Monday, March 2, 2009

a couple more

More of Jonah. He is more swollen tonight (I'm sure you noticed), and this is because of the IV fluids he's receiving through his umbilical cord. At rounds they said his electrolyte levels look good, so I don't think the swelling is anything to worry about - the nature of the beast, I guess.

We just gave him another bottle, and I definitely felt like he took more, and he gave us 2 big sucks - that you could actually hear, they were so loud!
(But then after Matt went in for his goodnight visit, he told me Jonah had spit up a whole bunch... grrr.)

Prayer requests -
- that he will keep breathing nice and strong and that tomorrow we can remedy the pulse-ox situation
- that he will eat, eat, eat tonight and we can avoid the feeding tube
- that he will continue to resist infection - what a blessing that he is showing no signs!
- that he will do well tonight in the care of Christy (another AWESOME nurse) - we're all going home for a good night's sleep, but will be back first thing in the morning
- Peyton, Amy, Sarah, and the kids as they travel the icy roads back to Chapel Hill; they came all this way for just two hours with Jonah, and he rewarded them with some great eye snuggles.
- Kim who is flying back to NY tomorrow



(a little blurry, but too cute to resist)

89 comments:

Joy said...

He is so beautiful. I am praying for your family.

hgodwin said...

He is gorgeous! I am not just saying that either! When I look at him, I don't see this baby with all these skin issues, I see this beautiful little blessing that God bestowed upon you! Good luck, and I will keep praying!

Katherine said...

I can't help it ... the pictures just make me well up. He looks so fragile, but at the same time, so strong. He reminds me of Gabe, and of our Jake. Strong family resemblance, I guess. :) IT does my heart good to see his little face peering out into the world; keep 'em coming, guys.

RLR said...

He is just precious. Still praying!

j3k said...

He is absolutely the cutest thing ever! You have been blessed with an amazing gift! He is beautiful! The pictures and updates are wonderful because I check at least 10 times a day to see how you are so I can pass it on to my prayer warriors!

Hearts and Hugs
Marie

Jenny said...

Hello! Jonah is so beautiful! Love the pic of him with his eyes open, what a trooper. We are praying for you all! Glad you were able to get in contact with DEBRA, they are truly amazing. I wanted to comment on the pulse ox issue you were having, my son Jameson has had 3 surgeries and we ran into the same trouble, there is a pulse ox they can use that is made out of co-ban as long as they apply some sort of lubrication to his skin first, this may work for jonah as well. Also, have the doctors looked into sheepskin or lambs wool??? It really helped Jamie's skin breakdown tremendously... Your family is in our thoughts and prayers! Jennifer

Tiffany said...

He is such a cute little fighter!! I love seeing his eyes open - what a treat! We are praying so hard for all three of you. You and Matt are an inspiration to all!! All our Love, Tiffany

melanie said...

Love the new photos! I am coming tomorrow and hope to get some major face time with Little Man Jonah. Can't wait to give you and Matt a mega-hug!!!

Tiffany said...

He is so cute!! I love seeing his eyes open! We are praying so hard for all three of you -- keep up the great posts - there are SO many people praying for you all and for a miracle for Jonah. Love you guys!

LoveLladro said...

He is just beautiful! We are praying hard for your family!

Rachel said...

I don't know your family, but I have been following your blog. Thank you for sharing your story. Jonah is just the cutest little thing. He makes my heart melt. I won't stop praying for your family and for baby Jonah.

Katie said...

At 3 days old is it possible to have the "if you don't quit taking pictures I'm going to drop-kick you in the face" face? Because I think that's what that look says. Don't listen, though. Not that I want to see you drop-kicked in the face, but I'm loving the pictures.

KAL071203 said...

He is beautiful! You are in my prayers

Diana Lopez said...

He is a great gift from God, Remember Proverbs 3:5,6 Trust in the lord with all thine heart and lean not unto your own understanding, acknowledge him in all ways and he will lead you through straight paths.

I'll keep Johan in my prayers, as well as you and your husband and rest of the family.

God bless you.

cecemeetsworld said...

I know you have done this.. but this thought has been with me since last night... all day. I feel so stupid writing this b/c it sounds so trite.. but I am not exaggerating .. all night, all day and just now in my quiet time with God.. I have had only one thought. Read 1Samuel ... read Hannah's story. Commit Jonah to God. Give him over completely and prepare for a miracle. I'm not saying raise him until he's weaned then drop him off at your closest church... but lay your hand on his incubator and give his body, his spirit and his future to Our Daddy.

*** For those of us following, we need to pray not just for Jonah and his family.. but for revival in the NICU. Lets all pray that God is ever present and moving through the unit and blowing the minds of all who are there to witness.***

We continue to pray for you and your beautiful family. ( Sorry if I just sounded so bossy)

CeCe Garrett

brightleigh said...

Patrice & Matt, he is so very precious. Bless his sweet heart. We continue to pray for you all. Much love to you.

Sherri said...

He is defintely a beautiful gift from God. I'm praying for you,Matt & sweet little Jonah.

Gentle hugs to Jonah!

Terri said...

Just wanted to stop by and let you know that I am saying prayers for your little guy! He is absolutely beautiful!

Ryan said...

I am a friend of Laura Sullivan. I just wanted to let you know that you and your family are in our prayers.

Sophie said...

Hello, I have only just come across your blog. Jonah is so beautiful. I hope with everything in me that Jonah's condition improves and you get to take him home soon.

All the best,

Sophie

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

Awww...sweet baby boy! Hope you know I'm praying for you. I know you don't know me, but I am praying for you every day!

avbernat said...

Even through the blurr, he is absolutely gorgeous.

A safe trip to your family.

Anonymous said...

Patrice & Matt,
We are so touched by your story - because it could be us writing your blog posts. Our youngest child, Caroline, was diagnosed with EB within hours of her birth, but we waited 4 weeks to know the exact sub-type, which dictates much about long-term prognosis. She wound up spending her first 133 days at Children's Memorial in Chicago. She couldn't drink from a bottle or syringe - she wound up getting a G-tube, which helped her tremendously although the surgery was scary. Seeing pictures of Jonah is like looking through Caroline's scrapbook. (She is now an amazing 3-year-old.)

Please know: 1) You already possess what you need to care for Jonah: great love and faith. 2) While we know the heartache and shock of having a baby born with EB, we have experienced countless blessings because of it as well. 3) The EB community is wonderful and here to help you learn how to care for Jonah. I would be so happy to share what I learned the hard way - to hopefully save you some time and stress with a few tips for managing the hospital setting, array of health care providers, and an overwhelming amount of information (from a Mom's point of view). 3) You are right - and have every right - to question the dr's, give opinions, etc. Trust your instincts. They don't know your child better than you do. 4) Despite all the equipment and bustle, Jonah KNOWS you. He really does.

We keep Jonah and you in our prayers. If you would like to communicate directly, we would welcome the chance to help. I don't know if email addresses are allowed here, so if you want to email or talk, just post a comment to let me know. In case they are, we can be reached at pandaprovo@aol.com.

Pete & Adrienne Provost
Palatine, IL

Jane said...

I also check your blog about 10 times a day, thank you so much for sharing. I look forward to your updates. He is a beautiful little boy and I am so glad he is taking some nourishment. We had our meeting tonight and prayers went up for all of you. Try to get your rest, so you can enjoy every minute of the day with sweet Jonah. I continue to pray for you as I have for over a year and a half now. May God Bless and keep all of you.

happyadoptingmom said...

Praying for Jonah!!!

Misty Rice-Baniewicz said...

Bless his little heart, soul and body. When I saw him, before reading your story, my first thought was that he had been burned some how. My heart sank. However, now I feel even more gulp in my stomach to see that he was born this way and they arent sure why.

I am praying for you guys.....

He is delicious.

I will send out my prayers worriers on this also...

Ill especially pray that you continue to have peace about this, and get plenty of rest tonight. Pray that baby boy will also continue to eat well on his own, that his breathing continues to stay steady and that he continue to fight until they can figure out what is wrong with him.

God bless your family.

Shelia Burlock said...

Hello Patrice and Matt,
You have not met me but I know your wonderful mother, Nelva.
My husband Donald and I are in prayer for baby Jonah. I think it is great the way you are documenting every detail of his amazing journey through your blog. Years from now, Jonah will be able to look back and read about how he was the center of the power of prayer of so many individuals. God does hear and He will heal. He can't ignore the multitudes of prayers going up for baby Jonah.

Londa said...

Lifting Jonah in prayer as well as praying for the rest of your family. God Bless.
C.O.L.E. Prayer Team
www.colesfoundation.com

Janel Waters said...

The blisters/sores on his face look like they are healing! He is just beautiful and perfect!!

I am so glad that Geri got in touch with you - she is truely one of God's angels! She is so nice and so helpful!

I am so glad that you got some Mepilex, I use the lite or the transfer almost every day.

At the last patient conference we received some adhesive remover, I have extra and would love to send it to you - it would help get the tape off of his face and hopefully help you get the O2 sensors on without fear and concern. As a previous commenter stated, every EB is different and things don't always work the same for every patient - but, you never know it might be the miracle for you that it is for me and I would really love to share that with you.

I hope that you all have a great day tomorrow! and as always - I will be praying for you and thinking about you!!

Janel

Peggy said...

He is adorable guys. Good to see him with his eyes open. He sure looks like a fighter to me. I pray non stop for him. God will hear our prayers. Peggy

Janelle Valone said...

He's so beautiful! I'm praying for you all. Stay strong!

LeeAnn said...

Still praying, loving the pictures, and can't wait to meet him!

May this scripture bless you tonight:

Psalm 116:7

7 Return to your rest, my soul,
for the LORD has been good to you.

Anonymous said...

He is a beautiful baby boy, and I am praying right now for your peace and for the snow to subside so that all necessary doctors can come in and meet that precious baby and get the ball rolling as soon as possible for all the treatment he needs. Hold strong to your Saviour. His word is VERY clear that there are VARIOUS trials, but it is also VERY clear that there is VARIOUS grace and there is perfect grace in Jesus to match this trial you are going through. It has all been filtered through HIS caring hand before ever reaching you or your child. He loves you with an everlasting love. Cling to Him.
In love,
Daisy (Alabama)

Amy said...

I check in on you guys often (and by often I mean 10 or 15 times a day!). I pray that you will have a peaceful night, and plenty of good news tomorrow. Thanks for sharing you baby boy with us all.

Katherine said...

M&P, I love reading the comments on the blog; I read each and every one. I just came back "for more" and read the one from Pete & Adrienne Provost and am so touched. I can only imagine what this new community of families is doing for you, and I'm so thankful that everyone is reaching out to you so lovingly. I know you've said that here and on FB, but I also want people to know that it's benefiting the entire family. What an incredible outpouring of love! You are on my mind and in my prayers every minute, and we love you guys so much. I can't wait to meet Jonah in person! (I had to laugh when I saw a commenter who typed "Johan," because the 40 or so times I've typed his name since he was born, I've done the exact same thing and had to go back and change it!) LOVE YOU SO MUCH!

Katherine, Grayson & the boys

mrs boo radley said...

So beautiful!! So entirely beautiful. Rest well, dear friends. You are in the palm of HIS hand.

Megan said...

Jonah is such a beautiful little baby. My heart is breaking for your sweet family. You will all be in my prayers...especially Jonah. May the Lord give you all the strength you need each and every day as He carries you through this.

cat said...

Hi Patrice, I just stumbled upon your blog via my friend Debi. Just to let you know that I will be praying for you and keeping you all in my thoughts, all the way in South Africa. Love and light to you, and remember, Our God is and awesome God.

jungletwins said...

What an angel! Sending prayers and good vibes. So glad Jonah has such wonderful parents

FattyPants said...

You and your beautiful son are in our prayers.

Jessie said...

Such a cute little fighter! As usual I pray! I'm hoping you get some rest tonight.

mommytoalot said...

Your precious son is in our prayers.
God bless
Lisap

Goldylocks said...

Praying for your sweet beautiful Jonah.

Shasta said...

I just found your blog via a prayer request on 4 little men and girly twins. It stuck out to me because I also have a Jonah, a 2 year old.

I've read your story from his birth until now and I've been praying the whole time. Your family will most definitely be in my prayers and I've passed this along to all my family for their prayers too. I'll be following along and praying for your little guy!

Bethany said...

I found your blog last night and stayed up quite late reading it. I will be praying for your precious son, you, your husband, and all who help you through all that you are dealing with. I can't begin to imagine what you are feeling. Will be thinking of you...

teresa said...

Please visit this web site as they also have a son around a year old with the same condition. http://jtsetsma.blogspot.com


He is such a beautiful baby and I know that God will be his provider as well as yours.

Cliff said...

What a beautiful son. I love and pray for all of you.

Baby Bird said...

Oh my goodness...baby Jonah is sooooo handsome! Look at those little eyes!
Praying for many more great things to come today! His mercies are new every morning -- And GREAT is our Savior's faithfulness!
Hope that you all slept well last night...and return to a hungry little boy:)
Lots of love - Aimee Pence

Michelle M. said...

This is my first visit to your blog. I will definitely be praying for Jonah. What a sweet little guy! I pray that God gives you all comfort during this uncertain time.

Our son was in the NICU after he was born, and I know how important every little milestone is in the NICU. I pray that Jonah will keep growing strong. You are in our prayers!

purejoy said...

so precious. so so precious!! he is beautiful!!
praying for your strength, for a pulse ox resolvement, for feeding issues, for dr wisdom, for medical breakthroughs and lastly, for divine intervention in a HUGE way!! i know God can hear every groan, and He is at the center of all of this. rest in his protective arms.
carrying your mat,
kimberly

SS said...

Commenting for the first time. Jonah is just beautiful. I am praying for you all. Your strength through this is amazing.

Ggainey said...

When I look at his pictures, those precious lips makes you want to just give him smooches. My name is Gail Gainey and Grandpa Gerry is my sunday school teacher. Please tell Granny Debbie hello and that I am praying for you all. It is a blessing to be a part of the sunday school class. I will continue praying for Jonah and all of you. With Love and Prayers!

The Burgess Family said...

Found your blog through Mindy and this is the first time I have posted although I have been reading a lot!!! Just wanted you to know we are praying for you guys from down the road in Raleigh/Clayton area. You are never alone...

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

Anonymous said...

you have such a beautiful baby! we are praying for yall. We love you so much! Please feel free to let me know if you need anything!

Erica McKnight

Lavonne said...

Checking in several times a day on Jonah. Stay strong and find comfort knowing so many are praying for him and your family.

victoriangirl39 said...

What is the matter? I'll be praying!

Diaz Family said...

I found your blog through another blog of a lady I have been praying for. I don't personally have a child with EB but my VERY GOOD FRIEND DOES! Mareyna was born July 2004 just a couple of weeks after by daughter. After over a month in the hospital she was diagnosed with EB and sent home. If you want more info or just someone to talk to you about these beautiful "Butterfly" kids, please let me know. She is very involved with DEBRA and can give good advice, a shoulder to lean on. I will give her your blog site as well. God Bless you all!! ~Neri (oadiaz@cableone.net)

Diaz Family said...

My very good friend's daughter has EB. If you want an understanding ear, advice or assistance with anything she is more than willing. She is involved with DEBRA as well. oadiaz@cableone.net

tardevil said...

What I pretty baby. I wish him all the luck he needs to get through this. God bless you all.

Anonymous said...

He's a beautiful baby! Are they talking about a stem cell transplant- I didn't know anything about EB until I looked it up and it was posted that maybe that could help. I am so sorry that your baby is ill but he is beautiful and God will hold him in His hand and cover you all with peace

Andrea Cook said...

We are sending prayers for you sweet son.

COLE Prayer Team - www.colesfoundation.com

www.caringbridge.org/visit/rileycook

Hugs of love, Andrea

Anonymous said...

Your sweet Jonah is a beautiful baby boy! His eyes are precious. It looks like he has his Daddy's eyes.

Continued prayers for his complete healing.

Jennifer
Brooklyn, MI

Hannah said...

He looks so much like you patrice.he is so pretty. I will be praying for him and so is my whole family!!

Hannah said...

He looks so much like you patrice.he is so pretty. I will be praying for him and so is my whole family!!

Anonymous said...

i found your blog thru coles foundation....i did a little research about your babys condition.i have 2 kids who have a very rare disease.the info i read said something aout treating EB with a bone marrow transplant.the university of minnesota did it..the reason i say this is both my kids have had a one marrow transplant at the university of minnesota...just wanted to pass this along...your family is in my prayers....jagators2424@yahoo.com

Amy said...

Matt,

Whydja hafta go and give Jonah all that HAIR! It's just out of control! :p

I love you guys! I want to visit this weekend if I can. I don't want to be in the way of you and your family, but I must hug you, Mama Tricey!

Amy Todd

Miss Cook said...

he is the most beautiful little thing i have ever seen - especially in that last picture; he looks like a gerber baby! :-) love you!

The Strosniders said...

oh sweetheart! he's beautiful!!! i don't have internet at home so i'm just now catching up on the news... i have been in prayer!!! and you are on the prayer list of my church here and back home. all i can really say, I LOVE YOU!!!!! xo

Millie said...

I'm continuing to pray!! The pics are so cute!!

LisaShaw said...

I just received information from someone to come over and pray for baby Jonah. I have read what you shared and layed hands on his precious photos and prayed over him. I also prayed for the needs you specifically requested.

We are all standing with you seeking A MIRACLE FROM ABBA FATHER IN THE NAME OF JESUS!

Jonah is beautiful and I KNOW, I am persuaded that GOD has a plan! His divine will shall be done.

With love and prayers,
Lisa Shaw

Debbie said...

my pastor's wife called yesterday to let me know that you'd been in her thoughts and prayers and to get an update. Know that sooo many are praying for you, Matt and Jonah. We love you!

Tammy said...

I received an email this morning with a prayer request for Jonah, and of course a link to your blog. Please know that your family, and especially Jonah, will be in our prayers. He is a precious gift from God, and God still performs miracles.

Ocracoma said...

Patrice, I know you are dying to play with Jonah. I know you can't pick him up right now but I found something that you might can do with him. When Macon was an infant (and they can't see too far or too well) I found this website full of pictures of black & white shapes. I printed them off and held them up for him to look at. He seemed to like looking at the different patterns and I thought maybe you could hold the patterns up for Jonah to look at. the website is http://www.sleepingbaby.net/jan/Baby/mobile.html

I was just trying to find another way for you to "interact" with him and stimulate him while he is in NICU. I hope you find this helpful.

Anonymous said...

I just wanted you to know that we are praying for you. Even though I am a mother of 2, I have to say that Jonah is absolutely adorable. He has got to be one of the most beautiful babies out there!

The Burk Family said...

You have an absolutely adorable son!!
Stand firm in your faith! Hold on to our Hope...Hope began a man and died for this very reason...to bring healing to little Jonah!

Miracles Happen! They happen every day! Hold on to Hope...Hold on and never let go! For...

"Hope maketh not ashamed: because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us." Romans 5:5

We are praying!
Dana Burk

Mocha Mama 24 said...

I'm here via Mckmama. I've been praying for little Jonah and will continue to pray for you and your family as well.

Carebear said...

Just found your site today through Bring the Rain. Jonah is ADORABLE. I've posted your prayer button on my blog and will be praying for him myself. Our God is amazing and works miracles all the time. Hang in there!

The Rice's said...

We're praying hard for Jonah!

smith fam said...

Patrice -
Last week I saw pictures of you in the hospital posted on facebook and was so excited for the arrival of Jonah! I am glad that he made it safely here, but heartbroken at the challenges you have before you. I know I haven't seen you since high school, but I want you to know I am thinking about and praying for you guys constantly. May God bless your family in every way.
Love,
Natalie Davis Smith

Devon said...

praying for your sweet son...

i lost twin boys in march of 2008 and i couldnt imagine the thought of another baby and maybe losing that one too...

know i am thinking of you and praying for you...praying you get to bring your jonah home!

Amy said...

Your beautiful baby Jonah and your family will be in my prayers.

Michele Williams said...

He is so beautiful... I certainly will continue to pray for him and your lovely family....

andnotbysight said...

I'll be praying, too!

Chrissy said...

I found out about little Jonah through a friend of a friend. After reading your story and seeing the pictures of your darling boy I realized how much I take for granted and how difficult life can actually be.

There are no words that can express how my heart aches for you all, especially that sweet, innocent child. My prayers are definitely with you during this incredibly trying and stressful time.

Psalm 37:4 seems to help me when my life experiences take me down a path that is scary and unpredictable. I hope you find comfort in those surrounding you and in knowing that God is holding sweet Jonah in the palm of His hand.

--Chrissy

Stacye said...

I will keep Jonah and the entire family in prayer! He is beautiful!

Kim Walters said...

Patrice, my daughter Brittney was one of your students at South Central. She is now a senior at ECU and she passed along your blog...I just want you to know that you, Matt, and Jonah are in our thoughts and prayers.

Kim Walters

j3k said...

Oh hon I hope things are going good today and you are getting answers. I pray that Jonah is taking his bottle with little spit up and that the doctors are able to come together and work on a treatment plan that works best for all of you. Prayers and Love coming your way in bundles today!

Hearts and Hugs
Marie

Stephanie said...

I have fallen in love. Don't tell my husband. ;)
He is absolutely gorgeous.
PRAYING!!!!!!!!!!!
If only we could peel back the curtain and see the angels in that room. Singing over him... and YOU.

"The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.”
Zeph 3:17

May You hear His love song for you and Jonah and quiet you with His love.

Melody said...

He is a beautiful precious baby boy! I am praying for little Jonah and for your family.