Sunday, March 1, 2009

jonah - sunday, march 1st

Sorry for the tardiness of this post – I’ve been trying to get it up since around noon.

We got to go to rounds this morning for Jonah, and it was so great to have a whole team of doctors and nurses there talking how to best serve and care for him. I didn't really know the rules for rounds, but I took it upon myself to ask lots of questions and offer LOTS of my opinions. The doctors were very patient with me, and didn't seem to mind my input at all. I was thankful.

We learned a lot. Jonah had a really hard time this morning when they changed all his bandages. Our weekend nurse, Stacey (who is totally awesome), said that she and the three other nurses doing the dressings were all three crying before it was over. She said his pain was a 9 at that point. She had to go up to 9 mics of pain medication (a very high dose), and still felt like he needed more. It's so hard, because there is a very fine line between easing his pain and putting him in respiratory danger. We don't want him to stop breathing again like yesterday, but it's so hard to see him in agony. They've stopped his 3 mics every 2 hour regimen, and have started a constant 1 mic drip. It will hopefully control his pain better, but is a lower dose than he had when his breathing stopped. They say this is better for him than the up and down of the every 2 hours dose.

They don’t know the state of his mouth and throat. He does seem to have some lesions in his mouth (has been sort of spitting up or letting dribble some white sort of thick liquid), and the ENT probably won’t see him until later in this week. Our biggest concern right now is that he needs to eat. Yesterday he wouldn’t try to suck on a bottle at all. We’ve tried twice today, and he seems to be trying to latch on, but then spits it all out. I worry about this a little – not knowing if it’s just that he has to learn to suck or that his throat is in a lot of pain. We hope it’s the first. They said that if he needs it, they will try a combination of Benadryl, Maalox, and Lidocane to help him with the sores. They’ve also started him on some Tylenol. To me, he doesn’t seem to be in pain when taking the bottle – he’s getting more and more interested.

A gastrointestinal doctor will see him tomorrow and the ophthalmologist will come on Wednesday. If he doesn’t start eating, they’ll have to put a feeding tube down his throat, which could be really bad as far as the lesions it could cause on the inside. He has to get nutrients besides just the sugar water, but a tube could cause major damage. He needs to get constant pain meds, but that puts him in danger as far as breathing. And they’re not able to monitor his pulse-0x like they need to some of the time, because everywhere they put the monitor either won’t stick because all of the skin is raw or the okay skin is covered in slippery ointment. Every solution seems to have so many risks.

The scariest thing we heard this morning is that Jonah is showing characteristics of the most severe type of EB – dystrophic. This is only one doctor’s opinion (Dr. Block seemed to think it was too soon to tell), but the doctor this morning said that between the severity of his current lesions, the percent of his skin that’s damaged, and the purplish lesions on his head, he really suspects that Jonah’s is a very severe case. It’s discouraging, to say the least.

I took a sleeping pill last night (a generic form of Ambien) and had MAJOR hallucinations. I can’t begin to explain how horrible it was, but by the time it was over, Matt was lying on one side of me, his mom on the other, with Matt holding my eyes closed trying to get me to go to sleep. I knew they were both there, but I could either not see them or they looked very scary. All kinds of creatures and figures floated around me (their skin peeling off), all pulling me back trying to take me away. I knew there were two realities – the reality of Matt in the room trying to calm me, and the reality of the hallucinations. One was no more real than the other. I kept saying to Matt, “Where are you? They are trying to take me.” It was the scariest non-reality reality I’ve ever experienced, and unfortunately I remember every detail. I felt Satan’s presence very real there. Although the hallucination was drug-induced, Satan definitely took advantage of my weakness. Between the stress and worry over Jonah, lack of sleep, having to face going home without a baby in my arms again, and the sleep drug, it was a bad night.

I will probably stay overnight since they are calling for snow here. They’re calling for 3-5 inches (so they tell me), so we’ll probably get a trace (and it will be the top news story for four days).

Prayer requests:
- That Jonah will continue to resist infection
- That he will eat and avoid a feeding tube
- That he will not have as severe of case as some doctors think
- And that we will have more days like yesterday and fewer nights like last night

Here are the most recent pictures of our little fighter.


84 comments:

Mary said...

I found your blog through Kelly's and I will pray for your Jonah and your family. I can only imagine how scary all of this is and to add what happened to you last night and what satan was doing is almost too much to handle I'm sure. I'd like to punch satan right in the face!! Have hope, people are praying, and God is right there with you.

j3k said...

I'm right here praying with you and for you! I sat in church this morning with you, Matt and Jonah all on my mind through the entire mass. I'm so sorry about your scary thoughts/dreams! I know how real those can be and it is so scary and those thoughts stay in your head for a long time. Please know I am walking with you through this trying time on my knees in prayers. Please take care.

Hearts and Hugs
Marie

Standing in the Rain said...

i came across you via MckMama and just wanted to let you guys know I'm praying for you and your beautiful little guy. you have been through so much already, i simply can't imagine the strength it takes to keep going.

a logistical note about the ambien...i too had hallucinations on it. so far i'm afraid to take any similar sort of "sleeping pill" but i have been on lorazepam and/or temazepam (i think they are benzodiazapenes) and they work well for me. they are sedating in the sense that they make you calm and sleepy. just thought i'd throw that out there. anything to help make you more comfortable.

praying for jonah!

Millie said...

I'm so sorry that Jonah was in so much pain for those dressing changes. I'm in tears just reading it! I praying like crazy and posted a link to your blog on Colin's blog and on my Facebook page. I hope that sends many more prayers your way. I will be honored to post a "button" link of Jonah's blog on Colins.
God bless,
Millie and Colin-HLHS

LeeAnn said...

Thanks for the update and for giving all of us specific things to pray for. Love the new pictures of you guys feeding him. We are enjoying our time with Shaina today and will continue to provide whatever support and help we can. Remember, I'm just down the road during the week and can come over during my lunch break whenever you'd like some company. Love you!

Jennifer said...

Father God I just ask that you surround this family with your love and protection. In the name of the name of the Father, the Son and the Holy Ghost I ask that Satan not touch this family with his lies, dark images and fear. Allow them to feel your love and peace during this time. Lord I am reminded of Jeremiah 29:11. Lord you know the plans you have for Jonah and the Williams family. We may not understand but we take in the loving words that you plans are for good. Help this family be amazed in you. Thank Father for the miracel of a child. We celebrate life!!! Amen

Amy said...

Patrice, have you called your dr. yet about the reaction to the medicines? I'm thinking it wasn't the generic Ambien as much as it was the Vicadyn with a side of sleeping pill that caused the reaction. Vicadyn is some serious narcotic that causes some crazy stuff...there's a reason people use it recreationally. Make sure you call the doc...please. :)

Anonymous said...

Coming to check on your updates and send more prayers for Jonah.

Anonymous said...

I do not know you, but am a sister in Christ. I cannot know the pain you've been through, but I know the God we serve & have personally witnessed the miracles He is still capable of.
Please, please, please know that I (& my family) are lifting you up in prayer. I've been at the point of being too weak to pray/formulate thoughts on my own & have had people email/call telling me that God laid me on their hearts. I've asked God to do the same to me for you.
I KNOW that God is already working miracles in your precious son's life & trust that you will no longer need Ambien, but that you will have sweet slumber through the power and peace of our Lord!
Healing & blessings,
Amy in Washington

Anonymous said...

My heart goes out to Jonah and your entire family. May God give you the strength to face each new challenge--even when each moment seems so very difficult. We are praying for you all!!
Rachelle

Anonymous said...

Hey Matt and Patrice. I just wanted you to know that I am keeping up with all the updates and praying more than I have in a long time. I hope you get good news this week. I am absolutely amazed at the number of people praying for Jonah and I know God will take care of him no matter what. I hope to see you guys soon. Love you.

Lauren H

Maggi said...

I found you via Kelly and McMama. You are all in my thoughts and prayers.
Maggi N Ireland

Ellyn said...

We know Peyton and Amy from Fairfax, Va. Our family is praying for your precious JOnah and for the two of you.

Now is the time for us to stand in the gap for you.

Jay and Ellyn Sergio
Fairfax, VA

Sara said...

Patrice,

PLEASE ask the doctors about a special bottle called Haberman Feeder. It is the ONLY bottle most EB babies can drink from. Try that before you try the feeding tube. You can also feed him using a dropper. It takes a long time, but if he can only swallow and not suck, then it will work. Also ask (if you already haven't) about a higher calorie formula. EB babies need more calories and many drink very high calorie formulas. Many EB babies are also lactose intolerant and have reflux, even if they don't spit up. It is recommended that EB babies be put on an acid reflux medication (such as Zantac). The acid from the stomach can damage the throat, cause blistering, and breathing issues. That may help with the eating as well.

As for the dressing changes, it is not uncommon for them to take 3-4 hours for the first few months. And while he could be in pain, most EB babies don't like to be messed with and will act like their are in pain. Itching is also a BIG issue with EB. Which can also seem like they are in pain. There is medication that can help with itching called Atarax. Those with EB have a VERY high pain tolerance. While some forms of EB are extremely painful and some take very strong pain meds daily, others take nothing more than Motrin or Tylenol. Pain medication is totally a person decision and I am not trying to tell you what you should or shouldn't do. Just letting you know what others have experienced/recommended.

Amy said...

He's a handsome boy! Little man looks a lot like his older brother-same nose and lips.

Can they not feed him through his umbilical cord? It seems like he's growing anyway, but that would be better than the feeding tube.

Mindy said...

We are praying for you in Maryland. Your information is on our blog and moving quickly through our local message boards. God is good and the power of prayer is unsurpassed. You are amazing...keep being such a fierce advocate for your precious Jonah!!!!!

(((hugs)))
Mindy

Sunny Mom said...

Hi I am the neonatal nurse that stated we have a EB in our nursery currently. We are using some medication to coat this baby's throat before eating. There is one to numb his mouth, however, he would not suck with it and another that coats his mouth. When I took care of him I did not have to use either of them because eat ate okay. So, I don't know the names of them but I can get them if you think it could help. Have you checked with Stanford hospital yet? They are a great resource! I am praying for Jonah and you!

Anonymous said...

I found your blog on McMamma's and I am praying for you and your sweet Jonah. I live about an 40 minutes away, in Salisbury. God will give you the strength to get through this time.
In HIS love,
Cindy

Jill said...

Patrice,

I am sitting here reading your latest post. Over and over.
I have no words except I love you, am praying and cannot even fathom how scary this is.

Anonymous said...

Hi Patrice, I'm keeping up with your story through the Prayer group on Facebook. Jon and I both have you, Matt and Baby Jonah on our hearts and think of you all the time. More importantly we have you in our prayers! I know how difficult it is to see your child so sick, yet I can't imagine what you are going through. After our visit to Brenner's last Thanksgiving with our baby Caroline, I know you are in good hands there and that the staff was wonderful! I also know from my heart, God fills that place with his angels - not the cute fluffy harp playing ones, but His fierce warriors. Remember that. Satan sees the opportunity to distract you and shake you, but do not let him move you. Stand firm and use that to cheer on little Jonah - no matter what comes your way. God has a plan for him, yes, He does. The most soothing thing to Caroline while we were there with her was for me to sing to her - it helped me too! Jesus Loves Me, I love You Lord, and lots of others. Take care - if there is anything we can do in addition to praying for you all, please let us know. Love, Jon and Andrea Hauser

Sara said...

Oh I forgot to mention, that gauze he is wearing in this pictures if much too rough for an EB baby. There is MUCH softer gauze out there. One brand is called Conco Conforming Gauze and the other is Elastomull. As anyone mentioned the Mepitel/Mepilex products? They are very popular among those with EB and work much better than the Vaseline gauze he has on now. They promote quicker wound healing without damaging the skin. There are pictures and descriptions on my web site http://www.garrettshouse.org/woundcareproducts

There is a wound care company in Pennsylvania called National Rehab. www.nationalrehab.com

They are wonderful and work with many EB families.

Hope this helps.

The Van Ordens said...

With tears in my eyes I am praying! May you feel God's presence every step of the way!

Speirs Family said...

My heart is aching for you and I will be praying for you daily.

Charity said...

I found your blog via MckMama and you guys have been on my mind all day. My husband, sister, and I are all praying for a sudden healing on Jonah. The Lord has formed Jonah and has the hairs on his head numbered. I pray you will feel the presence of the Lord with you two and know that Jonah is in the palm of HIS hand. The creator of the universe is holding your son!

Much prayer and love from Albuquerque

Sarah Sharp said...

Hi Patrice! I saw your blog linked on MckMama and Kelly's (Harper's mom) blog. I will be praying for your sweet Jonah. I've taken a little bit to read through most of your posts and your story touches me. I think we're the same age and my baby is about as old as Gabe would be (Will was born April 10th). I can't imagine not having him here with me and seeing him grow and my heart breaks for you not to have Gabe here on earth. But how wonderful that you know God's love and grace to help carry you through the hard days. I look forward to checking in for more Jonah updates and pray that his EB is the least severe type and that he will be healed and able to go home soon!

Oh and how terrible about the hallucinations! That must have been horrific!

Laura said...

Patrice, I am praying for you guys. I've told so many family members and friends your story and they are praying for you too! I just pray for peace and rest for you and Matt tonight and that Jonah will be healed and pain free. I hate that Satan is taking advantage of you at this terrible time. I pray that God will block Satan and these lies from you. Remember that God is not suprised by this - he didn't wake up and realize that Jonah was sick. He knew this all along and He has a plan to use it for His glory! I'm praying for the medical teams too! I put the photo link up on my blog to spread the prayers even more! Love you!

Sarah Sharp said...

I also meant to say that I had horrible leg cramps at night and I tried the bar of soap in the sheets, too! It didn't work for me either.

Jennifer said...

I heard about your story from Jessie Floyd (now Fulks) and I just wanted to let you know that I have been praying non-stop for your family. My entire college class is praying for you as well. I hope that you and your husband find peace in this difficult time, peace that can only be given by our wonderful Savior.

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

I put your link up on my blog - and continue to pray for you all. I think it's safe to say that the more word spreads, satan hasn't got a chance!

As you well know - the blog prayer warriors are a pretty formidable bunch! We don't quit and we don't forget!

God bless you all,
Grannie in Florida

THE LYONS FAMILY! said...

I found you through Kelly... I live in Winston and have been to Brenner's many times with my son and daughter who both have health problems. They are fabulous! We'll certainly be praying for you!

My Krazee Big Family said...

First of all, I want to say Congratulations on your beautiful new baby Jonah.

I also want to say that I can relate as we too have a child born with this condition and have been where you are right now. I want to offer all my support as its what got me through the first year. There is soo much to learn as well and if you need absolutely anything, even just someone to talk to and cry to. I am there. Please email me anytime at gsharp@stny.rr.com and I will give you my phone number as well. There is alot of places that offer great support for those dealing with EB. I would love to pass those along as well....

Sending lots of hugs and prayers for lil Jonah

Tracey

Carrie said...

I found your blog through MckMama's....my family has been through the ups and downs of the NICU roller coaster for a different reason, but my heart breaks for you just the same. I am lifting up you and Jonah. I pray that God will wrap His arms around you and comfort you through everything. His will be done! He is able to do more than any doctor could imagine and I pray He is glorified through your journey.

Sarah J. said...

I found you through MckMama and I just want you to know that I am praying for you and added your button to my blog. Jonah is just beautiful. A woman I go to church with has EB and she has 2 grown children, a husband and is an amazing women. She has difficult days and has had problems with the EB, but she lives a full life and loves the Lord. Praying for all of you!

In Christ
SarahJ.

Kathleen said...

Dear Williams Family,

I am praying hard for you and your little one. He is so handsome, he's going to be a cutie. Please keep us all updated.

Kathleen from Ohio

Zack Troop said...

Hi,
My name is Kadee and I am the mom of a 6 year old little boy named Zack. Zack has rdeb, he is the most incredible child, as are all eb kids. I remember very well his first few days with us, I would have never been able to dream that in 6 years he would be running, playing soccer and tball and wrestling with his sister. He does everything with modifications and in his own way. But he is happy, we have learned to care for him in the best way possible and have felt the Lords hand in our life the whole way. Zack has a happy blog about himself, if you would like to see it it is www.learnaboutzack.blogspot.com.
When you are ready there is a very close and caring community of eb families that are ready to lend support and offer help.
KaDee

Erin said...

Still praying for your sweet Jonah, may God heal your sweet baby. He is bigger than anything. Love and blessings from Ga~ ERIN

Kelly said...

I don't know you, but I do know the love you feel for your newborn and the desire to hold him in your arms. My heart breaks for you and I pray that God gives you what you need during this time. I pray that Jonah will be healed - completely. I pray that satan stays far away from you during this time and that Jesus holds you in his arms. I love seeing the pictures of Jonah and his sweet face - he is a beautiful baby! I have let many of my praying friends know about you guys and they all are lifting you up. Stay strong.

michelle said...

Praying for you to get some peaceful rest tonight and for sweet Jonah. Your precious family is in our thoughts and prayers.

Anonymous said...

I just wanted to let you know that you and your dh & ds are in my thoughts and prayers all day. I can't imagine what you are going through right now. My friends ds had this same thing when he was born. It's just no fair. Take it easy and stay strong!!

Kris Bridges said...

I linked to your blog through Kelly's blog. . . but also heard about Jonah this morning at Cornerstone in Florence, SC. Jonah and your family will be in our family's prayers.

jandkland said...

Like many others, I came here from Kelly's blog and have added you to my blog list so I'll know when you update. Of all the terrible things that can happen in our fallen world, what you're going through is one of the biggest nightmares I've ever read about. Not only did you have to say goodbye to your precious Gabe before you even got to meet him, but now all your hopes and dreams for Jonah are tainted by the continuous blows of devastating information. I don't understand why this happens. I'm not sure we humans are capable of truly answering that question this side of heaven. What I pray deeply for you is that you feel, somewhere within your spirits, the peace that passes understanding. It passes understanding because it makes absolutely no sense for someone in your predicament to feel any kind of peace. That's because only your hope and belief in our good God can give it to you. I desperately pray that over every member of your family right now. Thank you for giving me that privilege. Jonah is beautiful.

--Kelley in Central Georgia

Jessi said...

Hey Patrice,
Just wanted to let you know all of us here at the Rawley/White house are keeping you all in thoughts and prayers. We are praying for healing for Jonah and comfort for you and Matt. Hope you are able to get a better nights sleep and that Jonah has a good night too.
We love you!!
Jessi-and the rest.

Rachael said...

I wanted to let you know that my family will be lifting Jonah in prayer tonight. We will pray that he has the Simplex version and that pain will be managed and he will be able to eat and grow stronger. We pray for you as his parents that you will have the strength to take each day as it comes and hold tight to one another. Whenever hard times have come my way I look to Psalms 30 and love "weeping may ensure for the night, but joy comes in the morning." I know that God is watching over you all and loves you more than you can imagine.

Rose said...

Patrice, I am so glad that you are updating. Jonah looks so good today! I am praying that Jonah's EB clears up and that he is absolutely healed! You have been tested and tried more as a Mama than most Mothers ever are, keep praying, keep the hope, and your readers will keep lifting you up.

I do remember Jameson (my friend's son with EB) would not eat for a few days, I hope that it is just an EB thing and not a severity thing (he has Dominant Dystrophic and does not show many signs of EB anymore).

leigh anna said...

i found your blog....
through kelly's and through facebook within moments of each other...
which tells me that god was needing me to focus on jonah and your family!
i stopped...before i wrote this, and prayed....
please know that if you need anything, i'll drop what i'm doing to help in any way i can!
(i'm here in winston)

you all are in my prayers!

Jane said...

My thoughts and prayers are with you all. I have contacted a lot of my prayer warriors and they will be praying too. The site Leigh created on Facebook has really taken off, I am so glad she could do something. People in this area feel so helpless at a time like this. The only thing we can do is pray and just know you are loved by so many. May God give you and Matt the courage and strength that you need at this time and answer all prayers regarding Jonah. May God Bless You all.

4 Little Men and Girly Twins said...

My heart is breaking for you.... I am so sorry. We are continuing to pray for you and your precious little boy!!!

britt

Desha said...

I am praying for you and your sweet boy. I can't imagine what you are going through, but my heart aches for you and my prayers follow you.

Strengthen the feeble hands, steady the knees that give way, say to those with fearful hearts, "Be strong, do not fear, your God will come, he will come with a vengeance, with divine retribution he will come to save you." ~Isaiah 35:3-4

cecemeetsworld said...

Oh hun... I am SO sorry you had such a horrific night. I am so SO SO sorry that Jonah was in so much pain during his dressing changes. I am praying, my husband's church is praying, my blog, my entire email list and twitter.

If you need ANYthing... message me on my blog and I will stop,drop and pray.

CeCeGarrett

hgodwin said...

You have prayer warriors places you never imagined! I am here in south Ga praying some mighty prayers for that little man of yours! Keep your faith. God can perform miracles you couldn't even imagine! :) Just know you have so many people suppporting, praying, and thinking of you! BIG HUGS!

-Hallie

Anonymous said...

Praying for you and your sweet baby

shaina said...

blow jonah a kiss for me. love you.

Anonymous said...

I found you blog through Mckmama.
I am praying for your beautiful little boy. I am also praying that the Lord blesses you all with peace, strength and faith.

John 16:33
"I have told you these things, so that in me you may have PEACE. In this world you will have trouble. But take heart! I HAVE OVERCOME THE WORLD!"


Em
from
Australia

KristiJ said...

I am praying so hard for you and your sweet baby.

Anonymous said...

Your baby is absolutely beautiful. Congratulations on giving birth to a baby who is perfect in God's eyes. I will pray for your strength, Dr's wisdom and mostly for God (the perfect healer) to wrap his arms around your baby and your family. God has a perfect plan for Jonah, even if none of it makes any sense to us. May the infinite grace of God sustain you in these times.

Leslie, MO

rstephenson3 said...

I worked with Sarah at High Hopes, and I just wanted to let you and Matt know that there are several people in Nashville praying for your little man.

Continue to "be strong and courageous do not tremble or be dismayed, for the Lord YOUR God is with you wherever you go."

Christy said...

Hi guys...This is Christy from accountability groups. I've asked everyone I know to pray for you guys. Oh lord, you are the all knowing one. We pray that you will bring us a supernatural sence of peace through out this ordeal. We pray for you healing hands to work miracles for Jonah. We pray that you huge arms can confort us through the ordeal and we know that you are crying right there beside us. Give us the strength that we need to get through each new day.

Tara said...

I will definately pray for you, for jonah and your husband. With tear filled eyes I can't imagine what your going through, but the only promise that goes through my head is "I will never leave you" and I will be with you always.
I got your blog from jon hauser's prayer request on facebook. I'm assuming you know Jon. Jon is from my hometown.

Amber said...

Hi. I found your blog today and I have come back to your blog every spare moment to read your story. We're praying for Jonah and I asked our church to pray for him tonight as well. We live in Lenoir, North Carolina. May God heal your little boy totally!

Lynnette Kraft said...

Jonah's button is on my blog. The prayer support must feel great to you! The blogging community is such a great way to get word out in situations like this.

Thanks for the button. It will remind me and my followers to pray for your sweet baby.
Love,
Lynnette

Amy said...

Just so you know...the last 1000 on the blog counter are me. :) You should consider opening your blog for comments instead of moderating. It'll give us obsessive followers something to read. :) Love you! And one more smiley...:)

The Dolezal Family said...

I fasted and prayed for your little baby today. I do pray that he will be healed completely. What I do know without a doubt is that Heavenly Father knows you each individually as His child. He loves and protects you, and that his love is closer to you than you may realize.

Also, your little guy is quite the handsome boy!

Jessie said...

Praying and praying. I shared Jonah's story with the members of my sunday school class today and they are also praying. Many blessings to you!

Anonymous said...

He is beautiful! I love the last picture, of his sweet little face. I am so sorry that you are having to go through this. My heart is truly broken for you both. I am praying for you often, day and night. So glad that you are clinging to the the Lord, and that He is holding you all safely in the palm of his hand.

Love,
Katy (California)

Michael and Hannah said...

I'm a friend of Alaina's and I wanted to let you know that my family has been praying for Jonah. He is truly a beautiful baby and I know he has already brought so much joy into your lives.

Brooke and David said...

I found you through MckMama and just wanted to let you know that I will be praying for your little guy and the family as well! I'm going to post your button and pass your prayer request along to my prayer warriors. Our God is mighty and faithful! In my prayers!

lynn said...

Hi Patrice,
I came to your blog through Andrew and Amy. We attend the same church as them and part of the prayer team there. We have been praying for you, Matt and Jonah. We will continue to be praying for God to reach His mighty hand down and perform a miracle. We are also praying for you and Matt to feel a peace that passes all understanding.
In Christ,
Lynn Lange

Rebekah said...

I just started reading your blog. I want you to know that someone is here in Colorado praying for your baby and you and your family. This is a seriously hard thing to go through. We are all here to support you and love all of you and yours. I will continue to look for updates.

Jennifer said...

Found your blog through Kelly's corner. I related somewhat as God has brought me through two still births. I know what prayer can do and will be praying for you and your family.

Love in Christ,
Jen

Tracy said...

I came across your blog and have absolutely been touched by your story and beautiful baby. I'm praying for your family and your baby boy. It's not fair that such a precious little guy has to go through so much!
I hope things get better and you get the answers you need.

Anonymous said...

Wow. He is a fighter. He really is beautiful too. I love babies. They are so innocent. They are straight from Heaven. It is a sacred calling to have precious children sent here to us. He is your Gift from God. I'm sure it is hard to bear watching him be in pain. God knew he was your son and he needed you to be his parents. I know God is watching over you and Jonah. I believe Gabe is too. Your family is eternal. Love never ends. You will always be together. Love to you and your family at this difficult time.

avbernat said...

Lots of hugs and kisses from The Bernat Family. Do NOT be discouraged and keep the faith. I will be praying hard on my knees that Jonah will overcome this. He is a fighter, he will be another NICU miracle, and he will be a survivor. I cannot relate to the horrible anxiety you must be going through right now but hold strong that you, Matt, and Jonah will fight for his long life.

Andria said...

We are praying hard for your family.

rameelin said...

Thank you Jesus for your healing hand! Thank you for sending your angels to have charge over us and for knowing the steps we take before we take them. I pray you would give this young father and mother divine wisdom and awesome strength. Wrap your arms around them in such a way that they literally feel your presence. I pray that you would intervine in such a way that the Dr's and nurses would be amazed at Jonah's speedy and miraculous recovery. Thank you Lord for planning Jonah's future that will be blessed, and whole. I pray that you would go to Jonah, even now, Lord and reveal yourself to Him. As his little eyes are closed, God, I pray that you would allow Him to see your face and smell the sweet aroma of peace that you bring. Thank you God for easing his pain and strengthening his body. I know you're doing it. Father I pray that these parents would have understanding and would be filled with assurance that only you can bring. Thank you for your wonderful hope and mercies that are new each morning! You are an awesome God!!
Amen.

Miss Cook said...

I forgot to say earlier that, by the way, he looks like such a little angel! He has the most precious little cherub face, and I bet that's exactly what you and your brother and sisters looked like as babies :-) Not to mention you are tough as nails when you absolutely have to be, and I'm willing to bet he is going to be just like his momma in that way :-)

Mer said...

Here from LFCA. I will be praying for your beautiful little boy.

Heather said...

Here from LFCA--just wanted to say that I'm praying for all of you. What a frightening thing to be facing.

You have a beautiful little boy. :)

lesliesloan said...

Hi Patrice and Matt,

We have posted a link on our blog and have everyone we know praying for you too.

Thank you for updating and keeping us informed on how we can love and pray for you. It must be hard to communicate through this time, but I am grateful for it. We are praying like crazy!

Leathers said...

Patrice - Eric and I have been praying since we got word and will continue to pray for the specifics that you mentioned. For what it's worth, my mom takes ambien and has endured some pretty intense hallucinations, some in my presence and they are scary. I doubt you have a desire to ever take one of those again, but if you do, just note that an empty stomach seems to be what triggers hallucinations for my mom. If she eats well before she takes it she usually just drifts right off to sleep. We love you and your sweet son. Kristin Leathers

Melissa said...

I found your blog a few days ago and I have been so touched by your story. I am praying so hard for your sweet, little Jonah! Even my young children are praying for Jonah. The faith of a child is amazing and I know that Heavenly Father answers their prayers.

Melissa :)
www.withasmile.wordpress.com

Likeursoperfect said...

I know that you don't know me, but I found your blog whilst "blog surfing" the other day. I just wanted to let you and your family know that I am praying for your little boy. Your family has been through a lot, and I'm sorry for that. I have little experience with EB (I only know of 2 cases, and have only met one of the two - she is a very happy little girl, and deals with it in a classy, mature way. I hope that your Jonah's experience will just strengthen him the way it has her.)
Just remember, God won't give us anything that we can't handle, and the trials we go through are meant to make us stronger.
Again, I am praying for you and your family, and I truly hope this comment helps, and doesn't hurt.

michelestaples said...

What a wonderful mother you are! As powerful as Satan can be, God is right there alongside you feeling your pain and fear. Still praying for you and yours.

Anonymous said...

**** I pray, Father, that if Patrice is meant to hear these words that this not get lost in her plethora of comments. If if it not Your will, YHVH, then I pray it does get lost. I want only Your will to be done and I pray for Your words, not mine. ****

Patrice,

Whenever I feel an incredible love for someone I don't even know, I know that it is the love that the Father has for them and He is just filling my heart with it. It always amazes me how much love He has! I felt the love that He has for you as I was reading through your blog. And I know that because He loves you so much, He wants you to know something. . . even though you may not hear or see or understand- at least right now. But you will. I know you will because you are His.

Galatians 5:20 says Now the deeds of the flesh are evident, which are: immorality, impurity, sensuality, idolatry, sorcery, . . . and things like these, of which I forewarn you, just as I have forewarned you, that those who practice such things will not inherit the kingdom of God.

The word "sorcery" is the Greek word for pharmakeia. . . which means a potion or a drug. . . also from whence we get our modern word pharmacy and pharmaceutical.

Your "hallucinations" were real. When we sin, we open the door for unclean spirits (demons) to enter our lives - they have a legal right to be there. . . unitl you repent and cast them out.

You are fighting a spiritual battle right now and you need to gird your loins with Truth:

Yeshua (Jesus) says in Matt 5:16-20 that He did not come to do away with the law - He came to fulfill it - fill up, give meaning to. YHVH never breaks covenant with His people and if you believe in the God of Abraham, Isaac and Jacob, then you are one of His people. There is one law for Israel (the Hebrews) and those who sojourn with them. We are preparing ourselves to be a pure spotless bride by following His commandments and precepts. Which includes keeping the law, eating clean (biblical kosher) remembering the Feasts and rejecting pagan worship of YHVH (Sunday worship over Sabbath worship, keeping Christmas, Easter, etc. instead of God's Feasts). It does matter how you worship Him. It does not matter what it means to you, it matters what it means to Him.

When we chose to obey the teachings and precepts of YHVH, they lead to life.

Deut.30:15-20
“See, I have set before you today life and prosperity, and death and adversity; in that I command you today to love the LORD your God, to walk in His ways and to keep His commandments and His statutes and His judgments, that you may live and multiply, and that the LORD your God may bless you . . . “But if your heart turns away and you will not obey, but are drawn away and worship other gods and serve them, I declare to you today that you shall surely perish. . . “I call heaven and earth to witness against you today, that I have set before you life and death, the blessing and the curse. So choose life in order that you may live, you and your descendants, by loving the LORD your God, by obeying His voice, and by holding fast to Him; for this is your life and the length of your days, that you may live . . ."

So, choose life!

I'm praying for you to choose life and that YHVH be merciful and spare Jonah's life and heal him completely as a testimony to His Truth.

~Michelle ( yladimshelo AT yahoo dot com if you need me to clarify or want to talk).

Anonymous said...

I found your blog while doing research fot E.B. I was born Dowling Meara Simplex Which is also a severe type well it was worst when i was born, I hope your son is doing fine and stay strong because when I was born the doctors told my mother I wasn't going to make it because I was born with no skin but im 18 now and im doing everything that the doctors thought I would ever be able to do. Im sure he will grow up and have A great life.. take cear

-victoria, N.Y.
victoriaj91@yahoo.com