Tuesday, June 9, 2009

jonah the giant

10:00am Update: Matt and I rewrapped Jonah's hands before he left for work this morning. He was still acting like he was in a lot of pain when he woke up at 6:30, and wasn't eating well because of it. He's also very constipated, so he's probably more in pain from that than from his hands, but I need to deal with one issue at a time. He did have more blisters at 6:30, but they were still manageable. The main issue I can do nothing about is the swelling, and I'm not sure if that makes his whole hand tender or not. I was encouraged that the blistering was localized rather than the all-encasing ones, but was very discouraged at how badly his hands swelled. I'm not sure what the deal is, unless that it's just that his hands are overly-sensitive since they've been wrapped for three months. Anyway, so we're wrapped again. And when I tried to feed him at 9:30, he wouldn't take ANYTHING, not even a drop. I gave him 1/2 ounce of juice mixed in with 1/2 ounce of milk at 6:30 and needed to do it again this feeding, but he wasn't having it. I can't help him poop if he won't take the juice. Juice usually works great for us, but I also have dark Karo syrup I could try too. But neither of those things work if he won't take a bottle. Anyway, it's as if he's decided, "Heck no, Mom. Nothing else is going in til some of this comes out." He's now laughing at Baby Einstein as he lies on his floor mat in the living room, totally oblivious to my anguish. Sheesh.

3:00am Update: Jonah's hands are swollen, but so far, only a few small blisters. We drained what we could before he went to sleep around 11, and it doesn't seem like there are many new ones yet (although I'm sure he's hurt himself more, because he's been thrashing around since he woke up just now.) Although there aren't lots of blisters, I can tell he hurts more than usual. He won't eat, and as I pump, he's just crying and crying. I just gave him more Tylenol and some Benadryl (to help the swelling?... a long shot) Please, if you happen to be up, pray for Jonah to be able to eat or to find some relief in sleep. Please continue to pray for the condition of his hands - that the swelling would go down, and that the blisters would continue to be limited. I've been pleasantly surprised so far that there are so few... although the swelling concerns me. If he continues to be in pain/won't eat/blisters badly from the current thrashing around etc., I'm especially worried about the lag time between Matt going to work at 7:30 and Kathryn getting here around 9:30.
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Jonah and I ventured out today (all by ourselves!) over to the hospital to meet little Miss Salem in person. I couldn't believe how tiny she was, and how light she felt in my arms. I could have sworn she was a four pound baby, but nope - she weighs 6 lbs 13 oz. Bigger than Jonah when he was born! I don't remember him being that small. Tenth percentile my foot! This kid's huge! (The pictures don't even do it justice. He looked like he could have eaten her. And he may or may not have continually smacked her in the face with his boxing gloves. I couldn't rightly say.)





I don't have a lot to write about tonight, but I do have a prayer request. We left Jonah's hands unwrapped tonight, and I'm terrified. He swings his hands and arms around so much, I'm so afraid it's going to be a disaster. It makes me queasy to even think about the blisters. Please be in prayer specifically tonight for Jonah's hands - that the blisters will be small and/or that there will only be a few - that it won't be as bad as it was after we tried the mitten a while back. His hand swelled and there were blisters all the way across his knuckles, up each finger, and you couldn't even see his thumb because it was completely encased with a huge blister. Please pray that his skin has/will toughen up and that even if it is bad this first time, that it will get better as we go along. And please pray for me - I'm so scared that it's going to be awful. Please pray for my peace of mind.

I know that's many specifics to ask for, but as always, we appreciate you so much keeping Jonah (and us!) in your prayers.

58 comments:

debbie said...

Oh my gosh, look how big that sweetie is getting!! Someones been doing something right :).
Congratulations to your friend.
congratulations to you for going out alone.
You both will be in my prayers for successful hand uncovering!!
Try to rest well tonight, what will be , will be, good luck.

Erin Hingley said...

Oh! He's darling! You are in our prayers tonight...we love you!

Erin in va
youmeandwipee.blogspot.com

Anonymous said...

God has shown his grace and mercy over Jonah in so many ways. Just look how much he is growing and how he is coping with EB. My prayer is that he will be careful with his hand movement, and that his present blisters will continue to heal. I also pray that his Mommy will feel the peace of God tonight, tomorrow, and ever after.
Sandy

Ma Ledford said...

First of all, Jonah is PRECIOUS! His outfit is awesome. I got to share a piece of you story today @ the salon - it was cool.

So impressed with your ventures in public! Go girl - praying that the Lord will use it as a means to keep you energized.

Prayers also for the hands...

Beth said...

He is so cute and my is he growing!! Yeah for Jonah!!

Praying for his little hands and for Mama's stress!!!

Shana said...

Hooray for the solo trip!! Salem is precious & Jonah is getting so big! If we can pray for poop...we can handle fingers, blisters & peace of mind! Let us know how it goes!

dg darling said...

Praying for all of you...

Beth.. One Blessed Nana said...

Thanks for sharing pics with us. Jonah is just a heart breaker - he is so adorable and he seems to be such an easy going little fella. Does he seem to be in much pain from his blisters?

I pray for him and have your "button" on my pryaer blog.

Much love - Beth

RLR said...

Sounds like a great visit! Praying for Jonah's hands tonight.

Wanda Wilkinsom said...

He is darling, so precious in his striped outfit. Boy putting him beside a new born shows how much he has grown in these little over 3 month...a big YEA!!! for such an awesome mommy & daddy that are taking good care of him.

Prayers will be sent forth tonight for his little hands & fingers & for your peace of mind. I hope you are able to get some rest tonight, i do remember those nights worrying. As Jonah said on his 3 month b'day it was by God's grace that he was here & I will be praying for God's grace & mercy to bless both of you (& daddy too).

I pray that you rest easy.

Love in Christ,

nancygrayce said...

Both babies are so darling! I will be praying for his hands! I know that's where my daughter in law gets blisters although more on her feet. I'm also praying for your peace of mind!

Alicia said...

He is so precious and really has grown a lot in his 3 months. I pray for the Lord's peace for you and that Jonah will leave his face and keep his hands still tonight. I pray that he wakes up blister free.

Rebecca said...

So glad to hear your outing went well!

Praying for Jonah's hands and your peace of mind.

CinderellaMommy said...

Praying for Jonah's hands & for Mommy's heart & mind; that God's peace descends upon you and allows you to rest tonight (of course, that is, if Jonah thinks it's a good idea to sleep all night :) .

Jenny (in K'ville) said...

You know you can count of us to pray for you guys!

Jenny said...

(I meant on us)

Laurie in Ca. said...

Covering you in prayer right now for all that you asked. I am so sorry that this is causing you so much fear, and rightly so. Praying for healing for Jonah and peace for your heart tonight and all the days ahead. He is growing so beautifully. May you rest in the Lords arms tonight.

Love and Hugs, Laurie

Becca B. said...

Praying for beautiful little hands in Arkansas!

Mimmy said...

The prayer has been said in all of its specifics.

God Bless,
Mimmy

Mindy said...

Praying for all of you!

Amanda said...

Praying for you and Jonah tonight.

Melanie said...

Jonah is such an adorable little guy and the baby girl looks so tiny and precious. Prayers going up for you and for Jonah.

Mocha Mama 24 said...

He is looking like such a big boy! I will be praying for peace for you and that his hands stay clear of blisters.

My little guy has one blister on his foot from rubbing feet together. I can't even imagine what you are dealing with everyday.

Anonymous said...

Patrice....Praying, praying, praying for all of your requests for sweet baby Jonah and for your and Matt's heart to be at peace.

Kirsten: said...

Wow, he is getting to be a big boy!!! Keeping your peace of mind and Jonah's hands in our prayers!!!

Anonymous said...

Patrice the brave! You did it girl! I am amazed and impressed. That is one cute little girl and one big Jonah! He has really grown. That showed it for sure! And I am praying for the hands. I will keep it up. It is a good first step. His head cleared up some from that wrapping you did. Patrice, thanks for sharing and for keeping us all up to date with your wonderful family! Jennifer in Southeast, NC

Jenny said...

just want you to know I'm praying....

Kimberly said...

I bet its crazy to see how big he looks compared to her! I'll be praying!

Anonymous said...

praying =)

Karen in Clemmons

Anonymous said...

Awww, Jonah is getting so big...and he looks so cute in his outfit! His new little girlfriend, Salem, is adorable, too. Praying for a restful night's sleep for everyone and no blisters.

Gail
Annapolis, MD

Bubeaner said...

Isn't it truly amazing? God is good! (Our little one was 3'13" and is now 14")

Will continue to keep you in our thoughts and prayers.

Laura A said...

Oh, what sweet pictures! It's always so amazing to me how tiny babies are - and no matter how many you have, you forget just how little they are!

I may have told you this before, but Caroline (my oldest, who LOVES Jonah!) was/is also in the 10th percentile. Heck, she wasn't even on the chart for a REALLY long time. Our doctor was wound up about it for awhile, but then she (after some lengthy discussions!) realized that as long as her curve was going up (no matter where on the scale it was), that it was all good! God makes us in all shapes and sizes - and sweet Jonah is just the right size!

Anyway, sorry to rant on that, but wanted to let you know that those percentages are just that - bunches of numbers! I'll continue to pray for Jonah, specifically for his little hands to have minimal breakouts, and for you to be at peace.

We love you all in TX!
Laura

its so very cheri said...

Did you know there is a different growth chart for breast fed babies? Most Drs just use the one for formula fed babies. The breast fed baby growth charts are more accurate and I think you would be a little more pleased with where he fit on the grid.

Rachaellh said...

Praying that Jonah's hands stay calm tonight and that there will be no blisters! We love you guys very much and just love seeing Jonah's handsome pictures.

Katherine said...

I am positively IN LOVE with the fact that Jonah is growing so much that you can't remember when he was that small, can't believe that he was so little way back when. What a blessing that is! And I also love that Hanna ... we didn't have that one, but I would have bought it in a heartbeat. Precious!

Crysgoss said...

Well I am up, I work nights:(
I am praying for peace and healing!

Kim M said...

Know that we are praying for Jonah and for you/Matt. Each new step must be so nerve wracking but you are doing so great and look how far you've come! Praying for Jonah's pain and comfort. He is so adorable! Keep up the good work - God chose you for Jonah and Jonah for you - can it get any better than that!!!
Phil 4:13

Jessica K. said...

I love those pictures!! Gosh they are both so adorable!! And he does look like a giant next to her! She is so tiny!

I will keep you guys in my prayers as so many will! I am praying for peace for you and for Jonahs skin to toughen up and that he will eat normal again!!

Dont be scared of the two hours alone I know you can do it!! :) You guys are a great team! So dont worry too much, Jonah might notice!!

Toni :O) said...

Praying hard for your sweet little man. I'm thrilled to see how much he's grown...he's doing beautifully and little Salem is so very sweet. Hang in there girl, we are all praying for Jonah and his hands and for God to give you the strength and wisdom to deal with yet another bump in the road.

Happy and tired said...

God bless you.

Heather said...

Praying for his little hands. I hope he got some rest last night.

Heather
Charleston, SC

Baby Bird said...

Dear sweet Patrice:
I am praying right now for that sweet little giant;)
And that the peace that passes ALL understanding will rule your heart and mind in Christ Jesus!
Love, Aimee Pence

Wanda Wilkinson said...

Patrice, He is not in too much pain if he is laughing...thingw will move today (I will now pray for some poop)...

Breathe deeply, look into his big blue eyes, give him lots of kisses & laugh with him..

Love you

Anonymous said...

The swelling may be caused by the lack of pressure from the bandages, that his hands have become accustomed to. Add to that the increased bumping and blister formation, and you will get swelling. I would try to wrap his hands as loosely as you can, while still accomplishing what you want.

Megan said...

Patrice,
I contacted Charlie's Soap for you and asked them if they could send you a sample of their product. They will be sending: 1 bag of the Laundry Powder, one Gallon of the Laundry Liquid and a pump to dispense it, and 500 ml of our All Purpose Cleaner to help with spotting up.
I hope this helps (and WORKS) with your diapers for Jonah. If it does, please let me know.
I told them to send it to the PO box that is listed on your blog. I hope that's the right address. If not, please email me at meganomesh at yahoo and I'll see if we can change it. Blessings! I'll be praying for sweet Jonah and his hands.

Anonymous said...

I know you want Jonah to have use of his hands but have you considered wrapping them with his fingers wrapped individually? AJ's hands have been individually wrapped since about age three months - before that we did the mitten thing like you are. AJ has full use of his hands and it has not slowed his fine motor developement. There are some good handwrapping videos online. AJ's hands would swell also and it's just not worth the pain for these little guys. Prevention of blisters is so worth it. You can see AJ's hands in the Jonah
support group video pictures.

Barbara and AJ (RDEB 17 months)

Hewett Happenings said...

He is a giant! ;D I think mommy's milk with a boost is doing him well. Congratulations to your friend on a beautiful little doll.

Continuing to pray for your familly.

Melissa said...

Praying for sweet Jonah and for you, as well. You're doing a great job with him. I've never seen such a diligent new mom!

My boys both had poop issues very young. I don't know if Jonah can have suppositories, but I used them on my little guys even at Jonah's age (Fleet Babylax for age 2-5 years) and they would poop within five minutes without fail. I just used less than the provided doseage since they were younger. Just a thought that might give you an option in times of desperation for poop.

Thank you for the continued updates. We will continue with the prayers.

angie gutshall said...

My prayers go out to you. I pray every night for your family and Jonah. I have never commented before but check your site daily. My heart goes out to you and I just wanted to tell you I think your a great Mom. Remember you can't do things on your own He wants us to call on Him in prayer and He will be there. Love a sister in Christ.

laura said...

Another trick I have heard for helping with poop-is to just stick the rectal thermometer up there-like an inch or so, and then take it out-that is supposed to help for some reason.

Also-you mentioned awhile back that you give him the Poly-Vi-Sol drops. I don't know if you can change it because of what he needs for his EB, but when I switched my son to the Tri-Vi-Sol, it made a world of difference in his poop. For some reason, the Poly (since it has so many more vitamins and stuff) clogged him up much worse than the Tri... Just a thought-maybe you could ask your Ped. about switching.

Anonymous said...

Many Many prayers for Jonah tonight.

Anonymous said...

Been praying for Jonah and his hands since last night. Computer off as we had STORMS. However, I was up so I prayed! Now I will pray for POOP! We've done that before! Hope it is all improving over there! Jennifer in Southeast, NC

Bethany said...

My lil guy has always had constipation issues...we use little tiny pediatric glycerin suppositories and they work like a charm. Fleet brand.

Anonymous said...

The swelling could possibly be due to his arms still being wrapped and not his hands. Is it possible to wrap his arms looser as you get to the wrist? If you're starting from the wrist and going UP, then the wrap is tighetst at the wrist and less ciruclation is getting to his hands. Just a suggestion, I of course have no first hand knowledge :) Prayers to you all!

Vera said...

Still praying for sweet Jonah - he is getting so big! And he is ADORABLE!! ♥

Carol said...

My nephew used to be constipated all the time. We used to lube up his thermometer and take his temperature...just feeling that thing in his nether regions was usually enough to get him to go plus with all the vaseline on it, maybe it was easier to push out.

I hope Jonah is feeling better tonight.

Amanda said...

My little girl used to get constipated SOOO bad! This is gross, but we used to take a thermometer and put vaseline on the end of it and stick it in her like taking a rectal temperature. It usually would just come gushing out and would totally relieve her. Not sure if you have tried that or not or even if it would work for him, but it helped her a lot! Just a thought.

Beth.. One Blessed Nana said...

Hoping and praying that his hands are better tonight. He is such a precious little boy - I pray healing, comfort and no swelling for the little fella.