Friday, March 13, 2009

jonah - friday, march 13th

Jonah has had a pretty good day today - and by that I mean we didn't have to make any big, hard decisions, he only took his feeding tube out 3 times, and only ripped his bandages off his hands once.
But we both had big, long holding Jonah turns, and he's eaten a little better. He's taken about half his bottles today, which is better than the 10-15 cc's he has been taking. We've tried the Haberman (Jonah's not a fan), a regular nipple (too fast), a slow flow (has to suck too hard) and a preemie nipple. He takes the first part ravenously with any of those, and then gets really frustrated or pained or something and goes nuts - that or he falls asleep. They've started him on Carafate in hopes that it will help a little more than the Magic Mouthwash we've been trying. They are back doing his dressing changes right now. He's had some morphine and some Ativan. I'm not sure how he's doing now, but he seemed pretty peaceful after his last bottle right before we came out to the waiting room.
We attempted to secure the NG tube with Mepitac, then Mepi-something border, and we've got Mepiform on the way. Hopefully they can try again with the border stuff until the Mepiform arrives. I feel like we're trying every Mepi product on the market. I think everyone should go out and buy stock in Mepi-stuff and Aquaphor. I'll make you guys rich. :)
On Monday, Matt and I will probably begin doing Jonah's exercises and stretching during his dressing changes. The OT people have been doing them during the day, but aren't on at night. I'm a little scared about this, only because his hands, arms, legs, and feet are so raw, and I just know it hurts him to touch him there. I wish I could hide somewhere so he never has to associate my voice and smell with that kind of pain. Hopefully he'll only remember the good mommy stuff, and not the painful "for his own good" kind of stuff. Kids are so resilient though. I just have to make sure I give him WAY more snuggles than dressing changes. That won't be a problem.

Jonah is two weeks old today!




I know the paci may be causing some blisters, but what can you do when it's the only thing that will calm him down? We do slather it in Aquaphor, hoping to reduce the friction.

This picture says to me - "I'll just hold it myself. You guys are worthless."


They just came in and said that Jonah's dressing change went really, really well - the best yet! They said he only cried once when touching one of his arms, but this is so much better than the almost constant screaming he was doing before. Hopefully they've found the right combo of meds to make it bearable for him. Praise God for reducing Jonah's pain!

AND, they washed his hair - like, for real washed it - at the sink. They say it's even looking curly. I'm going to go check in on my baby love. I'll take more pics, but may not get them posted tonight. Thanks for continuing to pray for Jonah - small victories, but huge to us!

56 comments:

Erin Edwards said...

So happy you've had a good day! He looks really great--so alert today!

And I second aquaphor stock;) I can't wait to see how his hair looks:)

melanie said...

Lucky Friday the 13th for Jonah! Happy 2 week birthday Jonah-man! I missed seeing you today. Glad to see your Daddy is getting to hold you again. I know it makes him so happy. Now if those Deacons could just pull it out! Love you guys!
Aunt Melanie

Buffy said...

Patrice, you must be so over all the suggestions you get but as I am reading it is taking me back to being in the NICU with one of my twins. She was just in there for a week, but she had a really hard time eating and would do the same thing - start strong and then slow down and get very irritable. Also, with the choking on the vomit and having it come out of his nose - my girls did that too. It's super freaky scary. We figured out, though, that both of them had reflux and once they were on the right meds they handled the formula much better. Tori, the tiniest one who was in the NICU, continued to be a challenge to feed, but at least she wasn't doing that scary throw up thing. Just a though.

Continuing to pray for you and Matt as you get to know your little man. Praying you will give yourself grace! You are a great mommy!

Buffy Smith (aka Matt Sloan's sister!)

Lambert Family said...

OH Patrice! I am so glad to hear that you and Jonah and Matt had a good day! I have been waiting so anxiously to hear how your day has been. The picture of him holding the paci is precious. I hope tomorrow only gets better. Praying for you always and again, so happy for today!

Anonymous said...

Thank you for taking the time to update us. I am so glad that he had a good day and that Matt is back with you guys. We are praying for your family daily! The new pics are adorable!!

Amy said...

I love seeing his eyes open...and not the "I can hardly stand to hold my eyes open" look. I can't wait to see him tomorrow!

Anonymous said...

Patrice- I work with your mom and want to thank you for sharing your story. Your family is an inspiration to us all. Jonah is too cute! I love the pacifier picture! I hope you all have a restful night and as always you will be in our prayers.
Lindsay

Jess said...

I love the photo of him holding is own paci! :) Can't wait to see the post-shampoo pictures, too! I've never seen anything more beautiful than a baby boy with curls!

Lisa Worthington said...

What a wonderful report...praise to God for the improvements you have seen. Thank you for posting the new pictures. Jonah is adorable and I am so glad you both had holding time today. I pray that the weekend holds just as many small miracles has today. Prayers for little Jonah are multiplying each day.

Anonymous said...

There are several brands of tube shaped dressing retainers. I have used X-span and am now using Tubifast. If you cut a tube long enough to reach all the way across from finger tip to finger tip plus some extra you can cut slits in the center for the head and chest, leave plenty of room, put it on over the head like a shirt then carefully put the arms through. When Erik was at the hospital they just tied knots in the ends by the fingertips. If Jonah is wrapped like this he will not be able to get his bandaging off. If you e-mail me I can send a picture of Erik wrapped like this. We are keeping you all in prayer and I have also asked people in my church to pray. Here is my e-mail: fostermom55@comcast.net
Love & Prayers
Kathy mom to Erik 5 RDEB-HS

Anonymous said...

This is my first comment although I've probably read the blog 100 times. Just wanted you to know that there are so many people praying for Jonah. I am a friend of Matt's cousin, Tiffany. I check in here often, and I think of and pray for you all even more often. Stay strong!

Anonymous said...

Huge victories!!! Praise God! Happy 2-week Birthday, Jonah. Thank you for making it a good one for your mommy and daddy. Thank you for giving us our Jonah fix. We can't seem to go a day without checking in on him. Dawn M.

j3k said...

Praise god for good days!!! Remember he will love you just as much for taking care of him during these times even if you do have to do some of the painful stuff! You are a GREAT mom and Matt is a great dad and Jonah is one lucky, lucky boy to have such caring, loving, devoted parents like the two of you. Prayers are still coming your way!

Hearts and Hugs
Marie

Katie said...

It's quite funny to me that Matt is smiling even though he has a mask on. :) It's so obvious, too.

I'm glad Jonah had a good day. And don't stress too much about him "associating you with pain." I mean, think about it. When you were a kid and managed to hurt yourself, there were plenty of times that your mom probably had to clean out cuts and scrapes and for quite a bit, they hurt worse. But, if you were given the choice, would you have let someone else do it? Probably not. Because even though it hurt, you were with your mom--and that made things more bearable. Jonah's no different. If he's going to be hurting, it's probably immensly easier to handle when he can smell you there near him. You are his mommy, after all.

Hope you get some good sleep. Love you!

Katie said...

P.S. for Matt - Sorry about the game.

purejoy said...

aww, he's looking so big!! like muscles big!! lol, he's a doll. i know y'all have been through so much in a week. just think of the expert you've become in EB in just a short amount of time. you are great parents, and i'm so glad you had some good jonah-time today.
blessings to you!

Watts Family said...

Such a fighter that little guy is. I think he is going to continue to amaze us each day. I'm so glad to hear the good report. Have a great weekend and we will keep the prayers headed your way.

Many Blessings,

Amanda

Jill B said...

I am so glad to hear you all had a good day today (except that Wake thing;-))! Thanks for continuing to post all the pics. I love watching him grow - which he's done a lot of for just 2 weeks - he is too precious! Love you all and we'll pray without ceasing!

Brandi said...

Praise the Lord for more good things! So glad he is eating better, and that the meds are starting to work better. I love the pic of him and the paci...too cute!

littleleaps said...

So happy that he is more comfortable! Praise God for that! Praying for more comfort, more peace, AND complete healing. Carafate was another "magic" drug for Lydia. Our GI doc came to her rescue and UPPED it big time. She weighed 7KG and her dose was 3.5ml - 4 times a day! Much more than typical, but after the first day I could tell a HUGE difference. It was hard getting that much volume down her. He wanted it to go down her mouth instead of the feeding tube to really coat her esophagus. She didn't always get the full dose, but mostly did.

Mimi said...

I wanted to come on and tell you that my family is praying for yours. I know God is looking after your little miracle. Good luck honey!

Kami

momma said...

i've been reading and praying since the beginning, but haven't commented much.

i just wanted to offer some encouragement so that you would know that we are praying for you, even though we don't know you. i've cried and laughed throughout this two week time that i have gotten to know you and your family better.

we use aquaphor alot, too. but not for the same reasons that you are needing it. i do like it for our chapped hands and lips.

Hope said...

I really hope they did find the right combination to keep him painfree. I do pray for you all daily. ((Huge hugs)) to you:)

Kelli said...

He is absolutely adorable. Still praying in SC!

The Burgess Family said...

Friday the 13th has been great to you all so far!!! Matt's able to go back, Jonah was in little pain for the changes, and you "sound" more rested today than you did less than 48 hours ago!!! Praise God for the little things in life!

Anonymous said...

Patrice - I heard your story through the sister of one of your old high school friends. Since last Saturday I have been following the blog and been in prayer for your family. I have wept on your behalf to our Father and will continue to do so. I want to encourage you with the amazing testimony you are providing for the Lord with your life! Your love for your husband, your children, and your God radiate through your posts and I can only imagine the impact you are having for Him, in person, at WFUBMC.

I will continue to keep tabs on Jonah through your blog and go to the Lord on your family's behalf. I can not imagine the level of emotional and physical exhaustion you must be feeling, but keep on plugging girl! You are an awesome mom and I look forward, with great anticipation, to the day you will be able to celebrate with your sweet Jonah at home!

Diana said...

So happy to hear that Jonah's dressing changes went well today and that you got lots of snuggle time. Continuing to pray for your family.

Beth said...

Matt looks SO happy to be back with little Jonah!! His eyes tell it all!!

Glad to hear that Jonah had his best ever dressing change!! And a relatively good day!!

Sometimes it is the smallest of victories that mean the most!!

Baby Bird said...

Sweet baby boy...handsome blonde wavy locks! You go ahead and show that Mommy pride!!
Thanks for posting lots of pics - he is just too adorable!
Still praying for wisdom for his caretakers (you included) and continued pain management for Jonah and continued wellness for Matt (and Patrice;).
Love and hugs! Aimee

SS said...

He is so beautiful with all that light curly hair. he looks like Mom! I think of you every day and relish every report of his progress with eating. You all keep taking such good care of that beautiful boy!

Jonah said...

For blog readers from Matt’s Uncle

Lots of you and numerous others continue to ask - what can I do - what can I send – where do I send it? In an attempt to respond to those types of questions I have set up a page for Jonah on my business website which has been around for a long time. Matt and Patrice’s church is establishing a fund for Jonah’s expenses and there is information about what to do until that information is available. When it is available that will be posted on the page.

Later, as soon as I get it from Matt and Patrice, there will be a list of items needed for Jonah. There is already an instruction about where to send it if you think you already know what they need. A benefit concert is being discussed by their church. When I know more the information will be posted on the page.

You can find Jonah’s page on my website at:

http://www.chrisdhilton.com/jonah.htm

Please check this out and spread the word about this link. Just so you know this is legitimate you will also find this link under contact info/websites near the top in the recent news section and in the links section at the bottom of Jonah’s facebook prayer group page beside of Jonah’s photo. You will find a link to the prayer page in the top right corner of this blogs main page.

We have set up an email address where you can send an email directly to Jonah. These will be a precious keepsake for Jonah, Matt, and Patrice as Jonah gets older. It is:

jonahawilliams@gmail.com

Please shower Jonah and his parents with emails. Let them feel your love and prayers. One of the EB mothers sent photos of her son in action, playing with his dog, blowing bubbles, bowling, fishing, playing ping pong along with others which were very uplifting for Matt and Patrice and ME (I monitor the e-mail account). Thanks Dana, I have seen you on these pages many times.

Thanks, Chris

Katherine said...

What a great day, full of praises! I am so thrilled to see new pictures and to hear good news! Precious, precious Jonah, we love you so much! Oh, I could just eat him with a spoon. Love you guys!

BeckyB. said...

First- those beautiful pouty lips in the new pics stole my heart...

Second- I wanted to address the issue of wanting to hide so he won't associate you with the pain of bandage changes... when my daughter was 3 years old she fell into a camp fire. It was horrific, but our God protected her and the worst of her injuries were on her right hand. (I'd love to share the whole story of this miracle, but will get to the point cause you have a baby to hold...)

She had to endure daily debridement and bandage changes and they were, indeed, torture. I felt really strongly that she should have a "soft place" to fall during this time- one person in her life who was never involved with these painful episodes- and so her daddy never participated. So I COMPLETELY understand where you are coming from.

But this is what I want you to know... her little mind seemed completely able to sort out that we loved her, and that what was being done was out of necessity. I did my best to prepare my heart for her distancing from me, or becoming fearful of the hospital and staff, or something... and it never happened. Every day, after the torture of debridement, she would hug her therapists.

It was mind boggling to me. It still is. I know that Jonah is much littler than my Tali was at the time... but I want to encourage you that, even when you are responsible for the stretching exercises and bandage changes, he will KNOW your love in doing so. I can't put my mind around what all you must be going through right now emotionally... but wanted to offer this one bit of hope, from a mommy who's heart understands what you are feeling (even if the specifics were different).

Praying for you and your little miracle daily.

Holly said...

I love the paci picture. That is just precious and he has his eyes open. We are continuing to remember you in prayer. Take care and have a Blessed weekend.

Aimee said...

Praising God with you for Jonah's good day. You continue to be in our prayers and thoughts throughout each and every day. Thanks for the pictures! Jonah truly is adorable!

Praying in Indiana!

rameelin said...

Victory is Victory!
His color looks GREAT in these pictures. I'm telling you from an outside perspective that I can see him getting healthier! He looks soooo handsome and that hair is so cute! I'm glad that things are going well today. So glad Matt is there with you. I know you'll find strength in that. Anyway, he looks great and I hope you feel the peace that we're all praying over you all. You're so loved!

Anonymous said...

Hey guys! Glad that Jonah had a better day today! Hope you liked his clean BLONDE/CURLY hair! It is very cute! BUT on a different note....What in the world happened to our Deacs???? Not a good game AT ALL! But did ya see my boyfriend was Wake's player of the game!!! Anyway hope you guys have a good weekend and I'll see you next week!

Sheena Patterson

Aimee said...

Praising God with you for Jonah's good day. You continue to be in our prayers and thoughts throughout each and every day. Thanks for the pictures! Jonah truly is adorable!

Aimee in Indiana

michelle said...

God is so good. Praise God, you had such a wonderful day. Hopefully, this has become a turning point for sweet baby Jonah. Continuing to pray for you all. Stay strong!!!!

Stephanie said...

Awesome news!!!! So relieved that the pain is under control. praying all the little glitches will get worked out and he'll continue to improve!!!!

Keeping your family in my prayers!

Garrett and Carrie Kell said...

Don't know you guys, but know the ONE who made Jonah and KNOW He is taking care of your precious little boy. Jonah is absolutely beautiful. Thanking you for taking the time to share HIS story through your life. Jonah is prayed for daily here in TX.

Blessings and many prayers for extra strength! His power is beyond anything we can think of!
Your sister in Christ.

Crystal said...

You are doing what the hospital staff calls the NICU or PICU dance/waltz. It's two steps forward and one step back. One step forward and then two steps back. Then eventually it will be one foot in front of the other again and again and instead of dancing you will be walking out of there with Jonah :) Enjoy the good days and the baby steps forward. Praying for you guys as always.

Anonymous said...

Soooo happy that today has been a good one ,Jonah looks great, and I can not wait to see him again real soon

aquaphor is some good stuff.

Praying for a lot more good days ahead.
love you all
and lifting you up daily in thoughts and prayers
Gina

Antheum photography said...

Jonah looks wonderful!
I used to worry so much that Zack would hate me or resent me for being the main person to do his wound care. Eb kids are smart though and he figured out as Jonah will that it may not be fun, but it is for there own good and everyone feels better when it is done. Zack is a complete mommas boy and he knows momma is going run defense for him. Our relationship is very special as will be your relationship with Jonah, you will have a very special and unique bond that is already forming.
KaDee mom to Zack, 6rdeb

Anonymous said...

Jonah looks awesome!!! He is so, so cute! I am the pediatric speech therapist from WI and am still wondering if there is a feeding team available at the hospital to help Jonah become more successful with his feeds?? There are many strategies with positioning and with stimulating his suck/swallow that may make feeding easier for him and less fatiguing. Reflux meds also can really help make feedings more successful.

I am also a mommy to three little gifts from God. One of the most difficult parts of being a mom is being there when your child is hurting. It is also my instinct to want to hide, but I can tell you that children know that their mommies will love them forever. Remember he is also getting comfort from your presence during those changes.

May God continue to bless your family. We have been praying for baby Jonah every night. I think the big Guy is listening :)

Take Care--
Sara from WI

Emily's Blog said...

He looks really good tonight. I'm glad he had a good day, and tolerated the dressing changes better. The pic of him holding his paci himself is cute.

Ki said...

Every night before bed, I think "oh, gotta go check on my little guy" and I head for your blog. Of course, he's not MY little guy but YOUR little guy... but even though we are strangers, I find Jonah has been laid on my heart and I pray for him (and you) nightly. I don't always have the words, so I just ask God for mercy and to HEAL this baby boy. (And be quick about it Lord please!)
Trusting Him,
Ki (mom of three little ones)

Keila Marino said...

He looks so much like you patrice, that is all I can see in his face. He is so cute, two weeks is a good age for him!!!

the McConathys said...

Maybe try the Soothie bottles by the First Years. They have the exact same nipple as the Soothie pacifier. The slow flow nipple for it isn't super slow either. It is slower than the regular flow, but not so slow that it takes so much work. I am not sure how that would work to bring in bottles to the NICU instead of the disposable ones, though. Maybe start with one and if it works get enough for two days so you can take them home and sanitize one days worth while he has the other days supply. I am not sure, but if he likes his Soothie pacifier as much as he does maybe these bottles might do the trick! I think you can only buy them online now. I have seen them on Amazon.

Thinking of sweet Jonah as always...

Melissa said...

Oh, he is so darling! His face is looking better every time you post pics! And I love his blond hair! Still praying...

Melissa :)
www.withasmile.wordpress.com

Anonymous said...

Your son is gorgeous! I joined the prayer group for Jonah on Facebook tonight through a friend's request. I wanted to let you know that I am going to follow Jonah's story. I can't get over how precious he is!!! God bless you, Patrice. God bless you and Jonah and your husband.

xoxoxox

Jill

Anonymous said...

Jonah is just beautiful. My mom saved the article from the paper for me. We are from Winston and now live near ECU.Our son was born with a skin condition as well, it is called ectodermal dysplasia (ED). His skin was red and peeling when he was born. We thought it was just b/c he was overdue. It took a long time for us to get a diagnosis. He is now 10 and doing well. You should look up NFED.org. It is a great site for info and support. You may be able to connect with other EB parents through this site or give Mary Richter a call. She started the site. Best of luck. We will keep you and Jonah in our prayers.

Melissa said...

Whoo-hoo! I'm so glad to hear that things are going better....from his eating (any improvement's a major improvement) to his meds, to his clean hair! Have I told you guys how absolutely adorable that kiddo is? I'm glad Friday the 13th turned out to be a GOOD day, and Matt, I'm so glad you're able to get back in there with Jonah now...I don't know how you stood it being away from him. Ya'll hang in there. Happy 2 week birthday, Jonah!!!!

Jennifer McGregor said...

he really is beautiful! so happy the pain medication combination worked for him!

Anonymous said...

We are praying for you and little Jonah. We pray he does well and can come home soon.

Anonymous said...

Jonah is a beautiful baby boy. He has the sweetest little face and such beautiful hair. He is so strong also.
Please take this advice or forget it. If you put an egg crate under him and lift him with that it will decrease the stress on his little back. It will be a shield for him.
You are in my prayers and I know you can't wait to get your son home and begin your life again. I will rejoice when that time comes also.
Thank you for letting each of us share in Jonah's life. We all love him and have never met him. What a story he will have to tell his children.