Wednesday, March 11, 2009

jonah - wednesday, march 11th

Jonah had another rough morning. From about 10:30 to 11:30, he was screaming, thrashing around, and extremely agitated. I think it was a combination of irritation that he was being messed with, pain (they had to redress his left hand because it had come undone), and hunger. Anyway, I finally decided to hold him to feed him his bottle and to try and get him settled. While I was trying to calm him (to no avail), he ripped his bandage off his left arm and hand again - completely off. The nurse had stepped away for a moment to warm up his bottle, so I sat there crying, trying to hold his little arm to keep him from ripping more skin off his hand and keep him from causing damage to his face. I was crying, he was screaming and flailing - it was terrible. The nurse then ran to grab someone to help, and they were able to get him bandaged back up. His little hands are so sad. It literally looks like he stuck them in a fire and left them there. I have no idea how many more blisters I caused because of having to hold him like that, but I didn't really know what else to do. I felt so helpless.

On a very bright note, Grandaddy Gerry (Matt's dad) randomly showed up today. It was a great surprise, but when I came up to the desk to go in, they said, "One of the grandpas just went back to see him." WHAT??? To my knowledge NEITHER of the grandfathers were in town today. Who did they just let back there with my baby? Anyway, it was Gerry for a surprise visit, so no worries. He came to save the day. Matt is most definitely sick. He went to the doctor yesterday, and he has something viral and contagious. He stayed with his grandaddy last night, so I wouldn't get his germs. I told him he gets one more night to get over it, and then he's coming home regardless. I'll just steal some masks from the hospital or something. He's so sad to not get to see Jonah, and I'm so sad not to get to be with him. I don't feel alone. I have plenty of people who would come at the drop of a hat, but they're not Matt. I miss him terribly. His heart is breaking at having to be away.

After Jonah's freak out attack, he still only ate 15 cc's. We're still having major pain management and eating issues (the first having to do a lot with the second), and he pulled out his feeding tube yet again. Today makes the fourth time they've put it back in. I know he needs it, but they can secure it to his face, so he keeps getting mad and agitated and pulling it out. I hope the in and out is not causing damage, but who really knows what's going on in there?
They've tried methodone, morphine, and today oxycodone to try and control his pain. I'm not sure how today has gone - he's getting his bandages changed now.

Please pray...
- that Jonah's pain will be managed with the least amount of narcotic possible
- that he will eat and in the meantime, that he will not pull out the tube
- that he will continue to resist infection
- for Matt, that he will be healthy again (can we start with a smaller version miraculous healing?)

Here are some pictures from the last couple days.




After yet another hair wash attempt.This time I definitely had more success, and I must admit, I DIG the mohawk. (His hair is blonde... don't let the aquaphor deceive you.)

Grandaddy gets to hold Jonah for the first time. Nana and Granny are going to be so jealous.

Today's shout-out:

To the Deacon Basketball Friends for the great card and thoughtful gift. I don't know who you are or how to thank you, but it meant so much to us. GO DEACS!

70 comments:

Lambert Family said...

I read your blog everyday. I check it often throughout the day to see if you have posted and what has happened daily with Jonah. I am praying for you literally several times throughout my day. You are in my heart and thoughts and I admire you. Your strength is amazing. Jonah is such a precious, sweet spirit. I pray he will continue to be strong and fight infection daily. I pray for your peace of mind and comfort as well. Your family is very special and I know this sweet little boy was sent to you and Matt because the two of you are so special and have the strength and long suffering to love and nurture him as he needs to be.

fulksfam said...

His little mohawk is fantastic! He already has so much personality... and his face looks better and better every day! He is such a handsome little man, Patrice - one of the most adorable babies I have ever seen. What a blessing you have in your arms! We are praying for his daddy to get better fast so he can get back to his precious son, too.

Love you guys so much - Chris, Jessie, and Casey

Anonymous said...

Ever liftng you and your family up in prayer. What a truly 'beautiful' little guy you have there.

Denise Slocum said...

I love his hair! And just an fyi-My daughter put vaseline in her hair once and we had to mix baking soda in the water to get it out. Maybe worth asking the drs about...

We are praying for your sweet little boy. Your strength is truly inspiring.

The Slocum Family

Misty said...

I've not been following VERY long, but I just wanted to say that you did the best you could do...and you shouldn't feel guilty for that. Sometimes one of the hardest things we have to do as a mother is protect - and sometimes (unfortunately) that does hurt. Often emotionally (for a short time) and on occasion, physically. I cannot say I know how you feel as I am certainly not in the same boat, so please don't feel that I am diminshing the severity of Jonah's health and your unique circumstance...I just wanted to encourage you. My son is now enduring weekly allergy shots (2 shots each week) and I KNOW that is not as severe as your current challenge with Jonah's condition, but regardless of the situation, it is hard to choose to do something that hurts your child. Whether for minutes/hours in my situation or days with Jonah's. Please know that he is being lifted up (as are you and Matt) and God has a perfect Plan.

the McConathys said...

I do not have any personal experience with his medical condition, but was thinking about your last post. Although this is not ideal nor want we all want for him, what about giving him more pain meds to sedate him more so he is not trashing around and give his full feeds by tube, just until his little hand has a chance to heal. I know you said you want him to take all feeds by mouth and you want that tube out, but maybe that will happen when he gets a little larger and stronger. I don't know...just racking my brain to try and help. Your family is constantly in my thoughts. I am so sorry you have to go through this.

Michael said...

Hey I just wanted to drop you a note and say that we are praying for you. Our son has had extreme eczema from the time he was born. I remember one night just crying because his lips were cracked and bleeding and he was refusing to eat! Here we are 6 years later and still fighting it everyday. Here are a few thing that I have learned not sure if they will help: LOTS of lubricant even in places that look fine and I see he is wearing a new hat! All cotton clothing and blankets anything that touches his skin should be cotton that helped a lot! Also when washing his cloths don't use dryer sheets and only perfume free color free dye free detergent and liquid softener. We got a lot of help from National Jewish in Denver. I now that what he has and what my son has aren't the same but,thought I would let you know anyway We will continue to follow your story and pray for you.

Rachel said...

Williams Family,
So sorry to hear little Jonah is having a rough time with his pain management. He is such a trooper, so is his Mom and Dad! I will continue to pray for your family and that sweet baby. He is absolutely gorgeous, so cute!!! Thanks for all the updates and keep them coming. Getting my daily Jonah fix is a must!
Rachel in Indiana

kjames106 said...

Poor sweet baby. I can't imagine what you are all going through. I pray that Lord gives him miraculous healing in Jesus name. I pray that there is peace over you and your loved ones.

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

Hi Matt & Patrice,

I agree, Jonahs little face really does look so much better!

And maybe it's a good thing that he's got "attitude", even at such an early age! It shows us that he's gonna be a great little fighter (which he is clearly demonstrating daily).

I'm thinking this is a good sign!

Grannie in Florida

two and through said...

I have learned about you and your family through facebook and I'm so touched by your story. I said a very special prayer for Jonah last night and thought of him so much. I will continue to check your blog and send happy thoughts your way. God bless you and your sweet, strong baby boy!

Jennifer said...

Such a sweet baby to have to go through something like this. My prayers are with him and your family.

BeckyB. said...

Jonah is so beautiful... I know that God has big plans for this little man! I read your blog every day- with every new update- and I pray for you every time. Today I am praying for PEACE. The kind that surpasses all understanding, the peace that doesn't make sense given everything that's going on right now. The kind of peace that makes you recognize God's loving kindness in a fresh and new way. He's holding you... and He's holding Jonah, in His perfect embrace (the one that can't cause blisters).
Be still and know....
Becky

Anonymous said...

Hey Trice...I'll be by after I get off at 6. Love you!--Kat

rameelin said...

Oh he is growing!!! He looks so handsome in that second to last picture! He looks good Patrice! Healthy boy! I am praying and I know that your days seem to probably all feel the same, but know that each one is unique and each one is unfolding directly according to God's plan. He's getting better...I can just see it.
Thinking of you every. single. day.

Robin said...

He is such a beautiful baby, Patrice. My heart breaks to think of him in pain. I will keep praying, praying, praying. For Jonah, for you, and for Matt. And for the doctors/nurses involved with his care. Do you know the Specks from DC? They are friends of Peyton and Amy, too. Their little boy Bennett had major birth complications and they kept us posted on Bennett's progress via a blog as well. Bennett, who "technically" belongs to Kelly and Travis, became EVERYONE'S little boy, and I feel the same way about Jonah. He belongs to all of us who love him...but of course you will get the most intimate role in his raising. May God bless you with peace, patience, and strength.

Love,
Robin Kernodle

Anonymous said...

I found your blog thru MckMama and have been checking daily ever since! My prayers and love go to you and your family. Your family has become a part of my daily routine~I have laughed and cried with your updates and have been cheering you all on!
Thanks for sharing your journey!
Beth

Watts Family said...

Being a new mom is so hard....you will always question what you are doing but the best advice is follow your instincts. Would they allow you to bring in a cd player or ipod and play soothing music for him. My kids loved that and it always helped them calm down (and helped me calm down as well :)) We are still praying for you, Matt and Jonah. Stay strong Patrice...you are doing a great job and are a huge blessing to Jonah.
Many Blessings,
amanda

Jess said...

Those pictures are absolutely precious!!! (I know you already know that, but I can't resist reminding you how adorable your boy is!) Praying for you guys.

Sara Jo said...

That is one BEAUTIFUL baby boy! His little cheeks are so precious! We love you, are thinking of you & praying for you often.

Jill said...

Patrice,

I read this in the Message version of Colossians.....

We pray that you'll have the strength to stick it out over the long haul—not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable.

That is what I am praying for you my sweet sister. The only kind of strength that enables us to endure the unendurable.

I love you

Anonymous said...

Jonah is such a cutie pie. I'm so sorry he had such an awful day with his pain management. He is in my prayers right now to be healed and to find a solution to this so he has enough of an appetite to eat.

Much love, Karen in Boston

nancy said...

Oh I love his new hat and blanket! I am so glad they/you have covered his belly! I think he was cold! He looks so healthy in these new pics and Patrice I hate to tel Matt this, but he looks so much like you! he has got the cutest roundest face! It breaks my heart what you went through today and didn't have matt there to help out! Cry all you want to, you can even SCREAM if you want to!!!!!! All of your emotions since having him have got to come out in some way whether it be your amazing entries everyday, crying, eating, reading, talking or just snuggling and loving on your baby! Oh, and by the way we all love reading what is going on daily, but don't ever feel the pressure to have to if you are not up to it! You truly have that gift of writing though! I keep waiting for you to shout out something in Spanish, maybe that none of us can't read! That's fine too!
Just know that we are praying for you, Jonah and Matt without end. I agree with you about Matt, he has 1 more day to get it together! So glad he went to the dr.
Hang in there girl because before you know it, Jonah will be going home with you!
Are you taking care of YOU?

Love and Prayers
Nancy Lee:)

Tammy said...

I read your blog everyday all day long and you are in my prayers constantly! He is just beautiful...
Tammy

RLR said...

Patrice - Love the latest pics. He is adorable! Sorry you are having a rough go of things with Matt being sick and with Jonah's tough days of late. Praying for healing, strength (because that's part of what we moms are made of!), and the peace that passes all understanding.
Thinking of you each time I look at (or think about) my Jonah!

Brooke said...

I am struggling for words today, but just wanted you to know we're still praying and will continue to do so. Much love and many hugs...

Alisa said...

Oh Patrice! My heart breaks for you. I can't think of many things that are worse than seeing your child in pain. I'm so sorry for you and especially for sweet Jonah. I will pray they will get his pain under control so he can continue to thrive. I will pray that the Lord will continue to make you strong and that Matt will get well so he can be with you. I find so much comfort just having my husband by my side and I can tell you are the same way. We've also dealt with the "pulling the feeding tube out" thing. It is so hard! I will pray for that as well.

Shannon said...

You have an absolutely beautiful baby boy! I hate to hear that you/he had such a rough morning. Your blog is the only one I check everyday, you are so good about keeping everyone updated, despite all that you go though! Thank you for that and Jonah is so so so cute! I'm will continue to pray for you and your family!
Shannon
Avon IN

Baby Bird said...

Dear Patrice:
I was wondering if you were allowed to bring music (CD player, Ipod, MP3 player, etc) into his space? Lullabies or soft music/sounds? Just a suggestion...if you need any help with this I would gladly bring it to you.
Still praying for Matt's QUICK recovery! And your peace and comfort while you are apart! Just as Jesus spoke, "Peace, be still" to the storm when He was in the boat with the disciples you can speak peace to little Jonah's storm. HE will be your strength! HE is with you, dear Patrice!
I love you! Take care of YOU:)
Aimee

Melissa said...

I'm so sorry he had such a rough morning, and that his poor hands are looking so bad. :(

He is so gorgeous in those pictures you posted! What a beautiful boy!

Melissa :)
www.withasmile.wordpress.ocm

Craig said...

Just wanted to let you know that there are a bunch of people up here at Kim & Andrew's church that are praying for Jonah--and for all of you--every day and many times throughout the day. May our heavenly Father give you all strength and hope and every blessing. We love the Tuckers--and all of you.

In Christ,

Pastor Craig Higgins
Trinity Presbyterian Church
Rye, NY

Anonymous said...

Hi,
I hate that arm bandage came off while you were alone. I am sure that was a little scary. Jonah looks cozy in his new blankets :)

Dana Zucha

Anonymous said...

Praying here in Durham, CN

Anonymous said...

Please don't feel guilty about holding Jonah this morning. He may have done more damage to himself if you weren't holding him (he was already agitated). I pray that the doctors find the correct pain medication and the correct dosage. It must be very difficult not having Matt with you...praying that he recovers soon. Jonah does not look as swollen, and, well, he is just a beautiful baby - love the pix wearing his new hat!

Anonymous said...

your little boy is beautiful. I have been reading your blog for the last week or so and it breaks my heart what you are going thru. I pray that God will heal your little boy.

Hope said...

I'm so sorry this morning was so hard on you both. My heart aches for you. I do have faith that things will get better. You are doing an amazing job.

Desha said...

Thanks for the updae. I like getting specific things to pray for. Sounds like he was a wild man today! He is a little fighter...

Desha said...

Thanks for the updae. I like getting specific things to pray for. Sounds like he was a wild man today! He is a little fighter...

Laura said...

Those are some precious pictures. Especially the last one.

I'm sorry to hear about the rough day you've had. Praying for a more peaceful day tomorrow. I know others have said this before, but trusting your mom instincts is the best thing you can do. It seems to me that is what you are doing and that Jonah has really benefited from that.



Laura S.

Robin and Paul Cummings said...

Patrice and Matt:

You both are really strong. We all look up to you and your strength. May the Lord be with you all and his love shine down on little Jonah. God will carry you all through this and you will be stronger on the other side. Matt: Get better soon. You all are in our prayers and thoughts.

Love and prayers:

Robin and Paul Cummings

Antheum photography said...

I am so sorry to hear that you have had such rough day. I know how scary it can be to have something go wrong and no other hands to help.

We use a really soft gauze called conco conforming gauze and instead of mepitel, we use Hollister restore contact layer under mepilex and mepilex lite(our favorite). We still occasionally use aquaphor but I much prefer Derma gran b ointment. I would love to send you samples of each of them for you to have the Doctors look at and try. If you would like them send me your address to kadeetroop@yahoo.com.

Do you mind me asking what process they are using to do wound care? Maybe if some of us eb moms new what they were doing we could maybe offer a little more advice. I know that the most helpful and useful advice came from other moms, and the most damage that was done to Zack was done at the hands of well meaning doctors and nurses

We are keeping your family in our prayers.
KaDee, mom to Zack, 6rdeb

amber said...

Oh Patrice--my heart breaks for the pain your little guy must be experiencing and for you, having to see it and not being able to stop it. As a mom, that's the worst thing in the world. I am praying for you.

By the way, Jonah is absolutely ADORABLE! I love seeing him with the little hats and blanket! I hope and pray he can go home soon!

Praying hard!

Jessica said...

I read everday, several times a day waiting for updates on baby Jonah! Keeping you guys in our thoughts and prayers.

natalie said...

Patrice,

I am totally a blog stalker. I check every day and pray for you often. I just wanted to tell you how absolutely precious Jonah is!!! He is gorgeous! I'm not a huge mohawk fan, but, let me tell you, that hair is TOO MUCH!!!! I've never seen a more precious mohawk...EVER! I'm praying for Matt's quick recovery so you can be together and he can spend some quality time with his precious boy (and wife, of course!).

What a special surprise that a granddaddy got to see his grandboy today! YEAH! Praise God for that!

In Him,
Natalie
Macon, GA

Anonymous said...

Praying for you all.

Your little boy is adorable!!!!

Em
from Australia

j3k said...

Prayers for Matt's health and Jonah's pain relief and your sanity!!!! Most of all today, your sanity!!!! I know its got to be so overwhelming. I pray that things soon start to cme together and small answers turn into big miracles!

Hearts and Hugs
Marie

Anonymous said...

So sorry you guys had such a hard day. I pray that they get his meds regulated soon! I love seeing him wrapped up in his own blankets and hats...he looks so sweet in them. Sending lots of hugs and kisses your way.

Lindsey

Heather said...

Jonah is so gorgeous! Thanks for the pics. He looks a lot like you, Patrice! We continue to pray for you and Jonah and spread the word to others to pray!

LoveLladro said...

Continually praying for you, Matt and Jonah. I don't know what else to say... just that I am praying for you guys.

tiredmama said...

I'm sorry he is having so much pain. My heart breaks for him. I will pray for good pain control and a healthy appetite for Jonah. He is a lucky little man to have so many people love him. He is beautiful.

LisaShaw said...

I cried with you Patrice as I was reading your message to us and then...I prayed and rejoiced in knowing that the LORD is with you, Matt and Jonah and all is GOING to be well in Jesus Name. I am praying with so many others for your precious son.

Beth said...

I agree with another poster that maybe it is a good sign that this little guy has some spunk!! I know he needs his tubes etc, but you certainly have a little fighter on your hands!

I just have to tell you that Jonah's little face looks cuter and healthier with each picture you post! He is ADORABLE and what a BLESSING that you are able to hold him, love on him and give him kisses now!!

We will continue to pray about the medication and feeding situations and that Jonah is comfortable and that you have peace during this difficult time!!

Anonymous said...

Our prayers continue to be with you and with precious Jonah. May our dear Lord extend His healing hand to Jonah and continue to hold him gently in the palm of His hand. And may He send His angels to surround you, Matt and Jonah with comfort and peace.

Kristy said...

Patrice -

He is beautiful!! Have been reading the other comments and I think the idea of the CD player is a good one. We brought one in for Carson and it did seem to calm him down. We played Twila Paris' Bedtime Prayers. We'll keep praying for Jonah, Matt, and you. Hang in there.

Kristy

Carrie said...

Have you thought about trying out some cloth diapers? Especialy ones that are very soft like bamboo or bumgenius are suede cloth inside. I use cloth because my little one is extremly sensitive to disposables. I just thought that the soft cloth might be easier for diaper changes. I might be way off and goodness knows you don't need laundry on your mind right now!! Also, could you try a fleece shirt to protect him from getting scratched by his arm bandages? You might be able to get one (or maybe someone could make it) that ties in the back so you don't have to put it over his head. Again, I might be way off!!

Cynthia said...

I also check your blog everyday. I am praying for you often. Jonah is absolutely BEAUTIFUL! Thinking of your sweet family often...
Cyndi

Jill said...

I read your blog daily - sometimes multiple times a day! - in order to check on my Jonah. Although you don't know us and we don't know you, I'm sure that many of those following your story feel as I do - that Jonah is now part of my daily life! I love that God can use such a tiny, beautiful little reminder to cause so many to remember the power of prayer and the importance of the body of Christ. Your family is never far from my thoughts, and often in my prayers.

Tabatha said...

I make handmade items and I was wondering if I could make Jonah a blanket. It's cotton on one side but minky on the other. If your not familiar, minky is a soft fabric. I don't know if he would get to use it or not so I thought I would check first. If this is possible could you please let me know on my blog at www.minishfamily.blogspot.com. I would assume that I should send it to the PO box. If not that is fine but I would love to do this for him and for you!

Jodi said...

Thinking of you and continuing to pray for you and baby Jonah. *hugs*

Stephanie said...

I am just so sorry. I cannot imagine watching what must seem like a BAD dream and wanting to simply just hold your baby.
My heart just hurts for you and with you.
I will not stop praying for a miracle. A BIG one. I am so so sorry.
May God continue to sing over you and quiet you with His love.

Jill said...

Patrice and Matt - I didn't even notice the mohawk at first because all I could focus in on are those checks and that nose. He is beautiful.

My mom is visiting me from Winston, helping me take care of my little one who is sick with a cold. We have been reading your blog every night, and praying for each day to be better than the last for all of you.

Anonymous said...

Oh, my word......he is such a beauty!!!
I hope and pray you will have a better day tomorrow. God loves little Jonah and will continue holding him in the palm of his hands. Dont you ever forget that!! God has special plans for your family, right now it all appears to be tough, but Im trusting God will show us miraclous things in the coming days....
hang on to your faith and trust!
Heidi C.

Rebecca from Texas said...

I am just so moved by Jonah. I don't go to bed until I have checked your blog to see how he did during the day. He is gorgeous and I think he is filling out quite a lot. I think about him during the day and pray for you all. Today I was on facebook and through a friends' page I got onto a 29 yr old Australian's page who has E.B. (I'm an Aussie living in TX) He was featured on the Australian 60 minutes show. There was a doctor on that show who is doing research into E.B and I wanted to give you a link to her information in case something in her research could help Jonah. She is an American Doctor/Professor living in Sydney - Professor Dedee Murrell.

http://stgcs.med.unsw.edu.au/STGCSWeb.nsf/page/resinterestsshowperson?OpenDocument&StaffID=9600065

http://www.stgeorgemrf.com.au/about-us/scientific-advisory-committee/dedee-murrell.asp


God Bless,

Rebecca

Raising Olives said...

I think that Jonah looks a lot better today. We are praying for you and for sweet little Jonah.

Blessings,
Kimberly

Stephanie said...

He is so beautiful. I have told you before but he makes me feel so close to God. Maybe because he is so beautiful. Maybe because he is obviously set apart and definitely has angels singing all around him. Maybe because he makes me long for heaven where the suffering STOPS forever. He is such a special child.
Thank you so much for sharing him with all of us you don't even know.
He is an absolute gift to the world.
PRAYING BY BRAINS OUT.
Steph in TN

Anonymous said...

Your Jonah is so sweet. I feel so bad that he is in pain. It has to be so hard to see him like this. I pray for god to heal him. I want the best for your family you have been through so much all ready. I hope the test result come back soon and that he has the mild form and he can out grow this. God Bless you.

Anonymous said...

Hi Patrice, so sorry things were so crazy , when I came by yesterday, but I did enjoy sitting and talking with your mom, sister, sister in-law and her kids, you are blessed to have such a strong family unit. ( I hope supper was ok it was one of those crazy days at work )Thanks for being so faitful with your post, and sharing that adorable little man baby with us all,. lots of prayers for healing and peace
Love Ya Gina

merrymom said...

Dearest Patrice and Matt,
All of you have been in my prayers for many days. Jonah is just beautiful and has his mother's pretty mouth. He is a strong little fellow and God has given him a great spirit. It is such a blessing that you are now holding him. I will continue to be praying and include your specific requests.
I will inform the rest of our family. Please take care of yourself, Patrice, so you and Matt may make the best decisions for Jonah.
God's love to all of you.
Merry Armstrong Lowe

Buffy said...

Patrice he is so adorable! I just love the pictures. And love his baby cheeks!

Vonda said...

I just found your blog through someone else's and I was literally drawn to read Jonah's story. My heart breaks for y'all right now, but I am astounded at your incredible faith and the strength I know God is giving you right now through all of this. I have prayed for Jonah over and over again today and I will continue to lift your precious baby boy up to our Heavenly Father. I wept last night when I read all the way back to your Feb. 27 post. Patrice, may the God of comfort and Healing wrap you in His loving arms right this very minute and may you and Matt feel such a peace. I am also praying that God will touch little Jonah's body and heal your sweet boy.

Vonda Livingston
San Antonio, TX