Saturday, April 18, 2009

off to bed

Jonah's dressing change went really well tonight. Thank you for continuing to pray.

Please be in prayer for the back of Jonah's head (hey, you said you like specifics) - that his blisters there will heal quickly and that it will become more durable. It makes it so hard to pick him up, it's hard to bandage and protect from infection, and it hurts him because as much as we'd like to avoid handling him there, it's just impossible.

And now...

We're off to bed.

Sweet dreams.


53 comments:

Hope said...

Gorgeous pictures! He's so sweet. I'm praying....

hgodwin said...

Jonah is so precious! I am really ROOTING for everything to go great for all of you guys! God is good. Jonah is a miracle that only he could have created! You guys are so blessed!

I could just eat that cutiepie up! Kudos to you Patrice, you are such a strong mommy! I hope that I am as good to my boys as you are to little JONAH!

Kristen said...

How wonderful to watch Jonah grow! You are doing a great job. That beautiful little boy is always in my prayers.

Sherri said...

Sweet dreams precious baby!

Anonymous said...

oh he is so precious! I love those healthy fat little cheeks. Still praying,
daisy

mbo said...

He is absolutely precious. What a little blessing you have there.

Mike and Molly Spivey said...

Those pictures are adorable! Very Sweet! we are praying daily!

Vicki said...

Such sweet pictures! Just comparing pictures on your sidebar...I think Jonah looks like his mommy! Sweet dreams sweet baby! Praying that mommy and daddy have sweet dreams as well!

Above Rubies said...

Bless Jonah's little heart! I am praying for him continually... My family thinks of you, Matt and Jonah so much of the time.
As a matter of fact I overheard my husband telling our guests this evening about Gabe and Jonah. Even though we never have met you and most likely won't until we are in heaven, you have touched our lives. I know what you are dealing with is hard (understatement)...I remember reading in one of your posts that you are tired of being an "inspiration". I can only imagine what you meant by that. But it is so true that God is using your family, your story, to impact lives. Thank you for sharing.

And Jonah is such a cutie! His little cheeks are getting chubby! I'm sure they are so kissable! Our little family will pray specificly for his blisters on his head to heal and for minimal pain!
Blessings,
Aimee D. in Indiana

Me and My Boys said...

HI, first of all let me just tell you that my whole family has been praying for sweet Jonah (including my 2 boys). I can not even imagine the strength that God is placing in your lives right now. I know HE has a plan for us all and won't it be wonderful to see HIM one day and know what and why!
Secondly, my youngest son (who just turned 2) has the same blue,yellow,green stripped blanket that I see pictured with Jonah. He LOVES that blanket. In fact he carries that (his bay-bek as he refers to it) and his moose everywhere. :)
We'll continue praying for you and your family.

Clarissa

Rose said...

Precious baby! I am praying! thanks for sharing him with us.

The Carrolls said...

He's looking great. Praise Him! I pulling for him here in Alabama! You guys are doing a great job. :)

Jennifer said...

Such a sweet baby. Continuing to pray for him and your entire family.

Lindzerelli said...

Jonah is in my prayers daily! May the Lord heal the back of his head quickly! He looks so peaceful in those pictures. Such a little sweetheart :)

Laura A said...

Sweet dreams, beautiful boy! I'll pray for quick healing in the back of his head, and continue to pray for complete healing as well. Hope you all get some rest!

Love,
Laura in TX

Lauren said...

oh patrice, what beautiful pictures! it's so nice to see him relaxed and sleeping peacefully in his bed.

hope everything is going well as you're adjusting to not having Granny there. let us know if there's anything we can do to help :)

Anonymous said...

He is SO precious! What a beautiful little guy. I can just see the glory of God all over him. I thank God for little miracle Jonah. Its great to see him growing so nicely. He reminds me of my 3 mo. old. They are just so sweet.

Carlee

Toni :O) said...

Good night sweet Prince....he's doing so beautifully...all because of the love of his family and the prayer warriors out there. Keep the faith, stay strong and we'll keep praying for that adorable little man. My day's not complete unless I check in on that little cutie. Thank you for doing these posts and letting us in on this topsy-turvy world of yours...God bless you!

Erin Hingley said...

Patrice,

I am specificalling praying for the sores on the back of Sweet Boy's head. I hope you all have a wonderful night's sleep and an even better tomorrow!

Love,
Erin in va
youmeandwipee.blogspot.com

p.s. I love that beautiful bridal portrait of you over Jonah's bed. It's just a visual reminder that you are always there looking over him...even when he doesn't know it.

dg darling said...

Ok so I have a question about cute little Jonah. I noticed the blankets in his crib, which I assume he has to have to cushion his skin, and I'm sure people are going to make comments about SIDs danger and all. I am so paranoid when my own babies are little so I am wondering how you find a balance between making sure he's comfortable and making sure he doesn't smother in the blankets. Bless you for all you have to consider in his little life! I would be a paranoid wreck and though I'm sure you have your moments you seem to be handling it so well. I pray for you ALL the time and will keep doing so. Kiss sweet Jonah for me - a mommy in Utah!

Our family page said...

Still prayin' fanny is smaller! ;o) He is precious! Keep up the good work, you are doing great! Loving you through prayer! Missy in Mexico

Susan said...

Jonah is just so stinkin cute! I will be praying specifically for the blisters you mentioned. Hoping you have a peaceful, happy weekend.
Did I mention how cute Jonah is????

Susan in Indiana

Anonymous said...

Praying for sweet Jonah! Love the pictures of Jonah and his granny:)
Jen from Canada

jewelrylady said...

He is so gorgeous! I love those chubby little cheeks! Hang in there Mamma & Daddy.....we're praying for all of you!

fulksfam said...

I simply cannot get enough of that sweet face!!!

As for the SIDS comment... here's what we've decided in our family:

Medical advice about how to place a sleeping baby seems to change about every 20 years or so. "Only on their backs!" "Not on their backs, they'll choke if they spit up! On their stomachs!" "Not the stomachs, what if they faceplant and can't breathe?"

PHEW!

We all slept in many different positions when we were little - at least, I did, I've seen the pictures! - and we're all here, alive and well today. YOU do what YOU need to do. (I realize that the comment wasn't attacking you, but I just wanted to give some encouragement.) Mommy knows best - and you are the mommy! And one of the best I know, to boot :)

Anonymous said...

"A burden shared is a burden halved and a joy shared is a joy doubled"
Thank you for sharing your burdens and joys with us, most of whom you probably do not know. I hope it is helping halve your burdens and multiply your joys in what the Lord is ordaining in your lives. I have come across your blog recently and have been praying faithfully for you three. I thank God that He has given the opportunity for me to pray for you and to see what the Lord will do in glorifying His name and in blessing you and beautiful precious Jonah. Thank you for giving specific prayer requests. God has specifically put you on my heart to pray for daily. So you can count on it!!! I sure wish I could meet you all and encourage you in person! But I live all the way out in Washington state!
I have 5 grandbabies, 2 are in heaven and 3 here to still hold. One is almost a year old (his name is Gabriel too!) and then my twin grandbabies were born shortly after your Jonah, on March 16th (they are Noah and Hannah)! I thought you might wonder a little about who this sister in Christ who is praying for you is!
Jonah is so beautiful and I know he is even more beautiful in spirit because of what the Lord is working in and through him through his suffering and the love and care that you are lavishing on him. God works the most beautiful Christ-like character in those that suffer in various ways here on earth. That is how He works His sanctification in us. The same is for you, you are more beautiful because of having Gabe and Jonah, especially the inner beauty that radiates out the love of God. Have faith and trust in Him at all times. You can do that because He is faithful and trustworthy!
I wish I could do more to serve and encourage you. Thank you so much for letting me have the privilege pray for you!
Blessing galore to you!!!
Luann

Debra said...

We are praying for you out here on the West Coast. Jonah has captured my heart and you and Matt are truly wonderful parents. Thank you for sharing your miracle with the world. You are all helping the rest of us be better parents.

Carla said...

Such PRECIOUS pictures. They made my day! I continue to pray. I am praying for the blisters on the back of his head specifically. :)
Have a Blessed Day!
Love in Him,
Carla in Maryland

(Mom to 4, Grandma to 5)

Teresa said...

I came across your blog recently and have been checking it every day. I keep Jonah and you both in my prayers every day, even though we have never met. You are an inspiring and courageous woman. I admire your obvious strength, and pray that you will soon GET MORE SLEEP....from your milk label posts it sounds like you need it. I pray that Jonah will continue to do well and that his blisters will heal. Stay strong.

Teresa

Anonymous said...

Yesterday, while walking through Tuesday Morning looking for a mirror, Jonah crossed my mind. Who knows why, but he did. What I thought was that in his world, from his few weeks on earth, life is pretty good and pretty normal. Imagine what he's thinking. My legs hurt and my parents give me medicine. They don't want me to get more owies, so they wrap me in this stuff. My belly gets empty and fill it up.

While Jonah's concept of normal may not be our concept of normal, it's his normal. I have a friend whose son has cystic fibrosis. Pounding on his chest every morning became like one of us drinking coffee every morning. It was just something you do. Jonah's dressing changes will be like that. In time, he can help. In time, you'll be catching up on the cliffhanger episode of a show while he's playing with his gameboy.

I just know he's going to be fine through and with all of this.

wanda Wilkinson said...

Awesome pictures, seeing that little precious angel sleeping, resting, healing & growing. That beautiful picture of you, always watching over him. Jonah is such a doll baby.

Glad to hear the dressing change went well last night since Granny had gone home.

Kiss those sweet cheeks for me & know that the 3 of you are in my prayers multiple times through out the day.

What great parents you & Matt are...enjoy this beautiful Sunday that God has given us.

Erin Hingley said...

For the SIDS comment...that was just unnecessary. My son has slept on his tummy since he was born! Did I worry? Yes. Did he sleep any other way? No. I think that if it took a MILLION blankies to make sweet Jonah comfortable then I would use them. I'm sure the SIDS concern as well as a trillion other worries have entered Patrice's mind. Let's just try not to bring any more to the table for her. I'm sure you only meant good, but it just seems like too much...

Katie said...

He is just gorgeous! So beautiful. Every night I keep Jonah in my prayers and there is not a night that goes by that I do not pray for a cure for EB. Thank you for sharing your sweet son with us! :-)

Anonymous said...

BEYOND beautiful pictures. He looks so sweet and comfortable. Oh, and I noticed that pretty picture of you on the wall!! Love that :) and I bet you were wearing make up that day :o)

He has the cutest, most comfy bed. I am so glad he is home.

You truly are an amazing lady.

Kimberly
WI

Shawna from Round Rock said...

Precious, beautiful little boy!

angela said...

I LOVE sleeping baby pictures! he is such a beautiful baby!

Scott, Julia and Solomon said...

Aquaphor removal tip...
Pour a little liquid Tide on the stains and rub it in with a stiff brush (I used an old toothbrush). Let it soak for about 30 minutes or so and then wash it in warm water. Repeat if necessary. This always got Aquaphor out of clothes for me.
Hope this helps, thinking and praying for you guys!

Michelle in Va said...

He is such a cute little fella. You can tell he is growing. He looks so peaceful and comfy in his bed. Praying continually for you all and for those blisters on his head to heal quickly. God bless you all. God is so good!!!!

deb010502 said...

I find myself constantly thinking about praying about Jonah, you and Matt. Weird how your family has touched my heart so much, without even meeting you. You are a strong woman and the fact your faith in God never waivers is such an inspiration to me. It's going to be interesting to see how God uses your family and Jonah's story to reach other people.

Love those chubby cheeks!! Jonah is precious!!

About the Aquaphor stains...I have used Simple Green to remove oil and grease from my husband's clothes when he was a mechanic. I cannot remember if Simple Green is with the regular cleaners in WalMart (or Target!) or close to the automotive stuff. It is kinda strong smelling, but not like ammonia. And I would definitely wash those clothes separately (like you are already doing!)

Continue to be strong. Take comfort in knowing one day Jonah will have a completely new body in Christ!!

Love and Prayers from Florida,
Debby and Family

Julie said...

Such a precious little boy!! Beautiful!

Praying...

Mindy said...

Prayers are being lifted up right now!!! AND oh, how sweet those pictures are!!

Christine said...

He looks so comfortable and secure in his own bed at home. Precious baby boy.

Sweet Dreams!

Stephanie said...

He's just precious!! Praying for jonah!

Stephanie said...

Seeing Jonah in his cozy bed, in his own home just makes me HAPPY!!!!!!!!

valerie said...

Jonah is so precious! Those pictures are adorable.
I pray for Jonah and you & your husband often.

bcv0524 said...

Jonah is just absolutely precious!!! I pray for you and your family daily. You are a very special Mommy. Jonah is a lucky little guy to have you as his Mommy :) I love the picture of you over his bed. Gorgeous! It is almost like a constant reminder to him that Mommy is always watching over him, just like God is always watching over you. Don't ever forget that!

MelH said...

Oh what a precious doll baby. I was at my grandma's Friday and telling her about your family. I was able to bring up your blog on my phone and she just marveled at the pictures of Jonah. Everyone who sees him falls madly in love.

And yes! I have prayed for poop! lol (in reference to your other blog) My oldest son was constipated from the time he was born until he was 3. Every week was a battle for poop. Thank goodness when he got a little older we were able to try Mirelax which helped alot. I will so pray for Jonah to poop soon so his little tummy feels better.

Patrice, you are an incredible mother. The love that you have for your sons radiated through your posts and I think we all can feel it. I just wanted to give you a word of encouragment. As mothers we are so hard on ourselves at times. I remember our pediatrician telling me years ago that mothers are always blaming themselves for everything, where fathers look for something to blame. lol I have found it to be sadly true. Its our nature to sometimes not feel good enough and I just wanted to tell you that you are amazing. You were handpicked by our Lord to be Gabe and Jonah's mommy and he wouldnt have given you that honor if he didnt think you would be the right mommy for the job. So, in those wee hours of the morning during those feeding times, just remember that you are loved and love so beautifully that you inspire others.

God bless and kiss that sweet baby for us!

The Hyso's

Anonymous said...

First off..you are an INCREDIBLE mother and nobody including me doubts that! You are AMAZING making so many decisions and at a young age. You are simply amazing that you are handling everything that has been thrown at you with beauty and grace. But, as a mother of 2, if it were me, I wouldn't put all the blankets in the crib with him. The striped one under him could become "bunched" up and create an airway block. The one over him could slowly work over his face and he would have no way to knock it off, since he has to be so bundled. The "rebreathed" air theory also plays into my thinking if the blankets are too close to his face. Parenting is trial and error and in the end you have to make the decisions that you think are the best for your family at the time. It's SO hard to make all these decisions, just these are just my personal opinions.

Anonymous said...

As a prior NICU mama, believe me, Patrice is MORE than aware of what the risk factors for SIDS are. There are videos that have to be watched on SIDS, paper work that has to be gone over and signed for SIDS, and lectures for every nurse on SIDS. You're only repeating the things she has already thought of a hundred times, and has already determined the risks in Jonah's specific case.

Molly said...

Look at your cutie just peacefully sleeping in his crib! What a beautiful son you have. I am thinking of your entire family today, especially Gabe.

Kimberly said...

What a beautiful post, praying for your sweet heart today.

Lindsay said...

To Gabe and Jonah's Mom,

Thank you. It means so much to hear your child's name echoed a year later. Just because they are out of sight they are not out of mind (or heart). Our baby Angels are still doing their work connecting their mothers together with compassion. Your family is never far from my thoughts, including Gabe! ^i^

dragonflyz in June said...

Your son is absolutely beautiful! My heart goes out to you, and I am in awe of your strength. My son was born on Jan 15 and shares a name with your son, it is what drew me to read up on Jonah. So I now pray for two Jonah's! I look forward to seeing him grow and will pray for all of you at all times. My son has the same mobile as yours and LOVES it. God Bless you all!
Crystal