Monday, April 6, 2009

prayer request

Please be in prayer for Jonah. He's not eating well, and acts like he's in a lot of pain when he does eat. He'll take an ounce or so, and then he just starts crying. It takes at least an hour to get him to eat two ounces and half the time he won't even take that much. And when he does have a good feed, he spits up half of it. Because he's not eating well, he's also not sleeping well overnight (waking up every hour), so I'm getting frustrated and really irritable. I feel overwhelmed and exhausted.

He has new blisters all over his belly all of a sudden and a big blister on his lip.

His dressing change last night could be classified as a disaster, and we had to quit half-way through to try to calm him down. It didn't really work, so he basically cried through the whole thing. He's still on morphine and ativan, but last night, you would have thought he wasn't on anything. We didn't even get to do his right arm because he was so upset. He's getting a rash because he's hot, moist and dirty, and the only way we can bathe him is by bulb syringe, one limb at a time. He usually freaks out when we do it, so we can't really clean him well, and definitely can't get in all the nooks and crannies like we need to. I can't even give my baby a real bath.

I generally just feel pretty ticked off these last couple days at the unfairness of it all, and am having myself a big ol' pity party. I HATE feeling like that, and I HATE that Jonah is in pain and I can't take it away. I HATE that our "family photo" was taken at a cemetery yesterday, and I HATE that my baby can't even eat without hurting. I HATE that his face and head are getting blisters a lot now (since this was a pretty durable place previously), and I HATE that he's tired and hungry. I'm afraid that if he doesn't start eating better soon, we'll end up back in the hospital. Please pray that he will begin eating better and that we will figure out what we can do to help him. I'm going to give it until tomorrow and then may have to take him back to the doctor. I'm not sure what they can do, though, until we see the ENT, and that appointment is not until Thursday.

I'm completely frustrated, and if I really admit it, angry. And as much as I hate feeling it, I'm angry at God a lot of the time. I just don't get it. Please pray for me that I will regain perspective, and that once again I'll feel like God and I are on the same side... that I'll feel his arms of comfort and peace around me... that I'll draw near to him again - He hasn't gone anywhere, but He's feeling pretty far away.

168 comments:

Anonymous said...

Praying for you all!

The Byrd Family

Anonymous said...

praying

Hope said...
This comment has been removed by the author.
j3k said...

It's ok to be mad at god! I've been pretty angry with him many times..... I'm pretty certain he understands I just wish he wouldn't give us so d- - - many trials in our lives. I'm soooo sorry this is all happening to you and your family. I feel your frustration and your anger. I don't even know you and I'm mad about it. I cry for Jonah and for what you have to deal with.

Hearts and Hugs
Marie

Katie said...

I am so sorry that you're feeling this way. My only suggestion on the eating is that if he acts like it hurts, it probably does. We use Magic Mouthwash (your doctor should know all about it...a lot of kids use it). Older kids swish it around like mouthwash and spit it out, but for Ella we would dip a cotton tipped applicator in the mouthwash and put it in her mouth and she would kind of suck on it to coat her mouth. It numbs their mouth so they can eat. It saved us on many occasions. Just a thought.

We are praying for you. I know it's so hard and I know you've heard it a lot, but it really does get easier. You're doing great!

Katie

Anonymous said...

Patrice, you are in my prayers as I stop & lift you & Jonah & Matt up to Him. Oh' God, please help this young mother & reach out & touch them with Your Almight Hands. Give her the comfort & blessings that she so desperately needs. Hold Jonah in your gently soothing hands & heal those new blisters. Give Patrice the patience & understanding of what is happening. If there is someone there with you, let them take Jonah for 5 minutes & you step outside to take a clear deep breath.
Know there are 1000+ praying for you & Jonah & Matt..I had been checking all morning for an update, because I felt this was a rough day for you, don't know why I just did.

Can you call your mom, Matt's mom anyone to come over & stay with you for a little while?

Know that we love you & are praying non stop...Jonah just may be exhausted from the weekend...babies tend to get that way & the only way they can tell you they are upset is to cry & cut back on the eating.

Keep the faith & know we love you

Wanda Wilkinson Durham NC

Amanda said...

:(

-hug-

Amanda
(Oregon)

Kama @ Today's Housewife said...

Praying for you guys all the time and I don't even know you!

Sailor and Co said...

Thank you for your transparency- the best thing you can do when you are angry with GOd is admit it to him...Tell Him how you feel -He already knows....tell Him you don't want to feel that way. I truly believe God has grace and extra mercy in these times...HE does want you to come to him and He does want to comfort you. First, He wants you to confess your feelings to him..Try not to get too focused on FEELINGS and remember the truth and that is that you love God and that you trust God...if you question that...it is a feeling.
I will pray for you.

Millie said...

I'm praying for you and Jonah. I am a Christian also but I've been mad at God too with all that Colin has been through. I have SO many questions when I get to Heaven. Please know you are in my prayers. Millie and Colin-HLHS

Stephanie said...

My heart breaks for all of you. I found your blog thru a friend of a friend and have been following you for a few weeks.

Stay strong and faithful and you will overcome this hurdle. God only gives us what we can handle.

Stephanie
Knoxville, TN

Anonymous said...

I've never commented before but felt compelled. I have no doubt what you are feeling is COMPLETELY normal. I came home with a healthy baby and was overwhelmed by that - I cannot begin to imagine how overwhelmed you are. I am praying for you and Jonah -that you will find a peace through all of this and a way to deal with it that you can call 'normal'. Having a baby is a challenge. Having a baby with EB must seem insurmountable at times but He will carry you through this. In fact, at your most desperate times it is He that leads you. Hang in there.

Holly said...

You got it! Many prayers coming your way from Georgia.

Anonymous said...

We are praying for you and specifically Jonah that he will get the nurishment he needs. The clinic can teach you how to put in an NG tube so that you can use it when he is not feeding well. I realize that an NG tube is not the best option for his throat and the other option is a permanent G tube (you don't have to use it unless he needs to). It can be difficult to keep fluids up in a baby with EB. Our son receives extra fluid volumn through his G tube in addition to his daily caloric needs. One thing you might check on is the amount of time that is considered acceptable for him to feed. We were told that the effort spent feeding after 30 minutes, took more nurtitional value away than what was being gained. We did 30 minutes of bottle feeding, finished with the NG tube and eventurally went to a G tube. With that I encourage you to find time to rest and don't hesistate to call the doctor early - better to have a early visit than an inpatient stay.

Barbara and AJ (RDEB 15 months)

Jenifer Parris said...

Sweet Patrice...you are in my prayers. We all have times as a mommy that we feel just like you do, and ours are over the simple things. I know yours are amplified because of the circumstances. Please know that others are lifting you up in prayer, as well as Jonah. I know you love your family and God but I also know we all get discouraged at times. I can not imagine how you must feel. Sending hugs and prayers from Alabama. Kiss that sweet baby for me! He is a precious gift. :)
Love,
Jenifer

Hope said...

I'm sorry he had such a bad day. I'm hoping today turns out much better. Poor little guy needs to eat to have the energy to fight infection. ((Hugs)) I know you're doing the best you can.

Praying!

Corby and Lauren said...

I don't know y'all, but I've been praying for you ever since I found your blog. I cried as I read your post because I can't imagine your pain and anger...and if there is anyone who can take your anger- it's the Lord. So cry out to Him!!! I'll be praying that the feedings and dressing changes go better. I also hope that you are able to get some rest. You are doing your absolute best, and I hope that the most important people in your life find ways to encourage you in this role!

Carrie said...

Patrice,

I have been lazy about clicking over here out of google reader lately to comment, but I am lifting you up right now (Jonah too.) I pray that God will comfort you and you'll see His hands in all of this, even when it feels like the enemy is all up in your business. Keep strong and try to take care of yourself too.

Carrie

Michelle said...

praying so hard for you & your precious son. i can't even imagine how hard all of this is, and i feel pretty helpless reading this & knowing all i can do is pray. but i take comfort in knowing that praying truly is the best thing anyone can do - even if you COULD do something to take Jonah's pain & EB away, praying is still even better than that, and i join you in those prayers.

praying for healing & comfort for Jonah, and faith, peace, comfort, strength, and wisdom for his mommy.

- michelle

Penny said...

I am so sorry that you feel so negative, that being said how could you not! Right now you are exhausted!!! Even when you try to rest your Mom brain is worrying. In our mind you should be able to take away any discomfort that Jonah has......
In the real world that isn't happening and it makes you sad, angry, and stressed.
I think it is good for you to be able to come to your blog and let those feelings out. Could you have someone come and stay with the baby for just a bit. Long enough to get a nap and shower... maybe leave the house....
Please don't beat yourself up... this is all hard so hard. Follow your heart and if it seems that he needs to go in just take him in. Your his Mommy.....

nancy said...

I am sad for you. It hurts to hear you like this but I completely understand! You have been so amazing through it all so far and it is normal for you to question God esp. when Jonah is having a hard time...again. In my perspective, he has had several good days since being at home and now it seems the not so good days are prevailing. Go ahead and be angry, cry and get it out!!!!!! That's what it takes sometimes to get focused again! I will be praying for him to eat, his new blisters healed and sleep for all of you!
I wish more than anything I could take Jonah's hurt away, yours too:)

I love you:)
Nancy

Anonymous said...

Dear Patrice, Matt and Jonah,

I am hurting for you and I am praying for you. Sounds like you need some sleep. Sleep is a great healer. My one thought is that going back to the hospital is not the worst thing in the world. Be glad that the hospital is there and is an option when necessary. I love you all. Barbara

Rose said...

Praying for you!

Anonymous said...

I'm sorry things are so hard.

If you think he's hurting when he's eating, it could still be reflux, and you might talk to the doctors about switching him onto a stronger medication (Prevacid worked best for us), and/or thickening his milk with a little rice to help it stay down.

Poor little guy. I've dealt with more than my share of baby eating issues, and it's heartbreaking, especially on top of other serious health issues (been there, too).

I hope he starts feeling better so you can too.

Jenilee said...

I think about you and your baby often. I can't begin to understand what you are going through but I do know that I can pray for you to a God who does understand. I just read Mckmama's praise you in this storm blog and I also blogged this morning on my awakeyoungmoms.blogspot.com site about I Peter 4:12 - He is with us in these trials.

We are praying for you and your family. God Bless

the*4*of*us said...

praying....

Lorraine-bo said...

Praying you will all feel the comfort of the Holy Spririt once again. Praying the Lord's healing on your beautiful little Jonah so that he may eat well again.

Anonymous said...

Since coming across your blog a month ago I have been praying for Jonah off and on all day everyday. It's funny how you can feel so much love for a little fellow that you have never met. I am so sorry for your families' pain and will be fasting along with praying for the next several days.

Mindy said...

I have been following your story and praying for Jonah and your family. If I were you I wouldn't wait to take him to the doctor if he's not eating. Little babies can dehydrate fast and you certainly don't need that with all the other things you have going on. I'd at least call your doc today and let them know what's going on and see if they want to see you immediately. It's hard when you have a new baby to know if you should call or not but it's better to be safe than sorry. I hope he starts eating soon.

Jane said...

My heart goes out to you Patrice. You vent all you want to, I am sure you have many frustrations. God knows your feelings, and who would not be feeling the same thing you are at this point. The prayer warriors will continue to lift all of you in prayer. I pray for you, Jonah and Matt so many times during the day, I will also add your specific prayer request. Please try to get some rest when you can, being tired does not help the situation. Hopefully someone is there with you. My thoughts and prayers are with you all.

cookfam said...

Praying for you in Georgia!! I have brought two healthy children home from the hospital and felt so overwhelmed at times - i can't imagine how you do it! My children are now 5 and (almost)2. This time in your life will go by so fast - and it will be such a "fog" you'll hardly remember it! I am praying for you and baby Jonah! Like the others said...call someone to help: moms, grandmas, aunts, cousins, FRIENDS! Just to allow yourself some time - if you call, I'm sure they'll come! Thinking of you and praying for peace within, to help you and Jonah!

Carol said...

Hi Patrice...I want to leave you this verse, I hope that it encourages your spirit. Pray it over and over!

Psalm 119:69-Let my cry come before You, Oh Lord! Give me understanding according to Your Word!

No one can define your son's worth in this life. No one can tell you why sweet Jonah was born with EB. Only the Father can give you understanding and it will always be according to scripture because God never contradicts Himself. I think as you watch Jonah grow and you commit yourself to Jesus, the Holy Spirit will gift you with a glorious understanding of how much Jonah means in this life, to those around him, and to His Heavenly Father! He alone can answer your cry precisely how it needs to be answered! I'm praying for you.

Teresa @ Grammy Girlfriend said...

Praying and hurting for you and your sweet baby.

Amber Schmidt said...

It truly is ok to feel however you feel. I love that you are so honest and open. It is part of the process (the anger) and it goes away faster if you get it out. Thank you for sharing your amazing journey with all of us.

We would LOVE to see your family photo whenever you are up to sharing!

Hugs and prayers...

Vera said...

Praying for all of you!!

Amber Schmidt said...

PS... chocolate goes well with a big ole pity party... trust me I would know! LOL

EdwinsonFamily said...

Praying that you feel Jesus carrying you, and that He provides relief in this storm.
I agree with other commenters. It really wouldn't be uncalled for to call the ENT and tell them you MUST get in sooner to try to avoid a hospital admission. It's worth a shot.
And, I don't have EB experience, but our son did have reflux. Prevacid worked well for us.
Just wondering (not questioning) if wrapping his extremities is truly still necessary.
Most importantly, keeping you in prayer... and that you will see God's purpose or at least be able to trust that He has your BEST in mind. And, that you can take your true feelings to Him without guilt. He can take it!

Cathy said...

My heart breaks for your pain and Jonah. Please Lord, give them so relief! Please let little Jonah get the nourishment that he so needs. We do ultimatley our nourishment comes from you. Help his sweet mommy and daddy know what to do.

Gabriella said...

Praying for your family. The following was shared with me several years ago during a struggle.
"The time may be delayed, the manner may be unexpected, but the answer is sure to come. Not a tear of sacred sorrow, not a breath of holy desire, poured out to God will ever be lost, but in God's own time and way will be wafted back again in clouds of mercy, an fall in showers of blessings in you, and on those for whom you pray." St. Therese

Uplifting your family in prayer.

Beth said...

God understands your anger, and He loves you just the same! Praying for you and that you feel the Lords comfort and peace!

Praying that Jonah eats well and has better dressing changes!

Have the doctors ruled out that Jonah is lactose intolerant or that he has a protein allergy? That might be causing the eating issues?

Keep your head up!! The Lord IS with you!!

Jessica mommy to Alex/ RTS said...

Ive been angry with God since my Alex was born, and I have had lots of people tell me that God can handle it. So Im telling you this. Our stories are so different, but I do understand wanting so much to change things, just wanting to be normal, not exceptional, just normal.
On top of everything, not getting sleep makes it all 100x harder.
You are on my heart today.

Christina said...

I am praying very hard for you right now!!! It is okay to be angry...I am angry for you. I am praying for Jonah and Matt, also.

mooneyequalsmc2 said...

always ALWAYS praying for Jonah...but I will get much more specific with God about my prayers to Him about YOU. Hang tough, mama. You are amazing.

Anonymous said...

Oh dear one! God is near. He would never leave or forsake you! I am praying and I will continue to pray. Your baby is so precious, to you, your family, to God and he is becoming precious to me more and more by the minute. Take a deep breath. The first weeks/days home are the world's worst. I have been through it three times. I used to hate those first weeks. Remember to pray and to take a few minutes for you. Eat, drink, sleep, shower. I used to repeat that like a mantra. Also, it is WAY OKAY to be angry with God. Angie, at Bring the Rain, says that God is not afraid of our anger. He expects it. Go ahead, give it to God. He can and will handle it. He wants to be your rock. I am praying and I will continue to pray for your special one. Take care of yourself too though so that you can be there for him. Love you so much in Christ! Jennifer in Southeast, NC

mandi said...

I don't think you're having a pity party at all!! Your strength has been amazing since the beginning & your family has been on the heaviest of rollercoasters in just a year. Just know that so many are standing in the gaps for you right now! Continuing to pray!

Katherine said...

Patrice, I'm hurting with and for you guys. I can imagine your frustration, your exhaustion level and your complete and utter desire that Jonah be healed. I will pray for all of those things. Love you!

Kris said...

Our family continues to pray for you daily. As a mom, I am grieving with you about how unfair this all seems for your family. I'll be specifically in prayer that you will feel God's arms wrapped around you and His peace sustaining you.

Anonymous said...

I had the same feelings when my son died. I couldn't even pray. When you feel this way, let the Holy Spirit pray for you. -- Blessings

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. Romans 8:26

Debra said...

Praying for you from the West Coast!

Merri Lawson said...

I'm so sorry for what you're going through. And your feelings are completely understandable. I'm praying for Jonah, you & Matt, and that God will reveal Himself to you in new and wonderful ways and soon! I hope tonight's dressing change goes much better and that Jonah starts eating well again.

Shannon said...

I'm a new reader, so I don't know much of the details...

Is there any way to get some extra help? I know even 10-15 minutes to walk, take a shower etc...made a big difference for me.

Christine said...

I'm feeling so angry right there with you...I'm so sorry that the ups and downs of each day are so steep and terrifying.

I'm sitting here remembering how hopeless I felt last year at this time when we brought our newborn home, and we dealt with acid reflux for the first couple of months. I agree with the poster that said to go ahead and call the doctor now...don't wait.

Praying for you and your family.

Sara said...

Because he isn't eating much, not sleeping well and has new blisters suddenly, it sounds like he may have an infection. EB babies tend to get irritable and suddenly break out in new blisters when they are starting an infection.

Based on his weight you posted the other day he should be eating btw 12-13 oz in a 24-old period just to stay hydrated. If he's not even close to that by now for today I would take him to the doctor today, don't wait. Babies can get too dehydrated very quickly.

You CAN give him a bath, he may hate it, he may scream the entire time but that is ok. You can leave all his bandages on while in the bath and then change one limb at a time once he gets out.

Consider putting a small amount of bleach into the water 1/4-1/2 TEASPOON per 1 gallon of water is all you need for an infant under the age of 1. It will help kill any bacteria on his skin and possible prevent infections. It will help dry the wounds up and help them heal faster. Maybe a good soak in the tub will make him feel better.

rameelin said...

Patrice, I know you are tired. I know you are frustrated, hurt, sad, and angry. I also know that you are strong, able and protected. God is an almighty God. You are so virtuous and we're all lifting you up.
I'm praying for Jonah to be emcompassed by the hands of our Father! I pray that you would feel an immense peace and a greater understanding of this current situation. I know you are in pain for your child but he is a fighter. Take it one day at a time and don't let your mind become overwhelmed. You're doing great! We're praying daily for you, Matt and Jonah as are so many others. Feel those prayers and rest in them. He is leading you Patrice! Step by step.

Anonymous said...

I'm sorry you are feeling so down. You have every right to feel angry. I've been following your blog and at times I feel angry for you. It seems really unfair for one family to deal with so much. You are such a good mom and I'm inspired by you. Keep up the great work and know that there are many people praying for you, Matt and sweet Jonah.

Dawn in Green Bay

Ki Corley said...

I'm still checking in every day and still praying. God is still waking me up in the middle of the night with Jonah on my heart, so I know He hasn't forgotten about you!
Ki Corley

Anonymous said...

Hang in there Patrice, with every ounce of strength you have left. The day you get to hear Jonah's first laugh, and YOU WILL hear it, will make it all seem worth it. Take it one day, or better yet one hour at a time. Be proud of what you, Matt & Jonah have accomplished so far and believe that better days are in your future. Love you!

Nathan, Lindsey & Mason.

the-mommy-person said...

I'm so sorry.

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9 His power will be and (even though it doesn't feel like it) is being seen through your trials and heartaches. How many hundreds or even thousands of people can't understand but want to understand how you can have a relationship with the Father even through the most heartbreaking experiences. God loves you, God loves Jonah, so much more than we can ever fathom. I know that he weeps with you over the pain that you are going through. Our trials are not brought on by the Master but by a world full of sin. Remember that this life is not what he intended for us. But we can serve him through anything and with joy in the journey till we can be in perfection with Him. Praying for you.

CastingCares said...

I wonder if he could have thrush. It is a common mouth infection in infants. It is easily treated, but it is uncomfortable for any infant. Look to see if he has white patches in his mouth. That is the most common indicator.

I am praying for God to wrap you in his grace today and give you the wisdom to do the very best for Jonah. He gave us all of our emotions, and He can handle your anger. He just loves us to be honest with Him. Think of the life of David (a man after God's own heart). The Psalms relate all his emotions.

It also doesn't help when you are sleep deprived. Try to get some rest and know that many all over the world are praying for you and your precious baby boy.

Michelle in Va said...

Praying for you each and every day. Having a new baby is such an adjustment, much less a baby with special needs. You are truly an inspiration to me. You and your family are continually in my prayers. I agree with the other commenters, it is amazing how much Jonah and your family have come to mean to me and I don't even know you. You have such a right to be angry and wish for normalcy. You and Matt have been through so much, but have done it with such grace and poise. I pray that God wraps his loving arms around you and gives you renewed strength. I pray that sweet Jonah will begin to eat and his blisters be healed. I was wondering like another commenter, is it possible to leave Jonah unbandadged for a little while to see if this provides him some relief from being hot and not so agitated with a bandage change. I know my son was always fussy when he was too hot. Just a thought. Again, lifting you up in prayer each and everyday. Please take care of yourself, so you can take care of that sweet angel. Much love to you all!!!! Remember, God is so good!!

Misty said...

What you are dealing with is beyond my imagination, however, please know that it is normal to feel angry at God when your baby hurts and you can't take the pain away. I HAVE felt that many times - and He's God...He can handle it! God's Love and our prayers to you all!

Julie said...

praying.

Jalita* said...

No words...I have typed them numerous times and deleted tehm..b/c nothing I try to type seems appropriate or good enough. Just please know we are all still praying...

Anonymous said...

May Jesus wrap his arms around you and hold you close to his heart. Is there anyone that lives near you that can pull a couple of overnighters with you guys? I know you don't want a ton of help due to risk of infection, but there has to be someone out there. Sleep will help a ton with clarity and patience. You have a right to be angry and to have hate. No one can tell you how to feel. God's love will pull you through. Continuing to pray in MN. Dawn M.

Jill said...

Patrice,

I love you. I am with you and sharing all your feelings.

Megan in Clemmons said...

Hi Patrice. I have a few ideas that may or may not work. When both of my children were Jonah's age, evening time was the worst. Between 5 and 10, they just seemed to cry non stop. Nothing would help, standing, sitting rocking...nothing. And as a new parent, it seems so overwhelming. Maybe you could try to switch his bandage changing time to the morning, or early afternoon, when he is not exhausted from the day. Also, if you felt comfortable, try letting someone else do his bandages besides you and Matt for a while. He knows that you are going to respond to his every need, and while he may be in some pain, he could just be ticked off that you are not holding him. Again, I have no experience with EB, but I am a mom. Also, with his bandages, could you maybe try changing them in intervals. His arms in the morning, his belly at lunch, and his legs in the afternoon. That way he is not overwhelmed by the time it takes to complete his whole body. It could possibly help you not to get so frustrated. Also, try reaching out to a few of your local blog readers. Maybe you could find a few new friends that could take some of the weight off your shoulders. I always found that a few "outsiders" always offered refreshing ideas when my son was sick. We are all here for you, praying. I feel like you are family, and I have never met you. It's okay to be angry, God handed you a lot. You are doing a great job.
Love, Megan

Kirsten: said...

Praying for the 3 of you!!! XOXO

Erin Hingley said...

Patrice,
I think that if you weren't mad at our God right now, then you wouldn't be "normal"! It's your instinct to hurt when your baby hurts and to want to make everything better- that's what makes you such a good mommy. I can't imagine how frustrating things are right now, but I have hope that they will get better. You are strong and will make it through even stronger. Also, remember that sleep deprivation plays a HUGE roll in how you feel. My son is one and even now if we have a rough night I am useless the next day. Everything will fall into place one piece at a time and while it does, I will be praying for you all along the way.

Love,
Erin in VA
youmeandwipee.blogspot.com

PenelopeDawn said...

It is perfectly alright to be angry at God. He is so big and so good that He can take it and He loves you anyway.
You and your family are in my prayers.

Anonymous said...

I'm don't know the logistics of Jonah's baths and whether his doctors have said to avoid them or not. But, I know of a few babies who would be so fussy until they got popped in the bath water--and then instantly flipped to happy baby mode. What about filling up the kitchen sink with warm water, holding Jonah, and just dipping his feet in? If he's OK with that, lower him a bit more each time, as much as he can handle. Perhaps being suspended by you would be easier than him bumping against a tub. Just an idea--I know you will take wonderful care of Jonah no matter what! Thinking of and praying for you in the Midwest.

Shannon in MN said...

I wish there was something i could do for you Patrice. I am so sorry you are having a hard time. Poor baby Jonah. He is so strong that he will pull through and be well again. Know that we are lifting you and your family up in prayer today and everyday.. Love and hugs to you.
Shannon in Mn

Anonymous said...

I agree with the morning bandage changes!!! My nephew has RDEB and they moved his bandage changes to the morning and it was a relief to the parents that they could get it 'out of the way' and enjoy their evening with him. They also started to spread out the bandage changes to every other day, which helped things as well. Wishing you all the best.

Anonymous said...

I am at a loss for words, my heart just breaks when I read your post. You and Jonah have hit a really low spot, and I can understand your frustrations and feeling angry. All I can do is pray for Jonah, you and Matt...for better days and nights; for Jonah's healing, ability to eat, wisdom for the doctors. You and Matt are GREAT parents and Jonah is simply BEAUTIFUL!

Gail
Annapolis, MD

Diana Lopez said...

Always praying for you guys....

Footprints in the sand

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life, when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one set of footprints in the sand.
Why, when I needed you most,
you have not been there for me
The Lord replied,
"The times when you have
seen only one set of footprints in the sand,is when I carried you."

Chelsea said...

Psalm 18:2
The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the hornof my salvation, my stronghold.

Heidi said...

Oh, I am so sorry that your little boy is in so much discomfort. It would break my heart to. I pray for your strength and Jonah to have good days. Life is not always fair and your aloud to be upset and angry. I hope you accept as much help from family and friends that you get

Lucia said...

Praying for you, especially today. It all sucks. There is no getting around it. But I know that you will persevere and there will be good days again. You are an amazing mommy... it wouldn't hurt so much if you weren't! Don't be afraid to cry when you need to.
Hugs,
Lucia

K said...

I could tell you that God is in control and that He will work this out for good in the end, but I know you already know that. What I am going to tell you is that it is ok to be mad right now. You're right, this sucks (and I NEVER use that word) but it truly is the only word to describe what you are going through. Tell God how you're feeling and how it is unfair - because He knows that is how you feel anyway. Get it out and release it to Him. Better to take it out on God than those around you.

The England Family said...

Your pain is real...your frustration is justified...and God IS near! Although you may feel alone, I pray God's love and comfort surrounds you and sweet Jonah! I just lifted your family up in prayer...and I will continue to pray and spread your story to those around me to lift you up in prayer too!

heatherkmd said...

Praying for you guys....I check in everyday and I am sorry to hear he is not eating, getting new blisters, and not resting at all. I will pray for healing of his blisters, restoration of his appetite, and rest for the two of you. I think being sheer exhausted exacerbates all the other feelings you are having; and understandably so.... I will be praying for you guys <3
~Heather in NC

avbernat said...

Patrice and Matt,

I'm so sorry you're going through such a rough patch.

I'll be praying for Baby Jonah and for you Patrice. Hang in there! You may not realize it right now, but you have to believe that there is a reason why this is all happening. Jonah has touched so many hearts.

Analiza

Just'N Angel said...

Praying and loving you all. I rejoice in your rejoicing and hurt when you hurt. God is there, and He understands. It's okay.

Astrid said...

My heart just breaks for you. There is nothing worse than not being able to make things all better for your baby. Be mad at God all you want-but make sure you tell HIM! He can take it and it will comfort you that He still loves you like crazy no matter how mad you are. This will pass. Being so sleep deprived no one can think straight, anyway. I used to have the craziest thoughts when mine were newborns(and they were easy).
I love you and am praying for you several times a day.
Astrid
Chattanooga, TN

Anonymous said...

Please be encouraged that many, many people are praying for your family and situation. God is good, all the time, even when he feels far...Cast all your cares on HIM, He cares (and loves, and knows) for YOU!
Our family in Minnesota is praying for you! T.K.E.

Barb in Ps said...

I'm so very sorry you are hurting. Praying for the peace that passes understanding, even though how He does that passes my understanding. Thank you for being like David, truthful and honest.

newhousenewjob said...

I've been following your story and am full of admiration at the way you've been handling everything - I've been praying for you and especially for Jonah daily since I found your blog. It's OK to feel sad, frustrated and angry, but please be assured that you're doing a fantastic job, and are held in the prayers and hearts of so many strangers around the world.

shoutingforha said...

Praying for you here in Nashville...

Anonymous said...

It's ok to be mad at God. He knows what you are going through. He wants you to talk to Him no matter how you feel. Let Him know you are angry. Tell Him exactly how you feel! You're coming to Him and that's all He wants.

Praying for your family.

KR said...

Praying, praying and praying. I cannot imagine the pain for all of you. I will storm the gates on your behalf.

Stacey said...

I was just sitting here trying to think of some encouragement for you. And honestly I am just too afraid to say the wrong thing. But I want you to know that our God knows your heart, He knows Jonah's needs and He knows what you are capable of. None of this is a surprise to our wonderful and loving God. Stay strong in the Lord, let HIM take care of your needs and know that many people are praying for you.
God Bless YOU,
<><

Brandi said...

Darlin it is okay to be angry! Get angry. Cry out to God. Let Him know your pain, and then feel His peace flow back into you. We are praying for you and Jonah. I do have something I want to send to you guys, but it will be next month before I get it made and in the mail. You have touched me with your faith through this ordeal, and you deserve to know that there are people praying for you and your precious baby boy!

ann said...

Faith is not a feeling. You are choosing to have faith, in the same way you choose to love, even when you aren't feeling it. Don't let the 2 get confused. The feelings are sad, angry, frustrated, frightened. Faith is your response. God is there, the same as He was yesterday and will be tomorrow. I'm praying that you will affirm yourself as you continue to choose faith.

Anonymous said...

Praying for you Jonah and Matt constantly. I don't think I have ever been so drawn to people I don't know. I cry when you and Jonah have a bad day, I check for updates daily .I am praying that Jonah starts to eat well and I constantly pray for Jonah's little body.Love in Christ!!
Donna

Anonymous said...

You have our continued prayers. When God leads you to it, He will lead you through it.

Amy Evans said...

You and your family have been on my heart. I know, for myself, it has been in the darkest times that God's light has shined the brightest. I hope and believe it will be that way for you. Keep pressing on! The Lord is going to bring you through this!

Much love in Christ,
Amy

Anonymous said...

I check your blog everyday and pray for you, too. It will get better. Bless you all. God understands. With God all things are possible.

Anonymous said...

oh, I cannot even imagine the level of patience that everything you are having to deal with right now requires. God bless you all, and I pray every day that your sweet little Jonah gets better and that his blisters heal. Today I will pray that his eating gets easier for him...and I will pray for some much needed rest for his parents.

momma said...

praying for you right now!

Krista said...

I continue to pray for you. A lot of what you're saying happens to many new moms adjusting to the huge responsibilty of a little one. Granted, your adjustment has more bandages and Aquaphor! :)

Moms who lost and grieve (such as yourself) and moms who wait and wait and wait for the little blessing from God, we often feel bad and ungrateful for the emotions that come once we are home with our little ones.

You're a wonderful mom doing the best she can. I suppose it's not easy having so much family visiting at this time either. I've found it best to have family wait until things have settled down.

Hang in there. This too shall pass. God's graces are new every morning! (and very needed when you've been up all night!)

"See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven." Matthew 18:10 How amazing thought!

Stay strong sister! We're praying for you!!!!

CinderellaMommy said...

Jonah's eating will be on our prayer list as will his dressing changes, bathing, and HIS PARENTS! May you feel God's presence in your living room, kitchen . . . wherever you are, whenever you need Him - let Him keep you company during your long nights and we'll keep you in our prayers that comfort WILL come!

SW WI MOMMY

natalie said...

Praying for you right now.

Isaiah 40:31 came to mind as I reaad your post:
"Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary."

You are an incredible mother. It's okay to be tired and need some support. Infancy is never easy, and particularly not in your situation. I appreciate your honesty and your transparency. Please know that there are thousands of people who don't know you, but love you and your family and will pray for you--whatever your need may be, in times when praying for yourself is too hard. When we lost our babies, I had friends who could pray the words that I couln't form.

"Lord, Gracious Father, I lift the Williams family up to you right now. Please bring comfort to Jonah so that his pain in managable. Please create a hunger in him that can be satisfied. He is a miracle, Father...your precious miracle. Hold his mother and father in your arms and give them the wisdom and patience to parent Jonah in a way that glorifies you. In Christ I pray, Amen."

In Christ,
Natalie

Krista said...

I continue to pray for you. A lot of what you're saying happens to many new moms adjusting to the huge responsibilty of a little one. Granted, your adjustment has more bandages and Aquaphor! :)

Moms who lost and grieve (such as yourself) and moms who wait and wait and wait for the little blessing from God, we often feel bad and ungrateful for the emotions that come once we are home with our little ones.

You're a wonderful mom doing the best she can. I suppose it's not easy having so much family visiting at this time either. I've found it best to have family wait until things have settled down.

Hang in there. This too shall pass. God's graces are new every morning! (and very needed when you've been up all night!)

"See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven." Matthew 18:10 What an amazing thought!

Stay strong sister! We're praying for you!!!!

Carol said...

Praying for all of you. I know you are tired and frustrated....anyone would be. Just keep on keeping on and cry if you want and pray and talk to God. He will hold you when no one else is there to hold you. Prayers. Carol

Anonymous said...

I am so sorry. I can't begin to put myself in your shoes, but I do know that you have every right to feel what you are feeling. You are so strong and an inspiration to us all. Please know that and that I am praying for you all!

Sarah said...

Patrice,

I am praying for you. I hope you can get some rest and that your spirit can be renewed. I remember a time when I could do nothing else but sing "Be with me Lord" as my cry to God. I hope you can find comfort in its words.

Be with me Lord; I cannot live without Thee
I cannot try to take one step alone
I cannot bear the loads of life unaided
I need Thy strength to lean myself upon

Be with me Lord when loneliness o'ertakes me
When I must grieve amid the fires of pain
And when shall come the hour of my departure
All world's unknown;oh, Lord be with me then

Be with me, Lord, and then if danger threatens
When storms of trial churns above my head
When lashing seas leap everywhere about me
They cannot harm or make my heart afraid

Melissa said...

Oh, I am so sorry. Please know that you have every right to feel angry and it's okay to admit that. I can only imagine how overwhelming this must be. Mothers who bring home healthy babies find it overwhelming so I can certainly empathize with all that you must be feeling.
I continue to pray daily for yo uand your family.

Anonymous said...

Patrice, I agree with another poster, if he is not eating well and only eating an ounce or two, you really need to call the dr. asap. Do not wait until his appointment Thursday. Little ones can dehydrate quickly and I'm sure that on top of EB would be more difficult to deal with.

Aside from all of that, I think what you are feeling in totally normally and honestly, I'm not sure how you're coping as well as you are. I have brought home 2 healthy babies and I had breakdowns with each of them. Then I brought home a heart baby (CHD-TOF) and found myself at a total other level of stress and desperation. I sat a good many hours just holding him and crying. As important as it is to be taking good care of Jonah right now, it's also vital to be taking good care of yourself. I hope you have help around and people irl who you can reach out to. Go easy on yourself and have a cry if you need to.

-hugs

Anonymous said...

Praying for you!!!
I hope Jonah starts eating well and his pain is under control.
I pray that the Lord comforts you and grants you peace and strength
Em
from Australia

Mindy said...

Praying!!

Ps 91:1-4 (NIV)
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, "He is my refuge and my fortress, my God in whom I trust."
Surely He will save you from the fowler's snare and from the deadly pestilence.
He will cover you with His feathers, and under His wings you will find refuge;
His faithfulness will be your shield and rampart.

Anonymous said...

Praying and lifting you and Jonah up. God just watch over this loving family and heal Jonah's little body.

Baby Bird said...

PRAYING FOR YOU!

amber said...

Praying!

-big hugs-

Amber

Anonymous said...

Father I stretch my hand to thee. No other help I know. Absolutely no other help. When you feel like this Patrice just know and understand that it's okay. That's when the Lord wants to carry you. Just stretch out your hand, just help Jonah stretch out his and the relief will come. I don't know your pain, but what a God we serve. Oh how He is going to bless your family. I'm stretching out for you right now. Oh Lord take care of this family. They are yours and they know that they are yours. Satan knows it too and is trying to tell these children of yours that you don't care. We know you love them and will bless them in a mighty way. Oh Father, give them the tangible support they need. You tell in the book of James that it does no good to just pray for a person whose cold or hungry. Lord I'm in Kentucky but if there is a tangible thing I can do for this family show me. If there is a physical need that I or any other of your children can meet, please show us and guide us. Bless this family God.

Jill said...

I'm so sorry it's been a rough couple of days. You guys have been so strong through so many trials and you are allowed to not feel strong all the time! All of your anger and frustration is absolutely normal and probably what others in your situation would feel the majority of the time instead of every once in awhile. We will continue to pray for you all. Thanks for giving us specific requests so we can go to God with your exact needs.

Jacque said...

Patrice,
This post has broken my heart. I don't have any inspiring words but I just made a donation to the EB Research Fund in honor of Jonah. Praying for that adorable lil bandaged babe, you, your family and a cure.
With love from Tulsa,
Jacque

Melissa said...

Let it out, Patrice...the worst thing you can do is keep it bottled up inside. Anger is kind of like an infection...if you let it stay inside it festers and just grows worse and worse, and more toxic...but if you lance it and let it out, it disolves and disappears a lot sooner. As for God...one thing I've learned over the years is that He's very much like any parent...He loves us no matter what, even when we're mad at Him. I know when I was a teenager, I used to get so angry with my dad and I would say mean and hateful things sometimes...but he loved me anyway. And now that my sons are teenagers, sometimes they get so mad at me that they turn red in the face, stomp, storm, yell, and I'm pretty sure they cuss me behind my back once in a while...but I love them anyway. That's how I see God....He's our father, and He loves us in good times and bad, when we're happy with Him, and when we're so mad we can't see straight. So let it out, trust that God loves you...He's not going anywhere, and He can understand the root of your emotions, the fear, the frustration, the aggrevation. He knows it's not really Him that you're mad at, but the situation, the lack of being able to fix things. Tell Him how you feel...don't just say your prayers, but have a real conversation (it's always helped me to think of God as sitting right there listening like a friend would). Then, once you've said it all, ask Him to help you work through those emotions. Ask Him to help you find the strength you need to handle all of this. He will help you if you want Him to.

You know we all love you, hon...hang in there, and if you need to pour your heart out, pour it out. A lot of us have been there, felt that, and we understand. We're here if you need us. I know that you probably have tons of offers of a shoulder to lean on, but let me throw mine in, too. If you want to talk, just have Matt get my number off the list at work (I won't be there tomorrow because of Bry's surgery). You can call anytime you want if you want to talk...

Love & hugs...

Martin Family said...

He understands your anger, and He loves you very much. Praying for peace for Jonah, that he will be without pain so that he can eat. That he will heal and not have pain from his blisters. So sorry that you are being overwhelmed, but I can understand why you are. If you need more help, or a break, let us know (shepherds class) and maybe we can work it out where a few volunteers can come and do some housework, help with dressing changes, whatever you need. It's okay to be mad. And it is ok to have a pity party too. I can only imagine how hard it is to not spend every moment asking WHY? Can YOU imagine someone going through these circumstances without the hope you have in Christ? Without the peace and mercy God gives to you each day? That is a person I would pity. But you, YOU amaze me. You have more strength than you realize. And you are a real inspiration to me. I hope and pray, that your prayers are answered in every way. I hope and pray that you will reach out if you need help. And I hope and pray that you will be able to get some rest so that you will feel better able to deal with the obstacles and to rejoice in the triumphs. Jonah is a very blessed boy to have been given you for his mother.

Anonymous said...

I used to wonder if God would be there when I went thru hard times. I now know he is there as he has promised in his Word. He can give us peace in the storm if we keep our eyes on him. God has worked so many miracles in my life and best of all he is there.
Anne

Anonymous said...

Patrice...you are so honest, and I think it is good for you to "vent". Bless your heart...I cannot imagine all you've gone through. You certainly deserve a time to let your feelings out!!! No one (I feel I can speak as someone who reads your blog...as hundreds do!) is judging you, but only feeling compassion for you. It is so hard to understand why things like this happen, and you and your husband have been tested (twice) far beyond what many of us ever will go through.
Please know that your honesty will cause me to pray more for you. May you find joy in the morning...and may you have thousands of morning moments!!!

Tracey said...

I work in a dentist office and I don't know how much help it would be to an infant but for some toddlers and adults we use a RX called pink magic. It's compounds (and usually has to be mixed at a componding pharmacy) soothe sores in the mouth and have a slight numbing effect, this may help. Also his blister on his lip may possible be from the struggle to eat, as my babies would also get what my doctor called nursing blisters in their top lips, with Jonah's condition maybe this is just a larger blister.
Good for you for venting your feelings and anger....you are normal and deserve to feel frustrated. I have been following your blog for sometime now and your faith in God will see you through but don't feel like you have to be strong all the time, that's why we have such a wonderful God, to lean on and turn to in our struggles for comforts and understanding.
Our family will continue to pray for Jonah and Matt and especially for you, for the strength, patience, and understanding to get through this and move forward in life. And just keep in mind how happy Gabe is looking down on you all knowing what a strong, loving mommy he has, one day you will not need to take your family picture in a cemetary, because our God promises life forever more and you all will be reunited one day. God just isn't done with you and Jonah here yet. You truly are an inspiration for me and my family.

Sandy Moore said...

I'm so sorry Patrice for the way you are feeling. I've been mad at God myself before. I've felt hurt by God as well. And, just like you, the reason was regarding my own child(ren). And, I have had plenty of pity parties too. But when the blinders fall off of my MY HEART (and my eyes) and I am once again able to return to our Almighty, Glorius, Loving Lord, HE IS ALWAYS THERE TO FORGIVE ME AND WELCOME ME WITH OPEN ARMS.
With Continued Prayers and Much Love,
Sandy Moore

Karla said...

I pray for you, Matt & sweet Jonah every day. I am sorry to hear that you've had a bad couple of days. I pray: God gives you strength and courage to face any challenge that comes your way, Jonah's pain will subside, and Jonah's appetite will increase. Thanks for keeping us all updated. I am SO honored to pray for your precious family.

Sending love and hugs your way!
Karla
(Tennessee)

Courtney said...

I'm so sorry. I'm sure you do feel angry and it is definately not fair. :(
I can only imagine what you are going through.
Prayers,
Courtney

Crystal in IL said...

I would say you're not normal if you didn't get overwhelmed and angry. I have a medically fragile heart baby and for months we lived in the shadow of life and death with her. As a matter of fact we still do. Once we were finally able to take her home for the first time there were so many concerns and hurdles there seemed that no one understood. Not even God. I still struggle with the "lesson" I'm supposed to getting from my baby's suffering. This is a hard road and certainly one no parent would ever willingly choose. My suggestion would to be seek nursing/relief care for Jonah. It doesn't make you a failure to get help. It is next to impossible to be a mommy and a nurse at the same time. You are in a unique situation that most of us will never grasp. Please reach out for help. Also if Jonah does get readmitted to the hospital is not your fault. You are his mother. Not an EB expert. His medical care is best known to his doctors but you hold his heart. Love him, cherish him and let people help you.

Janel Waters said...

Patrice - all of this is totally normal. I think I get mad at God about once a week or more. Its OK. He understands! Do NOT feel guilty for your anger. Your feelings ARE NOT WRONG!

I agree with Sara - he might have an infection - when I get an infection my skin breaks out, hurts and my mouth breaks out and I have problems swollowing - I just get GROUCHY!

I also agree that giving him a bleach bath might help kill the infection before it gets really bad.

Please, again, feel free to call me - there is nothing that you could say to me that I have not felt in the last 34 years.

I am still praying for Jonah and for you and Matt!

God bless!
Janel

Anonymous said...

Someone else may have suggested it, but will your insurance company provide for home-health services?

Anonymous said...

Hi. Praying for Jonah. I was thinking. I wonder if tummy time is causing some of the blisters on his face and belly. My kids had a hard time moving their heads when they layed on their tummies, and I would think that it would cause friction. Just a thought. Hope you both feel better soon.

Mimi said...

I am so sorry you are feeling this way. It has got to be so frustrating to see your baby in so much pain. God is there with you every step of the way. I know you are upset with Him. He knows that too. He knew that before you were even created. Before Jonah was created. There is a reason for everything. You may not know it now, but one day you will understand. Thinking of you always and praying for Jonah to start eating better.

Love,
Kami

Anonymous said...

I'm crying for you and praying for you right now. You are tired, and nothing seems right and everything seems blurry when you're tired. Jesus calls us to "Come to Me, all you who are weary and heavy laden and I will give you rest." I can only imagine how upset and angry you are. But I can also tell from your writing that you love the Lord no matter the circumstances. He will walk with you every step of the way every time you have to get up at night. He will sit beside you when you have to just break down and sob in the middle of the night. He will bring you comfort and rest. I'm lifting you up to Him right now.
Much love,
Daisy (alabama)

Nicole said...

Scott and I are always praying for you, Matt, and Jonah...non-stop.
If you need anything- help, someone to talk to (our babies are hours apart) I am here. We probably live very close to each other-let me know.

Anonymous said...

I've been following your blog since your sweet boy was born and I just wanted to let you know how much I relate to this post. My son was born at 26 weeks and spent 118 days in the NICU. He's been home for about 3.5 months now and has a long road ahead of him. We are also struggling with significant feeding issues, amongst other things. I feel your pain, mama. It is so difficult sometimes. I also find myself angry at times...at God, at doctors, at anyone who'll stand still long enough! I'm praying for you.

Maryellen said...

Keeping you uplifted in our prayers. My heart breaks for Jonah and your family. It makes me angry also. When I feel so confused and angry at God the verse that brings me some comfort is to remember that
His ways are not our ways. They are higher than ours. So much in this life is hard to understand. Jonah and your suffering is one. Praying you find renewed strength, comfort and peace.
In love, Gary and Maryellen Azarian
New Jersey

Bethany said...

Hugs to you. I think of you everyday and you continue to be in my prayers.

Anonymous said...

God knows our heart better than we do and he understands your feelings more than we can comprehend.
If you can't get some relief help I would suggest drawing a nice warm bath have a soft towel handy to lay Jonah on when you are done your soak and get in the tub with him. Lean back and relax, cry if you need to, Leave his bandages on until you get out. Lay him on the towel and throw a bathrobe on. If he reacts alright to this then he may like having a real bath on his own. I always put Erik in the tub with his bandages on and take them off as we go. It does mean you have to rewrap all in one sitting after the bath. Bleach does help fight infection in the wounds. It makes a big difference with Erik's. I am sure to use lotion all over after a bath with bleach because it can make him itchy. I also used Epsom salts mostly when he was younger, He came home from the hospital on morphine and methadone and we weaned him off that and just used Epsom salts in his tub it takes the sting out of the water. I always give a plain water rinse after bleach and salts. For Erik we used an inflatable tub with a blanket under him.
As others have said don't wait if he isn't eating. We used Magic Mouth wash when Erik was little as well as a cleft palate nurser which you could apply preassure to so he could eat without sucking hard. But I love Erik's G-tube. It is better to get one before health fails because of malnourishment. It is much easier to keep up than to try to catch up after health and growth are failing.
In Jesus Love. wish I lived close enough to give you a hand.
Kathy mom to Erik 5 RDEB-HS

Stephanie said...

oh sweet child of God, may He CARRY you with His love and grace.
May He continue to quiet you with love and sing over you (during your 1 hour of sleep.)

My heart hurts for you.

Anonymous said...

My heart aches just reading your post and thinking about all you deal with on a daily basis. As the mom of a special needs baby, I've marveled at your strength and spent many nights wondering how in the world you manage to do it all. You are incredible in every sense of the word.

When I'm not marveling at your ability to manage to raise Jonah and tend to his needs, I'm praying for all of you - I hope that tomorrow brings more peace, comfort, answers, rest, and whatever else is needed for all of you. Please take care of yourself...those first few weeks of caring for an infant are so overwhelming - having an infant with special needs makes it all the more so.

Anonymous said...

I know you are angry and that the word "frustrated" isn't strong enough for how you really feel. God will not leave you alone in this. He is always there. He gave y'all Jonah because He has a purpose for him and He trusts you to be able to find that purpose and use it to His glory. He knew Jonah before you did! He also knew the two of you before you were born and knew that Jonah was to be yours. I wish we understood God better, but sometimes I am glad we don't. It is such a cool thing when we look back and see how things happen for a reason and end up working out when our goal is to glorify Him. I know that isn't immediate help for the frustration and anger but I hope it gives you something to hold on to. You have so many people praying for you. Some of these people may not have talked to God in a long time but know He is the one to turn to. Jonah is already serving God!

I have you in my thoughts and prayers here in Texas.

Suzanne

Jenny said...

Hello Patrice,So glad to hear that baby Jonah is home! After reading your update it really seems like Jonah has the same thing Jameson did, the LOUD SQUEEKING kept me up at all hours of the night too!!! Im including some info on laryngomalacia for you to review: The good thing about this is most of the time babies outgrow this around 6 months! Jennifer


Laryngomalacia
From Wikipedia, the free encyclopedia

Laryngomalacia (literally, "soft larynx") is a very common condition of infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. It can also be seen in older patients, especially those with neuromuscular conditions resulting in weakness of the muscles of the throat. However, the infantile form is much more common.


In infantile laryngomalacia, the supraglottic larynx (the part above the vocal cords) is tightly curled, with a short band holding the cartilage shield in the front (the epiglottis) tightly to the mobile cartilage in the back of the larynx (the arytenoids). These bands are known as the aryepiglottic folds; they create the movements that opens and closes the vocal cords for phonation. The shortened aryepiglottic folds cause the epiglottis to be furled on itself. This is the well known "omega shaped" epiglottis in laryngomalacia.
Laryngomalacia results in partial airway obstruction, most commonly causing a characteristic high-pitched squeaking noise on inhalation (inspiratory stridor). Some infants have feeding difficulties related to this problem. Rarely, children will have significant life threatening airway obstruction. The vast majority, however, will only have stridor without other more serious symptoms.
The conventional wisdom about laryngomalacia is that the noise is more pronounced when the patient is on his or her back (with gravity making the epiglottis fall backwards). This, however, is a more common finding in older patients rather than in infants.



Causes:
Although laryngomalacia is not associated with a specific gene, there is evidence that some cases may be inherited.[1][2]



Prognosis:
Laryngomalacia becomes symptomatic after the first few weeks of life, and may get louder over the first year, as the child moves air more vigorously. It generally resolves spontaneously by the second year of life.

Treatment:
In rare cases, surgery is necessary. [3][4][5] Most commonly, this involves cutting the aryepiglottic folds to let the supraglottic airway spring open. Treatment of gastroesophageal reflux disease can also help in the treatment of laryngomalacia, since gastric contents can cause the back part of the larynx to swell and collapse even further into the airway. In severe cases, a temporary tracheotomy may be necessary.

littleleaps said...

Patrice,
We have not forgotten about you since being out of the hospital. Getting use to being a nurse when you want to be a mama is a HARD adjustment.
Anger towards God is not too big for Him! I believe that the open dialog with Him about feeling angry, disappointed, overwhelmed, crushed, etc. is just honest and good. He hurts with you.
I beg God to have mercy on Jonah and your sweet family. I am continuing to hold y'all up in prayer to the best of my human ability. Thankfully the Spirit moans for us even when we can't.

Megan @ Hold it Up to the Light said...

I would like to say that I think you are entirely entitled to be angry, and if I was a bettin' girl....I'd say God is pretty angry too. God doesn't want us to suffer, but he wants us to fall into him and let him carry us.

Easier said than done....especially when you have had no sleep! Praying, praying.

Laura A said...

Patrice -

I so wish I had some magic words to say that would make all this better. And that Jonah wouldn't hurt and that it would all be ok. All I can tell you is that God knows your needs and what you're able to bear- and He even understands your anger. I know this may not sound all that comforting at the moment, but I hope you can somehow lean on it.

I pray daily for you, Matt and Jonah and will continue to do so.

Love,
Laura in TX

Kelli said...

Praying for you to have peace! Also for sweet baby Jonah!

Nancy said...

I don't think I've commented before, but I just wanted to let you know that you and Jonah are in my thoughts and prayers often. I will also be praying that the doctors have wisdom to direct you in caring for Jonah and getting the nutrition to him that he needs.

Nancy in SC
www.rebekahgraceellis.blogspot.com

the-mommy-person said...

Thinking about you and praying for you all. Please God bring Jonah your sweet peace and comfort. Take away his pain and heal his mouth/throat so that he can eat pain free and grow strong and healthy. Please bring amazing quiet over him turning his bandage changes. Hold up mom and dad and show them just how strong You are dear Father.

Cathy said...

God knows you are angry and He can take it! Give it to him!!! He LOVES you, he LOVES Jonah!!!! Yell, cry, scream!!
Having a newborn is not easy period, and you have extra hurdles on top of that.
Stay strong and know I am praying for you and for Jonah!

Stephanie said...

You might fall asleep reading this but I saw it today and thought it might encourage your soul...

“Not a drop of rain can fall outside the orb of Jesus’ sovereignty. All our days—our health, our illnesses, our joys, our victories, our tears, our prayers, and the answers to our prayers—fall within the sweep of the sovereignty of one who wears a human face, a thorn-shadowed face. All of God’s sovereignty is mediated through one who was crucified on my behalf. For Christians, that means God’s sovereignty can no longer be viewed as a merely creedal point, still less as the source of endless mystery. There is more than enough material for creedal confession here, and not a little mystery; but these mysteries revolve around one who died in my place. The mysteries of prayer remain, but they dissolve in worship and gratitude. It is far easier to accept the mysteries of divine sovereignty when the divine love is as great as the divine sovereignty.”
D. A. Carson
A Call To Spiritual Reformation, pp.179-180
~~~

As the Father has loved me, so have I loved you.
John 15:9 (ESV)
~~~

Would the Heavenly Father love His only Son and not watch over every detail of His life? Possessing all authority, power, and wisdom would the Father allow His Son to go through any unnecessary trial or difficulty? Could Jesus of Nazareth live with even the slightest uncertainty about whether His Heavenly Father was in sovereign control of all His circumstances and relationships and was carefully guiding His steps? Could the Lord Jesus doubt for a second that His Father was hearing His prayers any time and especially in dark and turbulent times? When our Savior says that He loves us just like His Father has loved Him will I doubt Him? Will you? This love can never be measured or plumbed to its depth. It is pure, infinite, eternal and unchangeable. Do I believe that He watches over every detail of my life? Can I live with the certainty that He is in sovereign control of all my circumstances and relationships and is indeed guiding my steps, even when I don’t understand? Do I doubt for a moment that He hears my prayers when I am in a dark and troubling place? His divine sovereignty blends perfectly with His infinite love, and with His Father’s tender heart He shepherds you and listens to you when you pray. You can trust Him!

Watts Family said...

The old saying "babies can feel your tension" is so very true. My first child would cry all the time and I didn't know what to do and then my calm husband would take her and she would be fine. Her crying would stress me out and bring me to tears. Your concern for Jonah's pain is very stressful...I can only imagine. You and Matt are doing a wonderful job and just know that there are a ton of people praying for y'all. Try to get some rest Patrice...keep your head up sweetie!

Many Blessings,

Amanda

Anonymous said...

Praying for you in Ohio! Please don't feel that your feelings are wrong. And yes, Jonah should be seen by the doctor very soon if he's not eating enough. You are a great mom with an incredible number of challenges. Has God given you more than you can handle? Well, it's an awful lot for one or two people to handle, probably too much, but remember that you are not alone!

Kim from San Antonio, Texas said...

Patrice, I just wanted to let you know that even in the best circumstances, bringing home a baby for the first time is completely overwhelming. The nursing and sleep deprivation alone can cause you to doubt yourself, your abilities, your faith, everything. It is no wonder that you are feeling upset, angry, frustrated with everything you are dealing with. Give yourself the permission to let it out and make sure that you get some time away for yourself. Whatever you need to refocus and recenter or just plain sleep. I will continue to pray for you, your husband and your precious baby!

Anonymous said...

I prayed for you tonight when I was giving my baby a bath...that one day soon you would be able to do the same.....Trusting God in His faithfulness to bring peace to you during this tough time. Love in Christ!

Anonymous said...

Praying that God will give you and your family the strength to get through this difficult time. God be with you all.

happygeek said...

Praying for Jonah and his mommy.

Stephanie said...

I think I would be feeling the exact same way that you are right now and I think that you are a true inspiration to anyone! It just amazes me to see your strength. You,your husband and Jonah are in my prayers every single night!

Anonymous said...

I know that you are feeling down, I am sorry to hear that. Being a new mom in general is overwhelming and there are many times that we ask the Lord "why" but I will say that you are such an encouragement to all of us moms. Jonah is a beautiful boy and loved by so many of us who do not know him personally. So know that our Lord is tightly gripping Jonah, you and Matt in His oh so powerful and mighty hands. He does promise good to those of us who love Him. Just know that you are being prayed for through all of this and will continue to be prayed for as long as you ask. Because He lives so can we.

Anonymous said...

Praying for you and your family. Have you checked into acid reflux? I know Jonah has a lot going on, but what you described also sounds like acid reflux. Medicine for that is an easy fix. Praying it is something more simple, and that God will comfort him and you.

Anonymous said...

Will start to pray for you and your family. I was mad at God for almost 13 years (hope you can let go and trust Him faster then I did). I realized recently that He did not answer my prayer the way I wanted because if He had it would have been worse for my loved one. I will be praying for you and hope that you will find that PEACE again!!! Melissa-Robinson,TX

Anonymous said...

My sweet Patrice, it is Ok to be angry, and I know God understands your hurt and anger better than anyone, but he also knows your heart and I know he is so proud of the faith and strength, you have displayed over the last year. I cry with you, and I am always blessed by your words. I think your witness is only stronger when you have these moments of WHY'S, because it reminds us all that as christians we to face trials and hurts, but what makes us diffrent from the world is we have a savior, who will never leave us no matter how angry we get at him, and most of all we have HOPE.

I love you all !
Praying for peace
Praying for a healing

Love Gina

LeighAnn said...

You are in my prayers. My sister in law lost her daughter as well. My son had serious health issues for 10 years. You will draw the strength, I assure you. Remember YOU ARE A STRONG WOMAN.

Anonymous said...

Sending tons of prayers for you all the way from India. Jonah and you are in our thoughts every minute of every day

Ray, Megan and Ruby Denise said...

I have been impressed with your strength since I started reading your blog when Jonah was born. I continue to be in awe of your strength even after your post today. What a lucky guy Jonah is to have a mommy who is his advocate, who is so brave and strong to learn so quickly about how to take care of him and trying so hard to do the best for him. Lifting you and Matt up in prayer tonight. Lifting up baby Jonah in prayer tonight. I was just reminded of the lyrics to a song that talks about our strength coming from the Lord. "Lord Your power is made perfect in my weakness, and with all my heart I believe this, Your power rests upon me - When I am weak, then You are strong, Your grace is sufficient to carry me on, You are Lion You are Lamb, You are the King of Kings and the Great I Am, I am strong when I am weak, You are the God of my hands and my feet, Give me Your power give me your song, when I am weak - then I am strong...
Praying for comfort, strength, rest, relief of pain for baby Jonah...

Cyndi M. said...

Oh darling, my heart just goes out to your family. The days will be up and down, but you and I know an unchanging God that is bigger than all of this. He knows what you are feeling and He feels it right along with you. Even when you can't sense His presence, He is there watching over little Jonah and loving on you all. It is natural to go through times of doubt, anger, etc. in the midst of such a negative situation. But in time I know God will help you see even the most difficult things in a more positive way. Keep asking Him for help in every area, every day. You don't have to be strong on your own, you can ask your Father for strength. He is faithful. He already knows every detail of your future, because He has planned it all out according to what will bring Him glory and at the same time, with your best interest at heart. I will pray for you and Jonah fervently and wholeheartedly, trusting that God listens and cares deeply. Stay diligent, it won't be easy but you aren't doing this alone! God IS on your side.

Shari said...

It's OK to be mad at God. It's what you do with the anger that matters. Honey, you have a full plate right now. You're tired and have so much going on. Be easy on yourself. Much love and I continue to pray for you, little Jonah and your husband, too.

Anonymous said...

My prayers for Jonah to feel well enough to eat and thrive. I know you don't want to go back to the hospital. I'm sorry that you are feeling so angry but know that you have had a life changing experience with Jonah and that there will be a period of "grieving" for that sense of babyhood that has been taken from you more than once.

Prayers and Love,
Karen in Boston

Cathie said...

Patrice,
hang in there. God is good - I don't understand it either - and I'm mad with you - but I know you know - He is good - and He will give you the strength -

that all having been said - you MUST get sleep. You cannot function without it. I began having sleep issues after my first was born - he didn't sleep b/c of extreme reflux. I still see a shrink for meds - and still have issues - and sleep deprivation is the first thing to make you crazy - as if your life was not enough. I don't know who can help - I'm on spring break - and while you don't know me - I would be more than happy to come to Winston and take a shift or two so you can sleep. I just know that you have to have sleep to come close to coping with all this. Have Patsy call me if you would take me up on the offer. I mean it - you need to sleep - and maybe even with some medication to help you do so....and - you are still covered w/ prayers. Remember the miracles so far - you are at home...which is HUGE.
Love,
cathie

Saundra said...

Being the not-so-good sleeper that I am, please know that I pray for your family nightly. May God's peace, strength and blessings be with you.

Anonymous said...

Even though you are in the middle of the strom crying out for help is all we can do sometimes. Cry to the top of your lungs scream and don't stop to you feel better. We have 2 family pictures at the cemetary I completely understand that. Although I have know idea how it would be to not sleep and try to take care of a baby that needs constant attention. Ereryone use to tell me that God would not give us anything that we could not handle...Although if you read that verse carefully it says that we can't handle anything WITHOUT HIM. We must rely on Him constantly and if we think we need to understand all of this, we don't. We must constantly look for the SON to shine in anything even the worst storm. No one will get this thing called life. Look for the eternal things. All the lives that this sweet child has touched and you don't even know all the lives him and his mommy and daddy have changed. Hang in there and know that it is okay to be angery. God gave us our emotions and we will use them all at any given time. You are all in our prayers.
C.

M J said...

Bless his sweet little heart, and yours, too! I can relate to the reflux issue, and know how tiring it is. My youngest cried ALL THE TIME until we put her on Zantac, and even then, she could be fussy at times. The good news is, she grew out of it at around 9 months, and no longer has any problems. I will pray that you can find the right reflux meds for Jonah, and that he will grow out of it quickly!!!

Stephanie Loving said...

My daughter Olivia was born at 26 weeks, had a grade 4 hemorhage in her brain, and also endured 17 brain surgeries thereafter. The doctors said she would be a vegtable...she is now 9, and does very well walking, talking, and is in the 1st grade. I know your pain, I know how it feels to not know what will come in the future. I have Jonah in my prayers and you as well. I pray that God will give you strength and hope like he gave me. Give your worries to God and have faith that his will will be done. Love to you, kisses to Jonah.