Monday, January 19, 2009

Monday Night Update

First thank you to Lianna and to Shaila for the buttons! Please feel free to add them to your blogs to spread the word about Team Brayden!

Thank you all so much for your continued prayers! Brayden has had another good day! They've begun to wean him off his oxygen and when we left tonight he was down to 93%! Woo-Hoo! When he gets down to between 20-30% they will begin to wean him off the nitric (I was calling it nitrous, opps).

The one piece of possibly bad news we received was that after they wean him off the nitric he will need a brain MRI. There is a possibility of some brain damage, we don't know to what extent but our nurse said that she didn't think it would amount to more than developmental delays if anything, but it's hard to tell at this point.

We received some very thoughtful gifts from bloggers today, and I really want to thank you all. That was so unexpected and so kind of you!



I have a few pics to share as well:

This is Chris and I today with Brayden at the hospital - he is holding onto my finger!!!

Here is a pic of him holding my finger (his billi lights are on):
Downstairs at ACH is this mural:




This is Angel One, the helicopter that transported Brayden to ACH. This was taken at about 1am on 1-14 when we arrived at Willow Creek to meet the ACH team that would be transporting him:

This is the Angel One t-shirt they gave Brayden for flying with them, and that little thing at the bottom was his bracelet from Willow Creek:

One quick story: Dr. Arrington, the one who started the NICU unit at ACH approached us this morning (which scared me because I knew he wasn't Brayden's attending) and then he smiled really big and shared that his daughter in Wisconsin had found my blog and saw that her dad was treating Brayden the other night and asked him to check in! How cool is that?! Dr. Arrington's daughter - if you are reading this - that was just so cool! Thank you and thank you to your dad, without him I really don't think our son would have made the turn. Dr. Arrington really has a gift from God for treating these babies, and I am so, so thankful to him. God bless your family.

80 comments:

Rachel E. said...

SO glad to hear that Brayden is improving! He will continue to be in my prayers. Thank you for allowing us to share in this journey with your family through your blog.

Team Griggs said...

Your little boy is so sweet. I love the picture of him holding your hand. I will be praying for you and your family.

jeanetteb said...

Jenna,
I am new to your blog and just LOVE it!! Just want you to know that I have the ENTIRE teaching staff at Jourdanton Elementary school (where i am a kinder teacher)praying for Brayden! Hang in there. I was in your shoes 13 years 4 months and 11 days ago. My son was born at 39 weeks with lungs that did not develope. It was a tough, long road. But, GOD is good and I now have a 5 ft 10 inch 170 lbs. soon to be 14 year old sassy teen, but we are so happy that he is here with us, we are BLESSED! May GOD Bless you in a even better way! :)
Jeanette

FBC Bentonville 4W said...

The women of 4W Women's Ministry are praying daily for you all and send their love. FYI - Jennisa also made a button for you for Team Brayden. I've forwarded the info to Grandaddy Horton's email.

mumameee said...

Thank you so much for the update & beautiful pics...my fav is the one of Brayden holding your finger :) Hoping & praying for even better news tomorrow!! xox

Anonymous said...

I am so happy to hear that Brayden continues to improve. We will keep praying here until you bring that baby boy home! The pictures are great. The one of him holding your hand brings tears to my eyes. One day you can show him these pictures! I pray that tomorrow brings good news as well.

Pierce Productions said...

Hi Jenna & Chris. Stumbled upon your blog & it brought many memories flooding back from 2 years ago. Our daughter Morgan was born on her due date but had problems with her first breath. She inhaled a TON of amniotic fluid and ended up putting holes in both her lungs causing her lungs to collapse. She was put on a ventilator and ended up being shipped from our small hosptial in the U.P. of Michigan to Green Bay WI. Since it was way too windy for the helicopter she had to go the 2 hour drive by ambulance. When the NICU team first got to our hosptial they checked her out & relieved the air from her chest cavity with a needle (the medical term is escaping me right now). Within just about 4 hours and a TON of prayer the tears in her lungs were mostly healed but she was still having trouble breathing & the NICU doctor suspected Laryngomalacia which turned out to be correct but we had a long road in front of us at the NICU that we weren't exactly prepared for. Our 2 older children, ages 2 & 4 at the time had to stay a month with my parents. It was hard on all of us but the best feeling was that we had so many people, so many churches praying for us and like you said, we could 'feel' the prayer. Morgan was given steroids, they thought she had some infection so they started antibiotics, she was cleared of the infection or it came back negative after more tests and eventually she was weaned from the vent. I must say that I think the hardest thing I had to deal with was not being able to hold her when I wanted & for how long I wanted. And when I was able to hold her I had to be careful of all the hoses & junk attached to her. I sort of didn't feel like her mom even though I for sure was. And then one of the nurses told me all the things I could do for her if I was there at certain times. I ended up changing her diapers, & blankets when possible. When she started getting the breastmilk I had pumped, I was able to hold the gavage tube for the feeding. I read to her, sang to her, & touched her as much as I wanted as long as she didn't get all crazy & wild, which she was good at without my help. She was heavily sedated & despite that she ended up pulling the tubes from the ventilator & other things out a few times. And it never failed no matter how sedated she was, when we'd come in & say hello, she'd open her eyes to see us. I'm sure they gave you guys specific reasons why they didn't want you to talk or touch Brayden and I do hope that has changed because I truly believe that familiar voices & touch (along with prayer) is what helped our Morgan out so much. Till this day she is a very touchy feely little girl. She is all better though we are dealing with asthma symptoms now but that is very treatable. I have pics of Morgan holding my finger too & they are precious beyond words.

I guess by sharing our story I just wanted to encourage you that when you can't hold or be with Brayden, that God is there holding him, just like He did before he was sent to you & if you have nurses like we did, they are sent by God as well. It seemed that when she was most critical we had these wonderful nurses who attended to every detail, showed great confidence in her skills, and was very encouraging to us. Then as she got better & moved into other NICU rooms, we had nurses that were still very attentive but in other ways, like being able to get her to feed from a bottle. Taking the time & having the patience to get her to accomplish that transition from gavage tube feedings to bottles. And then as she was getting closer to leaving the NICU we had nurses that encouraged me to breastfeed and went over everything we needed to know for when we left. Yes I realize that the nurses were probably scheduled in different rooms depending on their talents & skills but I believe that God gives us those talents and skills and He knew exactly what we needed at each of those times.

So hang in there. I am pulling for Team Brayden. Love the idea of t-shirts & the button is cute & a great way to share your adorable little boy's prayer needs. Make sure to take the time for yourself & Chris to get the rest you need so when it is time for Brayden to come home you are recovering nicely. if you have any questions about NICU life beyond what you've already experienced or if you just want to chat with someone who had a similar experience let me know. I'm often on the computer throughout the day as I am a SAHM. I will continue to pray for your whole family as well as the doctors in charge of Brayden's treatment plan. Blessings

Kate said...

Continuing to pray for Brayden and I'm thrilled to hear he's continuing to improve. Praise God!

I'd like to offer encouragement about the MRI ~ it's a piece of cake for a baby. They'll sedate him and the scan will take about a half-hour. My youngest has spina bifida & had his first brain & spine MRIs at 2 days old and has been scanned regularly since then. There's no radiation in MRI scans, so there's no need to worry about that. (((hugs)))

I hope your little guy keeps moving in the right direction for you all. He's adorable!

Anonymous said...

I have been praying for Brayden and Harper since Sat. morning. I found Kelly's blog on a blog I read regularly and then found your blog through Kelly's. The picture of him holding your finger is the most precious thing. He knows you are there for him!! I know you know how good our God is and that He is with Brayden, you, and Chris. It is a privilege to pray for you.

Barbara Taylor
Hot Springs Village, AR

Maegan Kufahl said...

Jenna. i love you so much. I can't wait to hug you on Thursday. I love the pictures of Brayden, he is so sweet, and I love that he is holding your finger! a mamma's boy for sure. Hutch and I are praying, praying, praying. We are pulling for your precious baby boy! I'm sending you my biggest hugs. Hold tight to Jesus! He will be enough. I am praying that you can rest well tonight. I wanted to tell you what happened tonight...the babies pray for Brayden every morning and every night. Tonight as I was praying with Kash, he closed his eyes tightly, and said, "Jesus...Bayden, Jesus, Bayden." I know he din't know what he meant, but I know Jesus heard his sweet prayer for his soon to be best buddy!!! Love you my sweet friend.

Heather said...

SO thankful to hear the good report! We are still praying! Please let me know if you need anything!

Momma said...

I know how you feel, but having faith is the best thing you can do. My son Wyatt had pphn and was in the NICU for 72 days. He was so sick he could not be air lifted to Sick Kids Toronto or the IWK for sick kids in Halifax, so the fact that your little one could be transported is a wonderful sign! Wyatt had the mri done too. The first one came back as incrediblely bad news. BUT, the second one came back as being "normal." It was really hard to wean Wyatt off the nitric and when I saw him take his first spontanious breath on the machine, (it registered as an extra breath on the graph, in purple) it was ... amazing! So much happened to Wyatt that was not "typical" with his treatment. His liver became enlarged due to the TPN they were giving him. His billi went up to 523. Boarderline "fry your brain" as one nurse told me. If you need to talk to someone who's been there recently, please come visit Wyatt and me at http://www.babywyattsstory.blogspot.com

I'll pray for Brayden too.

Liz said...

I've been reading for a few days now, but haven't commented. I just want you to know I am praying for your family. I added Brayden's button to my blog today. Thank you for sharing your strength courage and faith with all of us.
Liz

Kathy said...

Jenna, You and Brayden have been in my thoughts and prayers today as I've read your blog a bit and checked for updates. What a faith-stretching, trust-building leg of the journey you're on! One thing that encourages me when I'm praying for my kids is to put their names into Psalm 139:13-18~like in vs.17&18: "How precious to Brayden are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When Brayden awakes, he is still with you." Psalm 139 is a personal favorite for me. I hope it blesses you today.

p.s. I'm glad my Dad could be an encouragement to you today. He's great at what he does and genuinely cares about the NICU babies and their families. Also, he's a believer in Christ, so you share a common source of strength.

praying in Wisconsin,

Kathy Arrington Christiansen

Jessica said...

I'm so glad that Brayden is improving even more. Of course the prayers will continue. Take care of yourselves too!

Love to you!

Amanda said...

I love the family photo of all 3 of you!!! Great news of his improvement. I am glad you are feeling lifted up in prayers.

Kendra said...

I LOVE that story about the doctors daughter!! HOW COOL!!!! God is just so good, He cares about every little detail of our lives!!
I will be praying about the MRI...the longer we wait until it can be done, the more time to pray!!!!!!!!!!!!!!
I loved your family photo =) Beautiful!

Anonymous said...

Praying for Brayden in Canada!

Anonymous said...

I'm so happy to read that Brayden is improving! We will continue to lift him and his parents up in prayer. Kym (MS.)

Roxanne said...

So glad that the news is good and that he is stable. Blessings on you and your boy.

Pam said...

I love the photos of Brayden! Praise the Lord for the improvement he is making.You are in my thoughts and still praying!
Pam

Kelly said...

We still are praying for you here in Dallas. Stay strong. I am so glad to hear that he is improving. Keep us updated!

Lisa said...

I am just so happy that you are finally able to touch your sweet boy... seeing his hand holding your finger was enough to bring tears to my eyes. Still praying daily for your sweet boy!!

~ Lisa (Ohio)

corykatenoah said...

Jenna, I found your blog via my sister in Tennessee. My husband and I were in your shoes just 9 years ago this March 13th. Noah was the first baby to meet criteria for the experimental drug Nitric Oxide at the time. They actually travel worldwide with a notebook on him using it for other babies. To see that Brayden is one of those babies whose life is being helped, we are so touched. Noah did have heart surgery but fought long and hard and was on the nitric for a long time. He is now a very smart young man and very active considering. Just know that there is hope. God is in control and He will find favor in little Brayden just as He did our Noah. I would love to talk to you more if you wish. corykatenoah@yahoo.com
From North Carolina, lots of love and prayers, The Mason Family....
Missy, Matt, Cory, Kaitlyn and NOah

Stuart and Sarah Creamer said...

Thinking of you and your family! Praying for healing! God is good. Take care of yourself!

Mandy Rose said...

I am so glad to hear that your lil man is doing better and improving! I will continue to keep you and your family and lil B in my prayers.

I love that he is holding your finger in the pic...so sweet!

Those Crazy Clarks!!! said...

Still praying for you guys! So exciting to hear your good news. It will just keep getting better!

Anonymous said...

What a precious picture of him holding your finger! We continue to pray in Arlington, VA.

hjoy said...

We are praying for Brayden. Such a sweet little guy. The pictures are precious.

Lacy said...

Hi Jenna from Texas! I found your blog through Kelly's and wanted you and Chris to know we are praying for you and Baby Brayeden. I linked to your blog and have asked my readers to join me in prayer for Team Brayden! I have no idea....but my heart breaks for you,, yet smiles to see youand your precuous husband filled with hope and the love of the Lord. Brayen and Baby Harper are going to be Gods little Arkansas Miracles!!!

Kathy said...

Precious, precious, precious...

What a gift!

Continuing to pray for that beautiful boy. Praying you find comfort in knowing he is being lifted up.

Blessings and love from our family.

Jessica said...

So happy to hear he had a good day!

Drama Queens said...

Here from Angie's blog. Praying for you from Idaho!

Kelli said...

Just wanted to let you know one more person is lifting you to the Father.

Kelli in Kentucky

Sheryl said...

I've been praying for Brayden! I put his button on my blog. Glad to hear he is improving!

Sheryl

Mary said...

What a great report! Continuing to pray for Team Brayden!

James Thomas said...

Good luck Team Brayden. Reading your posts is a bit like looking into a mirror. My son is in a NICU in Minneapolis 14 days into his journey after being born before 27 weeks gestation. He has a procedure Tuesday morning to close the PDA in his heart. I will add Brayden to my prayers tonight as I pray for Finn. God bless.

Jim
jimandstacyt.blogspot.com

Jennifer said...

I love the bili picture. I got to your blog through Kayleigh's blog. My son was in the NICU for 12 days and 6 of those days he was under the bili lights so that picture really touched me. I will pray for your little Brayden!

Patsy said...

So glad to hear ya'll are better. God is hovered over that little man and healing him. You and your family take care of you self. Praying for continued good progress. God bless ya'll!!

Lianna Knight said...

Great news! I am so glad Team Brayden is continuing to get better :) He'll be home before you know it!

Kyndal said...

So glad to hear your little miracle is doing better. What a fighter! I know you are so proud. Can't wait to read more good news soon!
Love and prayers.

Jenn said...

Seeing you guys able to hold his hand just brought me to tears. I am so glad you got to touch your little boy and I hope this is the start to many wonderful moments like that for you. As always, continued prayers for strength for you all, both physically and emotionally.

The Allens said...

I am so glad you got some rest - I can really tell the difference in your post. I was worrying about you. Brayden has many, many prayers going up for him. Stay strong and faithful.

Jenn said...

I have put your buttons on my blog to encourage even more prayers for you but cannot seem to get it on my blog other than cut and paste, which does not allow a link to your page that way. Do you know how to do it so I can link to your page? I don't want to burden you with telling me how to do this in your very busy time but I am asking if another blogger out there can help me. I want to get as much prayer for little Brayden as possible! Thanks!

Stephanie said...

I'm new to your blog and just wanted to let you know that I am going to pray for Brayden!!!! I'm adding your button to my blog also!!!

Stay strong Brayden!!

Brenda said...

Praying for your little one. What a precious baby. Found your blog through Our Journey of Love.
Just as your baby is holding your hand, God is holding Brayden in HIS.
Hugs, from IN>

Heather said...

I just wanted you to know that I am praying for your precious baby boy. Even though we are strangers, you are in my thoughts at all times! My heart goes out to you and your husband!
Heather (Ohio)

Sarah said...

Jenna, I am beyond happy that Brayden is doing better! I know that you waited so long for him, and it's been hard to go through this, but hang in there. Sending prayers and best wishes your way!

Momof4 said...

Still praying for him and for you and your husband! May God move mountains and heal your baby boy!

Jaci said...

I am glad to hear good news today that he is getting better. He is so cute. keep the updates coming and we will keep the prayers coming.

Heather said...

Brayden seems like such a little fighter! He is in my thoughts and prayers. It really is a small world. That is amazing about your doctor and his daughter!

Harris Family said...

I am so glad for all of the improvements. I will continue to be in prayer for not only Brayden and his health, but for you and Chris as well. I know how exhausted you must be. Hang in there. Know that so many people are still praying!

Katy said...

I'm so happy to hear that Brayden is doing better. Keep the faith! I love the picture of his little hand holding on to your fingers. So sweet! I will continue to pray and spread the word through my blog here in the Dallas area.

Verna said...

Praying for you.

Brooke said...

So wonderful to hear that Brayden is getting better. God can do all things! Continue to grow closer to him and to one another. Being a parent is a true miracle from God. He will see over you all and protect you just like he said he would. May God bless you all.

Ris said...

As a NICU Mama, I can understand how you are feeling- NOTHING more terrifying than when those machines start beeping and the nurses rush over. God is so much bigger than anything that happens to us and it's comforting to know He is in control! Please know that I am praying for your son's complete and perfect healing, incredible growth and for peace for you and your family.

Janelle said...

thinking of you & praying for you today! that Brayden would get stronger, and that you would feel surrounded with prayer! blessings!

Emily said...

God is great! So glad to hear that Brayden is improving! That is wonderful news! Continuing to keep you guys in our thoughts and prayers! brayden is one lucky lil guy to have soo many prayers coming his way!
Is there an address where we can send cards and stuff too??

Kim said...

Hi Jenna! I've been following your blog through Kelly's since you both became pregnant - just wanted you to know that I'm praying for little Brayden. I'm also praying for you and your husband to have the peace that only the Lord can give!

Kim in Salem, OR

Danielle said...

Praising God for the improvemnets that Brayden is starting to show. May God continue to bless you all. Remember that when you feel to weak or tired there are MANY praying on your behalf. God Bless.
Thank you for all the updates.

Kristi said...

What a precious little boy!! I will be praying for him.

Anonymous said...

Jenna

I found your blog via another blog and wanted you to know I am praying for Brayden and for your family. I was in the same place you are 10 months ago. My baby had Pulmonary Hypertension and was seconds from ECMO too. Wanted you to know that he is doing great now and didn't suffer any problems from the high volumes of Nitric.

mrsrubly said...

praise god for the great news.

Rachel said...

I'm so glad Brayden is doing better!

And what a wonderful story about the Dr's Daughter reading your blog. The blogging world, in my eyes, is simply amazing and so supportive in times like these.

Your baby is just beautiful

Rachel
lovefor9.blogspot.com
luvfor9@gmail.com

Anonymous said...

I just wanted to tell you that I am praying for all of you. I found your blog thru Kelly's blog, so have been for Brayden and Harper together. They will have plenty of stories to tell when they get older. Your baby is beautiful!
Karyn from Florida

JulieandRyan said...

Jenna,
I am praying for you and sweet Brayden!

Michelle in Pittsburgh, PA said...

What an amazing answer to prayer. I will keep praying and believing God for a complete healing of little Brayden.

Laurie said...

We are thinking about ya'll and praying constantly! I am so happy for the good news! It is going to continue!

Carissa said...

Praise the Lord for Brayden's improvements! I found your precious blog through Kelly's, and I just want you to know that we are praying for Brayden's complete healing. My nephew's name is Braeden, and we recently had a baby, so your story has been special to me. Love and prayers from Cleveland, Tennessee!

Carissa

Susan said...

Continuing to pray for you from Lake Saint Louis, MO. I'm so encouraged to hear that prayers are slowly, but surely, being answered. The picture Brayden's little hand holding your finger is precious beyond words! Always remember that while you can't hold him, God continues to do so, waiting for the time when your arms take over.

Anonymous said...

Our son was on max settings of nitric for nearly 2 weeks and then remained on the vent for 4 more. He's now a very smart and active 3 year old.
Praying for you and your sweet baby boy.

our family said...

Continuing to pray for your sweet Brayden.
Hugs and Prayers
Rachel in PA

Chris G said...

I just came across your blog. I am so glad to hear that things are improving for Brayden. My daughter was in the NICU for the first 5 days of her life and had her first surgery before she was even 24 hours old. We then ended up back in the NICU due to an airway obstruction (trauma from being intubated) when she had a VP shunt placed at 3 weeks old. I will be praying for your sweet baby boy and your family! I pray that God's love will envelope you and keep you over these trying days!

Anonymous said...

Jenna, I'm not sure if you remember me, but I heard about your sweet little boy and I just want you to know that I'm praying daily for him. God's care and provision will always be there for you, even in the most desperate and toughest of circumstances. Praying that little Brayden will continue to improve and for a clear MRI scan and recovery to full health! Much love, Gracexxx

Leigh said...

Praying praying praying for your sweet boy!

Heather said...

Sending lots of hugs & prayers to you from Southern Illinois!

What a blessing that Brayden continues to improve!

Rachel said...

Great news that he is doing better!! Somehow I missed this update last night!!!!!! I love the pictures, especially the family one! Before you know it, he will be home with yall!! Still praying...

The Carter Family said...

Hi! I absolutely LOVE the picture of Brayden holding onto your finger with the Billi lights on! So precious! It brought tears through my eyes!! Stay Strong and know several of us bloggers are praying for y'all!!

ashleigh

tootie said...

I'm glad to hear he's doing better! My prayers are still with you!

Anonymous said...

I came across your blog from a friend of mine's facebook that led me to Kelly's blog, which led me to your blog! I can't imagine what you and Kelly are going through right now with your little one's. I pray that your son has complete healing and doesn't have any long term side effects. I pray that his MRI comes back completely normal. God is amazing and through Him, Brayden will be healed! :)
April Clarke- Springfield, Mo

Related Posts Plugin for WordPress, Blogger...
 
Blogging tips