Wednesday, March 25, 2009

jonah - wednesday, march 25th

*** UPDATE ***
Just spoke with Nurse Christy - Jonah ate and slept his way through most of his bandage change. They started with his left arm, then left leg, then right leg, then right arm. When they did his right arm, he kinda went crazy again ("pretty ticked off" were Christy's words). What is the possibility of nerve damage with healing after severe skin loss? His right arm is starting to look much better, but he acts like it kills him. I just don't know what's wrong.
Please pray for Jonah's right arm and hand. (How's that for specific?)
____________________________________________________

Jonah had a good day today, but I left the hospital before his bandage change. I am extremely tired tonight, and had an emotional semi-breakdown, so the nurses told me to come home - they have it under control.


I just felt like I was no use to him tonight, and if I was already crying before it started, I knew that if it was a night like last night, I would completely lose it.

So anyway, I don't know how the dressing change is going, but we will call in about an hour and find out. Please keep praying for him.

I'm somewhere between relieved to be home before midnight and feeling completely guilty for having left him. I know in my head that it's okay that I left, but in my heart I feel like I have abandoned him.

Here are pictures from today.

Snuggles from Maw-Maw.



And Uncle Andrew


And my most favorite ever...

91 comments:

mommieof2 said...

Those are some great photos. Stay strong!

Sara Jo said...

i am so glad you are getting some rest and i'm lovin' Jonah's little pout! too cute

Jennifer W. said...

Those pouty lips are too adorable. I wish there were a way to comprehend the guilt that comes with motherhood but alas... I don't always live what I preach but take care of yourself so you can take care of your little man. He is so beautiful.

Jill said...

I love the lip.

Patrice - you must do what moms often forget to do ... take care of yourself in this process.

I hope you get some good rest tonight.

Teresa @ Grammy Girlfriend said...

Praying for you and hurting with you...teresa

michelle said...

Look at that little lip! What a cutie. Don't feel bad mama. Take care of yourself tonight so you can take care of him tomorrow. Blessings.

Sailor and Co said...

Psalm 34:18...its okay for mommies to get a break..we need them...sometimes its best for the baby too.

Kelli said...

What a wonderful sight to see right before I go to sleep. Praying that you will rest tonight and have peace in your heart.

Janel Waters said...

Patrice - don't feel guilty! If you don't get enough rest and take care of yourself you will be no good to him when he needs you.

The nurses do have it under control and you need to take advantage of this opportunity to SLEEP!!

Those pictures are just so precious! I LOVE that pouty lip!

Praying for a pain free bandage change and praying for some peace and sleep for you!!

Stacey said...

Resting is not abandoning him! He is being taken care of. Praying for your family and little Jonah.

Oh, that lip is so cute!

Praying you'll be energized tomorrow.

EdwinsonFamily said...

I know your situation magnifies your feelings, but congratulations... you are a normal mom! We all have those feelings. We want to be near our babies, especially when they are sick. But, momma, you've got to take care of yourself so that you can take even better care of him. Let go of guilt, it's not from the Lord. (Easier said than done, I know) Just remember that Jesus is right there with Jonah... don't you worry. He's not alone!
Get some good rest. And thank you for sharing your special Jonah with us!
~Praying from Kansas, Joy

Joanne said...

Please don't feel badly about going home early. Please eat a nice dinner, relax, and get some much needed, well deserved rest. Tomorrow will be another day.

Praying for the healing of your precious little one.

Rose said...

Oh he is simply beautiful.

Stephanie said...

I love that last pic...he's showing his attitude :)

Stay strong...we're all there with you in thought and prayers...I can't imagine what you're going through and how hard it must be to watch him in pain and not be able to do anything about it. Please know that I'm sending love your way and that I am constantly praying for Jonah!

Stephanie said...

Can't wait until takes that car ride with you!!!
Praying.

Megan said...

Remember that while Jonah is healing, your body is still healing, too. You haven't been allowed the rest after giving birth like you normally would. Jonah is under great care. We want YOU to be as healthy as we want Jonah to be. You can tell what you heart has been feeling in your last few blogs. Remember, too, as much as we all love Jonah and look forward to daily updates, he is yours, not ours. And if this whole responsibility of keeping the world informed of Jonahs condition takes a toll on you, don't feel guilty about giving it a breather, too. Unless it is theraputic (sp?) for you to express your feelings to us. We will not stop praying if you stop blogging. Or give the responsibility to a friend for a few days. Just know that we are here...your worldwide group of support. I think that there is something magical about mothers, especially the ones just like you and i who know all to well what it is like to have a sick child, hoping for tomorrow. God has brought us all together for a reason. Thanks for sharing your story. God is being glorified in everything he has and will do through sweet Jonah.

kathunt said...

The pictures are precious. In my family we always called that pouty lip "duck lips". I love those sweet expressions, my son make "duck lips" as well.
Try not to feel guilty; you need your rest & strength. You are a super Mom.
Sending prayers your way.

kidjuggler said...

I adore his little face!

I hope that you are able to rest tonight in peace. I wish I had some wise words that would make all the emotions stop crashing in your heart.

Just know that we are all praying for Jonah and for your family. Covering you in the softest prayers from our hearts.

Alycia

Anonymous said...

Hey Patrice,
I just wanted to let you know that you did good by going home tonight. You will feel more rested (or you better!). He can sense your tension and it may work him up. But if you keep yourself healthy and fit inside and out, he will have nothing but good vibes coming from you. You dont have doctors looking after you like he does looking after him. But you need to take just as good care of yourself.
Just know Jonah isn't the only one we are praying for. We know you and Matt need our prayers too! :)

Stephanie said...

Forgot to mention how beautiful he is!!
You do need rest... thought that the anonymous commenter above made a great point! You haven't even had a chance to recover from delivery! You are absolutely an amazing mom. Beautiful, sacrificial, graceful.
May God give you rest and SWEET dreams-


"When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be SWEET."
Prov 3:24

Praying this verse over you now.

Kristi J said...

What a precious little sweetheart!! I just love seeing Jonah pics and he looks so much better, it's amazing. I know you said there are still parts of his little body that are very bad, and I pray you will see improvement. You are doing such a great job, mommy and daddy!

Praying for you every day!

Kirsten: said...

oh, i love that lil pouty face!!! don't feel guilty...all moms deserve some down time!!!

jcclifton said...

Again I say - he is so beautiful. I am continuing to pray for your sweet Jonah who has captured my heart. And I will pray for peace in your heart as you rest tonight knowing that he is being taken care of by people whose hearts are also captured by that sweet boy. Love and prayers from North Florida.

Anonymous said...

Much as it feels counter-intuitive, take care of yourself first and Jonah next (at least for now, while he's got a team of nurses & doctors looking after him 24/7). Get as much rest as you possibly can now, before he's out of the NICU & try to schedule time each day for yourself - it's SO much easier said than done, believe me - but it will make you a better mom, not a more negligent one, I promise.

Many prayers and thoughts of healing sent to you & Jonah from a mom who's btdt in the NICU & again in the PICU with my own little ds. Hang in there - you're amazing.

Anonymous said...

Amazingly adorable pics; especially that POUT! He is just precious - but he can sense when you're upset, and likely reacts from that - so allow yourself a break once in a while & take care of yourself as well as you take care of Jonah!

Praying in CT

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

Patrice, sweetie!

You're doing it wrong! We, the Mama's, are supposed to send our children on guilt trips. We are not to send ourselves on guilt trips - nor are we to allow our children to send us on guilt trips! (I hope you don't mind just a little humor in here.)

That wonderful bottom lip of his is so delicious! I just love that picture.

Get some rest - and go back at it tomorrow with a renewed spirit in the morning.

Praying for you all!
Grannie in Florida

j3k said...

That last photo has got to be the most precious photo ever!!!! Get some rest sweetie and prayers will reign over Jonah tonight.

Hearts, Hugs and Prayers for you all
Marie

Jennifer said...

Oh my. Jonah is already working the little pout. You are in for it when he comes home :)

Karen said...

Dear Patrice, I am praying that the Lord will bless you with a peaceful sleep. God is with you and your precious baby.

Krystal said...

Please don't feel guilty for a little more time to rest tonight! I think it's a gift from God. We all know that you're doing everything you can for Jonah. Get some sleep! Rest in God's arms tonight!

I don't comment much, but I'm checking your blog two to three times a day and praying as I do so, and tonight I'm praying even more for you to sleep very, very well and be refreshed tomorrow. I need to go have a good cry myself (small stuff, big emotions) and get some extra sleep. Thankfully God's arms are big enough for all of us to cuddle up in!

Alisa said...

Oh my word! The "lip" picture is priceless. What a cutie-pie! I hope you get some rest tonight, Sweet little Mama.:)

Anonymous said...

Praying that you are able to get a good night's rest tonight. Remember, your body is still healing after childbirth, and you are emotionally and mentally drained daily and you need to rest. Happy to hear that Jonah had a good day. I agree, that is my favorite picture of Jonah, too...what a sweetheart! Take care of yourself.

Gail
Annapolis, MD

Penny said...

That last picture is SO cute!

We have een praying tonight for little Jonah and his dressing change. My two boys have added him to their daily prayers and always ask to see if there are pictures of your little champ.

Congratulations on the Diaper do from MckMama!!! I hope you can make them work for Jonah.

Tara said...

What a sweet upper lip curl. He has such a sweet little face. I'm praying for you all.

Baby Bird said...

Dear Sweet Patrice:
I pray you are able to sleep well tonight! Continuing to pray for all your concerns! The pics are great...He looks like Daddy in the last one:) ADORABLE!!
Love and Hugs,
Aimee P.
ps-you are an awesome MOMMY!

blessedmomto7 said...

That last picture he is just CHILLIN! What an adorable baby you have-what a blessing!

Katherine said...

While he's in the hospital and has great caregivers with him or nearby all the time, this is the PERFECT time for you to take a few hours here and there to get some extras sleep or just have a hot bath. Once he goes home with you, which we're all praying for, there won't be many of those moments available to you! You'll be able to enjoy The Most Precious Pout of All Time 24/7 once you get home, so share it with the nurses now, while they're there to support you all! I can't wait to come see you and take hundreds and hundreds and hundreds of pictures of Jonah. My "trigger finger" is anxious to be there to catch all of those precious moments. Take care of yourself and don't let the Mommy Guilt bite!

brightleigh said...

Patrice,

That last picture is you! I have seen you stick your lip out just like that! Gurl! Take a load off. I know you are saying, I can't do that, I will feel guilty. Uh-uh. Take care of yourself. It is hard as a mommy to leave your child in someone else's hands, because you feel that no one can care for your child like you can. Right now, though you need your rest and your strength and your sanity! Jonah will be taken care of in the hospital and when you are there you can take care of him. If you haven't already, take one of his blankets and sleep with it and incorporate it with your "smell". Put it in the bed with him and he will associate that smell with you being near and it will offer him comfort when you aren't there. We continue to pray for Jonah's healing and for yours and Matt's strength and peace. You are doing a great job and remember--you can only do your best, let GOD do the rest.

Much love,
The Bright Family

LisaShaw said...

He is just too cute! I continue to trust in God for his complete restoration and healing. Bless you.

dg darling said...

I had my baby in the NICU for just ten days-I know, nowhere near what you're going through-but I do know how it feels to leave your baby behind in a hospital for even a little while. It's too bad we don't forget how we felt at those moments as quickly as our babies do. Don't feel bad. Get some sleep, take a shower, eat something yummy then go back tomorrow refreshed and even just a bit more sane. Oh, and know that we're all praying for your sweet Jonah-and you-multiple times a day.

RLR said...

Glad that you are taking care of you! I know several others have said the same thing, but it's great advice (and something all moms need to be reminded of every now and then)!

Praying....

Jane said...

Loved the picture with his bottom lip poked out, you might as well get used to that. He is adorable! So glad you went home early tonight. As everyone has said before me, Jonah is being taken care of, you need to take time for yourself and get that much needed rest. My thoughts and prayers are with all of you and will continue to pray for his healing. May God Bless

Melissa said...

Stay strong, so many are praying for yall. I hope tonight you will get the rest you need for a better day tomorrow!! Jonah is such a cute little man and VERY lucky to have the Mama he has.

Anonymous said...

Good for you to take a break. I'm sure it was good to get home to Matt,and have some 'tired time' alone.Hug each other, cry and then make yourselves LAUGH about something.Sleep soundly.
love and prayers.
2 shoes

Tracy said...

awww, lovin jonah's little pout :) hope you get some rest, you definitely need it!

Ryan, Kim and Caroline said...

That sweet little face is going to get him out of a LOT of trouble some day! We're still praying!

Ki said...

So so SOOOOOOOOOOOO cute!
Banish the guilt. You're in a marathon, not a sprint.

Leedra said...

My prayers are with Jonah, you, your family and the doctors. Your faith in our Lord is an inspiration.

Sarah said...

I love the [ics!

Don't feel guilty about leaving Jonah in a safe environment while you get some sleep. As a mom of multiples God has taught me that those times when you get the opportunity to rest while others love your kids are a blessing from Him. Hope you get Get some rest in the Father's arms.

Melissa said...

It's always hard to leave them somewhere else and have someone else care for them. When Bry was little, I stubbornly refused to leave when he was in the hospital...whenever it got to the point that the nurses ran me out for some sleep, I slept between two chairs in the waiting room. Now, in hind-sight, I can say that it would have been far better for everyone had I gone home and gotten a little real sleep. In hind-sight, he slept all night and was usually sedated and wouldn't have known that I had left for a few hours. I guess what I'm trying to say is that even though it's impossibly hard, you are doing the right thing. I did things the stubborn way and paid for it in some ways. By going home each night you are giving your body a break, which it desperately needs. And, even though it's tough mentally, you are actually giving your mind a little bit of a break, too, since you're not listening to people moving, machines beeping, and all of the noises of the hospital all night long, as well as all day...even though they seem to fade into the background after a while, your mind still acknowledges each one even when you're trying to sleep...so sleeping at home in your own bed at least allows your mind a little peace from that part. So, rest assured, you are doing it right, you are not abandoning your baby...you are doing what's necessary for your own health and so that you can give Jonah a mommy who is awake and alert and able to care for him...which is what he needs. Get some rest tonight and do not feel guilty about it...

Erin Edwards said...

I LOVE that last picture:):)

About nerve damage... Dr. Harper (neurology at Baptist) mentioned that as a possibility for Ethan. She said it may be worth testing for later when he's older. I think we may have been talking about it being related to constricted skin (especially the collodion membrane he was born in), but I think it could be an issue with trauma too. If you are concerned, you may want to consult with her. She's an awesome lady.

Anonymous said...

I was flying yesterday. One of the lines that the flight attendant says at the beginning is that if there is a problem, put the oxygen on yourself, then the one you're taking care of. That doesn't mean you're not going to take care of them, it just means you want to be strong enough to do so.

Please take care of yourself so that you can take care of that precious little one.

Kim said...

He is so gorgeous. What a cutie pouty face!

LoveLladro said...

so glad to hear you got some rest! I know you know it but a tired worn down mommy is no good to baby ;) you made the right decision! love that last picture... what a precious little face!

Anonymous said...

Adorable, I love that littlt pouty lip.I know it is hard on you to leave that little man baby, but you know he is in the best of care when you are away.take care of yourself,and know it is OK to just say I am tired amd take a little time for yourself. I continue to send prayers of healing and peace up daily for you all.
lots of love
Gina

Heather said...

Don't feel guily...you need the rest! You can't keep going like you do without it! I LOVE, LOVE, LOVE the pouty lip! Such a cutie!

Anonymous said...

Oh my gosh is he the cutest little boy. My prayers are going upwards for healing for his right arm and the rest of his body. I am also praying that you are able to get some much needed rest. It is not easy to be constantly caring for someone. Please don't be hard on yourself. Prayers for a good day.

Karen in Boston

Watts Family said...

You do need to get your rest so you can keep your strength up for Jonah. He is getting so big!! There are many many people lifting you all up in prayer. Get some rest and thanks for the updates. We all look forward to seeing the little guy! Many prayers heading your way.

Many Blessings,
Amanda

Tabatha said...

I love that last picture. You should have that changed to be your Praying for Jonah button. His face looks so much better than it did in that button. Although I do know he has a long way to go!

Stephanie said...

Praying for the right side!!!!! Love your little boy!

happy gram said...

he's such a beautiful baby!prayers.

Anonymous said...

Aw! I love that one too!! I think of you guys often during the day and will continue to pray. I can only imagine all of your emotions, but try to take every thought captive to Christ. He is your strong tower. Run to Him.
Daisy (alabama)

Sandy Moore said...

Patrice, I am so sorry for your pain. Still praying for all of you.
In Christ,
Sandy Moore

P.S. Love the "pouting lip" picture!

Saylorsmom said...

Oh that bottom lip is just too cute.

Anonymous said...

maybe he just gets 'pretty ticked off' on the right one because it is the last one and he's tolerated the messing long enough! in any case, praying for rest and recovery!

Mary said...

still praying for your family! i have been keeping up with the updates. Jonah is saying in that last picture "Mommy & Daddy, can't i just go home?!?!" he is ADORABLE!

M J said...

What an adorable pout!!!

Michelle said...

I will continue to pray for your sweet Jonah. You are such a strong mother. I can't imagine going through what you've been through. Unfortunately, being a mom comes with guilt in many forms. But know that you are a good mom and doing what's right for Jonah.

Michelle in Va said...

I hope you got well deserved rest last nite. You need to take care of yourself so you can be at your best for sweet Jonah. I am continually praying for healing for Jonah and strength for you and Matt. I can't wait for the day you can take your sweet boy home. Prayers in Christ to all of you. God is so good!!!! Thanks for the pics he is soooo cute!!

Lisa said...

what a precious look! i am SO praying for Jonah's complete healing.

Courtney said...

Looks like Uncle Andrew for sure!!

Jenny said...

I love the pouty face picture!! Praying for Jonah and continued strength and discernment for you. I'm glad you got some rest (hopefully - that was the plan anyway). Think of you guys all day long and pray for complete healing of sweet baby Jonah.

Jen said...

You're experiencing the agony and the ecstasy of parenting! I wasn't ready for it! One minute you want to get away and just regroup...and when you finally are able to get away all you want is to be with your child. It's really difficult at times. Just know that you are a better mom when you are feeling your best, and Jonah needs a mother who is well rested and ready to fight for him. You're doing a great job in a very overwhelming situation. Thanks for keeping us all in the loop. We're praying for you.

Penny said...

Sounds like at least part of the dressing change went smooth. I am not sure about the nerve damage but I would definately bring it up to the Drs.

I hope you got some uninterupted sleep. Seems that one kids are born the Mommy instincts just kicks in and we never sleep as sound again....

Our family is praying for yours...

Darcy said...

What a beautiful (hansome) little boy you have. He is so darling.

Hang in there mama, you are doing great. Dont ever beat yourself up because you needed to go home. Please dont forget to take care of yourself too.

Super B's Mom said...

Oh the lip...God bless him.

I am lifting you up in prayer today as you struggle this week. It's easy for someone else to say that isn't in your shoes, but you should never feel guilty about taking care of yourself. Rest does NOT equal abandonment! You are an amazing mother. May you be filled with God's peace today.

Christian Kay said...

First time commenter here but I have been following your story since Jonah arrived. I take 24 hour release morphine for pain/arthritis associated with lupus. Morphine is a very powerful drug. It is also VERY addictive. Our bodies become dependent on it and when we don't get it, it makes us feel horrible. Shakes, cold sweats, nausea, vomiting, headaches, overall flu like. I am sure even though they are weaning Jonah off the morphine, his body is still probably going through some of this which is called withdrawal. Now, he is a fighter, I can tell. So maybe when it comes time to change his bandages, he is feeling just bad enough that any extra "messing with him" really makes him feel worse. Not in a painful sort of way, just like when you have the flu and every time someone goes to touch you or hug you, it really doesn't feel good. This may be some of what is going on for him and if it is (I am just sure he is going through some of this) then you just have to get him to the other side. Don't give in and increase his morphine again because it makes him feel better for now but just prolongs the withdrawal process. It will take a few days to a week maybe even more for him to get it all out of his system and for him to not feel sick without it. Once he is there, things will be better for him. I just went through a morphine change last month. From oxymorphone back to plain old morphine and I was so sick for weeks. So out of it, falling down the stairs, couldn't see straight sick. It is definitely something that could be bothering Jonah. I wish him peace and a life of painless days. -Christian Kay

Hope said...

I LOVE his little pout! I'm praying his dressing changes go much better tonight!

Amy said...

That last picture is TOO cute!

Erica said...

{{{{Hugs}}}} It is important to take care of yourself too, you left him in good hands! Praying for his right arm!
I love the pouty lip picture,adorable!

Desha said...

I love it! Oh he is such a sweet boy. You probably needed to rest, and will be of much more use to him when you take the time to get refreshed. God kept bring Jonah to mind last night, and I realized it was during the time you told us would be his dressing change. I don't even know you, but that little boy has been on mind and heart so much, that my husband asks me every night how he is doing!

Carla said...

Adorable pictures!! Praying for you in Maryland!

Anonymous said...

The pouty picture might be the cutest picture ever!

momma said...

love those little pouty lips!

ashpuck said...

What a precious picture of Jonah pouting! He is so cute. I'm so happy that he gets to go home soon.

~Ashley

Pati and Family said...

thrilled to hear jonah has had a bit of relief during the bandage change...
hoping you are able to rest,
since i found jonahs journey,
he & family are on in my thoughts every day.

here praying for you all from long island new york

patricia.

Pati and Family said...
This comment has been removed by the author.
Pati and Family said...
This comment has been removed by the author.
Pati and Family said...

love the picute of jonah and the pouty look....way sweet....

so happy for you all that jonah will be going home soon.

forever in my prayers sweet jonah.

patricia.

Brenda said...

What a beautiful picture of his little pouty face. Love it!! Home is in sight, Praise God! Still praying in Indiana.

Michele said...

That is the cutest pic I have ever seen. What a face!