby Jonah" at bedtime. We pray for him to be healed and for you guys to be comforted and strengthened! Thanks for all the updates. I look forward to reading about Jonah's progress every day!

Brandi said...

Thank God for miracles! Yay for the WBC being up! Jonah looks adorable in his little hat, and I agree...Embrace the mohawk! Jonah really is looking really good. We will continue to pray for you and your family Patrice.

Jennifer said...

Mohawks rock!! Glad to hear positve news. Keep up the good work Jonah!

j3k said...

There is nothing sweeter then seeing him in your arms!!! I am so glad you are getting a little bit of one on one contact now. He is absolutely precious.

Hearts and Hugs
Marie

Megan @ Hold it Up to the Light said...

Tiny little victories! YAY!!! We pray for you every day!

Carpenter Family said...

God Bless Jonah. Praying for you all.

sarah said...

What a beautiful little boy. You all are constantly in my thoughts.

RLR said...

Just saw the news of the 4000+ prayer warriors on Facebook. Wow - just wow! Blessings - RLR

michelle said...

Your story has been so touching. I pray for your little angel. I also pray God gives you the strength and hope each day. God is so good!!

Tiffany said...

He is just adorable!!! I love the hat! It sounds like another good day!! Hooray! I hope your first day at the hospital kind of "on your own" went well -- It is so wonderful seeing you all able to feed him and touch him and just to be close to each other. Thank you SO much for keeping all of us up to date!! I love the photos and daily updates! We continue to pray for healing for Jonah and strength and patience for you and Matt - We love you! Tiffany

Staci said...

He is looking wonderful! You all are in my prayers.

Staci
C.O.L.E Prayer Team

Baby Bird said...

He is looking better and better...love the mowhawk!
Hope you had did okay without Matt today (and that he had a great day at work).
Praying continually...along with 4,000 other faithful Christians:)
Love & Hugs, Aimee

Stephanie said...

Jonah's face looks AWESOME in those pics!!!!! Sounds like you had a good day. I hope they can get the pain meds leveled out so that he isn't in any pain at all..I know that must be trickly so hopefully they'll be able to figure out all the glitches soon. As always I'm keeping you all in my prayers!!!!!

Jennay said...

Jonah is looking great! I'm so glad to hear that things went well today. You all are in my thoughts and prayers every day and night!

kimmie said...

patrice, i stumbled upon your blog by accident and then realized (several days later) that we went to high school (and i think middle school too? did you go to wiley?) together and i knew you-- we must have had class together at some point ... my heart just broke tonight reading about Jonah and Gabe and I am praying for you! Jonah is a really beautiful little guy and I am so happy you are able to hold him and give him kisses! As a new mom to an eight-week old, I know how you just can not kiss your child enough... it never gets old! Anyway, this (pacifeeder) was something interesting that might be worth looking into, and seeing if something similar could be modified for little Jonah? www.pacifeeder.com -Just thinking about how you were saying a few days back that you "bait & switched" his paci with a bottle to get him to eat... anyway, praying for you along with so many others! ~Kimberly (Randolph) Waller (WFHS c/o 1999)

Becky said...

As I checked for blog updates tonight, my 2-1/2 year old daughter climbed up and pointed to Jonah's picture and said, "Aww, baby!" I told her that Jonah was sick and asked her if she would pray for him. Her response was, "Baby Onah!" and then kissed him on the computer screen :-) So that's a prayer for Jonah from Cece tonight! God be with all of you.

Rose said...

jonah looks a lot better! Any updates on when he is going home?

Tribulation said...

well he is looking better. hopefully, he will keep getting better and i am keeping Jonah in my prayers at all times. i cant help thinking of him everytime i look at my 19 mo old. i can understand how it feels. we almost lost our youngest after we fell off our back porch. he had a subdermal hematoma and a bleed on the brain. and a fractured skull, all at one month old. with the grace of God, and the many and fervent prayers of family and friends, he is doing well now and is developmentally on target. so keep holding on to God and He will pull Jonah through.

lrm said...

Wow! Jonah looks amazing! How wonderful that he's doing so good. We continue to pray for all of you.

Anonymous said...

We've never met, but I have been following your blog on facebook. We have been praying for your family and for Baby Jonah! We know God is the true physician and that He can heal Jonah, so that is what we are praying for! The pictures are beautiful!! Praying for you all!

Emma--Aurora, IL

Joy said...

I saw your button on another blog. I went back to your February posts and got caught up with what has happened. Please know that even more people are now praying for baby Jonah.

You're a special mother and God chose you to be the mother to this sweet little boy because He knows you'll take wonderful care of him like no one else would! It's hard to know the "WHY'S?!" sometimes but he's a lucky boy to have you.

*HUGS*

His skin looks incredible in these pictures!

The Burgess Family said...

He looks GREAT in these pictures... how exciting that his little tummy is still open and uncovered!!!! And, that it is getting full from him getting the hang of the bottle! Hope you guys have a great day tomorrow and that you get to hold him again soon!!

Christine Adams Design and Photography said...

I stumbled upon your blog last week and was very touched by your story. I admire your strength and courage. Jonah is a beautiful, amazing baby boy!

Anonymous said...

He's looking so good! I love the hat... too cute! Thank you for the updates. I am praying everyday for sweet Jonah (and his Mommy and Daddy!)

love,
Katy

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

He really does look great in those pictures today! Whatever HE, mom, dad, nurses and doctors are doing sure seems to be helping. You guys are doing such a great job dealing with all of this.

Give each other a really big, warm hug and try to get some well deserved rest. You can't be much help to Jonah if you don't take good care of yourselves! (I know, I'm a nagger.)

Grannie in Florida

Lauren said...

he can totally rock the mohawk! embrace the greasiness :)

so glad to see such a positive update. also happy to see a picture of you holding him on your lap. adorable!

i hope your first day without matt up there went okay. call me anytime you just need to chat during the day.

Laura said...

Keeping you lifted up in our prayers.

SW WI MOMMY

KristiJ said...

I just love seeing Jonah pictures..he's such a cutie! I think he looks so improved from even several days ago. They are taking great care of him there at the hospital, and I know the Great Physician is completely in charge of that! Continuing to pray for you all!

Kristi in Virginia

Susan said...

He is just so so so sweet!
I pray that good days keep a comin'. God Bless and many prayers!

Susan in Indiana

rameelin said...

Waited all day to read an update and seeing his face was such a bonus. He's growing! He looks healthy and I know he is! God is pouring out his mercies upon you all and it is evident.

I know that I don't know you, but I'm a mother as well. Your post read a little more tired today. I hope you are resting and I am praying for a rest that only God can give. You are on my heart all day every day. I hope you feel that and know how much you're all loved. You're doing great, Patrice. You're a great mom! (and Jonah feels it.) Keep chuggin along. We're all pulling you through!

Maddy said...

He's gorgeous and I will continue to pray for him and you all too. I love the good updates. I'm sure sometimes it's hard to make it all "good" but you're doing what any fantastic mommy would do...learn about EB, do your best given the situation, and just love him to pieces. Hang in there...you are both amazing and he's adorable!

dg darling said...

He's looking so much better!(To me anyway.)Praying for you daily. You are wonderful parents. Hang in there!

Genia said...

You do not know me, but I wanted to let you know I am praying for your little fighter. He is such a cutie and I glad to hear of another good day with great news.

Tara said...

We are praying for your Jonah and for you too! Great to see your pictures and that he ate today. It's so neat to see you rejoicing over these big victories in his precious life.

Daphine said...

Hello Williams family,
A friend of mine posted about baby Jonah on her blog. I came right over to catch up a bit. Please know that I will definitely be praying for Jonah's complete healing. God bless you and your hubby. I read your profile and what an inspiration you guys are to so many of us. Blessings!

Jenny said...

Still praying for you all - his little netting hat looks adorable!! He is so precious!
Hugs from Downunder
Jen

avbernat said...

I am diggin' the little doo-rag (ha!). I am elated by the great day, and I continue to pray for more days of progress and happiness. He's beyond cute and adorable. Each day I am inspired by your family, each day I see hope and love in Jonah. He's looking better and better as days go by. Holding on to only happy thoughts and hopeful prayers...

Analiza Bernat

Anonymous said...

I missed several days of reading your blog after seeing Jonah's prayer "button" on a friend's blog.
When I saw Jonah's pictures tonight I said outloud "He looks so good"! God is so good! He is a God of mercy and love and Jonah is proof of that!! I think of you all daily and continue to pray for Jonah's improvement. Love the pictures of Mommy and Daddy with Jonah! V.

Anonymous said...

Jonah is just adorable, and I love the mohawk,Thank you for sharing him with us all, what a blessing. sending prayers for a restfull night for you all.
lots of love Gina

jaime s said...

love these new pics and all the good news you shared in this post!

still praying every day for you all!

Melissa said...

Awww...guys, he gets cuter every single day! And somehow he just makes that mohawk work, LOL. I'm so glad that things seem to be a getting better...slowly, but surely. Hopefully this is the sign of lots of positive changes in the future for him. Hang in there!

Karen said...

I'm new to following your blog and was wondering what does the doctor say as to when Jonah will recover or is this something he will have for ever?
Also, I pray for him and your family daily.

Jennifer said...

I am Elisabeth B's sister. Thank you for all of your updates- Like many others, I look excitedly for the latest news on precious Jonah. His photo with your creative new hat is too cute- priceless, in fact!
With love and prayers,
Jennifer
Greensboro, NC

Kara said...

I have been following your blog for quite a few weeks. Bless you and that precious little boy of yours. He is absolutely adorable! I had never heard of EB till I was passed this link. You guys are the strongest people I have ever seen and that little boy is one trooper. Bless him. There are so many praying for you guys!

Stephanie said...

He is adorable. I think we should all grease our kids up today to celebrate all God has done!
My boys would LOVE it!! Jonah makes everything cool.
I am so thankful you are making progress... slowly but surely. One little milestone at a time.

"I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being,

so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love,

may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ,

and to know this love that surpasses knowledge–that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,

to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."
Eph 3:16-21

Jalita* said...

Thanks for the update and those pictures. He looks so precious! Praise God for good news.

Julie said...

Sounds like it was a good day!! That is wonderful. I love the pictures - the first one of him on your lap in the hat is so sweet. Praying for you today...always!

purejoy said...

patrice, you are really a valiant warrior! you write with such a positive attitude and such encouragement. i know you must sometimes feel tired and discouraged, but it rarely finds a voice on your blog!
keep pressing on, sister! there are many of us out here in this weird place we call blog-land (well, at least i call it that) and i wonder sometimes why i am spending time on here (in general terms) and then i remember stories like yours and it inspires me.
just for the fact that so many people have offered up tips that are helping the medical community. . . ummmm hello, am i the only one who thinks this is amazing??
i count it an honor to pray for you and your extended families.
bless you all!

Lorie Ferguson said...

I just read of your precious Baby Jonah! I have forwarded prayer requests to ALL of my co-workers and friends! He is a beautiful baby and looks so very strong! I hope you all can feel my prayers! God is Good!

Anonymous said...

Praise God for all the good news. How wonderful that he is beginning to take a bottle and eat. I'll be sending my prayers for that NG tube to come out soon.

--Karen from Boston

Lynnette Kraft said...

Oh baby Jonah, you have absolutely won my heart.

I'm glad hear that he seems to be doing well. He's a fighter! :)

I'll keep checking back but I just wanted to thank you for the updates and for the precious pictures of your sweet baby boy.

Lynnette

Stephanie said...

Just a reminder that we aren't your only cheerleading squad...

"Therefore, since we are surrounded by such a great cloud of witnesses,let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us."
Hebrews 12:1

If only all the saints before us could leave comments for you....
:)

Anonymous said...

I know it has only been two days since I have see you guys, but I miss you and think of you constantly. I cannot believe how much he has changed in just two days; he looks fantastic. Continually praying,
Stacey

Misty Rice-Baniewicz said...

These are sweet photos and so many good things are happening. I just noticed today that the one with his new hat on and him sleeping, has similar facial features as his sibling...... so precious.

His sibling is smiling down from heaven and saying "hang in their brother".

God Bless

The Fugate's said...

He is absolutely beautiful! I'm amazed at how much better he looks with each new picture. Thank you for keeping us all posted....I check in several times during the day to see how Jonah's doing. I am praying for Jonah, you and Matt...healing and refreshing for each of you in Jesus name.