Tuesday, November 17, 2009

not good

Things are not looking good for Jonah on the eating front. Only 11.5 ounces today, and only one of those was a decent bottle. All the others were no more than an ounce. Some he refused altogether.

I have been in tears all day. I'm so frustrated I can barely stand it.

I called the pediatrician's office today, explained what's going on, and Dr. B called me back within ten minutes. I think she reads the blog so already kind of knew what was going on. She said, "How are you doing?" I started sobbing and told her I was losing it. She said, "It's time. You know that, don't you?"

And I do know. I don't think we can put if off any longer. I've tried everything. He's just not taking it. We're all going crazy. The back of his ears are bloody and raw because of how he flings himself back, twists himself around, and fights the bottle. He won't eat solids. He won't take a sippy cup. He won't take it from a syringe. He won't take it from a regular cup after about four sips. I can't quit after thirty minutes, because it takes me thirty minutes just to get him drowsy enough to even have a chance. And even if I stop and try two hours later, it's the same thing. He doesn't know what hungry means.

It's time. And my heart is breaking.

It's not the g-tube itself. I think it would definitely be an improvement. It's the intubation that terrifies me. I'm so afraid that it will cause blistering, scarring, and will lead to a trach. And that's a whole new set of issues.

We have an appointment next Wednesday with the surgeon. Honestly, I don't know if we'll be able to wait that long to get the process started. I'm at the point of counting wet diapers just to make sure he's staying hydrated.

Every day like this feels like a million hours.

I'm just so tired. And poor Jonah. I can't even imagine how it is for him. He's got to be hungry, but just doesn't know how to feel better. He's not getting any of the extra vitamins and stuff I'm supposed to be giving him. And almost his whole right butt cheek is raw. He screams and cries in pain every time he has a poopy diaper. And I'm there. Causing the pain. Shoving the bottle. Being the bad guy. Always.

Sometimes it's just too much.

167 comments:

Brei said...

Praying for you...you are such a good mama...I cannot imagine how devastating and overwhelming and frustrating the situation is for you. Poor Jonah, poor mommy and poor daddy! Praying.

Kate Cadre 10 said...
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kiki_bourque said...

prayers for you and your sweet little man:(

Anita said...

Patrice,
You're not the bad guy, really. You are his hero!!
Love you guys!

lifelaughsandlove said...

That sounds so stressful, I can't even imagine! Poor little Jonah, and his poor mommy. I will pray that the surgery goes well and that Jonah will not have any problems from the intubation. We know God can do the seemingly impossible, and I'm praying he will do that for Jonah. Hang in there! You are doing a great job!

~Amy

Cindi said...

Oh, Patrice I can't even come up with the right words to let you know how I hate that you are going through this. I am praying for you, and hope that you will be sustained and strengthened. May God grant the doctors wisdom and I pray protection over Jonah. Love to you!

Amanda Sikes said...

I am hitting my knees praying for Jonah and peace for you and direction for the doctors. May God grant you rest as you follow HIS plan for Jonah.

Laura A said...

You are NOT the bad guy, Patrice - I cannot imagine Jonah having a better mother than you. He knows that, too - he just can't tell you yet!

I'm sorry this has been such a frustrating day. I'm praying right now that the g-tube insertion will go as smoothly as possible and that God will protect Jonah's body, especially his airway. And will pray that God will give you and Matt the wisdom to make the right decisions on the surgery and all that goes along with it.

Beyond that, is there ANYTHING else I can do for you? (I know we're slightly limited by distance, but if there's anything you need, I'll be glad to help!)

Love and prayers from TX!
Laura

erin j bailey said...

I'm a long time reader, first time commenter. I'm so sorry for all that you are going through. I will pray for you and Jonah, that everything will be alright. You are such a wonderful mother to him. How blessed you are to have each other. Sorry you have to go through so much. God does love you!

Amanda said...

Patrice,

Praying for you right now. When my son had whooping cough, there were about 3 days in a row where he drank 7oz, then 6 oz, then 4oz respectively that he did not throw back up with the cough. We brought him in to the ER for the 3rd time that week at 4am, and even after only drinking that much and vomiting, he still was not dehydrated. I don't know how EB can effect his water absorption for his cells, but they can go longer than we think before getting dehydrated.

I say that to give you hope tonight. The ped told us to wait til the morning to being him in so we would not have to go through the ER and he could call and get us admitted, but I thought for SURE he was going to die in all honesty after those 3 days--it was awful--and if nothing else--I thought for sure that he was so dehydrated that they were going to be mad crazy and stuffing his veins full of fluids--but I was wrong.

Hang in there sweetie. Let us all help carry this burden for you. It's a honor to do so.

Brittany said...

Praying for you and Jonah. I can't imagine how difficult this time has been for you. Remember that you are not the bad guy. Jonah can see the love in your eyes! Keep your spirits up, you are doing an amazing job.

Love, Brittany (Tripp's Nanny)

Nate said...
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Pam, mom, honey, said...

we fought with weight gain for the first 3 years. nothing like what you are going through but i remember every drop being so important. I am praying for you and for this precious blessing. So hoping that this can be done quickly and his little body can handle it.
you are doing a amazing job with him, keep up the good work.

Jennifer said...

Praying for you and Jonah. My heart aches for you.

Jen said...

You sweet, sweet mama.....I hear you exhaustion and your frustration. I am praying for you and your boys.

Me, the boys and a Farm... said...

Patrice,
Once again, I seem to be at a loss for words (usually they find their way...when I start typing). I read every single day and I am still amazed by you and your families strength, and I can not imagine how you do what you do every single day but do understand why. Baby Jonah is so beautiful and I know he has such an impact on the world and the way people live, act, pray, look at themselves and others. We are praying for you and your family...always...but especially now. Praying for strength, knowledge, faith, hope, trust. We love you like one of our family...even though we only know you from your blog...Praying the Lord will give you peace. Wendee

Angela said...

Oh, Patrice. I'm so sorry.

I've been really down about medical things, too. My second son, Benjamin, has Down syndrome, and has been really sick lately. We've been through the ringer in the last 18 months with open-heart surgery and other surgeries.

Yet when I get down and start to think of how hard this is, I sometimes think of you. How much work you have to do. How hard it is for you to do this day in and day out.

Yet, despite it all, you still do it. You love that boy so much. You take care of him so, so well. I hope and pray that things will look up for you very soon.

Lynnette said...

And here I am wanting to cry for you. And for Jonah. And for Matt. Prayers being said faster than I can think them.
Remember, you are not the bad guy. You are the mommy, and you are full of mommy love all the way up to the top of your head. That's why you feel like the bad guy sometimes. If you didn't love Jonah with everything in you, you wouldn't feel bad. In this case, feeling bad is perfectly ok. It means you love your baby!

Sewconsult said...

Praying for Jonah & YOU. I'm so glad to hear that you have a doctor who is compassionate in her communications with you. That is huge.
Beckie in Brentwood, TN

Barbara said...

Prayers for you, Patrice. You are Jonah's greatest cheerleader and every decision you make is made with love for your son. You are truly blessed with a sweet little baby. Prayers for all.

Jessi said...

Just wanted to let you know that lots of love and prayers are being sent your way. I'm sorry things are so hard but know he will be covered in prayers if/when he goes in for the g-tube. You are a wonderful mommy and he is oh so blessed!

Kim and Asa said...

I'm in tears for you! I remember those feelings all to well.

I'll be praying for the meeting with the surgeon. I'm praying for strength and comfort for you. I pray you have peace about the surgery and wise, talented surgeon and anesthesiologist are chosen.

I know it is so hard to claim the promises of God when the days are so dark. But please know that you are lifted in prayers and God hears our pleas for your needs to be met. When we are too tired, discouraged, and disappointed to enter into His throne room, there are others who intercede for us!

Check out the song by Travis Cottrell, "Mercy Seat".

And you are an awesome mom!!! Crazy good!

Angie Schurter said...

Hi Patrice and Matt~
I just wanted to let you know that our family is praying for your family and specifically for Jonah's feedings, that the doctor's would have wisdom, and that you would have peace and clarity in the decisions that you are making and are going to make.

The 7th grade girls small group will be praying too! I will let them know tomorrow night!

Tim, Angie, Paige, Rachel, and Nate Schurter

erika said...

Prayers for you all tonight. Prayers and hope for a better day tomorrow.

Erika from IL

Janel Waters said...

praying....

Gretchen said...

Patrice,

I am the parent of a child with Autism, and some other stuff. While it is not the same as what you go through, by any means, I still feel the heartbreak and we face many challenges. The exhaustion is many times overwhelming. I get the stares in public and there are things we just cannot do, things that all parents think about when they imagine their children. Such simple things, like his first class picture, broke my heart - as he had to be held to the side, away from the other children, and could hardly be seen.

When hard times are near, or when they seem stacked one upon the other, I try to recall this one simple line from the bible:

"Be still and know that I am God"

Psalms. 46:10


I take a deep breath, remind myself that my child was created just for me by God, and then go about taking care of me a little, so that I can be there for him. You do this SO WELL, I am often in awe of your strength.

My recipe for the not good times is as follows, and somehow, after, I feel loads better: I prepare a nice warm bath, or something else that has a soothing quality like a cup of tea. I cry a little, because my mom always taught me to get it out, and then I sit down with a scrapbook I made just for these times. It's a real scrapbook, not a digital one. It has real items stuck in it and of course, pictures. The focus of the book is the good times, the special times, and my son. There are inspirational notes from friends, cards from family, dried flowers from special days, things that make me laugh and smile, like him dressed as a chicken, or a funny card from my baby shower so many years ago now.

It took me a while to make the book and now it's bursting at the seams, I rarely get through it all before I feel like I can get through it all again, tomorrow.

I know that I have to find ways to keep myself moving, positive, and ever so diligent in prayer, thanks, and glory to God.

I read your blog almost everyday and my little 3 year old and I have Jonah's name in our nightly prayers, and yours. We want you to know that fear is okay, without it we would not know peace. God has been holding your family close and he will continue to do so. We pray for him to work through the hands of the doctors in order to enable your BEAUTIFUL child to gain the nutrition he needs.

You are an amazing mommy so keep your head up!

Jenny said...

Praying for baby Jonah and for you and Matt. I'm humbled by your fierce dedication and devotion to your baby. Jonah is truly blessed.

mrsrubly said...

patrice, i will have to say this that dehydration is very scary! however, if you counting enuf diapers per your pedi he is getting everything he needs. maybe not by momma's standards, but by Jonah's standards. while i do not have EB kiddos, i do know that frustration of eating ordeal. but you know what your a great awesome momma who is being an advocate for lil sweet jonah! take it one day @ a time! i will pray for all 3 of ya'll! patrice. you are doing a wondeful job you are certainly not a bad guy at all. it pains your heart to see jonah in pain during diaper changes! i will pray for your mommy heart tonight and about the possible upcoming surgery!!! get some rest my friend.

Erica said...

Oh, I'm so sorry, Patrice. My heart is hurting for you, and my prayers are being lifted for you. DON'T beat yourself up about this- you are doing what is best for Jonah on all fronts, whether he knows it now or not. You are doing your job- motherhood- as tough as it is. Keep it up. Praying, praying, praying.

Nancy said...

Oh no, Patrice! I am so very sad for you guys. As always, prayin' in PA. Hang in there, mama.

Reina Danielle said...

Patrice,

Please know that you are an amazing mother, for all that you do and all that you go through on a day to day basis. Don't beat yourself up. You are supermom. You may not see it, but I do, and I'm sure most of your readers feel the same way.

Jonah is a very lucky baby to have you as his Mommy.

I hope you cheer up, and after his successful G-Tube surgery things get a little less stressful for all of you.

Praying for his little booty :(

And you too <3

Misty said...

I know it must feel like it, but you are not the bad guy...you are the scared mama that is trying her hardest to walk rugged terrain. God will provide peace for you if you just remember to breathe and rest in Him. He loves you. He loves Jonah. And He has plans to prosper you, not to harm you...plans for a hope and a future. Know we're praying still...sending love from a perfect stranger, from one mama to another. Just keep loving Jonah - you'll never regret it and you can't love him too much...he feels it! <3

Rachaellh said...

My heart just breaks for you tonight. I am so sorry that you, Matt, and Jonah are having to endure this. I pray that the doctors will give you answers that give you peace.

Your love for your little boy is so obvious and all of us that read your blog know what an amazing mother you are. You sacrifice yourself every day in every way for Jonah. He is so lucky to have such a diligent, caring, compassionate mother as you to help him through day to day challenges.

I pray that your heart will be at peace as you and Matt make very difficult decisions in the next days. The best advice I ever received as a mother was to always listen to your mommy instict. YOU are Jonah's mom and YOU know him. Trust yourself and know that you are an awesome mother.

Mindy said...

We are thinking about you and praying. Keep praying.

Stacy aka Fahiima said...

I don't know what to say other than

1. I'm praying for Jonah

2. I'm praying for you and Matt

Courtney Roth said...

My heart BREAKS for you.
I know you don't want to hear any advice right now... I know how you feel. Nothing will make this easier. I just want to say I love you guys more than anything... I think you are the best Mommy ever... and so does Jonah. I'm here if you need me. You know that. Just a phone call away... NO MATTER WHAT TIME.
Love you!

Anita Johnson said...

Praying for you and your little man from Wisconsin...

Stefanie said...

I'm praying as always! I can't even begin to understand the frustration you are feeling but know that all your readers know you are a wonderful mother and Jonah knows it too!

Precious 3 said...

Praying!

Audrey said...

You are NOT the bad guy! You love that sweet boy more than anyone in the world. You are his rock. His security. His comfort.

We will pray all along the way. We will pray, we will be here, we will lift you up. I just wish there was more to do...

I'm sure this is a really dumb question, but can they just lightly sedate him and maybe not intubate him? I realize they need him to be calm and still, but are there options? (I'm totally clueless on this so forgive my dumbness...)

Oh how my heart hurts for you tonight....

Melanie said...

Hang in there! You can do hard - you've been doing hard - this will pass. We will pray for you and Jonah. It will all be okay and you will endure this trial too. You are strong and so is Jonah - many prayers your way!

Mel said...

Patrice,
My heart just aches for you, dear. I can only begin to imagine the fear and frustration you are feeling. You, Matt and this precious boy who has just stolen our heart are covered in prayer.

Mel

Mel said...

Patrice,
My heart just aches for you, dear. I can only begin to imagine the fear and frustration you are feeling. You, Matt and this precious boy who has just stolen our heart are covered in prayer.

Mel

Brittany said...

Oh Patrice, you are not the bad guy! You and Matt are Jonah's heroes! I know there is not much comfort in words we can give right now- but I will be praying God's amazing peace over you, Matt, and little baby Jonut!

Sara said...

Serious ask about the spinal block I mentioned before, it might be an option.

Also, this is for the other blog readers who are wondering, EB kids can dehydrate in a matter of hours and in very severe cases it can lead to death within days. So its a constant worry not only to make sure if your child is getting enough to grow, but just to survive. I have been where Patrice is and it is a very frustrating and scary time, not knowing what might happen next or what the right thing to do is. Sometimes with EB you have two choices and they both suck, so you have to pick the ones that sucks the least and even then its not fair to have to make that kinda choice for your child.

Bridgesfam said...

Sorry to hear you and Jonah are having such a tough time. I'll be praying for a successful surgery and that the g-tube will help alleviate the concerns you have for his nourishment. Also praying he will never need a trach.

tchrbiker said...

Praying for you and Jonah.

The Clarks said...

Just a thought, are you using the same nipple since Jonah was a newborn? Different "flow speeds" as babies get older. We had a foster baby that took a long time to eat and would get frustrated and push the bottle away. I actually tried the nipple and it was really hard to suck the liquid out. Thanks for sharing Jonah's story!! Praying for a voracious appetite! Jonah's not yours :)

Scout812 said...

My thoughts and prayers are with you guys...

I don't know if this is possible with an infant, but my Grandfather had to have a colostomy done when he was older and had breathing difficulties. They did not feel it would be safe to intubate him, or put him under. The performed the whole operation with him having an epidural (I can't remember if it was an epidural or a spinal block, but I know he couldn't move...it was like he was paralized for the hours the medication was working) They gave him drugs that made him drowsey and loopy, so he didn't remember anything, but did not put him out under..

Again, praying so hard for you...

shoutingforha said...

I'm so sorry. I cannot imagine what you are going through.

I am praying that you have peace... praying that the procedure goes smoothly with no complications... praying for your sweet boy...

Our life is a bowl of Barry's said...

I'm so sorry the stress this is causing you. I know how frustrating it can be to try and feed a child with no medical issues and I can completely understand your panic. I pray that some peace comes to all of you as his surgery approaches. Hang in there......

Rebecca said...

Praying for you guys. Hang in there. I know you are doing everything you can for sweet Jonah. You are one tough Mama!

Kate said...

I know exactly how it feels to always be the bad guy, causing the pain, doing the hard stuff for the benefit of the child who doesn't understand.

I am so sorry.

((((((( HUGS ))))))))

I pray the g-tube provides the same relief for you & Jonah that it did for my youngest. I will pray for supernatural protection of Jonah's airway during the procedure.

You're doing the best you can in extremely trying circumstances. The devil is trying to beat you down and tell you you're failing. I'm a sister in Christ standing here telling you that the devil is a jerk and he's totally wrong. You are absolutely not failing. I do understand the pain in your heart, though, and for that, I feel so much compassion for you.

(((( many hugs )))) and prayers.

trinacoyle said...

Hey Patrice, praying for rest and relief for you from weariness and anxiety right now. Special prayers for Jonah, that he could/would accept the nourishment that you are offering and that every ounce that he can take be multiplied for his benefit. My heart aches for you as a mother and I just lift you up for a sweet replenishing of the Holy Spirit that you may know that you are not alone.

Following HIM said...

Peaying for sweet baby Jonah and his parents. This news may not be good but the gtube may help the feeding issues! Love, hugs, and prayers on on their way to you!
~Elyse

Weird Unsocialized Mom said...

(((Hugs))) Lifting you up in prayer right now.

Design from the Heart said...

Praying for you guys and that if Jonah has to go through this procedure it will go smoothly - no complications with extra sweet and attentive nurses and doctors. This fight is not over until you win - and YOU WILL WIN!!!

Melissa in TN

lottfam said...

It's so sad to see you have a "low moments" label on your blog, but I can definitely understand why. I've been praying God will give you the wisdom to know what is best. Will continue to pray and ask for extra strength for you and Matt as you make decisions in the next week . . . janelle

amathyst-eyes said...

I'm so sorry you all are going through all this...I wish there was something I could do or say to help. Have there been ways other EB babies have been intubated without problems?
You're all in my thoughts,
Lesley

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

My heart is breaking for you tonight Patrice...as it does every night. In my perfect world I live near you and we are very dear friends and I can come and help care for Jonah or just be with you when you feel you have lost another battle.
My house will be praying and fasting again tomorrow.

Me, the boys and a Farm... said...

I know I have already commented once tonight...but I can't get you guys off my mind...Just wanted to say you are the most wonderful mom, Patrice. You handle your life with such patience and GRACE!

Jessica said...

Lots and lots of prayers for you and Jonah. I can't imagine how heartbreaking it is for you as his mother to not just be able to make things better. I wish I could wake up tomorrow and read your blog and see that Jonah is eating like a champ and his skin is completely healed but I know it doesn't work that way :( So I'm just gonna keep pestering God until He brings on another miracle. He loves it went we pester Him! If Jonah does get a tube, how long will he keep it? Maybe thats a dumb question but I was just wondering.

Mimmy said...

Patrice = I've been gone for a while and I'm so sorry to hear that Jonah's feeding troubles have gotten worse instead of better. I know you are not looking forward to a feeding tube, but as you said it mike make things easier. My husband had a feeding tube during his cancer treatments and it didn't create any problems. You just have to be very careful to keep the area around it clean and will need to have the doctors show you how to accomplish that for an EB baby.

I was scanning other posts you and written and want to tell you of a formula I put one of our daughters on when she was just over a year old. She had quit eating anything and refused to chew vitamins so she wasn't getting nutuition or hydration either one. Her weight dropped about 5 pounds and on a 20 pound baby that's a bunch. I would mis an egg, 6oz. of regular milk, 2 tsps. sugar and 1 egg. Put it in the blender until the egg was totally mixed and the sugar dissolved. Consider this was in the 70's when things were a little more relaxed but I'm sure you could use egg substitute or pasteurized eggs. It tastes like an ice cream mix and she lapped it up. She put her lost weight back on real quick and was soon eating table foods. I wouldn't want you trying it without talking to your doctor to see how he feels about these rather older concoxions. My mother had one she used with my twin sisters when we picked them up from foster care. They were twin girls and at 30 days old still weighed less than 5 pounds. She got them home, took off all their clothes, washed them from head to foot, put their nice new clothes on them and fed them her formula that is a combination of evaporated milk, light Kairo, and water. I have no idea as to the proportions but I could probably find out. I think she finally wrote it down and put it in with her recipes. If you are interested in this one, let me know. Those little girls filled out in a jiffy and were eating rice cereal with egg in it by the time they were about 3 months old.

There is no way I can really understand what you are going through but I do know, as do you, that God is in control and we will allow to happen what is the best for your entire family. Hang in there, keep trying and something will work out soon.

Love you to Heaven and back,
Mimmy

Lisa said...

I have been reading your blog for several months and praying for your family. But today I felt I must comment. You are so not the bad guy. You are in a horrible place as a Mommy. Nothing is worse than having to cause pain to your baby, no matter how much it is for their own good.
My son, now 13, has been difficult to feed forever. No physical reason we ever knew. Like you I counted every once he ate. And worried myself sick. Was afraid to trust anyone else to feed him because they wouldn't push the issue. Got sick of people saying a kid won't starve himself. Easy to say when your kid is slurping down the bottles even 1/2 the time! No, our issues were nothing like your sweeties, but just wanted to let you know of another person who has felt the helplessness you feel as a mommy.
Praying that if he must have the tube, the procedure with the intubation doesn't cause major issues. Wish I could give you a big hug.

iluvmysweetgirlz said...

I cannot even imagine what you must go through daily or what Jonah goes through. You are such a good Mama and an inspiration to so many people. I will pray for Jonah to handle the operation well, for you guys and I will pray for the doctors who do the procedure. Keep your chin up, you are wonderful and doing amazing things for your son! Thank you for sharing your sweet baby with us!

~Kristi in Colorado

Jennifer W. said...

Praying for you and Matt and sweet Jonah.
Jen

Carrie said...

Ugh, I am so sad to hear about these struggles. Poor you, poor Jonah. It's just not fair. Praying and praying for you.

Kellye said...

Oh, my heart hurts for you...I don't know what to say except that Jonah is blessed to have a mommy who is such a strong advocate for his needs...I am lifting you, Matt, Jonah and his doctors up in prayer. I pray that even when it's tough, God grants you perfect peace so that you can feel comforted in his love. Blessings to you...

Annalien said...

I am so sorry that his eating has not improved and that you are feeling low. I think you are an incredibly strong person and that you are doing an amazing job. I will pray that the Lord will lift you up and give you the further strength you need and I will pray very hard that Jonah's surgery will be successful and without any side effects. God bless you and your family!

Iluvdancn4jesus said...

I pray for you and sweet Jonah every day, praying for strength for you and a supernatural healing for him, a complete healing that will leave him whole to grow up and live to be an old man, with no more sores, God is bigger than EB. I am praying and believing for a miracle!

Jasmine said...

I really feel for you and am sad that it has to be so tough. I am hoping for the best and I'll be thinking of you and your family.

Dave said...

Thinking about you and your family, and wishing the best for you all.

Sara said...

Bless your sweet heart :( If/when this happens for Jonah, it just means you guys are going to have to find a new "normal", and once getting past the scary trach part, Jonah will be right back on track with gaining weight. You have so many of us out here praying for little Jonah and you and Matt, I can't even imagine how scary the intubation and trach thing is for you, but please know that there are hundreds of us out here praying for you all, and we love all of you like we "knew" you.
Much love from Texas~
xoxox~

jardinera linda said...

Ay, Patrice, ¡qué frustración ver tu sufrimiento y no poder ayudarte...! Intenta (sé que es difícil) pensar solamente en hoy y en mañana, y no en el futuro, eso ayuda.
Eres una gran madre, y no estás sola: tus seguidores estamos contigo.
¡Ánimo Patrice, ánimo Jonah!

Shuggamom said...

Praying for everyone!!!
Love you all!!

Stacey

RLR said...

Patrice - I think of you all very often. Sometimes it's silly things that make me think of you, and sometimes it's looking into my son's eyes, and sometimes it's just because it's time to pray and you are always on my list of things to talk about with God.
I'm so sorry for this rough patch that your family is going through. I'm praying for wisdom, strength, and peace for you and Matt. I'm praying for wise and skillful doctors. I'm praying for a strong and healthy Jonah!

Debbie said...

Oh Patrice, I feel your pain...

It's time, and I think it will be better. You've done everything, gave everything.
You are such a good mom....and you must be soooooo tired...
Our daughter just had surgery so I can imagine just a little bit how it must be to totally be focussed on your child's medical care.
And when I have a rough time I always think of you.

With the g-tube the whole nutrition-frustration will take a step back.
I really feel for you, and wish I could be there for you (I'm from Holland....that's a bit far ;-)....).
I wish you, Jonah and Matt love, strenght, wisdom, rest, And hope Jonah's sore bottom will heal soon.
Good luck with the g-tube.
Give Jonah a big kiss & cuddle from us!!

chinamoon1420 said...

Oh Patrice, how I wish I lived near you to help give you comfort. I can't imagine what this must be doing to you and to Matt knowing there is nothing you can do to help Jonah, not to mention the "not fairness" of it all. All we can do is lay our worries and stresses at The Lord's feet. He will take care of us. He is taking care of Jonah, you and Matt. I hope you can feel His peace surrounding you all. You are not the bad guy but we mommy's can feel that way so easy. But in our moments of clarity we realize the truth. I will be praying for so many things for you all tonight, especially for Jonah's raw little bottom. It is horrible to see your child in pain and not be able to help him.
I hope your Wednesday is better than your Tuesday.

Much love, BIG BIG hugs and many prayers to you

LeeAnn said...

Praying for peace and strength for you tonight.

Jackie said...

You are an incredible mom! Most other parents who have struggled through your experiences would have given up way before now. You are to be commended. God is watching over you and will guide and direct you. You are in my prayers.

Cathy said...

I'm really sorry. We've been there on the feeding issues, and it sucks. I've been the bad guy, and it's an awful feeling.

One thought for you - if you're resigned to the feeding tube, you might back off on the higher calorie formula, in favor of hydration. Dense formula like that is so osmotic the body doesn't get much fluid from it. You could also try some flavored pedialyte during one of the feedings he usually doesn't get much anyways .. at least that way whatever he DOES take is pure hydration.

I know it's a crap choice to make, but when you're to the point of counting wets hydration trumps calories, at least in the short-term.

I hope it goes smoothly for you, and that the g-tube brings you some peace and rest.

Amy O'Connor said...

You are such a good mommy to Jonah. I'm sorry you and Jonah are having a hard time. Prayers for you all.

three little monkeys said...

Patrice,
I can only imangine what you are going through. Just wanted you to know that you ARE NOT the bad guy. ANd Jonah KNOWS that you are not the bad guy. Just try and keep your spirits high and I'll be praying that everything goes alright.

Kim M said...

You are the loving mom God choose for Jonah because you are the best for him. I cannot imagine how hard it is with the frustration and knowing he is hurting. Please know we are here loving on the 3 of you and praying God gives His grace in just the right amount just when you need it. Praying Jonah can begin eating on his own. Also praying if the G tube is needed, the procedure will go smoothly for our little warriror.

Thank you for sharing Jonah with us. Each morning I think "I've got to check on Jonah!"

Erika said...

my heart is aching for you all - praying praying praying. you are a good Mama. you are very REAL, and your anguish shows just how deep your love goes for that sweet little man. you are a VERY good Mom. Praying for each of you, sweet family.

Monkeys Mommy ♥ said...

Prayers for your sweet little boy and you his incredible Mommy!

Rikki said...

Hi Patrice,

i've been reading since J was born. just wanted to chime in with you and say EB SUCKS. i'm sorry you have to live with it, and i'm sorry Jonah has to live with it. i know you know the Lord, and i pray he will renew your hope, even in these dark times.

Patty said...

I have no words to say to you except I am praying for you and your family. I follow your blog daily and can not even imagine your mommy heart hurting at it's most right now. Jonah ultimately is in God's hands and anything that we try and think thru to do what's best for him is nothing compared to what God has in store for him. Don't fight the g-tube any longer. It will all turn out according to the way it was planned to. We love you and oh how I wish that I could live closer and be a "helpful" friend to you. Please, please do not give up the fight....you are all Jonah has and he is the love of your life. Please keep us all posted http://www.annikagrace.blogspot.com/

Lacy said...

Hang in there lady! It will all work out!!! Sending prayers your way...

froggieang said...

Sending extra prayers up for you and Jonah (and Matt), I follow your blog daily and think about you quite often. Praying for God to wrap his arms around you and give you strength!

Jimmie's Auntie Amber said...

I'm in tears for you guys. No EB here so we can't possibly truly understand what you are going through. Jimmie is also on his way to a g-tube though and the feeding issues have truly made his mother crazy and desperate. We are praying for Jonah and you and Matt.

Meghann Gehring Turnquist said...

I'm sorry we both spent so much time yesterday crying. I've been thinking about it a lot and I think a g-tube would give you a lot of peace and comfort. And as far as the intubation fears, perhaps feeding Jonah through a g-tube would allow his throat to heal while not fighting to swallow, cough and spit up.
I hope today goes better.
Praying for you guys.

Jess said...

Praying, praying for you and your family.

Ellie said...

I actually prayed for Jonah last night, that he would be able to eat more. Now, tonight I will pray that the procedure doesn't cause even more problems. I hope it turns out to be a great thing, that it ends up bringing you, Jonah, and Daddy some peace.

Linda said...

Oh Patrice:
My heart is breaking for you. You have been through so much and I really don't know how you do it. Hang in there and remember we are all praying for your precious son. Hopefully the gtube will be the answer. God Bless You and hope to meet you, Matt and of course Jonah. Take care. Love Leah's Nana

Miss Erin said...

Bless you Mama. Prayers sent your way.

Kelli said...

Gentle ((((HUGS)))) for you and Jonah, Patrice. I don't think I have ever commented before, but I just want you to know I am praying for you guys. My heart hurts for you, sweetie. I will be praying for a successful surgery (if that is what happens) and peace for you and Matt.

Kelli

minshewmom said...

Prayers for you and Jonah!

Kristen said...

Wow, my heart breaks for you. There are no words I can say that will make a difference, but know that daily (as in since Jonah was first born and in the hospital, daily) I am lifting you all up to the One who can and will and is making a difference.

caryn said...

Praying for you all. I absolutely love your blog. I wish Jonah was eating better for you, but you are an awesome Mommy (and Daddy too). You are doing the best for your darling babe. Hang in there and know lots of people out there are thinking/praying/loving you!

Lari said...

Praying for all of you.

Heather said...

Patrice,
I am so sorry. I cannot imagine going through what you're going through...or poor little Jonah for that matter. I will be praying that only the things that benefit Jonah will happen and that the negative things will not. Praying they can get him a G tube and nutrition with no blistering or complications. Praying for strength for you...you have to be exhausted.

Lis said...

Patrice, I don't even begin to know how you feel. I don't know you but I love you. I love your little man.. This verse is for you today... straight from God...

Those who TRUST in the Lord will renew their strength; they will soar on wings like eagles; they will run and not grow weary; they will walk and not faint.

Put your TRUST in God and he will take care of little man...

Love you!

Gabriella said...

Thoughts and prayers...

Erin said...

That baby looks at you and sees love, don't doubt it.

Lord God, protect Jonah's throat and give Matt and Patrice your peace. If it is not your will that he have a g-tube put stumbling blocks in the way of it. I pray for new mercies every morning for this precious family. Thank you for Jonah's life. a

Julie said...

Praying for you...all of you...but especially your mommy's heart, Patrice. You are such a great mother for Jonah (and Gabe) and you are trusting your instincts. I know it's hard...I know it's scary...but just know that this next step will get Jonah the nourishment he needs.

Wishing I could make it all easier for you...but know you are in my prayers!

Hugs and prayers from Indiana.

Joanie said...

Oh I didn't realize it was the intubation that could cause a need for the trach. I'm almost in tears with you now. I'll be praying hard that that doesn't happen.

Jara said...

Sending healing thoughts and prayers!!

McCullough Family said...

Praying for you!

val said...

{{{hugs}}}

I will pray for you & your family.
You are doing your best & I know God will see you through this trying time.

Amy said...

I'm thinking of you and your little guy. It seems that the tube might be able to help Jonah better as he will get the proper amount of calories easier to help his little body grow and fight his skin issues better. I know a young child with EB who also had to endure this and it helped with their growth rate a little bit more as well as the intake of medications needed.

Kathryn said...

Oh Patrice...I'm so sad for you. I wish wish wish I could help...physically help. I wish I lived closer...could come sit with you...do something...

I am praying...I will continue to pray...

I was an Operating room nurse before I chose to stay home with my children and have been in many G-tube insertions (on adults, so it may be a bit different for kids) and from my experience it is a QUICK procedure. Maybe there will be no need for intubation...maybe they can just use a mask to breathe for him while the tube is being placed. Thank you for the update...thank you for being real with us--even those of us that have never met you.
I constant prayer...
Kathryn
in Kansas City

Tracie said...

Everyone seems to have said everything I wanted to say so I'll just leave it at: I'm thinking of you and praying that all goes well with Jonah. You are such a great mom!

kedw said...

you are such a good mom! Jonah is so lucky to have YOU!
I am praying that everything works out! I know how bad it feels to be the 'bad guy". I feel like the bad guy every day. But my son is just pissed becuase I am not his dad! loves his dad....
but really, you are a really great mom!!!

Toni :O) said...

Oh sweet Patrice, so sorry to hear about Jonut. I wish I could be there to give you a big ole hug and take all this pain, frustration and hurt away. I'll keep praying that things improve and if not, I'll be praying that his surgery goes well and there is no complications or worse blistering from it. Hang in there darlin cause remember, you are doing the best job you know how and you are not a bad guy...just a mommy loving her son to the moon and back!

Kendra said...

My heart is breaking for you. I have been following your blog for quite a while now and you are such a wonderful mother. Jonah and your family are such an inspiration. I can't imagine how frustrating it has to be for you. I am thinking of you, your family, and Jonah and praying for you. Stay strong.

We4Kingz said...

Praying for your family.

Debbie Nifong said...

Patrice you are an amazing mom and don't feel like you've failed because a Gtube is needed. I'm a nurse at Brenner's and attend Pinedale. I work with lots of GT and trachs so very familiar with both. I work with he Peds ICU Dr's who are anesthesiologist- they are all great. In the OR Dr Joe Tobin is my favorite in the OR and Dr Bauman is great too. Dr Tobin is the chair of this area and both have been there many, many years! Ask for them. Make sure you only get a pediatric anesthesiologist!Gtubes I think Dr Pranikoff does the best work and is the neatest. God is our great physician and healer of all. Our family will continue to pray for you!

Brooke said...

Praying for you and your sweet family.

Elizabeth said...

We are praying for your family in Winterville! We love Jonah...and we are praying for wisdom for your doctors and some stress-relief for you and Jonah!

Shari said...

Oh Patrice! My heart goes out to you. You aren't the bad guy! You are such a good Momma. Know I am praying each day for your precious Jonah and you and Matt.

emily said...

You are not alone. We are all praying for you and Jonah. May God give you peace, comfort, and healing for Jonah.

Sabrina said...

Praying! I can't imagine your pain or baby Jonah's pain. You are doing what you have to do. Praying for the best outcome for Jonah's upcoming procedure. Just praying!

Katherine @ Grass Stains said...

Sweet Patrice, I am so, so sorry about what you're going through with Jonah. I get choked up when I think about how you AND Jonah feel as you try to feed him. I am continuing to pray, pray, pray for your circumstances and hope to get to spend time with you next week. If your surgeon's appointment is Wednesday, is there a chance you might not get to come to Florence? I will be so sad if we don't get to spend time with you guys, but of COURSE Jonah's health needs come before travel and family. We love you so much!

Go East Memphis Mama said...

I'm so sorry Patrice. I know how bad I feel when I can't alleviate the pain from something as common as an earache so I cannot fathom what it must be like for you. Please know that I continue to pray for your family...your guys are always on my mind and I check your blog daily to see how you are doing. As much as it stinks you are not the bad guy you are the ultimate good mommy b/c it takes great strength to do the things we must for our children even when its not popular. Stay strong!

Leslie said...

We pray every night for your family and especially sweet baby Jonah. You are such an amazing mother and Jonah is so blessed that you are his.

Tracey said...

Oh, Patrice, there are no words that can even possibly come close to being consoling or helpful, but yet my heart wants to offer something powerful in words for you to read. What I can do is go to the Lord in prayer and ask Him to hold you and Jonah in his loving arms and guide you to the place and decisions that will bring a smile back on both of your beautiful faces. I know that the Lord will make you both full...In the meantime, stay strong and hold tight, He will never, ever let you go through this alone...that's a promise. Much Love to the three of you!

Jen Burns said...

God asked us to pray for Jonah last night, He understands your pain. I pray for a uncomplicated g-tube surgery.

Jessica said...

Im so sorry! Just know we are praying for you guys!

Seth's Mommy said...

Oh - you are NOT the bad guy! Sometimes it definitely can seem that way - but it's NOT true!

I will be praying for you and sweet little Jonah!

Linda said...

Patrice,
Even though we haven't met-you have a special place in my heart and thoughts. I will say extra prayers for you as you struggle with all that you are facing. And, as always, I will continue to pray for the miracle.

gretch said...

You are doing everything to give Jonah hope for a healthy and happy future...keep up the good work and leave the uncertainty in God's hands. I pray for Jonah, that everything will go smoothly and as intended. I will also pray for your joy and optimism to be renewed...sounds like you have had it rough lately~!
xoxo to Jonah!

Aileen said...

Praying for you, and Jonah.

Mama10EE said...

Oh Patrice, my heart is breaking with yours! I can't even begin to imagine how hard things have been in your home lately. I pray that this new step will be just what he needs to get everyone back to smiling and happy times. Will constantly pray for his intubation.

Stacey said...

Now thanks be unto God, which always causeth us to triumph in Christ, and maketh manifest the savour of his knowledge by us in every place. (2 Corinthians 2:14)
Patrice, God is love, peace, comfort, faithful and so much more. This I know you know. But I can't help but to think that there is a sweet savour of "knowing" how good God is that encompasses Jonah everytime his Mommy is near him. God is evident in your life! This is just another point of triumph for you! Many prayers!

Amber S said...

http://everybodysgottagetaway.blogspot.com/2009/11/baby-jonah.html

I have added Jonah's pic and your website to my blog. My prayers are with Jonah and family.

Michelle said...

Love to you and prayers going up for all of you.

Heidi said...

I am in tears for Jonah and you. I pray god gives your little boy some comfort.

SkodaFun said...

Being a mom is SO hard. You're doing your best and God is there with you. Even when you think you can't go on you can and you do for the love of that sweet baby!! Praying for an easier day today.s

Mary Ann said...

Bless your sweet heart and that precious baby. It doesn't seem fair in the grand scheme of things that a little one has to suffer like this, along with his parents. God has a plan and I know at times like this, it is hard to believe. Hold onto your faith and each other and this too shall pass. God Bless all of you.

Jenn said...

Sending hugs your way

Krystal said...

Oh, Honey, I'm praying and begging God to hold you in His arms and love on you. I am praying for Jonah and will pray specifically that God will work mightily in your lives. I hurt for you in your frustration. You ARE doing a great job with Jonah. Sometimes Jonah's gonna need something more than you can give. That really hurts, I know. I'm taking it to God and asking Him to bless, sustain, and encourage you.

Wanda Wilkinson said...

Just want to say I love you & your family & I am praying...

Ashley said...

You will continue to be in my prayers daily. Hang in there, lady. You are doing a great job caring for such a sweet, adorable little guy.

Frugalista Mama said...

Praying for you and Jonah. I am so sorry :(

Cory said...

Patrice,
I am a NICU nurse in St. Louis. There are a group of us that read your blog daily and are so impressed and proud of how well you do with Jonah. There are a lot of people who would have given up a long time ago. But you continue to fight for your child and give him every single opportunity you can. Day after day you and Matt are his advocates in this world that is sometimes so cruel to the most pure of beings. Even as I sit here and type, I am sobbing for the torment you are feeling. Please know that we all love and pray for you. I can't get Jonah's beautiful blue eyes out of my mind. I only wish that all sick children had a wonderful mother like you. Please know that my heart is with yours on this fearful day. And know that God will help you, Matt, and especially Jonah overcome this hurdle.

With Love,
Cory

trying4two99 said...

Honestly, I can tell you need a break. Your human!! I'm the mean grumpy lady in my home.. I think I even have a theme song, cus my son invented one... I'm praying for you! Remember GOD loves you!!

Beth said...

Praying for Jonah, always!!

God is near, He is always near, even in the darkness.

Kimberley said...

I don't have the right words...but know there are prayers flooding the gates on your - and Jonah's - behalf. You're an amazing Mommma. I can't even imagine. Keep us posted..and we'll keep praying!!! xoxo

jandkland said...

This is definitely a low, low moment. And you are in a position no mother should ever have to be in. Your boy is facing something no child should ever have to face. The unfairness of it all is overwhelming. I can only begin to comprehend what it must be like for you day in and day out, to love your son more than words can express and not be able to feed him properly, care for his skin like most mothers can, and get him out and about on a regular basis. I am so sorry for the entire situation. Just know that I am praying for you. Keep on hanging in there and know that we are beside you in prayer.

--Kelley in GA

Diane said...

You are such a good mommy and like a mama bear you have fought the good fight to protect your baby. All of you are always in my prayers, but especially now to get through this.

No Looking Back said...

Praying for you all.

thorney said...

Patrice and Matt, Keeping you and Jonah is our prayers as you enter this new phase. Jonahwill begin putting on weight and we get all the calories he needs soon. God is in control of it all.

I have had an eating disorder and was a pic line, in my left arm, for months on end. I gained weight and stopped being dehydrated all the time. So, I can tell it works an it takes care of business.

Keeping you in prayers.

--Mari

Just Me - MJ said...

I am so sorry you are struggling to get Jonah to eat & remain hydrated. My little guy (almost 2) has a growth disorder which interferes with his hunger cues and he has no interest in food or drinks, either - it is the most frustrating, awful, painful cycle in the world to repeat over & over & over again. I am so sorry. Sending up special prayers your way.

You are an amazing mother and this, too, shall pass. I hope that the decisions you'll face are relatively easy ones and that one way or another, Jonah will improve. Hang in there and take it one moment at a time, letting the rest just...happen.

brandie said...

Praying hard for you.

Charisa said...

Thinking of you

MelArcile said...

Oh Patrice. You are don't the absolute best job as Jonah's mama. Don't feel down. We all have those days, maybe not as drastic, but horrible, bad days where you just want to throw in the towel. I personally believe that's Satan, getting to you at any and every angle possible. You are making the right decisions for your baby. Take comfort in that and that you are surrounded by love and prayers and a God that only wants the best for you and for Jonah. I certainly hope you can feel the love.
Melissa

Rebecca said...

I just want you to know what an amazing mother you are. I am so impressed/amazed/humbled reading your blog. You have such a load to bear, and despite what you may think at times, you do it with such grace. Someday Jonah is going to see all this too. Hang in there, we're praying for that sweet little boy (and his mama too)!

Ani said...

Patrice, you and Jonah are in my prayers tonight. I am praying for peace, medical miracles and for continued growth for Jonah.

My baby girl was fussing tonight, refusing to nap and just plain being a baby. I was at my wits ends, and then I read your post... I am ashamed to admit that I was feeling overwhelmed when I should be grateful and humbled for the blessings in my life.

Hang in there, we are rooting for you guys!

Kim said...

My family has been praying for you all for awhile now. My daughter had a feeding tube for 3 years. It was for severe reflux, so I know your situation is much different then ours, but I hope you don't mind if I share some of the things I learned, maybe it will help a little bit. Having the G-tube didn't change the way my daughter reacted to formula, it still caused her reflux. Not until we tried Neocate and then a blenderized diet did her reflux seem to decrease. Pediasure, has been nicknamed 'pedia-vomit.' Sorry if thats gross, but apparently many kiddo's don't do well on it. So, I guess my advice would be to find a formula that agrees with him before you go to the g-tube. Having said that, once we had the g-tube put in, it was such a relief. We didn't have the daily battles of trying to feed her, the worry etc. There was still lots of vomit and crying, but it got better after we found the best formula. Praying for you in Atlanta-
Jenny

Melissa @ The Littlest Lobo said...

My heart hurts for you and little Jonah. Praying he eat more & that there will be no ill side effects from the GI tube insertion. Stay strong!

Carrie said...

Why can't Jonah get feeding therapy or OT? I am just curious as I have experience with feeding therapy. This is a pretty common reaction to babies who have had reflux and there are therapy methods. As of now though, I would say do the G-tube and try to get him some feeding therapy of some kind. I know this is of course complicated by his EB and understandably he might always need the G-tube. But a feeding therapist might be able to help get him to enjoy food at some point- maybe when he is 6 months older. I hope that things get easier for you! This is just a thought, maybe you have explored it already.

Melanie said...

I'll be praying for you and your sweet family! So sorry your having to go through such hard times.

Claire said...

You don't know me, and I don't know how I found your blog. But Jonah is just precious, and you guys are just such dedicated and loving parents, that I keep coming back! My brother had cancer twice when he was younger. The first time, eating was a huge battle, and getting enough calories in him consumed every thought and every moment of every day. It was such a stress and such a burden. He was often hospitalized for malnutrition even when he didn't need to be hospitalized for chemo or infection. He was a teenager and knew he needed to eat, but he just couldn't do it. When his oncologist called us to tell us he had relapsed, she told us his cancer was back and he was getting a gtube before starting treatment. If she couldn't save him from cancer that was one thing, but he was not going to die of starvation. It was not up for discussion, and he had the gtube put in immediately.

It was the best decision and we never regretted it for one second. We were afraid of the feeding tube because it sounded so permanent and it seemed like we were giving up. But it took away ALL pressure and stress related to eating, and let us use our energy to fight cancer. If he wanted to eat he could, but if he didn't want to, we would just put more formula through his gtube.

That was 5 years ago. He survived recurrent medulloblastoma when no one said he would. He is now a senior in college and his new hobby is cooking. The gtube is long gone.

I know Jonah's story is different and that like you said, intubation is the bigger problem. But soon this will all be behind you, and you will wonder how you ever survived without a gtube and why you didn't get one sooner : )

Sending lots of love and prayers!
Claire

Miriam said...

My heart is breaking for you and Jonah. You are an amazing mother - taking such wonderful care of your special boy.

Thinking of you all and wishing strength for the days ahead.

Debbie,mother of two said...

I am so sorry for what you are having to go though. Praying for the whole family. I am sure you are frustrated about it all. I wish we could just say Lord fix this and it would be done. I know he can fix it though. Praying that the Lord wraps his loving arms around all three of you. Praying for Jonah's bottom also.

dragonflyz in June said...

Oh Patrice! HUGS!! I know it is hard, we all want perfection for our babies and it is so hard. I will keep you in my prayers! I know that Jonah does not see you as the one who causes pain, he adores you, I can see it in his eyes in the pictures. You are his world! Keep your chin up

Peace and Blessings
Crystal