Sunday, March 8, 2009

jonah - sunday, march 8th

This will be a short post.

Jonah is holding steady today with no real changes. I did attempt to wash his hair, but it's so greased up with aquaphor, it's still pretty nappy. He hasn't been washed or bathed, besides diaper changes. The motherly instinct kicked in, and I just had to attack his head a little bit (very gently, of course).

I'm having kind of a hard (sad and tired) day, and just don't feel like I have the energy to do a long post. I'll get more sleep tonight, will hopefully feel better tomorrow, and I'll try to post again then.

Just didn't want you guys to worry about him. We haven't gotten to hold him today, which may be part of the reason I'm down, but I hope to before we go home. As much as I need it, he needs it about 10 times more.

Please keep praying for Jonah. The nurses who are seeing him now after a week are just astounded at how great he looks. It excites me to hear that, but I still know we have a VERY long road ahead of us.

Matt goes back to work tomorrow, and we are both (more me than him, probably) are dreading it. Please be in prayer for us, as he has to return to the "real world," and I carry on here at the hospital. I know I'll be busy and will probably have some visitors, but I also know it will be hard to be here without him.

"See" you guys tomorrow.


Stephanie said...

Oh, I will pray! Thank you for the update. I hope you get to hold him soon. You are one incredible mom.
He could be the most loved baby in the world!!
Praying for God's strength~

Jonah's #1 fan in TN

singing mama said...

Praying for you all!!

So glad you got to hold your little man yesterday and praying you will get to today!

Luv singingmama

Anonymous said...

The Williams Sunday School Class at Cornerstone are praying for all of you. Know that we are all there for Jonah.

Cathie said...

Hang in there - I know it will be hard for both you and Matt for him to go back to work - but God will give you strength - and matt peace as he goes - and we'll pray lots of visitors to hold you up and that no matter what you won't feel alone.

Brandi said...

We are praying here for little Jonah! I am so happy for you guys that you finally got to hold your little angel. What a special babe he is. God is working miracles through him already. We will pray that Jonah picks up eating again, and that you start to feel a little better. I can only imagine the roller coaster you and Matt are on. Thank you for sharing your story, your lives, and your beautiful son with us out here in the bloggy world.

Anonymous said...

You and your family are being so prayed over. Try to get some good rest and the Lord will give you the grace you need for the days ahead. My granddaughter was in NICU for 3 months, we know it is a hard journey. God will carry you when you feel like you can't make another day. Lean on His strength and keep hope in your heart.
It's All About Him,
Linda Lazenby

Kristy said...

That Aquaphor is great, miracle stuff, but it gets on everything. Proud of you for trying to wash his hair - good momma instincts! Carson was several days old before he got a bath, as well. Big brother's Cooper's first comment (on seeing a picture of him in the NICU) was "Baby dirty." LOL I've shown Carson the blog and pics of little Jonah and explained it was a precious little baby born with a skin condition like him. We'll be praying for you all!

Anonymous said...

Hi, I am glad you took the time to post even though you are tired. We do want to know how he is and you are doing a great job. I remember the greasy head too on Weston. Believe or not, one day you'll get to see his actual hair color! Weston's was blonde after the grease came out, even though you couldn't really tell before. His 1st "bath" was in a plastic tub thing (I think it is what they put the newborns in in the nursery to lay in for their bassinets.) They put a yellow thick foam in it so he could lay on it and he couldn't kick the sides and he hated every second of it! I have a picture I could send, but I don't know where to send it to you. At home, we did bath/bandages on the kitchen table. First put a plastic tablecloth on so you don't ruin the wood, and then we laid an egg crate foam onthe table and then put towels on that and and exudry sheet and then weston and we had a bottle for the water/hibiclens mixture (the kind of bottle that they give for an epesiotomy) We would only take the bandages off one extremity at a time, and wash it off and wrap it back up. We also could wash his hair while he was lying on the table. It helps to have you, your husband and at least one extra person to be the entertainment. They can hold a bottle or read books, dance and act goofy. Pretty soon he might like to watch a kid video with dancing and singing (weston liked Barney) And...we always started with the worst leg first, that way it was "smooth sailing" the rest of the time, haha. Now, I do his arms and my husband does his legs and it's way faster than just one person. Team work is good, so neither person has to "do all the work" I loved holding him nice and clean after his bath. YOu will enjoy it too. I wish that we could come help ya'll with your first bandage changes. My husband was the "pro" first , I was a little scared that I'd do it wrong and I'd just hold the extremity he was working on. Which was helpful, Actually I don't think I ever did it by myself until Weston was in Kindergarten!! Can't remember.
Dana Zucha

Amy Reber said...

Patrice...I'm praying for YOU today...specifically that God will grant you peace, rest, and hope. Remember that you just gave birth a week ago...and your body is also undergoing lots of horomone totally understandable that you would feel sad and tired. May God wrap HIS arms around you tonight as you rest. I'm thankful you've had another day with your beautiful baby. Know that Eatonton, Georgia is praying for you all! Love, Amy

lrm--houston,tx. said...

Jonah looks awesome in the last pictures. He's a beautiful baby! I'm so glad you guys were able to hold him, what a wonderful feeling for all of you I'm sure. Keep your chin up, you've had to deal with a lot and it is bound to catch up with you after a while. Take a deep breath, rest as much as you can, and love on that little baby boy. (like you need to be told that last one huh?) We are still praying/thinking about all of you all throughout the days. Stay strong.

Anonymous said...

You and Jonah are all doing a superb job of taking each baby step forward - look at all you've accomplished in 9 days! There will be many ups and downs, and that is just normal. Cut yourselves MAJOR slack - you've just gone through childbirth and have been absorbing huge amounts of difficult information under extreme duress. Stress is exhausting! It can also feel very surreal as you straddle the outside, 'normal' world and the one inside the hospital. You are doing an amazing job of managing all of it, and most of all showing Jonah so much love. Some day, he will be touched to learn of all the kindness and compassion he inspired when he was only days old!

Jonah is strong and otherwise healthy, and this will speed his progress. He's doing AMAZINGLY well already!!!

We continue to hold you and all of your family in our thoughts and prayers.

Adrienne & Pete Provost
EB Parents in Palatine, IL

Renee said...

Thinking of you and your precious family. Hang in there. I know it's easy for me to say that since I'm not the one walking in your shoes, but you are a great mommy. Little Jonah is lucky to have you.

Tristan's Mom said...

A friend of mine forwarded your blog and I just read it from the very beginning to the most recent post. I felt compelled to at least stop and say that I'm thinking of your family and praying for that angel boy of yours. You've had two beautiful baby boys and my heart breaks for the hardships that you've faced. I hope that Jonah keeps on fighting! Your story has made me realize how very lucky I am to have a healthy baby... Tonight, I will hug my son extra tight for the hugs you've missed from your boys.

Anonymous said...

I would guess that this past week has been one of the most emotional and phyically and mentally draining week you and Matt have ever experienced. You have had to process tons of information and still stay focused. It is important that you both get your much needed rest. I agree with the nurses...Jonah looks great in the latest pictures. He is just precious. Praying that tomorrow goes smoothly for you both, you get restful sleep, and you get to hold your beautiful son.

Annapolis, MD

Hope said...

I hope you get to hold your sweet Jonah today. Please get some rest and take care of yourself! Jonah needs his Mommy healthy.

Huge hugs!!

Anonymous said...

Dear Matt & Patrice, Please know that we are holding you all close in our hearts. You are truly inspirational people and Jonah is lucky to have you as parents. Wishing you continued strength as you embrace the simple joys of life together. Love, Grace & Lauren Ward

Mandi said...


I haven't yet left a comment, but I've been following your blog regularly. I just wanted you to know tonight that we're praying for you. Oh, I can't even imagine the many feelings you face on a daily – even hourly! – basis, but I pray that the Lord would continue to fill you with His peace, grace and strength.

Praying for complete healing for Jonah!


Carrie said...

Just wanted to let you know I'm still praying for your whole family through the transitions. I remember how my family dealt with the ups and downs and they were many. Keep your eyes on the Father and He'll provide your comfort as He is providing for Jonah's. Thanks for the updates and what a great article yesterday on the little fighter.

Emilia said...

Your strength is amazing! I've been keeping up with your blog through my mom, Elyse Topkins, who has wonderful things to say about you, Patrice. I can see why! Please know that Wilmington, NC is holding you all in the light.

Jill said...


I can't even begin to fathom how you are feeling. I remember what someone told me once in a very very sad moment. we were on the phone and i was sobbing my heart out. she said...."I wish i could hold you." that is what i felt as i read your update tonight.
my prayer is that you will feel God's arms around you - holding you.

KristiJ said...

You have been in my prayers every day since Jonah was born. Today at church I started to cry during the sermon our pastor gave because I think it was so perfect and made me think of you and Jonah. He talked about the trials we go through here on Earth, but then about the bigger picture of everything. It might give you some comfort to listen to, though I know God is right there with you holding you up. I attend a huge Bible church here in the D.C. area (over 10,000 attendees) and our pastor is so incredible and an inspiring speaker who loves the Lord with every ounce of his being.
Here is a link to the sermons, just in case:

Love and prayers from Virginia,

Anonymous said...

I only discovered your blog yesterday, I went right to the beginning and read the whole thing without stopping. You've really been through a lot.

EB is a nasty disease, but I'll never forget the words of a 14 year old EB sufferer Kate who wrote an article in a magazine. She had the most severe kind of EB, but she said "I love my life. I love school, my friends and my mom." It blew me away that this girl who suffered such agony every day still loved life and chose to be positive. That can be Jonah, no matter what kind of EB he has. I wish I kept that article so I could send it to you! But do know that EB sufferers can still lead full lives, even the severe ones like Kate.


Anonymous said...

I am praying for Baby Jonah, for Matt as he prepares to go back to work, and that you will have a restful night, that God will give you the strength you need for each new day. Sandy Henderson

j3k said...

You are so strong and doing great! I know the emotions have to be in overdrive but you are doing great! It's ok to have meltdowns.... We all have them!!! I'm sure Matt dreads going back and his mind will be with you and Jonah all day. I know it will be a long day for you there, I sure wish I wasn't 12 hours away I would come bring you lunch and just bring you a smile! You are all in our prayers and much love coming to you from the Wimsetts in Rockville, IN.

Hearts and Hugs

Alisa said...

I will be praying so hard for you this week! When my little one was in the NICU the hospital was 1 1/2 hrs. from our home so I was there for 9 weeks while my husband was at home with our other two children, while driving back and forth as much as he could. This is such a difficult time but the Lord WILL see you through! Glad to hear that Jonah is continuing to have improvements even if they are only small ones. I hope you get to hold him again very soon.

mommaof4wife2r said...

hey first time here. i'm over from andie grace's blog. i am def adding jonah to my prayers...what a darling and precious pea! i am in love with his sweetness!!

i'll add a shout out for prayers to you on my blog...and there's lots of great faithful prayer warriors!

may you continue to see the healing touch in jonah's life! yes! i love all the pics of you precious!!!!

Anonymous said...

Hi Patrice,

Here's more information on the EB clinical trial.

Continuing to pray for Jonah...Don't feel guilty about needing a day to just be down. Jesus will lift you up when the time is right. He always does. Dawn M.

Karen Korzeniewski, Greenville NC said...

I'm so glad to hear he's looking good. We're still praying hard. God still performs miracles, every single day. I've been following the news about Jonah since right after he was born, and my friend, Leigh started the Facebook group. I hope he will continue to improve. God bless you and your family.

Bridgesfam said...

I am so glad you guys got to hold him and that his WBC is back to normal. I thought his skin looked quite a bit better than it did when he was first born and so I'm glad that I wasn't seeing things. :) I'm still praying for him and your family. It looks like he's made quite a bit of progress in his short life. Yea Jonah!!

Erin Edwards said...

We were so excited to hear about holding Jonah yesterday & your pictures are wonderful:) What a special moment! It really brought back memories of holding Ethan for the first time at Brenner's:) We were also thrilled seeing you on the front page of the Journal:)

One of your friends emailed about how we burped Ethan. We didn't have to worry about blistering, so we were just gentle. He had fissuring from the membrane, but didn't seem to be in pain. I imagine it will be hard b/c you won't want him drugged for feeds, but want him comfortable for burping. I'm sure EB folks can give you much better advice (or people with EHK, for that matter). One thing I thought about is that if you are pumping please try to continue as long as you can. Breastmilk can help reduce the risk of skin infection.

Ethan has therapy at Comp Rehab (right next to Baptist) on Thursday if you'd like us to bring by lunch. Let me know if that would help or if you need anything else.

I know it can become mentally & physically draining. We'll be thinking about your family:)

Erin Edwards said...

And aquaphor is stubborn in the hair;) Methods that get it out (dish soap/etc) are pretty harsh on fragile skin. Embrace the mohawk;)

Anonymous said...

Dear Williams Family,
Our prayers are with you. You are children of the King of All Creation. Hold tight to that Hand.

New York ‐ We are delighted that investigators at the University of Minnesota, in collaboration with renowned EB researchers Drs. Angela Christiano and Jouni Uitto, are reporting promising progress toward treatment of Recessive Dystrophic Epidermolysis Bullosa (RDEB). We send our best wishes to the Liao family and the dedicated team of physicians and scientists who are working so hard to find a cure. We are proud to have been a part of the pre‐clinical research leading up to this study, and will be sharing results with the EB community of physicians, families, and loyal supporters world‐wide.
The investigation at the University of Minnesota is the culmination of several years of early pre‐clinical work supported in part by DebRA of America that occurred in other EB research labs around the country. DebRA supported the development of a mouse model that replicates the features of human Recessive Dystrophic EB, including severe skin blistering at birth. This mouse model was created by investigators in the laboratory of Dr. Jouni Uitto at Thomas Jefferson University in Philadelphia, specifically for the purpose of pre‐clinical trials of novel therapies, such as this one. Having introduced the concept of bone marrow transplantation as a treatment for EB, these mice were first tested in Christiano’s lab at Columbia University, and later by Drs. Jakub Tolar and Bruce Blazar at the University of Minnesota, to demonstrate the feasibility of the bone marrow transfer for this type of EB. Once the mouse model showed success by this approach, Institutional approval for the first clinical trial for bone marrow transfer for EB was quickly obtained and performed at UMN under the direction o f Dr. John Wagner. With research s upport from DebRA of America, Drs. Christiano and Uitto have been working together on dystrophic EB for more than 15 years, since she was a post‐doctoral fellow in his lab. Their accomplishments together include cloning of both human and mouse type VII collagen gene, and first demonstration of type VII collagen gene mutations in dystrophic forms of EB, and the development of DNA‐based diagnosis for the disorder. Her laboratory at Columbia University performed the first genetic studies on the Liao family and determined the exact molecular basis for their individual case of RDEB. She and other EB researchers have studied several different gene‐based therapy approaches for EB with DebRA of America support, before Christiano turned her attention to circulating stem cell transplantation. Additional research is already underway in which Christiano and Uitto will extend these studies in to junctional forms of EB, once again using a pre‐clinical mouse model supported by DebRA of America research funds. Both Drs. Christiano and Uitto have been involved with the Scientific Advisory Board of DebRA of America for more than 15 years. DebRA is the only national organization for the EB community that funds clinical support, educational programs and EB research for almost thirty years.
EB children are referred to as "Butterfly Children" due to the fact that the fragility of their skin is comparable to the wings of a butterfly.
DebRA of America embraces with optimism and caution this early investigation toward a cure. Mary Sprague, Executive Director, stated that "DebRA of America is deeply proud of its longstanding support of fundamental basic research in EB, and the way in which the support has facilitated this breakthrough. This is major achievement towards treatment, and potentially a cure, for this currently intractable disorder."

Julie said...

Praying for you, Patrice. Thank you for sharing with us...even the tough moments.

Cry out to Him. Oh how He loves you! He loves you.

Kelli said...

Praying without ceasing for precious Jonah!! Also for you too!
I hope you get to hold him tonight.

Becky said...

I just came across your blog and wanted to say that I will keep your sweet boy in my prayers!

Robin and Paul Cummings said...

Patrice, Matt, and Jonah:

We are praying for you all for strength. You will be able to hold him soon and able to wash his hair. Get some rest: Remember Gods love the children of the world and he is working a "MIRACLE" IN JONAH!!

Prayers and thoughts are with you all.

Robin and Paul Cummings

Cara McLeod said...

Praying daily!!!! It was great to see you guys getting to hold precious Jonah!!!!!! Brought tears to my eyes!!!!! Thanks for sharing your story!!!!

Stephanie said...

Praying for all of you!!!! It's gotta be awesome to hear that the nurses think Jonah is looking better...That's great news! Praying that you are able to hold your precious little boy tonight!

dg darling said...

Just a note to let you know I am praying for you and your sweet baby boy. Yeah! You got to hold him! I was so happy for you when I saw that. I think of you all often each day and send up a prayer each time I do. Love from Utah....

Jill said...

You are in my thoughts and prayers. Thank you for sharing your story, and I hope for each day to be better for your little guy.

Jalita* said...

Ill be at Brenners tomorrow around lunch b/c my son is having a procedure...if you wouldnt mind more visitors let me know....or if I can bring you anything, let me know.

Anonymous said...

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit" - Romans 15:13

Thank you for sharing your journey with us...I pray that our prayers will bless Jonah and you and Matt as much as your story has blessed us.

If you need anything, please let us know on your blog so we can help!!!

May God continue to provide you with the rest, peace, understanding, and everything else that you may need!

lisa said...

Your Jonah is such a precious little peanut!

Special prayers for you and your hubby tonight...I'm sure going back to work is going to be hard for him, and you're going thru an unimaginable post-partum! I hope you get some peaceful rest tonight. Much love to your family from ours!

Antheum photography said...

We were given head and shoulders by our pediatric dermatologist for Zack when he was 2 weeks old to help combat the grease and cradle cap. It has been a life saver, we still use it and it also smells good.

Reading your about your feelings and experiance brings back so much of the emotions I had with Zack. It makes me remember the emotional and physical exaustion. I honestly have not even thought about it all for such a long time, which makes me see just how far we have come. EB is hard to deal with, but with time you will be able to deal with the things that are so hard and scary now. We only take one day at time, and each day is bearable, worrying about all the unknowns is too hard hard for anyone. I know my heart aches for you and all that you are facing right now, please know that if I were close I would be there to wound care or laundry or anything that you needed. I know that God has held Zack in his hands, and I know that he will hold Jonah too.
KaDee, mom to Zack, 6 rdeb

Melissa said...

Patrice, remember to make a little time for yourself as well. I know at this point that may sound a little did to me when Bry was little and we were going through so much, too...but it really is necessary. If nothing else, find a spot in the hospital that is calming for you (the chapel is a really nice spot, or go somewhere outdoors when the weather is good) and just go there for a few minutes. At this point it's hard to think of anything or anyone other than Jonah, but remember that you have to take care of you as well and that doing so does not take anything away from Jonah, that instead it will be a gift to him...he loves his mommy and wants her to be taken care of as well. I think one of my hardest things when Bry was little was that I was afraid to do something good for me because I felt that doing so would somehow take away from him, that it would be selfish of me. Now that I'm older and have hind-sight, I know that's not true. Caring for yourself is vitally important at this point, to give you a renewal of strength and peace. So please remember to take a little 'me' time in all the rush of the days...for both your sakes. Hang in there, and tell the little man we love him...

Anonymous said...

Continuing to pray for you all. I wish there were some magical words to offer that would make the hard moments easier, but you are doing a wonderful job and you are a great Mom! Hang in there!
Daisy (Alabama)

Amy B said...

The ladies' class at Jericho CofC are praying fervently for Jonah. May the Lord strengthen both you and him.

Malissa said...

My thoughts are with you and your entire family. Jonah seems to be a fighter and will get through this.

"Where there is Love, There is a Smile, to make Things seem, more Worthwhile."

I have my fingers crossed that you will be able to hold him today.

Toni :O) said...

How wonderful that you got to hold him! Hang in there! I'm following your story from MI and praying so hard that Jonah does well and that you can bring him home soon. He is SOOOO cute! Rest when you can.

Anonymous said...

Hey Trice, I would call, but I know mornings are sometimes busy. I'll probably call a little later. But please call me if you need to...I have to work until 6, but I'll be by after that. And I should be able to answer my phone all day. I love you!--Kat

Julie said...

Continuing to pray for you all. I just caught up on Saturday and Sunday's post and was moved to tears (more like sobs) when I saw you holding sweet Jonah. I know how hard it is not to be able to hold them in those early days and I am so, so thankful you were able to do so. I can only imagine how wonderul that was! Praying that today is a good day for Jonah, that you get to hold him again, and that he continues to eat well.

Hugs and prayers from Indiana!

Anonymous said...

Jonah is still very much in my prayers I know some days will be down days but he is making so much progress and God has sent such caring Drs and nurses to be in his presence. Get some rest and take care.

Much love,
Karen in Boston

Baby Bird said...

Dear Patrice:
I hope you got a good night's rest last night!
I will be praying for Matt as he starts back to work today...and for you:) I have a new little boy starting today and my week is kind of full but I will try to sneak up there soon to see you:)
Finished the first scrapbook and starting on the 2nd.
Take care of you...while taking care of your precious Jonah!
We love you all!

Sean in San Diego said...

Father, if it be your will, please bring healing to this young baby, Jonah. Please bring comfort to his parents and others who love him. Whatever happens Father, we know you love Jonah and all of us, and that You are our Creator, and You are in control. I ask this in the name of Jesus Christ, Amen.

Anonymous said...

The Fischer family is praying for you. Our son has recessive dystrophic epidermolysis bullosa and is doing well at 14 months. It's amazing the spunk that God gives these sweet children. We would love to correspond with you and help answer any questions you may have.

Barbara, Scott and AJ (14 months RDEB)

Anonymous said...

Continuing to send prayers for Jonah ;)

Amy said...

*sends you some energy*


Amy Todd

Beth said...

I have tears in my eyes looking at the pictures of you holding Jonah....what a Blessing!!! You all need the ability to love on each other, and you will!!

I will continue to pray for Jonah and for you!!

Thank you for keeping us all updated! Jonah has a special place in so many of our hearts, regardless if we know you or not!

Your strength, honesty and faith are truly inspiring!! Keeping you in my prayers today as Matt goes back to work!

Anonymous said...

I recieved an e-mail about Jonah today. I work here at the hospital and it saddens me to know just a couple floors above me this little guys is going through such a rough time. You guys will get through this and before you know it your little man will be walking and talking. Also most guys are going for the nappy hair look these days so Im sure Little jonah can rock it to! Best of Luck

Autumn Weaver
O.R Charge Coordinator
Wake Forest Baptist Medical Center

Anonymous said...

My name is Sandy, I am live in China Grove, NC, I have a granddaughter that is 7 months old, she was born with RDEB. We are all praying for Jonah and your family. If you need to talk or any advice please feel free to contact me at

j3k said...

Today is Monday! I am praying that you have gotten through today with strength and love. I know Matt was going back to work and it was going to be a tough one. You've been in my thoughts all day and I just needed to send you and note to let you know that my prayers for today were for YOU!!!

Hearts and Hugs

Anonymous said...

I know I'm a total stranger, but I want you to know that God is waking me in the middle of the night to pray for your Jonah.

Mom of 3 little ones in Acworth, GA

Anonymous said...

Your strength and Faith has touched my heart. Jonah is so beautiful. He is so blessed to have such a wonderful Mommy and Daddy.

Cristi said...

Praying for you guys. Jonah does look better. It is expected that you will get a little down with all of the stress. Thankfully God understands and loves us and is taking good care of Jonah. Hang in there.

Anonymous said...

I heard about your story on CNN. Your family has seen a mircale with JOnah, and he is so lucky to have you as parents.
I went back and looked at all the pictures, and in such a short time it really looks like Jonahs wounds have healed. He must have just been a little roughed up from the business of being born (aren't we all!). I bet soon enough his ouchies will all be healed, and with the knowledge you gain everyday of his condition, the new ones will become less and less. God bless your whole family, and stay strong- the best is yet to come!
With love from Idaho.