Tuesday, March 10, 2009

jonah - tuesday, march 10th

Jonah has had a rough morning this morning. He was real agitated and upset for most of the morning. He kept pooping his diaper, and it hurts him when we change it, so that kept him pretty upset. It breaks my heart to hear him cry like he does… It’s definitely an “I’m in pain” cry.

At his 8:00 feeding, he took 42 of 50 cc’s. It took me an hour to feed him with several diaper changes and interruptions in between. He was very awake and alert…but very upset most of the time. One of those interruptions was him pulling his feeding tube out. They had to put it back in. It's the second time it's been pulled out, and the third time he's had it put in. What is it doing to his little esophagus???

Some more Duoderm adhesive got put on his face again the other night when fixing his tube. He now has a big sign on his bed: NO tape, NO Duoderm, NO Tegaderm, NO adhesive AT ALL! There's only one little piece left (one big piece came off on its own today, leaving a big red raw spot on his cheek), and we're waiting on some special adhesive remover (Thanks, Janel) to arrive in the mail. I may start applying some warm water and baby oil to it (per Janel's suggestion) in the mean time to soften it up.

Nothing really new to report from rounds. They are trying to get his pain meds worked out now that they have to give them orally (since he pulled out his PICC line). So far (yesterday and today), he's been in a lot of pain during his dressing changes. It's hard finding the right combination of oral drugs to give him so he doesn't hurt, without knocking him completely out where he won't eat for 12 hours. We've put in a call to Geri with DebRA for suggestions. Holla at your girl, Geri! :) I really don't want that PICC line to have to go back in. Jonah is so strong and thrashes around so much, that I know it's hard on his skin, and they have a hard time bandaging that arm and hand because of it. His right arm and hand and his left knee are still in really bad shape. If you could see what's under those bandages, it would break your heart. It breaks mine. He's still developing new blisters everyday. He always seems to have some new ones on his arms and today, he has two really big raw spots on his belly from rubbing his bandaged arms and legs against his skin. I wish there was some kind of shirt we could put on him that would protect his belly from his arms and legs without the shirt itself causing blisters. With new blisters and lesions constantly popping up, I don't know at what point you are considered "healed" enough to go home or "safe" from getting an infection. It doesn't seem you are really EVER safe or healed from this. I avoid doing research about the different types, for fear that I'll choose the worst one and focus on it. I just focus on the caring for him research until we have a diagnosis. There's such a wide spectrum as far as severity. I don't mind the work it will take. I don't mind that our whole life has changed. Everything is worth it for my Jonah. I just want him to be able to come home. I want him to live a long, long life. I don't want to have to say goodbye to another child.

I'm so busy here. I hang out with Jonah back in the NICU the majority of the time. I have a nice window seat where I can always be by his side. Anything I can do, the nurses let me do, so my life is a lot of aquaphoring (yes, I just verbed that), diaper changing, bottle feeding, pumping, paci holding (that boy loves him some paci), head rubbing, holding, and loving. It's basically what I'd be doing with him if we were at home, but a much more complicated version that requires eight hands instead of two. Although I've loved having lots of visitors, it's actually getting to the point now that I find I leave them waiting in the waiting room for long periods of time while I go mommy my baby. I guess that's the way it should be though. So anyway, if you plan on visiting, it may be good to get in touch with me first so we can work out a good time where I can actually visit with you during reporting times (shift changes) or dressing changes. Keep the comments, voicemails, emails, prayers, and love coming though. I still have time for ALL of that.

Specific prayer requests:

- that they will figure out the best way to manage his pain orally without the use of a PICC line
- that the meds will not knock him out so that he won't eat
- that he will improve on eating so we can get that feeding tube out
- that Jonah will be healed (or at least he'll have the form that is mild and will let him live a long, full life)
- for Matt who thinks he's getting sick. We both need him here with us.

Thanks so much for your love, prayers and kind words. They help sustain us.

I'll try to post a couple pics later on.

Going back to see him now... my favorite.

77 comments:

Anonymous said...

Patrice, we will continue to pray that Jonah's pain is managed, he eats like the rockstar that he is and that Matt is not sick. We pray often. And I'd like to add one more prayer to the list. That you take care of yourself. Jonah needs you healthy, fed, bathed, well-rested, etc. :-)

On a much lighter note, I must say I'm so impressed, I've never seen a typo in your entries (not that I'm looking super hard). For as much as you are going through, you have wonderful poise and grammar. As always, thank you for sharing. Continuing to pray. Dawn M.

Kelly said...

I can't stop thinking about you and your family! Saying prayers around the clock! when do they think they'll have a diagnosis? HUGS!

Julie said...

Praying for Jonah...for his pain to be mananged, for him to keep eating, for his diagnosis. I think about you guys so much throughout the day. And praying for your mommy's heart!

"Hope is what happens as long as we breathe." Just keep breathing....

Sara said...

I hate to tell you this, but you may come to the point that no amount of pain medication will take away all the pain. Babies in general HATE to be messed with. That might be part of the reason he gets so upset. Also he could be cold. He is use to having parts of his body wrapped 24/7, so when you up-wrap them, he probably gets cold, which causes him to get upset. Also, as wounds heal, they tend to itch, so that could also be causing his rough days. I have seen babies on really strong pain medication and they still scream all the way through a dressing change, which can sometimes mean it isn't pain that is bothering him.

You need to ask the doctors (if you haven't already) what needs to happen for Jonah to be able to go home. The hospital is the worst place for an EB baby. He is less likely to get an infection at home than in the hospital. He can go home with the NG tube if needed. You can have a nurse come out everyday to weight him, help with wound care, etc... Some with EB have nursing care at home 24/7.

You can also use aquaphor to help get the tape off his face.

See if you can get some tubifast, wash it at home, run it through the dryer and then you can use it to make a little shirt or just to put it around his belly. In some cases, tubifast is the ONLY thing some with EB can wear, their skin is that sensitive.

Anonymous said...

I'm so sorry about Jonah. I've been following for several days and it's just heartbreaking. I know how scary the NICU is when you don't know what exactly is going to happen, as you wait for a diagnosis to come in.

I know nothing about EB or the challenges that come with it. But my son has a g-tube and neutropenia, and we've struggled with finding a dressing to help the stoma heal - and healing is so important to avoid infection that he can't fight. We came across a foam dressing called Polymem - it's non-adhesive, anti-bacterial, and has other a few other things in it (I think glycerin is one) to aid in the healing of open wounds. It's really helped us. I have no idea if you can use it, but I thought I would offer the name of the product out there, to see if it could be used to help some of the worst spots heal up faster.

I hope he starts eating soon so you can get rid of the NG tube. Those are awful, and even with babies who can be taped up, it's really hard to keep them in place.

I really do wish for a happy ending to this for you - a healthy baby to take home and love forever.

Robin said...

Defitely praying for you all...our hearts are aching on your behalf. Our kids talk about Baby Jonah and mention him in our prayers often. We love y'all and are asking that God continue to guide you and bless you with peace.

Love,
The Kernodles

rameelin said...

I'm praying for healing!
God is a God who wants us to be specific and I trust that He is a God who can give us exactly what we ask for. That's what His word promises! Therefore, we are praying healing over this little boy every day. He is healed, Patrice. I am claiming that with my mouth and lips that glorify our King of Kings! He is healed!

I am also praying for Matt. I am sure that the stress and trial of the last few days are going to take their toll but I'm praying that you would both find physical strength to keep on movin. Our family is praying! We see victory because the Lord says it is ours!

You're a great mommy. I'm just so proud of you.

Watts Family said...

It breaks my heart to hear he is in pain. Stay strong for him Patrice!! I wonder if they could make some sort of contraption that lays over his belly but doesn't touch it so he doesnt hurt himself while he thrashes around. I will talk to my Athletic Trainer about what he thinks. They could pick it up everytime he needed his dressings changed and it could be made of soft material so it won't hurt him if he bumps it with his hands. I will let you know what I find out from my trainer. Many prayers coming your way!

Many Blessings,
Amanda

Amanda said...

Hi Williams Family
I'm praying for Jonah's complete healing.
The Bible says that Jesus laid his hands on the sick & they were healed. The Bible also says that Jesus is the same yesterday, today & tomorrow - therefore I believe that he can healed Jonah.
I'm also praying that you & Matt will have peace that passes understanding.

James 1:5 & Ps 37:4

God bless & ♥
Amanda from the UK

Amy T said...

I can't believe how big he's getting!!! :)

Matt, feel better!

Love you guys!
<3
Amy Todd

Anonymous said...

I did notice someone else mentioned it but Aquaphor works wonders for EB kids. Someone put duoderm on our son and we used aquaphor to gently work it up witout causing any harm to his skin. Just keep rubbing aquaphor on it and it will eventually start to lift off, then you just keep putting aquaphor under the sticky parts coming up. We pray for Jonah a lot daily. We were in the NICU for 3 weeks with our first. They had never seen it before at our hospital but they wanted him to eat all feedings from a bottle before they would let him go home. I read the Bible and praying during the day. I also found that to give me the strength and endurance while I was there when my husband was working. I will leave you with a few verses that helped me tremendously during our trials.

I lift up my eyes to the hills- shere does my help come from? My help comes from the Lord, the Maker of heaven and earth.
Psalm 121:1-2

I can do everything through him who gives me strength.
Phillippians 4:13

Praying for your family,
Tashia Uken
South Dakota

Jennifer said...

Patrice,
We had/have the same issues with our daughter Layla on her arms rubbing on her sides. What we have found that really works well is taking a piece of Mepilex Transfer (or Lite - you will probably need the 8 x 20 size if you can get it) and creating a protection pad for her nipples and sides. We put a little vaseline on her nipples and on the sore spots on her sides and cover her up with the pad. It acts as a shirt in a way. To best illustrate this you can go to the attached website and see the photos. It is the 3rd photo of her laying on her dressing change table.

http://www.caringbridge.org/visit/layla

Hope this helps!
Jennifer
Wisconsin

Doug and Liz said...

My friends from college all got together last weekend and we prayed for Jonah. One of my friends teaches girls' Bible at a Christian school in Lebanon TN and she said that all of her classes are praying for you all and ask for updates about Jonah everyday :)

Wendy said...

No words come to mind. I will pray as soon as I get off the computer. My heart is heavy just thinking of what you are going through. It definately lessens my trials which have been weighing me and my family down. May peace be with you today and in the coming days. Take care of yourself and be strong. Our Father will take care of you all, just continue to call on him.

Will be praying for victory and peace and healing. God Bless.

Katherine said...

M&P, As always, I'm so encouraged by the comments that have been left here. I read each and every one, just like you do, soaking it all in. I think the entire family does that! It's so encouraging to hear from the families who have gone through the same thing, as well as just read that people all over the world are praying for Jonah. He is bringing cultures together, for real!

nancygrayce said...

I'm praying for you! My DIL has EB simplex...it is on her feet mostly....but she has managed it well and I pray that you will be able to manage Jonah's! I'm praying God's miraculous touch on him and on you and your husband!

Baby Bird said...

Dear Patrice:
We are praying for Matt that will feel better soon and he is not getting sick...and for all your concerns for little Jonah's pain and meds and feeding!
I had thought about coming up to see you but I will refrain for now since you seem to be quite busy. I will keep scrapbooking and checking in on the blog AND PRAYING!
Peace and continued health to you all! Love, Aimee

Anonymous said...

In case you see this...my mom and I will both be by around 6. I love you! --Kat

Hilary said...

Still praying for Johah, for his pain management, comfort, peace- for healing.. Praying for you as well and praying that Matt isn't sick.. I think about you all several times a day and lift you up in prayer when I do!!
Praying is South Carolina..
Hilary

Anonymous said...

For any stomach problems, I recommend Prevacid.

My daughter has been on Prevacid since she was 6 weeks old, she is now over 9 months. IT works well. it will not drug up kids and her tummy feels better.

I am praying that you will not lose another child. My daughter has had some medical problems and it does get easier.

She is a strong stubborn child because of it.

Hope said...

Poor sweet Jonah.
I'm praying for him. I'm so sorry your baby is hurting. It's breaks my heart.

Angel said...

Still thinking of you and praying. Traci

Alisa said...

Patrice, first I just have to say that Jonah just gets cuter every day.:) He is such a little stud.:) I'm glad to hear that you are taking time to enjoy the "Mommy moments". I know it isn't the same and you'd rather be doing it at home but it sounds like you totally get that you don't want to miss out on this precious newborn time. I felt the same way when my Adeline was in the NICU. I'm glad to hear that the nurses are being so sweet to your family. We had the same experience. I will pray for your sweet boy, that he will rest today and not be in pain and that he will thrive and eat well. I will also pray that Matt will get well VERY quickly. I know that even a day or two without your husband by your side is so difficult. Hang in there, Little Mama! You are doing great.:)

Stephanie said...

"Return to the stronghold, You prisoners of hope. Even today I declare That I will restore double to you."

Zech 9:12

Praying that you will be held PRISONER BY HOPE. This verse has encouraged me so much in the past.
That we don't just have hope, HOPE HAS US--- HE has us. We cannot escape hope. Because of Christ, we are prisoners.

And, we can never run out because there is more stored up specifically for us in heaven.

"the faith and love that spring from the hope that is stored up for you in heaven and that you have already heard about in the word of truth, the gospel" Col 1:5

May He take you captive by hope and pour out the hope he has stored for you in heaven.

Praying. Hoping. Believing. Knowing God is good.
You are such an inspiration to me and Jonah, a world changer for Jesus.

Sassypants Wifey said...

Jonah will be in our prayers. He has a strong momma by his side.

LisaShaw said...

Precious Patrice, I cont to pray for you, Matt and Jonah. I have lifted the specific prayer requests before the Lord.

We all love you all.

Anonymous said...

Sorry to hear that Jonah had a rough morning, but it sounds like he was hungry, and it is a positive sign that he ate 42 cc! Praying that he won't need the feeding tube much longer (sounds like Jonah wants it gone!). You are a wonderful mommy. Jonah is just so adorable!

Gail
Annapolis, MD

GREG and JANICE said...

Hi Patrice,
You don't know me, but a friend of mine, Nellie, met your brother on a church campaign a year or so ago (or something like that). I just wanted to let you know that I am praying for you and your family daily. Our small group at church is also praying for you every week. Thanks for keeping us posted on Jonah's progress.
Janice

Channe said...

still praying here in Louisiana,
the Karaba family

Anonymous said...

Patrice, it breaks my heart to hear of Jonah's pain. I often pray for him, you and Matt. Right now, I pray that God's ministering angels are all around Jonah and you.

Elizabeth

Anonymous said...

Hi,
I am definitely praying for Jonah. I'm glad that he was able to drink more of his bottle! I remember that when my son was in the hospital, the tubular gauze on his arms did hurt his face repeatedly, so when we got home we put little tube socks on his arms so they would be smooth and not rough. Then his face was able to heal. Maybe if they would let you do something like that it might help.

About the morphine and him acting like he does, my son was also on morphine while in the hospital and when he first came home. We had a nurse come at the time to help us with bandages (she was mainly the entertainer and checked wounds). She had a book of medicines and their side effects and looked up morphine and it said something about it can cause irritablity. So gradually we reduced the morphine to almost none. We only gave it before bandage changes and a different nurse came and didn't realize what we had done. He was "wild" again during the bandage change and we asked her how much she had given him and she gave him the larger amount that we were getting away from. I looked on the internet and I cannot find that as a side effect, but that was what was in her book and it seemed to be true. I know it will affect different people in different ways.

For us to go home I think he had to be able to drink his bottles (he didn't finish them, he was a "snacker") and we had to be able to change his bandages. They wanted him to drink 3 oz. every 3 hours, but I begged them to let me just give him the bottle when I thought he was hungry, no matter how short of time had passed. He kept that up however when we got home!! We had to get up many times during the night!

Dana Zucha

Anonymous said...

I am not sure if anyone has mentioned the material dry silk. We had some sent to us from someone in Utah. It is ok for EB kids. They sent us 2 robes and that is what my MIL made diapers out of. It does not stick to their skin. I could send you the robes if you would like to try them. You could check your area but we couldn't find any in South Dakota so she sent us more for the diapers. We are still praying.
Tashia Uken

amber said...

Patrice--your attitude is so encouraging! We will be praying for Matt that he isn't sick or that he gets better SUPER fast. We will be praying for God to sustain you if you have to be apart. As always, praying for Jonah too!

Storybook Woods said...

Dear Patrice, I am here for my daily check of prayer requests. so keep them coming. I want to be able to pray specifically. Hang in there sweetie. Clarice

Melissa said...

Patrice...a few things I want to point out:

1) No one, absolutely NO ONE, could ever get upset with you if they had to wait in the wait area because you were in with your sick child. You are exactly where God wants you to be, doing exactly what you are intended to do! Do not feel guilty. I'd love to come up and give you a hug, but I know what it's like to have one so sick and need to be by their side as much as humanly possible, so for now I will stick with giving you guys cyber-hugs.

2) I know you don't want to think about the different types and degrees of this disease, but let me tell you that God's diagnosis is sometimes different than what the doctors say. Okay, I probably didn't word that to where it made enough sense, but here's what I mean. The condition that Bryson was born with has three types...the first type has mild characteristics, normal intelligence, and a regular life span...the second type features profound physical differences, typically severe mental retardation, and death in early childhood...the third type is so severe that they rarely survive to birth, much less past a few days or a week. Bryson was born with Type 2. Technically, he should have profound mental retardation and should not have survived past a few years old. God said otherwise....Bryson is now 16 years old...he has had 30 operations and may need more at some point, and yes, he does look different than other kids his age. BUT, he is ALIVE, and he is pretty much a normal teenager. Yes, he has some physical limitations, and his immune system is pretty weak, causing him to catch every single bug/germ that comes along. But, he does not have the mental retardation that he technically 'should' have, and he has lived. And he does pretty much whatever he wants...his limitations are mild. If you go by the medical diagnosis, none of these things should be. But God's diagnosis was different. What I'm saying is, even if you get the 'worst' news, don't dwell on it...never give up, and never let your son give up.

3) I feel so bad about Matt not getting to be there...when I saw his face this afternoon, I knew something was up. I'm so sorry that he can't be there with you guys right now, but he will be well soon and back there. (Hey Matt...stay away from all the sickies at work!)

Hang in there, and know that we're all here to support you guys....

Love, Melissa

Erin Edwards said...

I'm sorry you are having a rough day. We'll keep you all in our thoughts. Hang in there:) Know that if you need anything just let me know. I shared my phone number with your friend on babycenter- don't hesitate to let me know.

You'll know when it's time to bring Jonah home. Learn the routine. Take over for the nurses as much as possible. I'd have your derm teach you how to do the dressing changes too if that is something you will be doing at home. Get his feedings more reliable. Once you feel comfortable & everything is as stable as it's going to get, get him home. (IMHO) Brenner's was absolutely reasonable about when we took Ethan home (even though I pushed for it before it really was time).

Ethan wants me to send a hello to Jonah:) He's ready to have him play with him:) He's so excited about another child close-by with special skin:)

Melissa said...

Oh...one other thing I've been meaning to bring up...what gloves do the nurses/doctors wear when handling Jonah? If they wear latex, ask about switching to vinyl. Bryson's worst allergy is an allergy to latex - he will actually start going into anaphylactic shock if touched by it - and we were told it was due to his constant exposure to latex in the hospital over the years. It seems that the more a child with medical issues is exposed to latex the more likely they are to develop an allergy to it. Just a thought...

The Hixson Family said...

Jonah sounds like such a fighter (pulling out his feeding tube and lines). You guys are in my prayers.

God Bless,
Faith

chas-kitty said...

Hi,
My name is Chastity. I have Recessive Dystrophic EB - a very severe case. I am 25 years old and would love to share some of my wisdom from over the years. Please if you can call me as it's easier for me than typing. 210-255-1825. Or if that's not possible you can e-mail me. chastity@inbox.com If it's a matter of cost I can call you instead, just e-mail me your number.

Much Love and Positive Thoughts for You & Yours,
Chastity

Stacy said...

Patrice, I found your blog through Kelly's Korner, and ever since, I've been praying faithfully for your sweet, beautiful, Johah!!

Believe it or not, but your strength and your faith are truly inspiring. Your entry today, especially, was very touching. Despite the circumstances, your positive attitude is, I'm sure, admired by many!

I keep praying for complete healing. I believe in miracles!

God bless,
Stacy

Anonymous said...

Patrice, I can't begin to fathom what you are going through or all that Jonah is having to adore. I can say that, from reading your blog, God has chosen a good mother to love and care for Jonah. As I said, I can't begin to comprehend what you're dealing with, but hang in there. You have so many people praying for Jonah, his mom and dad, the medical team, and all those involved.

Anonymous said...

You are a best MOM ever!!!! Jonah is a lucky little boy and I will keep him in my thoughts and prayers everyday. Stay strong girl!

Anonymous said...

Sorry, in my previous post above I meant to say "what Jonah has to endure

Desha said...

Patrice,
Just wanted to let you know that you are doing SUCH a good job with Jonah. I know it must bring him so much comfort to have you near him and hear your voice, and I am really proud of the way you are doing all you can for him and making sure others are doing the best for him as well. Still praying for your little man and that God would heal Matt so he can be with you. I am sure it is hard for Matt to be away from his little family.

Karla said...

Hi Patrice,

I have been following your blog for a few days now - I found out about your story from a friend. I am a member of the Facebook prayer group. I just want you to know that you are truly an inspiration to me. I just had a baby boy in January and I feel inspired to be a great mom like you. I know that Jonah is super lucky to have the parents he has. He definitely sounds like a fighter. Don't ever give up hope - keep your head up and keep doing what you're doing. You are fabulous.

All things are possible through Christ. I pray for your family every day and look forward to updates on your precious Jonah.

Sending love your way,

Karla
Nashville, TN

Emily's Blog said...

I'm new to posting here, but might have an idea or two about pain meds.
I currently am in constant pain 24/7, and see a pain management Dr. regularly.
I don't know if ya'll have tried these meds or not, but they worked some for me: Oxyfast(it is liquid), Dilaulid (come in liquid), and morphine.
Also, about the PICC line, have you thought about an arterial line or a cathater in his chest?
As for the pulling out of the feeding tube, there is always the options of a g-tube(directly into the stomach) or j-tube(directly into the small intestine)(I have this and it's has worked perfectly).

I know that was probably a bit more than you needed, but I thought it might help him.

I hope Matt is not getting sick, maybe it's just allergies. I'm still praying for you and your family.

Michelle said...

I happened to see your page on a friend's facebook. Ever since I read it this morning, I have been thinking about you and your little one. I know I don't know you, but I want you to know that prayers are spreading like wild fire for your little Jonah! We serve a BIG God! Praying that he continues to give you and Matt strength and comfort!

brightleigh said...

I am really sorry Matt is sick...I hope he gets better soon because I know you and Jonah need him. Patrice--go Mommy girl! Anyone in the lobby should understand and guilt should not even enter your mind. You have more important priorities right now and entertaining visitors is not on that list! My mom wanted to me to be sure to tell you that she had not desserted you guys. Her hard drive has died and she is miserable. I have been calling her when I get home to read each new post to her. Stay strong girlie and kiss Jonah for me. Continuing to pray...

Much love,
Leigh

RLR said...

Patrice - about the visitors - certainly no one minds a wait (I was set to wait until you were done visiting with Jonah!). We all know that he's the first priority! Take care of yourselves. Praying, praying, praying!

Shasta said...

I am praying so hard for Baby Jonah & you and your husband. You are a strong, wonderful mother and he is so lucky to have you and all of these wonderful people praying for him.

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

Dear Patrice,

I'm afraid this is going to be a roller coaster ride for you guys for a while yet. Take things just one step at a time - take a deep breath - and then take another step.

You and Matt have been doing such a great job. I have no doubt that the positive progress will continue!

And, as many others have said - be sure to take care of yourselves, too!

Grannie in Florida

Cristi said...

Thanks for your daily updates. I am continuing to pray for Gods healing for Jonah. In Jesus Name!

Penny said...

Prayers for Jonah to be more comfortable.... praying that he can be able to have options that reduce all the extra friction.

Also praying for Matt, this is not a time when this special family should be apart.

Enjoy those looks out the window as spring pops out.

Penny said...

Prayers for Jonah to be more comfortable.... praying that he can be able to have options that reduce all the extra friction.

Also praying for Matt, this is not a time when this special family should be apart.

Enjoy those looks out the window as spring pops out.

Anonymous said...

Your entire family and your beautiful baby boy are constantly in my prayers. My son was in the NICU for a few weeks (felt like an eternity) and we had trouble keeping his feeding tube in. I cried every time he pulled it out (I think harder than he did) so my heart aches for you! You sound like an amazing mom who is so brave. Stay strong you all are loved more than you know :o)

K said...

Can a topical pain killer be used on the spots that hurt him the most?

I wonder if some sort of shirt can be made using a special wicking sports lycra fabric without putting any elastic or hems at the edges, something snug enough on his skin not to wrinkle, but loose enough not to bind up or rub...

Perhaps some sort of belly sleeve, like a tube top, with a single seam on the outside done with a fine stitch...

I'm a pattern drafter and I specialize in baby clothing. If there are any moms out there who have experience with certain fibers over others for their kids with this condition, please email me.

Tara said...

You are a wonderful mommy and I too am a follower of your blog. I pray for you everyday, never have I prayed so much for someone with tears flowing. God is working on my heart and I'm so glad we have a savior who can move mountains and will be our everylasting joy.

I too am praying for you and Matt's health as well. Your precious little man needs you well. Much love from Iowa!

K said...

Can a topical pain killer be used on the spots that hurt him the most?

I wonder if some sort of shirt can be made using a special wicking sports lycra fabric without putting any elastic or hems at the edges, something snug enough on his skin not to wrinkle, but loose enough not to bind up or rub...

Perhaps some sort of belly sleeve, like a tube top, with a single seam on the outside done with a fine stitch...

I'm a pattern drafter and I specialize in baby clothing. If there are any moms out there who have experience with certain fibers over others for their kids with this condition, please email me.

avbernat said...

I'm so sorry Jonah had such an awful morning. I know that this must be so difficult for you and Matt to see you precious little baby suffer. In time, he will be healed, I believe.. I have to believe. He's grown a little niche in my heart. My constant prayers and thoughts are with you.

Hoping Matt is doing okay. I had strep throat last week and I REALLY REALLY HOPE that he doesn't get it (it's been going around). Zicam! Zicam! Zicam!!! It works wonders for common colds and sore throats! Coming from a mom of three boys I don't have much time to get sick either.

Lots of love and butterfly kisses to your precious, lovable, wonderful, healable, kissable, baby Jonah!

Jennifer McGregor said...

Still praying for your sweet little boy!

Misty Rice-Baniewicz said...

Bless his little heart, soul and body.... I feel pain just thinking of the little guy going through all of that. i hate hearing this. I am so sorry.

I wish I had better words to say, or some super hero magic to make it all go away....

I really just want to pick up the precious boy and kiss him from head to toe and make all those boo-boos feel better, get all those tubes off of him and let him just one good nap in his bare birthday suit with no touching him.

I can't imagine how annoyed he must feel and so confused by all the pain and poking and pulling...

Hang in there mommy... you are doing all that YOU can do. LOVE HIM LIKE JESUS!!!!

Praying for healing to his little body, praying that God chooses to heal him in 'our' way and let him live a long life here with you..... but TRUST 'HIS' way which ever that may be...

Praying for Gods will to this situation. Answers! Healing! And no more pain.

God Bless

Krus Family said...

Have been following your blogg for several days, almost since he was born. It's so hard watching your own kids in pain and suffering. I am praying for himdaily and hopeing that the Lords will be done, hopefully meaning a miracle and a happy and healthy life. Take care of yourself and love each other, it's the best medicin for everbody. Kristin

Mindy said...

Everyone understands. At the congregation we worship with they have a "babes in arms" class. For the first year the moms and babies go to class together and we learn about "growing kids God's way." Anyway, one of the things that the teacher always says is to remember that the children are your "Kingdom Issue" right now. Don't ever feel bad if you can't do it all and please all. I think that applies to you, especially, right now. Jonah is your Kingdom Issue. You take care of him and be with him all you can!!

We are still praying.

Anonymous said...

Good morning Patrice, I feel so compelled to share with you today. I began reading your blog only a week or so ago, but your family is constantly in my thoughts and prayers.

I wanted to let you know that God is using your precious little baby to work wonders in hardened hearts. Those who haven't cried out to Him in months, years, are searching for and petitioning to Him now on your behalf, so moved by your story and your trust, faith and hope.

2 Cor 4:17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

Thank you for sharing.

libby @ ninesandquines said...

Praying for you, your family, and Jonah....think of him and pray for him often during the day....

Cathie said...

Lord, please heal Matt - don't allow illness to slow him down or keep him away from his family who needs him so much. Lord you, and only you know how much this family can take, and I claim your promise that you will never give us more than we can take. I pray your comfort and strength and healing.

I pray for Jonah's little body - I pray healing. And in the mean time - I pray that he will be in as little pain as possible.

I pray for Patrice as she longs for her son to live, for her son to be well, for him not to be in pain.
And may they all continue to be a living testimony to YOU! That even as they face great adversity, they will continue to "praise You in the storm.."

Anonymous said...

Patrice, you don't know me, but I am watching your blog every day and keeping all of you in my prayers.

Kathy said...

You are such an inspiration. Our family is praying for your beautiful son and your entire family. I only wish we were able to help you in some other way as well.

Jenn H. said...

I didn't browse this site too thoroughly and I really have no idea what would benefit you in terms of information, but came across the link and article from a local newspaper today and thought it was ironic as I just starting blog-stalking you about 2 weeks ago and thought I'd pass it along.

I'm sure too much info couldn't hurt and hopefully you can find something within the site to use!

http://www.debra.org/

The link came from this article:

http://registerherald.com/main.asp?SectionID=4&SubSectionID=4&ArticleID=126811&TM=39159.89

michelle said...

I think of you and your sweet baby often throughout the day and say prayers all day for you. I pray God will heal your sweet baby and give you and your husband strength each day. Again, God is so good!!

kidjuggler said...

Praying for Jonah!
I have snagged your button for my blog in hopes of recruiting more prayer warriors!

LucieP said...

Jonah is beautiful.
This is my first visit to your blog.
You are being an amazing parent to him!!! I think that's a great idea not to go out and google as much info as you can but instead work based on Jonah's specific needs and conditions.
I am so happy you are blogging about it and receiving advice from readers.
I will pray and continue to pray for you and your family.

Jon and Andrea Hauser said...

Hi Patrice, first of all - if anyone was ever deemed, "Super Mom", you are her! Hang in there, someone else mentioned that you need to eat, sleep and take care of yourself too - Jonah needs his Super Mommy - make sure you rest up and eat well - so that you have the energy to take care of him and that you resist any "bugs" floating around.

Also, not sure it makes you feel any better, but seeing others comments about babies not liking to be messed with is true. I remember when our now 7 month old was just a few weeks old - she hated to have her diaper changed - every time she would get so mad, her cry sounded like a cat fight! And I know it didn't hurt her or irritate her skin. Hopefully in a couple more weeks, he will not get quite as upset when he gets his diaper changed.

We're still praying hard and you all are always on our minds - whether we post a comment or not.

Lots of love and hugs,
Jon and Andrea Hauser

Anonymous said...

caringbridge.org/visit/kohenpfeiffer
This is another baby with EB. Praying for all of you.

Lisa Owens said...

Matt and Patrice, Brenna showed me the blog last night and after reading so much today, I felt compelled to tell you how proud and inspired I am by you. You have touched so many people in your young lives and just look at how many Jonah has touched in such a short time! What a beautiful boy! We will share the blog info with COC-Winterville--they've been praying for you all too. Hold on tight to each other and to your faith. Just remember that "all things are possible through Him who strengthens me". Much love and prayers from the "Owens fam"

Anonymous said...

I found your page on a friend blog and continue to read this everyday. I am very touched by this story it brings tears to my eyes every time I read it. I am praying for your little fighter. Having a child is something I hope for because it is the most precious gift a person could have. I hope you have year after year to enjoy your precious gift, he is very sweet.

Becky
Minnesota

Anonymous said...

My mom has severe eczema on her hands at times which results in blistering and redness. She is sensitive to any type of plastic. She has read your blog and wanted to share this...whenever I have surgery they have to be careful to not have anything plastic touching my skin. When the eczema returns, I use the medicine and then either leave my skin exposed...so there is nothing touching the redness and blistering or I use Flexible Fabric Band Aids...for some reason I can tolerate Band Aid brand Flexible Fabric band aids.
However, I know that when I apply gauze directly onto my skin to cover the medicine, the pain from the pressure of the scratchy gauze is almost intolerable. It is so scratchy that it felt like I was being burned. Because Jonah can not have anything adhesive on his arms or hands please suggest that they try using the nonstick pads which are like the middle part of the Flexible Fabric Band Aid...under the gauze - to avoid the gauze irritating the sore skin on Jonah's arms and hands.
The nonstick pads can be purchased separately in larger sizes...(my skin is not irritated by these)

Just a suggestion but it worked for her. We are praying for you and your family.