Monday, March 2, 2009

jonah - monday, march 2nd

I refused to go home last night because of the rough night I had before and just had some pretty bad anxiety about leaving Jonah. Plus, it was supposed to snow, and I didn't want to get stuck away from him. We were offered a free hotel room and a couple different places to stay, closer by than our house, but I literally did not want to go farther than the waiting room. And then God gave us a sweet gift - a family suite back in the NICU opened up very unexpectedly, and we got to stay EVEN closer to Jonah than the waiting room.

Not much news to post today. It was frustrating this morning when it was quiet around here and I had so much time to post, but the internet was down. We just all sat around, not knowing what to do with ourselves. We tried this weird thing called talking. It's growing on me.

I did get to talk to the leader of the NC EB support group, and she was awesome! She did express some concerns to me (as many of you have) about some of the treatment choices for Jonah, but the doctors are so great when I pass along your suggestions. We so appreciate that you care for him and love him so much. I spoke with Dr. Wade at length last night about some of my concerns, and he took so much time listening to my concerns. He did look into the mepitel/mepilex bandages, and guess what? Jonah is now wrapped in triple antibiotic ointment and the new bandages. AND, he's agreed with me (you) that it would be good to only change his dressings once a day instead of twice, and that order is now in place too. AND we tried the Haberman nipple last feeding. Not any additional sucking on his part (and by that I mean that he was TOTALLY uninterested), but it did seem that maybe a little less dribbled his mouth. We're only giving him 5 cc's right now (until the GI doctor checks him out), so I figure he's getting very little to eat at all. Please continue to pray for this situation. I am willing to exhaust every possibility before we result to a feeding tube. I'm in the process of reading all your comments, and if you have EB experience, will pass them along to our doctors.

As far as the humidifier is concerned, we know this is not a great option for Jonah in that it could promote skin breakdown, but per a specialist doctor in Chapel Hill and Jonah's doctors here, we have to do this now to keep his body temperature up and prevent dehydration. Everything is a double-edged sword with his current condition. He is so fragile and so much of his body is raw and unprotected, his options are very limited. We rely on prayer and faith to fill in the gaps.

He still needs to be seen by the GI doctor, the ENT, the optholmologist (Wed), the pediatric surgeon, and the geneticist. Today was slow as far as consultations because of the snow. Many people didn't make it in to work. I'm hoping he'll see the GI doctor and the ENT tomorrow since this will affect his feeds the most.

The one thing that I'm really, really scared about is that with all the ointment and new bandages, there is NOWHERE on Jonah's body to put his pulse-ox monitor. They've tried so many things. I'm going to push this tomorrow at rounds, because I don't even feel like I can leave the waiting room without his oxygen being monitored. After Saturday's episode, I'm just not willing for this to go unmonitored. The nurses are doing a great job keeping an eye on him, but they can not be staring at his face or watching his coloring ALL the time. It's just not feasible.

My sisters want me to start doing daily shout-outs, so here goes:

- to Geri, the nurse educator from DEBRA for being so awesome and easing a lot of my fears
- to Stacey, Connie, and Brook, Jonah's nurses who are taking such great care of him, and feeling his pain just as much as we are

- to Susan who made the whole waiting room laugh out loud with her comment about Ambien making her "jump off a horse" into her bedside table and hurting her "bum."

Jonah being cute -




53 comments:

Beth said...

There are no words, just know that you are in our prayers!

I found you through BoufMom9 (Debi's)blog.

Beth
Ohio

Joanna said...

YAY! I'm so glad that you were able to get a picture with his eyes open. He is a total knockout! What a cutie-pie! Thinking of you and praying for you!

Joanna

Holly said...

Came across you through MCKMama. Sending up prayers from Georgia. We too have an NICU graduate. We went through some of the feeding issues but finally did resort to a tube in our little one's nose but it was only for a short time. Sorry I don't have any other suggestions regarding feedings. Blessings,
Holly

Queenie. . . said...

Just wanted to let you know that I am thinking of you and praying for your family.

Carrie said...

Here is a very promising article. Praying for your little one.

http://www.sciencedaily.com/releases/2008/06/080603120246.htm

Lauren said...

finally, we get to see those gorgeous eyes! so glad that the suggestions and information is helpful and that jonah is getting the proper treatment. i think his cheeks look rounder... just imagine when he starts eating for real!

Jenilee said...

I have been following your story for the past few days and my husband and I are praying for you, this precious baby boy and your family. Know that you are in our prayers and God is holding you all in the palm of His healing, merciful hand.

Thank you for the updates. Little Jonah has been on my mind all day.

Isaiah 43:1-3

Joan said...

Came over to read after MckMama's tweet! He is just the sweetest little mummy ever. Wanted to let you know I was praying for your little guy.

Enjoying the snow in Durham!!

Amy said...

Britt sent me this today:

http://www.debra-international.org/

<3
Amy Todd

Katie said...

YAY for eyes open pictures! What a cutie. :) You should so pretend that every day is Halloween and put a "trick or treat" bag by his isolette with a sign that says "My mummy is cuter than yours." So many great meanings there. :)

Anonymous said...

How wonderful that you were able to stay in the NICU last night...and be so close to your baby boy. Jonah is a beautiful little boy and looks to be quite a fighter. It is great that the doctors are so receptive to your suggestions and ideas and Jonah is responding favorably to the changes. Praying that Jonah is able to eat and he stays strong.

Gail
Annapolis, MD

jandkland said...

I'm glad you are able to find a few positive things to give you hope and joy. Jonah is so amazingly beautiful and extremely cute and I'm very sad that he is suffering. This is just such a frightening condition. We don't think about how much our skin does for us. Thank you for letting strangers like me see your precious boy and bear a little of your burden by praying for you. You are such a wonderful advocate for your son.

--Kelley in Georgia

j3k said...

I'm still here on bended knee. I want you to remember one thing: YOU ARE HIS VOICE!!!!! You are doing wonderful. I have a sick daughter who is now 16 and I have lived in and out of a hospital with her since she was a baby and I understand the long days and nights with the drs. It can be very frustrating at times but the one thing to always remember is Jonah is a baby and no one can speak for him and you are his voice. If your gut is telling you something then go with it. I just know when it came to my child and my gut it was always right! There were times I would just sit and watch every breathe my daughter took just because I could and that is ok. My prayers are with all of you.

Hearts and Hugs

Marie

Katie said...

Hi sweetie,
found your blog off of anothers. I just prayed for your sweet son. I'm so sorry that all of this has happened. I know that he is going to have a testimony and he will be able to know God in a big way. You two are amazing parents. May God continue to be with all of you.
Love and prayers,
Katie <><

avbernat said...

He is beautiful!

And big hug for you for speaking up and looking out for you little man. Many Many Many prayers are going to you for Jonah... once again, we are looking forward to the day that you can hold sweet Jonah, warm in the arms that love him... where he belongs.

Rose said...

Sweet Jonah is changing every day! He is just precious. Is it just me, or does he have way less lesions/blisters?

Doug and Liz said...

Today was a snow day- spent a lot of the day praying for Jonah, you, and Matt! Praying for healing and peace.
Elizabeth

Threeundertwo said...

Thoughts and prayers for Jonah and your family. Stay strong.

The Nicholsons said...

Patrice- I don't know you but someone passed your blog my way. I have sent a prayer request to our church and its also posted on my blog. I am willing to get as many people as I can to pray. God works in mysterious ways and the more people that pray, the better! I pray for little Jonah to have the strength to fight, fight, fight. It sounds like he's well taken care of by the hospital staff. Love to you all!

Sara said...

First I want to say I am happy the doctors are willing to try the new bandages!

I do have two questions/concerns. Besides the pain meds, his Jonah receiving any fluids from is IV? In the pictures you posted tonight his face looks really swollen. If he is receiving fluids, then the swelling could be from that. If he isn't, it could be cause for concern. Sudden swelling of the skin can cause it to break down more.

Second, has he had any blood work down to check his blood counts, iron levels and electrolyte levels? it is very important to keep an eye on those in patients with EB.

As for the pulse ox, is there no place to put it because of the missing skin? or because of the bandages? You can cut the sticky part off of it and use something called Mepilex Lite or Mepilex transfer to hold it in place. Two years ago my daughter had surgery and was in the hospital for 5 days and we cut the sticky part off, put the pulse ox on her ankle, wrapped transfer around it and her ankle and then taped both ends of the transfer together but without touching the skin. It did shift a few times and fall off, but she was 4 and a bit more active than a newborn would be and we'd just adjust it and it would start working again.

Julia said...

Patrice,

I ran across your blog a few weeks ago and then again this past weekend. Your family is in my thoughts and prayers. My heart goes out to you and your family during this rough time.

Julia

Stacie said...

Here via L&F.

Sending love, prayers, and strength to you and your family. Hugs.

Anonymous said...

Praying for you and your family. I don't know if this will work but I've seen adults with the pulse ox on their earlobes...
God Bless!

Anonymous said...

Hi Patrice and family - I don't know you at all, but have friends who have had 2 EB babies, and was informed of your prayer needs through them. I just want to send encouragement and prayers your way... praying when I'm not even sure what to pray for. As a mother, I can't even imagine what you are going through, but you seem like such a strong person... I will continue to lift up Jonah and your family and believe that God will heal!!

Emily Eggebraaten, Sioux Falls, SD

Baby Bird said...

Still praying for you all...in fact, Paul and I were talking this morning during our devotion about you guys and come to find out he thought Matt was the baby's name and he was like WELL...I've been praying for the wrong person!! Then I told him that everyone is probably praying lots for Patrice and Jonah...and Matt must really need his prayer because I think God knew that and made him remember Matt's name...so, just let Matt know that Paul has been HIS prayer warrior for the past several days:)
Love, Hugs & Prayers! Aimee

Maddy said...

Bless his heart..and yours. I don't ermember how I came across your blog but my heart goes out to you all. I will continue to keep you in my prayers and that somehow, someway, he either has the more mild form, or the transplant will be his cure in the very near future. Please know I think of you all often and look forward to your updates. He is a beautiful boy (I have two of my own) and I hope you get some good news soon.
Maddy

Kinsley said...

Oh, Patrice and Matt...what a beautiful little boy! As you know our lord is a gracious one, and I hope He is easing your pain as well as Jonah's. Please let me know if I can do anything.
Kinsley

Connie said...

Hello Patrice

I am the grandmother of a sweet baby girl who has ebs dm. Just wanted you to know that we are praying for little Jonah and your entire family. We know what a scary time this is for all of you.

I see from your post that you have already been in touch with Geri from Debra and feel sure that you are getting good advice. When our grandchild was in Chapel Hill the doctor and nurse educator told us that the best advice we would ever get would be from the parents of eb children. They were right.

There are many people with much more experience than I have on some of the online sites who are wonderful and willing to help should you ever have any questions. Your little Jonah is already known in the eb community and many are lifting him up in prayer.

Wishing the very best for your little one. And praying for peace and strength for you.

Connie Holland
Wilmington NC

*jcg said...

We don't know each other, and I don't even really know the girl where I read about y'all's plight, but I just want you to know that you are all in my prayers. Just looking at little Jonah makes my heart hurt, and I pray the tide changes for y'all soon. He is precious and I can't even imagine how much you love him.

hgodwin said...

Still praying here in Georgia! Jonah is sure a cutie! He is going to be a fighter, I can say that without a doubt! I know seeing him like this is hard, but you guys have God giving you strength and that is awsome!

Robin said...

I just learned of Jonah's birth and his diagnosis through Amy's blog (Jeremy and I know her and Peyton from DC and remember meeting you as well). My heart aches for you all and I will be praying for you constantly--for Jonah's healing and for your peace and wisdom throughout this trial.

Much love,
Robin Kernodle

Anonymous said...

Just want to say that Jonah is so BEAUTIFUL! I should probably say handsome! How wonderful to see a picture with his beautiful eyes open. :-) I've lurked a bit off/on for the past few months and have been prayerfully rooting y'all on. I consider myself to be a prayer warrior and have been and will continue to be praying without ceasing for you, Matt, and precious Jonah. Nothing is too small for the Creator of the Universe!
love from Jackson, TN
elizabeth

Jenn said...

I found your blog through Mckmama and what a surprise when you said that you were on a "pass from Forsyth to Baptist". I then realized that you were in Winston. My sister-in-law works in the NICU at Forsyth as well. I live in Madison--not too far from you. You have no idea how much we are praying for you. He is beautiful and I know God is listening to all of our prayers. Lifting you up tonight and always, Jennifer

Speirs Family said...

Found you via MckMamma. Just know that we are lifting Jonah up daily. He is precious!!! The speirs Family

Anonymous said...

A friend passed along the link to your blog. She is an online friend in Christ. I am praying for Jonah and you and Matt. Jonah is so beautiful and brave. I pray he will recover and God will heal his body. I pray that he is able to heal enough to begin nursing and handling feeds.

In Him,
Karen from Boston

katievigen said...

I found your blog through Mckmama and I am thinking about your little Jonah. I work in a pediatric hospital and we will sometimes put the pulse oximeter on the ear to pick up the oxygen level. I noticed Jonah didn't have anything on his ears so maybe this is an option??

Lots of positive thoughts!!

Katie

Brenda is SO Blessed said...

i just stumbled onto your blog from "somewhere on the web"...I have no great words of wisdom or advice. Just know I am in TN and my friends and I are praying hard for you and Jonah--for peace and healing and with love.

Anonymous said...

I'm a peds physical therapist in Indiana and I worked with 2 children with EB until they graduated from our state early intervention program. Both of them still receive therapy. I was going to suggest the Haberman feeder and was glad to see a picture of Jonah trying to use it. Keep trying it - this is what worked best for the child I saw that had more severe feeding issues. This is the first time I have come across Jonah's site - I found it through C.O.L.E.'s foundation. I will be praying for him.
Karen in Indiana

Anonymous said...

I am so happy to hear things are stable. I have a quick question have they done any bloodwork to check his levels of iron, red blood cells, etc? This test can usually answer lots of concerns. My daughter had to have a blood transfusion around a week old because of all the loss from the open areas. It was a big mood lifter for her and she was more alert afterwards. Also if they haven't already have them swab an open wound and have it tested for signs of infection...just in case.
BTW do not get discouraged from him not eating. Keep at it...I use to squirt a little bit of the milk around my daughter's lips so she can get the taste of it and then it was 2 ounces every feeding...baby steps baby steps. =)! While we waited for her to get going she had a central line through her belly button that we sent lipids and other liquids through for her vitals to maintain at bay. It helped us... oh we were in the NICU for 40 days. And we went through all sorts of hurdles trying to get answers and become fly-by-night nurses/doctors/etc...LOL!
Hope Jonah has a good night and lots of powerful healing from above!

Sally Contreras
Simba9960@yahoo.com

Anonymous said...

I am a speech pathologist from Wisconsin and your sweet little baby has stolen my heart!! Your blog was posted on facebook and I have found myself praying for you several times throughout the day.

Anyhow...I am wondering if Jonah is getting any speech therapy services to help him with his suck/swallow?? That can really help with feeding. Maybe it has already been considered, but thought I would suggest it!

You guys will continue to be in my thoughts and prayers in the days/weeks to come!!

God Bless-
Sara

Cathie said...

Hey Patrice and Matt,
It's Cathie Meyst Clarkson - Matt - I still look at you and see the little boy I knew growing up - and here you are - a dad - facing such an unbelievable trial.
Patrice, I think we've met once, I'm a friend of Kim's and the Hilton family in general. Though we are not close to you two - we feel like family b/c the Hilton family - is our family - or extended family anyway.
I am so impressed with your faith, your strength. We cried with you last year and now we are praying for you and with you as you face another heartbreaking circumstance. Your faith is inspiring. We have everyone we know praying for you and for Jonah. We will continue to do so. If there is anything else we can do - we will. Jonah is beautiful - (I think he looks like Matt...) and we serve an amazing and mighty God - keep crying out to Him and leaning on Him- we'll be praying for all the non-believers who are hearing your story who will find Jesus because of your faith in Him.
Lovingly - cathie

Anonymous said...

I found your blog from a friend's who is also praying for your family. I just wanted to let you know I am praying and I honestly have a sense of peace about the situation. As I was reading this post, I just kept thinking "I hope she continues posting blogs once he gets older." I just can't wait to read about Jonah when he is older and does not have to deal with all of this everyday and we can all look back and have a hard time remembering how trying this time is in all of your lives

please continue to stay strong, there are so many pulling for you and praying continually every day.

2slippers said...

God bless you and your amazing little boy.

I take Ambien on a regular basis and it is definitely a trip.

Much Love,
Michelle in NC

Anonymous said...

i read your blog or update first thing in the morning and sweet baby jonah has been in my thoughts and prayers! he is such a cutie boy.

lots of love,
Dores from TN

Jennifer said...

Williams Family,
Jonah is a beautiful baby and I love the name. My name is Jennifer and 6 weeks ago today, I gave birth to a baby girl with missing skin on her legs and wrists and we had no idea what was going on. We too were transfered to a NICU and told our baby has EB. Since that day, we have done all we can to adapt to such a new world and do what we can for our baby girl. I can understand all the emotions you are going through and I have so much I would love to share with you from feelings to suggestions on dressings. Please let me know if you would like to talk and we can somehow connect. Obviously whenever you are ready. All I can say it your faith in God and love for each other will get you through this.

Ocracoma said...

Tony, Macon and I are sending our love and prayers from little Washington. I love the open eyes picture! What a handsome little face he has!

Love,
the Adams

Hazelbasil said...

Dear family of little Jonah,
I am a mother of 2. My second son was born with EB (huge surprise) he will be a year April 22nd. Reading your blog and seeing his precious pictures you have posted bring back the similar memories of Ezra's birth and month's stay at the hospital. He was also born with areas of missing or raw skin. If there is anything I can do for you both please let me know. I would be a great shoulder to cry on and then I am the Martha Stewart of EB dressings. I'm sure you have received so many words of advice and help with the dressings but if I knew what I know now about how to do dressings I could have saved Ezra many painful dressings and webbed toes.
My thoughts are with you and little Jonah.

Your friend,
Lonette

libby @ ninesandquines said...

praying for strength for you and your family and HEALING for jonah! you have many "cyber friends" out here saying so many prayers for you...know that you are not alone!

Anonymous said...

My heart and prayers go out to both of you and your little boy. I hope and pray that god will be merciful and that your boy will not suffer too much with this disease.

Kelly,
Stuarts Draft, Va

Julie said...

You've been heavy on my heart all day. I'm praying for Jonah, you and your whole family.

praying. praying.

lrm--Houston,TX. said...

Praying for baby Jonah everyday! He is so beautiful. We are praying for you two too, that you continue to be strong through this very difficult time. We also pray for the doctors and nurses taking care of Jonah---that they keep him comfortable, that they do anything and everything possible to heal him, and most of all that they love on him as if he was their own. Give that baby a kiss! God Bless You.

Stephanie said...

I JUST LOVE HIM SO MUCH. Thank you so much for letting me pray. AND I WILL.
May His closeness be as close as a kiss.

DramaCity said...

I'm praying for all of you!