Wednesday, April 8, 2009

jonah - tuesday, april 7th

Great dressing change tonight!

We got a really late start, because the reporter from the Journal came to interview us for a follow-up story on Jonah. It was a good talk, and very hopeful compared to the last time we spoke with her. She asked me at one point if I felt like a mom. I said, "I feel like a caregiver"... which sounds really bad, but that's not how I meant it. What I meant was that with so many people around and with all the help, it feels like Jonah is a community child (which is great), so I just feel like one of many who are caring for him. It's the whole "It takes a village" concept. But I don't really think I'll fully grasp the concept of "mom" until all the help leaves, we're on our own, and we start creating our "normal." I still feel like a confused kid most of the time, so the fact that I'm responsible for the life of another human being blows my mind... still adjusting. In lots of ways, though, I definitely feel like a mom - the instincts kicked in with Gabe, and I've never really been the same since.

It's so great that this time when the photographer comes, he'll be taking photos of Jonah from our house. Hooray! I'll let you know when the story runs.

I had Kathryn take pictures of the dressing change tonight, so I'll plan on posting those tomorrow along with an explanation of the process. I use the term "plan" very loosely. I know this is hard to believe, but I'm not the one who calls the shots around here these days. Just so you know, I may post some pictures that would be tough on little eyes, so maybe preview the blog before you bring the kiddos to look at pictures of little Jonah. He looks GREAT, but I'm using my crappy camera (I had been using my sisters' awesome cameras), so it blows out the pictures, and even the parts that aren't really red in person look red in the photos... all that to say that the pictures will NOT do him justice.

Off to bed. If tonight is like last night, I'll be up from 3am to 6am hanging out with Jonah. He's wide awake and content (as long as you're holding him) during that time. See? I told you I don't call the shots. These pictures were taken at 4:00 this morning.

59 comments:

Outnumbered by 3 Stooges!! said...

those pictures are so sweet! aww little cutie!

brandie said...

aww..newborns sure know how to open our eyes at the wee hours of the morning! Sometimes that quiet time together is the sweetest!
In my prayers!Goodnight!

Jolene said...

Jonah looks so sweet!

Krista said...

Call me crazy, but I love those early morning snuggles! It's a great time to spend in prayer too. I continue to pray for Jonah and your needs too... like more sleep! :)

Kirsten: said...

Such a cutie!!!

rabidbutterfly said...

I don't really know what to say, except that I stumbled onto your blog sometime last week and have NOT been able to stay away from it. I can't do much but pray, but I promise to do that...and keep looking for pics, can't wait to see the smiles your sweet boy has stored up for you and everyone else!

teacheroftwos said...

Even though it was 4am don't forget to cherish those moments. How sweet that your hubby was just smiling at him with that proud papa smile! How often do you check your PO box. I sent something for you guys and was wondering if you got it?

jewelrylady said...

I love those sweet pictures! I too, love that quiet time with my sweeties! Still praying for you guys!

PJ Bear said...

Jonah is so lucky to have you as a Mom. You are doing a great job! We are all human, and we get weary at times. God is able to see us through those times when we doubt ourselves, and lift us up.

Isaiah 40:31 says:
But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Jonah is precious. He is loved and prayed for by thousands of people who may never know him, because his mother opened up her heart and told his story. He has touched my life and made a difference in it. Thank you for sharing him with us.

Nathalie from Toulouse said...

Jonah looks so sweet! I am so glad that dressing changes are getting easier! I pray that it only gets better from now on!

The DurĂ¡ns said...

I have been following Jonah since he was born, I think. Whenever my little son, Samuel, is up at night to eat or cry! I look at your blog and pray for your family.
Angie had a post yesterday about pruning and our family has gone through some pruning and I couldn't help but think of your family too.
I have prayed since I "met" you that God would heal Jonah, but beyond that I have prayed that He would continue to do a work, His work, in you that could not be accomplished in ANY other way but THIS way. And that you would continue to surrender your lives to Him and His work.
It is simply beautiful to see that happening. It does not feel beautiful, I am sure, but seeing God fulfill His purposes in your lives is an incredible thing and I finally wanted to make note of it.
I will continue to lift you before our God who does EVERYTHING for our good and for His glory.

Melissa said...

I know we can't see what's underneath the bandages, but the parts we can see look so good! Get some rest when you can, and enjoy that baby....you're doing a great job, Mom. Oh, one thought that might help with the whole "caregiver vs mom" thing. It's a saying I stumbled across that I liked..."To the world you may just be one person, but to one person you are the world". So think of it kinda like that...you may be one of the several people taking care of Jonah, but to Jonah you are the world...

brightleigh said...

So sweet....I think Jonah's head looks good Patrice. Now, granted I don't see him everyday, but from this angle, it looks good. He does look very content and happy laying there in the bed with Daddy. I am glad things have improved. I know it is easy to get discouraged, but just know that you have so many lifting you up in prayer--we are your cushion! We look forward to seeing you soon. Hope you guys have a great Easter. We love you and continue to pray!

Much love,
The Brights

Nicole said...

What sweet photos... I am sure those moments with him are precious - even at 4 a.m.! You can sure tell how much his daddy loves him by the way he is looking at him - and likewise - you can see how much Jonah loves his daddy too. Enjoy this day - we are praying for you!

Alyson said...

What sweet pictures.....Father and son bonding is so precious :0)

Blessings!

Alyson

http://wellensfamily.blogspot.com

Anonymous said...

I love these pictures, Jonah is just adorable
Sending lots of love and prayers your way
Love Gina

mandi said...

Those pictures are great!! So happy for a good dressing:)

Mindy said...

Those pictures are so sweet! I have to tell you, I have learned to embrace the "it takes a village" concept and I don't even have near all the things you have to do. But when you have a wonderful "blood" family and a wonderful church surrounding you then this concept can not do anything but strengthen you and Jonah.

We are still praying!!!

Anonymous said...

he is SO precious! I love that cute little blue diaper, too!!! You're doing a great job!
Daisy (alabama)

Erin Hingley said...

what a handsome boy!! thanks for sharing those pictures- glad the dressing change went better. God is WONDERFUL!
-Erin in VA
youmeandwipee.blogspot.com

Martin Family said...

Priceless pictures! And I know you have lots of help, but we are here anyway, if you need us.
Praying that the reflux med starts working quickly and that Jonah can eat again without pain. Great news on his weight gain though!! And he is just precious!
I think we all feel like caregivers sometimes. There is a lot more work to being a mom, but every once in a while, you have a special moment that is all yours, and THAT is when you feel like a mom. God Bless!

Jennifer said...

Glad the dressing change went good. Cute pictures.

amanda said...

i love the pictures of daddy and jonah. i also love the fuzzi bunz!! isn't cloth diapering so much fun!?!?!

Shay said...

He is precious! I can't think of any other word. You guys are very strong and God will continue to be there for you. WE may not know why things happen we just know they do.

Anonymous said...

Patrice,
Okay, about the caregiver thing.....I think you need a reality check.

Since Jonah was born, is there any single person who has been with him more or cared for him more than you? Nurses work their shifts and then go home. They even get days off. Matt is Jonah's dad and adores him and cares for him like you do, but he goes to work during the day and has a 'break' from the round-the-clock caregiving. Friends and family help -- sometimes above and beyond, giving of themselves -- but eventually they go home and rest, take care of their own lives and concerns. Even if they continue to pray for and think of Jonah when they are away from you, they can mentally leave him behind for periods of time as they are refreshed and ready to help again.

The fact is that when it comes to Jonah, your personal experience is and will always be unique. As his mommy, your connection with him, your 24/7 caregiving, your intimiate knowing and understanding of his needs is unmatched by any other person. Who else on this earth knows every inch of his body like you do. Who is first to notice a new blister? Who inventories and mointors the healing progress of each sore? It is all you.

My kids don't have special needs like Jonah, and my husband is very hands-on and present for us all. He's always been a great diaper changer and bottle-giver and done all the wonderful things I ever dreamed my children would have in a father. Nevertheless, my experience as a parent has always been much more intense and more incessant than his. For a while it didn't seem fair - how could he get all that sleep? why does he get to take breaks, get to leave the house, preserve pockets of life for himself when I have nothing left in my life but caring for children? It is this way for moms, and even more so for you.

Remember an earlier post when you said that in the hospital you were taking care of Jonah just like you would at home except that it takes 8 hands? Well, you were so right. I am glad to hear you have the 8 hands to help at home -- Jonah will need this for a long time. But, even having 8 hands to help does not relieve the mental and emotional part of parenting him. They do not have the questions and doubts and need to plan for him on their minds at all times like you do. That belongs to you in a degree that is and will always be different than it is for any other person in this world. This is what makes you Jonah's mommy. And he knows it.

God bless you,
jlmcq

Baby Bird said...

Dear Sweet Patrice:
Although you may feel like a "caregiver" it seems to me that you have been chosen for a higher calling...and Father is making that clearer to you with each passing day...I know you are not a priest but this scripture is really neat...notice I love to use my "..."'s ;) I can't complete a thought...my mind is going like crazy...never stops...ok, enough already!

1 Peter 2:9-12 "But you are the ones chosen by God, chosen for the high calling of priestly work, chosen to be a holy people, God's instruments to do his work and speak out for him, to tell others of the night-and-day difference he made for you—from nothing to something, from rejected to accepted. Friends, this world is not your home, so don't make yourselves cozy in it. Don't indulge your ego at the expense of your soul. Live an exemplary life among the natives so that your actions will refute their prejudices. Then they'll be won over to God's side and be there to join in the celebration when he arrives."
You are His "instruments". Jonah is an "instrument"! And how quickly we all forget that this world is NOT our home...and the "natives" are looking to us...and our lives (the good and the bad) can win them over to Christ!
I don't truly understand it but trust that Father can use me (and you) to draw a lost and dying world to Him...and along the way help sweet baby Jonah to continue to heal and make AMAZING strides with each passing day, defying the odds! And that when there are moments when we (you) feel like you can take anymore...you can't go on one more day - HE IS THERE and HE WILL MAKE A WAY!
Well, I love you girl! Gina called on this past Sunday night and someone else brought dinner for you guys on Monday so I am taking next Monday. Will call you later on Monday morning (the 13th) and see how many you will have there and then drop it off on the porch:)
Have a great day today...kisses to sweet wide-eyed Jonah!
Aimee Pence

godfrey said...

He looks so happy! You guys are doing a great job.

blessedmomto7 said...

He is just TOO adorable!

Stuart and Tashia Uken said...

What a proud happy daddy. Even at 4 in the morning. It is never to early or late to take pictures. We continue to pray for Jonah's eating and blisters inside. We also pray for continued strength and endurance.

Still praying in IA
Tashia Uken

Jessica mommy to Alex/ RTS said...

adorable!

Sarah @ Thrifty Decor Chick said...

Believe it or not, some day you will miss those sweet moments in the middle of the night. :) Nothing like a baby head and those precious eyes staring at you in the dark. There is no reason to the way they sleep at that age -- it can drive you batty!!

dg darling said...

oh my goodness could he be any cuter!!!

Mommynurse said...

Thanks for posting the pictures. I truly can't imagine what you are going through, but I pray that God's grace is more real to you than ever before. My 20 month old had a sore on her leg for a few days, and as concerned as I was about it, I realized how much more exponentially concerned you must be with Jonah. As weird as it may sound, I felt like the Lord used the sore on her leg to remind me to pray for you.

Megan @ Hold it Up to the Light said...

You seem like such a precious soul, and I so appreciate your honesty and vulnerability with all this so that we know specific things to pray for. He is just precious!

the-mommy-person said...

I love those pictures! Thank you for sharing. Love, blessing, rest, and happiness to you all!

Heather said...

I love the pics. I just continue to praise God that Jonah is HOME! I love seeing him in bed, in his bouncy seat. Thank your for sharing your heart!

jess said...

So awesome that you captured those 4 am pictures...the look on Daddy's face says it all...PURE LOVE. Some of the best pictures of my kids early days are those crazy early morning pictures, I remember pulling my exhausted butt out of bed to get the camera...now I am so, so glad tohave pictures of the exhausting, but cherished, moments too.

Blessings to your family and always Jonah. He is so beautiful, so, so beautiful.

Amy B said...

Treasure those early morning snuggles- they'll be gone before you know it and you'll crave to have them back! We continue to lift your entire family up to our Saviour. We trust that He IS continuing to heal and restore your precious Jonah daily in ways that only He can know, but we'll soon see.
Blessings & Prayers,
Amy in WA

Anonymous said...

I have been following your story for quite some time and I just wanted to say that everything you are feeling is totally normal. Looking at those photos of precious Jonah at 4:00 in the morning brings me back to some of the best memories. I have a 3 year old and an 11 month old. My 11 months old son would wake up from 1-3 and he was all smiles. It usually takes about 4 months before they are on a solid schedule. You are doing a wonderful job.

SavedbyGrace said...

Jonah is precious beyond words. I love reading your blog and looking at pictures of your family. My brother-in-law and his wife have a baby named Jonathan that is staying at Brenner's Children's hospital because he was born with Gastroschisis. He will probably be there until the end of April. Last Friday when we were in the Brenner's waiting room, I met your husband's mother and his sister. I am so thankful that they told me about your blog. Reading it has been such a blessing. I'm keeping Jonah in my prayers.

Michelle in Va said...

So glad to hear the dressing change went well last nite. He is so cute. In that last pic, he looks like he is smiling at his daddy. Keep being the great mommy and daddy you both are. Being a mommy is the hardest,toughest,scariest, most rewarding, teriffic job you will ever have!!

Elizabeth said...

Having had a NICU baby, we found that he was awake a lot in the middle of the night, too. He needed a radio for a long time just to have a constant noise because it was just too quiet at home...just a thought. We're still praying in VA...

Anonymous said...

what a gift God has given you in Jonah!!! Praising Him for His faithfulness and continued peace and strength this week! AMEN!

michelle said...

What precious pictures. Continuing to pray for y'all.

The Fugate's said...

I love the pictures of father and son! So beautiful, so precious. I remember those sleepless nights where my eyes could barely stay open, but they did so I could gaze at my beautiful babies.
Glad to hear that you both are doing better! Praying for a positive report from the ENT tomorrow!

Beth said...

It might be 4am but Daddy doesn't seem to mind too much!!

I know you are sleep deprived, as all new mommies are, but try to cherish those middle of the night wakings!! My kiddos all sleep through the night now, but sometimes I seriously wish they would wake up and snuggle!!

He is such a sweet boy!!

Praying for Jonah!!

Kelsey said...

The pictures are just so precious! I know I don't even know you but I love getting my little Jonah fix everyday! I am so glad that his dressing change went well last night, I hope that starts to become the norm around your house. I am so impressed with you as a mom, Jonah is so lucky!

Sandy Moore said...

Oh so sweet . . .

Lauren said...

adorable pictures. even at four in the morning, jonah looks like he is happy to be home.

let me know if there's anything we can do to help. miss you guys!

Anonymous said...

The pictures of Jonah are ADORABLE...thank you for sharing. Jonah looks great! Praying that future dressing changes go well. You and Matt continue to do a great job.

Gail
Annapolis, MD

C ♥ said...

http://theinterruptedgirl.blogspot.com/2009/04/standing-up.html

LoveLladro said...

OMG... that is one freaking adorable kid! Oh how I remember the days of just being up. For no reason other than Chase was wide awake and wanted company. Precious times... tiring as hell be precious ;~)

Krista said...

Do you still read day old comments? I have an idea for you. Do you by chance have a lazer pointer? My husband has one and we like to use it with our babies. Both our kids as babies would just sit there and watch the light on the ceiling with total rapture and amazement. I was just playing with Hudson now and it occurred to me that it could be something to try during Jonah's changes. Never know. But at least with my kids they stay still as can be for as long as the light show lasts!

ashpuck said...

I love the early morning pictures of Jonah with his daddy. The look on Matt's face is pure love! And Jonah's little cheeks are filling out, I bet they are just right for kisses. What a sweet boy. You are doing a great job at being a mama and a caregiver!

Praying for Jonah in GA~
Ashley

Shasta said...

He is sooo sweet!!

Stacie said...

Praying for you all, especially sweet Jonah, every day.

With Love,
The Sperrys (VA)

fulksfam said...

He looks SO happy to be at home with his mommy and daddy at last - like he KNOWS where he is supposed to be! I love it.

I have only recently begun to appreciate those sweet middle-of-the-night moments when they're just awake enough to recognize your face and greet you with a smile, almost like a "thanks for waking up at this insane hour to take care of me!" I am SO happy that you're getting these sweet moments at last!!! I love seeing how he looks at you and Matt... you may feel like just another caregiver, but trust me - Jonah knows the difference between you and everyone else!

Still praying constantly,
Chris and Jessie and Casey

Watts Family said...

That little pumpkin is so sweet! Those will be some of your favorite pictures forever. Get some rest and Have a Happy Easter!

Many Blessings,

Amanda

Rebekah said...

That is just the most precious thing I have ever seen. Look at him looking at his daddy. True love!!!!