UPDATE 3:07 pm -
I was feeling a little better this morning after a refreshing 3 and a half hours of sleep (interrupted every hour for a stats check, drugs, and a blood draw). But then I busted out (legally, of course). I then headed straight to Brenner's to see Jonah, where Matt gave me a good report from last night. Jonah stats were stable, he was still breathing on his own, Matt had gotten to spend a whole 10 minutes with him with his eyes open, and also got to go on rounds with the doctor's when it was Jonah's turn. There is no intestinal blockage, so no surgery in Jonah's future, as far as we know. The burn team also came down to make recommendations about Jonah's dressings. They asked that he be covered with the gauze on ALL parts of his body, even the non-lesioned parts (which are few), to further protect him from infection. He's the cutest little mummy I've ever seen.
And to top it all off, my family greeted me at Brenner's with the words:
"Jonah's famous!" "MckMama put a note about him and your blog on twitter."
"I got tweeted by MckMama???!!!"
Although MckMama is TOTALLY awesome, I must admit I'm a little more excited to have access to her gazillion prayer warriors than to be mentioned by her Bloginess. (Although that is way cool too!)
Matt and I went in to see Jonah as soon as I got here today, and we got to speak with the dermatologist. The biopsy came back, and he definitely has Epidermolysis Bullosa. The dermatologist says that he is rare - only 8 cases in every million babies. There are three types of this disorder, but we don't know which one yet. They will now have to do an electronic microscopy on his sample to determine which type he has. She said it could be up to three weeks before we know the results. They haven't really indicated that one of those types is necessarily worse than the other, but I haven't had time yet to research all three. The severity is yet to be determined, and is more a touch and go, day to day sort of thing than a right now thing. Although one doctor thinks he has a severe case, the dermatologist says that, in her opinion, that can't be determined by his lesions right now after having gone through something so traumatic as child birth.
After Matt and I finished our visit, I took Amy back to see him. We looked at him for about 10 seconds when he started turning purple. She and I were both freaking out, trying to get someone's attention. Luckily the dermatologist was still in there and was more assertive in getting someone to attend to him. He was purple for what seemed like a really long time before the alarm went off, and everyone went into action. He had stopped breathing, and it took them several minutes to get him breathing again. Amy ran out and got Matt. And for a few minutes, Matt stood and watched them work on Jonah while I cried in an opposite corner of the room. It was extremely scary, and I still have not settled down from it. I'm somewhere between afraid to leave his side for a second and not wanting to be back in there at all.
On a lighter note (I'm trying to find one per day), before delivery yesterday when all I could have was transparent liquids/jello, I mentioned, with my Maw-Maw in the room, that all I wanted was a Fuddrucker's cheeseburger. Maw-Maw charged the Fuddruckers gates this morning at 10:00 am (they don't open until 11), begged them to let her in, and we had three burgers in our room by 10:45. We're pretty sure she probably told them all our story and had them crying before it was all over. She's great like that. The funny part is that when she came here to Brenner's (before I was here) and told several people her story, she kept saying things like. "All she said she wanted was a "Fubbruckas" (or) "Fuddruckles" sandwich. I've never even heard of that."
She's so cute. Bless her heart.
One of my new commenters reminded me of this verse (thank you):
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:26-28
It helps me feel okay that I don't have the words, and sometimes I'm too numb for prayer at all.
A reader sent me this link about a clinical study being done with 30 patients who have EB, where for the first time, a bone marrow transplant has been used to treat something other than a bone marrow or blood disorder.
We won't know until Monday if this is exactly what Jonah has, but all signs are pointing to yes. The article says that it is a "disease that, though rare, causes the skin to fall off at the slightest touch and inevitably leads to cancer. Most children who have it do not survive to adulthood." This is probably descriptive of kids who have the severe version, but we are hoping and praying that either Jonah has a mild version or the diagnosis is completely wrong. Please pray for one of these two options or a complete miraculous healing for our beautiful, beautiful boy.
There's also a video link on the page of a the toddler age brothers who are undergoing this treatment.
I haven't talked to Matt yet this morning. He went home to get some sleep while mom stayed with me at the hospital. I'm getting released today, as soon as the doctor comes by and gives me the go ahead, and then I figure the next week will be a lot of time spent at Brenner's loving on Jonah as much as we can from outside his plastic sterile box. We can't touch or hold him, but can crack open one of the little doors and talk to him. He acts like he knows us, and will typically calm down when he hears my or Matt's voice.
He seems to be stable at this point. He's breathing on his own, and all his vital signs are strong. He is covered in yellow antibiotic soaked gauze all over his body to keep his lesions moist and infection free. His eyes need to be checked by a specialist since this disease affects the mucus membranes, it could affect his eyesight.
"Fragile" doesn't seem like a strong enough word to describe him. I'm not really in the state to cheer lead and say that everything is going to be okay. I do hope and pray that we find out some really great news on Monday, but it's an overwhelming sadness and anxiety that fill me now. Please pray for Jonah. I haven't yet been able to find the words to pray myself.
Saturday, February 28, 2009
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Just heard about you - I am praying and will ask others on my blog to as well. I know you must be scared and upset - I'm praying for your peace and comfort.
I am praying. My heart is so saddened and broken right now. I have been praying all night it seems. I pray for sweet sweet Jonah, for you, for Matt and for the Doctor's minds and hands as they determine how to treat Jonah. I pray for a good diagnosis. He is such a beautiful little boy and it gives me some peace to know that our Lord Jesus is with him through this whole process. Praise be to the God of all things!
Patrice, don't know how to put into words how gut wrenching this is but think about baby Stellan who was not supposed to survive and was supposed to be born with a bad heart - he was born perfect and still is today! We have complete confidence in a God who can work miracles! I did write to MckMama asking her to get the word out about Jonah - soon there could be MILLIONS of people lifting you all up in prayer! We love you guys!!!
Patrice - thank you for keeping us posted on how you and Matt and Jonah are doing. I have a new understanding of what it means when people say "I am with you in prayer" I pray each time I think of you, and you are never far from my mind. I love you!
I'm a mom of beautiful stillborn son and a rainbow baby who surprised us with his special needs. I know how hard it can be to get a live baby then find out there is something wrong with them, too.
I will be praying hard for Jonah, and for you!
Praying for your son and for you.
Praying for healing for Jonah and the peace of our Lord for you and your family.
Praying for Jonah
I am praying for you and that precious Jonah. I read about you this morning after linking from Katherine's blog, and I was in tears. May God give you peace as you wait for answers!!!
Wow! What a heartbreaking situation. I'm so so sorry that you've had to endure such pain and loss. My husband and I are praying for you and your sweet baby Jonah.
Sending you mountains of prayers. I cannot imagine the pain you are feeling. It is my hope that God has sent your baby to you to be an instrument of peace, and that all of us may glorify our Creator through him. Praying for a miracle.
We are friends of Lauren (go to church together)...and we're following little Jonah's story. Your family is in our prayers.
hi there, I am new to your blog--it was linked by MckMama's blog. Praying for you all and so sorry it has not gone as you had planned and hoped, so far. We will be praying for good things for Jonah!
Just became aware of you guys from MckMama's blog. I am praying for you all and for the healing of Jonah. May God bless you with his love, comfort, and peace today and in the days to come.
I got to your blog, on request of MckMama. I now pray for you and your husband and Jonah. I pray that Jonah is comfortable and the doctors determine the best plan of care for him. For his mom and dad, I pray for peace and the ability to remain calm. God is in control!
Julie in Indianapolis
Patrice and Matt:
There is no way I can say I understand how you feel because we don't yet have a little one, but I can say that I am sorry 1) for your first loss and 2) for the condition which Jonah has.
We will continue to pray for you and your family that a miracle happens. Just trust in God and know that whatever happens, it is his plan being fulfilled.
I love you SO much, and even though I don't get to see you often, you are never far from my thoughts. I hate that this is the first contact that we have had since last Christmas, but we will keep in touch more, especially so that I can follow your little boy's progress.
Just remember you can do all things through Christ!
I'm so very heartbroken for you on Jonah's behalf (and Gabe's death). As I cry out to God for help for all of you, I am reminded of Romans 8:26: In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. God is hearing your hearts' cries. I know He will be faithful in holding you in His almighty, loving arms.
I found your blog through MckMama and wanted to let you know that I am praying for you and your sweet Jonah. I can't even imagine what you are going through right now, but take comfort that the Lord has a wonderful plan for Jonah.
Found you through McMama... I'm praying for you, your precious baby, and your son!
Praying for your family and your sweet little boy. God can and will do amazing things!
I found a link to your site from MckMama. Your family will be in my thoughts and prayers. I cannot imagine the pain and heartache you all must be experiencing. I know the Lord does. I know He will watch over you and your precious boy. I hope this verse will encourage and uplift you. "As for me I am poor and needy, but the Lord is thinking about me right now." Psalm 40:17 Lord, Please wrap Your arms around them. Please direct Your thoughts toward this family. Please give them the comfort and peace only You can provide. We claim the promise of Your word, that You have a hope and a future for them. Please do what only You can in this situation. In the name of Jesus.
Lord God be near. Hold this family close to your heart and whisper words of healing to them. Sing over them the song of peace. Grant them favor out of your great mercy and love. Not because of who they are Lord, but because of who you are. In the name of Jesus I pray a hedge of protection around them to keep satan from stealing there peace and joy.
You are the Holy One, the God of the universe, by You and through You and for your glory all things were created. Blessed be the name of the Lord. Amen.
I heard about you guys from MckMama, too. Praying for you and little Jonah.
I don't know you folks, but my heart aches for you. I will be praying for you and your precious baby. Love, Cija
'Faith the size of a mustard seed...' Believe that God has huge plans for you and your beautiful new baby. We will pray for healing and peace for all of you.
Just heard about Jonah and am praying for him and you and your husband.
It's Tiffany. I have been thinking so much about you lately and finally Googled you to find your blog. The Holy Spirit is always at work. Jonah Alexander. What a strong, awesome name. He's so handsome! Try not to let the Fear debilitate you. You literally have hundreds of people praying for you, Matt, and Jonah. I love and miss you.
When we are weak, He is strong. Just wanted you to know others are praying for you. Even some you never met. Praying in Louisiana. In His Name.
Hi, I found your blog from MckMamas' twitters. I am a neonatal nurse at a children's hospital. We have a baby currently in out unit with EB. The experts in this area is Stanford hospital. I don't know if it's a children's hospital or just a hospital. But they are the only one's in the US with the expert and active research for this disease. They have a video on their website to show you how to do dressing changes. I hope this information can help. I will be praying for your little man! He is precious. Please contact me if you need more information. I will be at work next Tuesday and may be able to get more information for you then, if you need it!
I was sent here by MckMama and wanted to let you know that one of my best friends had a daughter with EB. If you ever wanted to talk to her email firstname.lastname@example.org.
Best of luck and I will be praying for you both and for Jonah. Have faith and God will sustain you.
Praying for your sweet boy and family.
We are praising God in this storm and praying that He brings you through it with strength, peace, and a healthy little man. Spreading the word and your blog so more can be lifting Jonah up to his Daddy.
Williams family I don't know you but I am on my knees praying for you all!
I am praying for healing and for strength. I am also praying for comfort and peace. I read your entire blog last night and what an AMAZING woman and child of God you are. My thoughts and prayers are constant for you!
Sister of Courtney Lancaster (area director YL Greater Raleigh)
praying for good news on Monday and for that little guy to fight hard!! God is good.
i just found this link on mckmama's blog. i am praying for you and your husband and your sweet baby. i am sure this is even harder to deal with b/c of your first delivery. (i have been a peds/nicu/mother-baby RN for years.) one thing you can do for your sweet baby is make a recording (like on a mini-recorder) of you and your husband reading him stories or just talking about whatever... it can be placed in a plastic bag and in his isolette so when you aren't able to be near him and comfort him, his nurses can play that so he can hear you. i guess ask them first, but i have seen first hand how it works for dear, little ones; and, it is something you can physically do for your baby. God bless you.
You are in my thoughts and prayers...I have started a scrapbook for you and little Jonah...printing the pics your friend has on her blog. Take care of yourself (you and Matt both) and know that you are not alone! God is with you (and sweet baby Jonah)!
What an awesome reminder of our Savior...the scripture you included in the 3pm post you blogged today!
May He be your strength, holding you all in the loving palm of His hands!
I'm praying for Jonah and your family!
"Now faith is being sure of what we HOPE for and certain of what we do not see." Hebrews 11:1
We've been gone for a few hours and could not get in the house fast enough to get read your update. You, Matt and Jonah are constantly on our minds and so very lifted up to Him.
I cannot get this verse off my mind. and can almost feel us singing this song at camp.
3 But you, O Lord, are a shield around me;
you are my glory, the one who holds my head high.
We love you so very much
I came over from MckMama's blog...we're praying for you!! What a beautiful baby boy!!! God bless :)
sweet girl - we're praying our hearts out for you. shawn and i are devastated by what you're going through, but amazed at your strength. we're dying to do something for you, but are at a loss for what. so please...PLEASE...if there is ANYthing that you need, i'm insisting that you give us a call. until we hear from you, our hearts are both simultaneously mourning and rejoicing with you, and we're constantly interceding on jonah's behalf.
I'll be praying. I heard about you from MckMama's tweets and her blog also. I know the sting of having your child in the hospital, my son was born with only half of his heart and has had four open heart surgeries and four other surgeries, including two stomach surgeries. It's a pain that one can't describe, watching your baby struggle. The verse that sticks in my head is the one:
Jeremiah 29:11 (New International Version)
11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
This verse has gotten me through a lot.
Please know that I'll be praying.
Millie and Colin-Hypoplastic Left Heart Syndrome
We are friends of Amy & Peyton, and we will be praying for sweet little Jonah. You are so right that our God is mighty and powerful and can do anything. We will pray for Jonah's healing and for your peace and patience.
I heard your story from someone who posted on Mckmama's blog. We will be praying for your precious baby. I know that feeling of not wanting to be in the NICU but not wanting to be away either. I felt the same way when my son was in there. Especially when he was 11 months old in the PICU and fighting for his life...it was the hardest thing to watch. God bless you and your family...we will continue to lift Jonah up.
Just wanted to let you know that we will be praying for your sweet boy. Found you through MckMama...don't know if I would consider myself a prayer warrior, but I will do my best.
Sweet Jonah, rest comfortably in the great arms of the Great Physician, who can heal all things.
Just coming over from MckMama's blog, and wanted to let you know that I'll be praying for you and Jonah. Praying for strength and blessings!
I am linking from Mckmama's blog; the prayer warriors are now praying for baby Jonah!
Thinking of you and your family, and of course Jonah, during this difficult time. Will be praying and will ask others to do so as well.
Heavenly Father, I lift this family to you right now. Will you take little Jonah onto your lap and cradle him as the doctors treat him. May every hand that touches Jonah be especially gentle and compassionate, and may they extend that same gentle compassion to Patrice and Matt. Father God, we acknowledge that you are the Almighty Physician. We ask that you give your wisdom and discernment to Jonah's doctors. And, Father, we ask that YOUR healing hand be protectively placed over Jonah. And may this young family KNOW and FEEL your strength and peace during this trial. I pray in Jesus' name. Amen
Praying for you!
Patrice and Matt, you and Jonah have been on my mind and in my prayers continuously this week and every moment of today and forever on. You both are amazing and strong as people and Parents. I admire you. You are an inspiration and a true testimony to unwavering faith. I always have thought this.
Much love, peace and prayer.
Father God, we lift up to you Baby Jonah and his parents during this difficult time. Lord we know that you are the Great Physician-please heal this child. Father God this young couple is still grieving the loss of Gabe and they need Jonah in their lives. Lord you have the power to strengthen and heal this precious baby. Lord please let Jonah's condition be mild and let them learn of treatment that will work quickly with this little one. Lord I lift up Patrice and Matt to you at this time. Put your loving arms around them; give them peace and always let them look to you for strength. Lord we are only human and we do not understand why there is so much suffering. Please let Jonah be comfortable during this time and let his parents feel at peace while knowing that you are in control. In HIS Name, Amen.
Hi I am friends with Lauren from Christ's Church, and when i saw her post i felt very close to you. My son was born 2 month early and was in the NICU for a 18days. The longest 18 days of my life. I was not able to pick him up for a while b/c they said it was using to much energy to figure out how to react to touch that it would take away from the energy that he needed to grow and be able to breath and eat on his own- this was devastating. not being able to comfort my child was so hard. I cant say that it got any easier however i new that it was best so that i could get him home as soon as possible. I went everyday and stayed by his "bed" sterile box as you said, which is so true, and i talked and prayed to him. Eventually i was able to hold him and eventually feed him. It was so hard but being there every day- knowing all the nurses- writing and praying made it all manageable. I remember getting so excited to be able to get to the hospital first thing in the morning to do what ever the nurses let me do. It helped me feel like i was a mom- and i was taking care of him. Another thing that made things easier was lots of visitors and the only requirement to see him was the HAD to pray over him before they left. To this day he is such and amazing tempered child- b/c i was not able to hold him to soothe him he learned to do that himself.
I dont know if any of this helps but if you need someone to talk to about whats going on i would love to do what ever i can. my number is 252-347-4886....i now work in a pediatricians office, im not a nurse but if you have any questions and want and outside medical perspective i would be more than happy to do so. I will be praying for you and your amazing son. He is so much stronger than you may think- you will see. Not to forget how awesome God is and all he can do.
Remember God does not give us more than we can handle!!
I came upon your blog and had to write! I was born with EB as did two of my kids! I'd be more than happy to talk with you. Please check out my web site www.garrettshouse.org i have created a new parents guide for those who have an EB baby. It contacts TONS of helpful info about caring for a baby with EB.
You can also email me email@example.com i'd be more than happy to give you my phone number if you want to talk. I know how scary this all is, I have been there twice, but there is wonderful support system out there of other EB parents and patients. one site http://ebfriends.ning.com
Jonah is a beautiful little boy!
Praying for you all. Jonah is absolutely an adorable little mummy. Blessings to you and yours.
Yes MckMama can bring a crowd! We will pray and pray for his healing and your peace during this hard time.
Praying, praying, praying for you!
bless your hearts!! i am praying!!!!! you will be in our prayers daily and will share your story with others!!!! our God is an awesome God!!!
praying for a miracle! I'm going to share this on my blog... there are so many prayer warriors out there! I hope you find some comfort in knowing that there are so many people praying for you and your son.
Praying for your son and your family! May God's blessings be with your precious son!
Patrice & Matt,
After years of infertility, my husband and I chose to adopt. Garrett is the child that God gave us! He chose us to be Garrett's parents. Do you understand how awesome that is?
Two short years later, I became pregnant. It was a miracle. At 39 weeks we discovered the baby had died. For no reason, our Grady was gone! That was more than 12 years ago. The pain is still there but it is not so heavy.
God blessed us five years later with another pregnancy with a beautiful girl, Guthri. She and our son, Garrett, are healthy and the center of our lives!
I am not familiar with EB but I do know that God creates miracles every second of every day. Keep your heart and minds on the positives of little Jonah. He is here with you!
I will pray for you and Jonah. Reading your blog is so uplifting because of your positive attitude.
Hang in there!
(I love the idea of Gabe's Garden. What a precious way to show your love!)
I came on over from Kelly's Korner & will be praying for Jonah's healing as well as peace in your hearts.
SW WI Mom
I followed the link from MckMama's blog to read your story. Jonah is so cute. He is the cutest little mummy I have seen!!!! I am praying for all of you.
I heard about you on MckMama's blog and am sending many prayers in your family's direction. Stay strong...
monica and i miss you and can't stop thinking about you and praying for you. we would love to see you and beautiful little man. call us or email us and let us know if we can help other than praying for you. we love you all.
New here..I heard about you on Kelly's blog. Praying for your family!
We are praying for your family.
I have a friend with EB, and she's well into her 30's, if that helps calm your fears just a bit.
Your family is in my prayers as you learn about this condition. May Jonah be protected from the severity of this condition and may you find peace and comfort in the knowledge that you are loved...
I am praying for you and your family with all of my heart!
P.S. MckMama sent me.
I got to your blog from MckMama's. Twitter. Praying for you and baby Jonah in Texas.
Love the name Jonah - it's our middle son's name! EB is a very difficult condition, but there is much to be hopeful about. My mother provided in-home nursing care to twins with EB for many years, and those girls became good friends of our family. They had the severe form of the disease and lived into their late 20's. They had many friends, graduated top in their class, and both went on to college. Though their lives were too short, they touched many others in the time they were with us. There is new research and treatment happening all the time, and we know how powerful prayer is! I am praying for comfort and healing for your son, and peace and wisdom for you and your husband.
This is really odd, but truly how God works. I found your blog through MckMama, but I live in Winston-Salem! I have been to the two hospitals you mentioned, and have volunteered at Brenners. They can work miracles there.
Hi Mrs. Williams, I just wanted you to know that I am praying for you, your family, and Jonah. Here is a link to some healing scriptures. It may be calming to find a cd with them up there and have them playing in his room. I love you, God Bless!! http://www.joycemeyer.org/OurMinistries/EverydayAnswers/FeaturedHandouts/healingscriptures.htm?print=true
Prayers form Ga. May God heal your precious baby! He is King of Kings, and Lord of Lords. Through prayer and hope anything is possible. Love and blessings from ga~ erin
I just came from Kelly's Korner and wanted you to know that I am keeping you and Jonah in my thoughts and prayers.
Hello there! Jennifer again, I noticed on your update that Jonah was having trouble sucking, this is very common for EB babies and even though Jameson did NOT have trauma in this mouth or throat, he still had trouble sucking a bottle down or on a pacifier.The doctors in the NICU gave him a specific formula that was double the nutrients (and apparently sweet) and this did help some. HERE IS THE INFO ON DEBRA.ORG concerning this issue, hope it helps! Nutrition
While"breast is best" for most babies, breast feeding presents a special challenge for infants with EB. Infants with blisters and lesions in the mouth may have difficulty nursing or sucking from a regular baby bottle. Mothers may decide to provide expressed breast milk to their infants. The Haberman feeder (http://www.medela.com) is a cleft palate nipple which incorporates a valve that facilitates easy delivery of the formula without the need to suck hard. This works well for babies with a fragile oral mucosa.
A dry nipple will stick to lips and blistered areas, causing more damage. You may moisten the nipple with water or Vaseline prior to feeding.
We are praying for you Patrice and your little guy Jonah! Please dont hesistate to ask any questions, if I dont know the answer, I WILL FIND IT FOR YOU!! Jennifer
Oh one more thing! The hospital had jameson laying on LAMB skin or sheep skin with NO SHEETS this helped him and once they did this he did not get any more blister from laying in his bed! Hope this helps you, Jennifer
Praying. Oh my. I am so so sorry. May you be held and carried during these days. He is BEAUTIFUL. Thank you for sharing him with us.
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
James 1:12 NIV
We shall keep you in our prayers!
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