UPDATE: Jonah had a HUGE blister on the back of his tongue. After all day of no eating and spitting out the milk and Pedialyte, I finally just put my finger in his mouth, pressed down his tongue, and took a look with a flashlight. HUGE BLISTER. So I called the doctor, and they said they wouldn't lance it for fear of infection. So I called the DebRA nurse, and she said I needed to lance it so it wouldn't get any bigger. WHAT? I mean, I knew that was probably the answer, but how in the world do you lance a blister on the back of your baby's tongue? So then I started crying just thinking about it. But just about the time Matt got home and we were trying to formulate a plan of action (which included an extremely sharp pair of tweezers... please, don't ask), we looked again, and it seems as if it has drained on it's own. So then Matt tried to feed him and got him to take about three ounces. Praise God! Doesn't make up for the day of nothing, but it is plenty enough to keep him hydrated. So hopefully we are out of the woods. The question is what happens if the skin sloughs off the top of that blister? I don't know how badly that will hurt him or how that will affect his eating. So we'll just have to wait and see. I feel at least a little encouraged that he was able to eat a bit. Poor thing. Sometimes it's just too much.
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Just finished dressing change. No blisters from our doctor's visit! I can't believe it. Honestly, the only explanation is God, and I'm just so, so thankful to HIM and to you guys for praying. Actually, Jonah's skin looked really great today. I barely had to drain anything, and the ones I did drain were tiny, tiny. He has a pretty raw spot on his right foot, but that seems to be the only thing really bothering him at all. His face is even clearing up. I'm slathering his face with Aquaphor before bedtime, and every time we get up with him at night. And I recoated it just now after dressing change. It seems to be helping. I'm so encouraged. Thank you for praying!
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However (doesn't there always seem to be a "however" with Jonah), he is not eating AT ALL. Normally, it's a fight, but I can still get him to take two ounces every couple hours minimum. Today - nothing. He latches on to the bottle, takes one suck, spits out the bottle, and starts crying. I guess he has some blistering on his tongue or cheeks, because he is just not able to suck at all. So I think we got him to take about 20 cc's using a dropper, but really, beyond that, he just wasn't interested. And even with the dropper, he probably spits out about half of what goes in. So anyway, if you could be praying about this too, that would be so great. Between the two things, I'd rather him have blisters. He requires so many extra calories to heal and regenerate skin, it's especially scary when he won't eat. But this is a lot worse than usual. He's only done this one other time, and he started eating about two hours later. He hasn't really eaten since midnight last night. He did eat about an ounce at 4am. Please pray that this will pass quickly, that healing will occur in his mouth/throat, and that he will begin eating again very soon. Also, please pray that in the meantime, he will not be starving. So far, he's been in good spirits and has been satisfied but what little we did manage to get down. But I'm not sure how long that will last. He's got to be so hungry. He's sleeping now, but I just pray that when he wakes up he'll be able to eat.
Why is it that the bottom always drops out on a weekend when the doctor's office is closed or two days before you go out of town? Our plans might be changing if we can't get this under control. In the scheme of things, the beach doesn't really matter. I just want him to eat. Please be in prayer for Jonah.
49 comments:
Praying he starts to eat soon!
Will keep praying. God bless.
Sayin' some prayers in St. Louis...
Also, regarding your bathing suit post, have you tried TJ Maxx? They have a ton of cute suits at the one I went to. Not even sure if you have one there, but...
EAT, Jonah, EAT.
I don't know if this is possible with him or not but when my little one got Hand foot and mouth (which caused mouth blisters) the doctor had me "paint" the inside of their mouth with mylanta with some benadryl to help with the pain and swelling right before meals. Maybe you could call and ask your doctor if this might help Jonah.
Praying that little Jonah eats soon!! And for no blisters from the appointment!
Eat, Jonah, eat! We are praying that he awakes with a hunger that he wants to satisfy! Lord, please heal any blisters Jonah has in his mouth and throat so he can eat.
Praying Jonah eats!
My little guy is doing that too and it's because he's teething. Is this a possibility?
Regardless...praying for him to be nourished and comfortable and for Mama and Daddy to be able to relax and not worry.
*hugs*
Woo-Hoo on no blisters! Go, Jonah! Thank you, God!
I would call the doctor now, let them know he hasn't eaten much and find out how long you should wait before it becomes serious enough to put him in the hospital. Dehydration can occur very fast in someone with EB. Though its a good thing he didn't have many blisters today, it could also be the beginning of dehydration. I hope he starts eating soon...i know how scary it is.
Hi Patrice,
As always, we are praying for Jonah, you and Matt. As for Jonah not eating ... my kids used to do this occasionally and I worried just like you do (Jason was a preemie ... hard to believe it now! LOL!!). Sometimes it just may be a "kid thing".
Janet
Jonah is in my prayers.
Have you tried dream feeding him (i.e in his sleep)? A lot of times babies are more relaxed when they are sleeping and will easily take a bottle in this state without even waking up. When my son had undiagnosed reflux and started refusing the breast AND the bottle we resorted to feeding him while he was asleep.
Well, first of all, THANK GOD for no new blisters!!! That is amazing!!
I will be praying that Jonah is able to eat again VERY soon ♥
not to discount your concerns at all, but my kids wouldn't eat when they were about to go through a major growth spurt or about to pop out a tooth (like someone else said). You should feel around in his mouth a little. Usually around the time I would get panic, is when they would decide to correct themselves :0
You are doing a great job!!! I am praying!!!
Thank GOD for no new blisters! That is amazing and I am so thankful that Jonah is not suffering in that way! I will send up prayers that he feels good enough to eat when he wakes.
be encouraged that a lot of babies won't eat well for a couple of days after their shots...obviously he has other problems that could be the culprit, but hopefully its just him feeling yucky after his shots!
I forgot to add that EB babies start to not feel good when they are getting an infection. Has he been sleeping more than normal? Does he wake on his own or do you have to wake him to try to get him to eat?
Some other signs, more fussy than normal, a temperature of course. Even if he doesn't feel warm it doesn't hurt to take his temp just to make sure its normal. Wound looking 'different' even if they don't look infected, even just a little different could be a sign an infection is forming. I know its so hard to tell between EB issues and normal baby issues and common childhood colds/viruses and EB infections.
Does the needle hole from getting his blood drawn look ok? it is possible that some bacteria got into spot the needle went into from his blood draw...
My kids always seem to get sick on holidays and on or during vacations! The first time we took Sami on vacation when she was a baby she got a fever of 103 and were worried we'd have to take her to the ER, 1200 miles away from home!
"Why is it that the bottom always drops out on a weekend when the doctor's office is closed or two days before you go out of town?"
It happens to all of us! Frustrating, but normal.
Thankful that Jonah hasn't gotten any new blisters, and praying that his appetite returns quickly!
prayers coming from Tennessee!
Will change our prayers from doctors visit to mouth/throat and eating! So glad that he didn't get any new blisters from the doctors visit! Hoping he will start eating for you very soon!
Can he have Pedialyte? He may be interested enough in the different taste of it he might take it even though he doesn't feel well.
For blisters in his mouth/throat could you use a "magic mouthwash" type medication on them? Of course Jonah can't "swish and spit" but you maybe could dab some on his sores. My dad recently had radiation and the cancer center prescribed this immediately when he developed mouth sores.
I'm sure you've thought of these things but they are just some suggestions. We'll keep praying.
Oh my goodness...you mentioned Florence! THat's where I live and you NEVER hear anyone talk about Florence!!! It's a small world afterall! Hope you have a great beach trip!
Also, if your mall has a Motherhood Maternity store, they let moms feed and change babies in there.
Poor baby! Prayers from our family to yours ~ always!
Your instincts are spot on, Patrice! You are the mother Jonah was meant to have. If I've ever doubted that God knew what He was doing...and I have...you are proof that He does.
Everyday you will learn a little more. Everyday your confidence will grow. Believe in yourself.
BTW, Jonah is simply adorable!
God is amazing.
the blister disappearing, has to be a miracle, praise god.
Praying for little jonah.
god bless.
I will pray that you can make the trip as planned. I am sure it is scarey to think about leaving. I am also very sure you and Matt need a change on scenery. Paying that Jonah will eat like a champ tonight.
I don't know how you do it. You are truly a blessed woman. And strong.
I'm praying for Baby Jonah to heal quickly from his blister!
Melissa
Praying for pain relief, strength and sleep for you all!!
God Is Awesome... I've been seriously praying for Jonah- and today I sat down with my 6 month old(he's at the stage now- he lOVES to look at pictures of babys) and we looked at different pictures of Jonah. "This is who we pray for- this is Jonah" I hope this is a face he will recognize as he gets older, too. You are truly amazing people, and thank you for being so open to sharing his story.
I will continue to lift prayers up to our good God that the blister at the back of his tongue heals QUICKLY.
~em
Continued prayers, sweetheart. I pray that Jonah's little body will heal the blister in his mouth so he can eat lots and get big and strong!
Lots of love~!
Sara, Kingwood TX
I just remembered I had promised to look into the yard sale website that we have here in Texas - they are sprouting up all over the U.S. I went to the bookoo site and put in the zip code for your P.O. Box to see which ones were near you, but they don't seem to have very many sellers on them yet. Maybe you want to check it out? Here is the website: http://bookoo.com/bookoo2map.jsp?zip=27116
Just click on the balloon closest to you to see what people are selling (you can list stuff too). It's kind of like eBay, only at yard sale prices (haha)!
Sorry it took me so long to get the info for you, I know it is the furthest thing from your mind right now...
xoxox~
Sara
Oh, Mama! What a mess! I'm so sorry to hear about the tongue blister, but so relieved that it drained on its own and Jonah ate. I will be praying for that sweet babe of yours, that God will pour His healing balm on that tongue. What great perspective you have about the beach vs. Jonah eating. Be content in all things, but "be joyful in hope, patient in affliction, faithful in prayer" (Romans 12:12). Still believing for that beach vacation for you!
Don't know if you realize it or not, but you have many "friends" here in Colorado who are faithfully praying for your beautiful family... You come to mind often (oddly enough, usually when I'm in Walmart), and I seem to talk with God a lot while I'm at Walmart. You're the subject of many of our talks. Hang in there. You're a great mom...
Surrounding you with our prayers from all across the ocean in India. We love you dear, sweet precious Jonah!
Am so sorry for the tongue blister - that sounds so painful for anyone, but especially for a sweet little guy like Jonah. SO excited that his skin is looking good, though! Will continue to pray!
Hope you all can enjoy your beach time together - can't wait to see the pics!
Love from TX!
Laura
Glad to hear that he did get the 3 oz down & I have prayed through out the night (not much sleep) that Jonah would be able to eat. Also praying that all of you will be able to go to the beach & enjoy the time with family & out of the house. Hopefully by this time Jonah has eaten much more during the night. Of course that would mean no sleep for you & Matt, but I know you would be happy that he was eating.
Praying now that the blister does not fill back up & the skin does not slough off, praying that it dries up & goes away.
It is very evident that God is answering many prayers since Jonah did not develop blisters from his doctor's visit.
Praying for peace & comfort for all of you.
Prayers & love are sent your way..praying fora better day, less worry, more eating.
Hi Patrice, So glad Jonah has no blistering from the doctors visit. I am praying that he will be able to eat more today then yesterday. Just stay strong (i know it's hard) and eveytthing will be alright soon. Hope you guys have a wonderful safe trip to the beach this weekend and HAPPY 4th. Hopefully everything goes well with Jonah this weekend and you guys can enjoy yourself
well im sure thr blisters are a issue but jonah should be teething soon and all 3 of my children stop eating with teething, just a thought, he may be rubbing his tounge acrosshis gums and biting makeing some of the blisters, no matter what i will pray for better nutrition.
Just wanted to be sure you knew - We Are Still Praying!! Haven't Stopped.
oh i'm praying you get to go the beach with your boys this weekend for a much deserved vacation! and that jonah will start eating, and that this is just one of those quirky things that babies sometimes do... though i know with his EB you have to worry a whole lot more about it.. also wanted to tell you that your blog is so encouraging to me. we do wet wraps alot for my son's eczema, (just learned after having him at Nat'l Jewish for two weeks) but after reading how often you have to do it, and about EB, i can't believe i ever thought it was a big deal! instead of complaining, i will pray for your family and jonah's healing! thank you for sharing all that you do...
btw, old navy usually has some great tankini type suits, sold separately for cheap.. just an fyi..
amy in abq
www.grebefam.blogspot.com
Thanks for the update..I'm so relieved to read he's doing better. I hear ya about going out of town and having the bottom fall out...or so it seems that way. We leave tomorrow morning for a week on vacation and my poor kids are both having asthma flareups badly. So, along will come the nebulizer with us on vacation...sigh....hard to keep these kids free from asthma issues...which I know is really small in your scheme of things but it's still yucky! I hope you all have a wonderful and relaxing vacation and I'll check back in with you when we get back. I'll continue to keep your little prince in my prayers as always!
God is so answering prayer and taking care of Jonah's blisters. I woke up in the middle of the night last night and Jonah came to mind so I prayed for him. I believe prayer is going around for Jonah 24/7. Enjoy your peace for today, God will take care of tomorrow. I love your little guy.
YEAY for no blisters from the doctor's visit. I'll keep praying about his tongue...
it is good that you popped it! if it got too big it could have caused him to choke or at the least gag a lot. i can't imagine the skin would slough off in one whole piece, but if it did, it could cause him to gag/choke. maybe keep checking his tongue once in a while to see how its healing. it may bleed a little since his tongue may rub on the top of his mouth and as long as its a little blood it ok. there really isn't anything you can put on it, which sucks i know...i use salt water to rinse my mouth when I get blisters, but i know that wouldn't work for Jonah. Maybe dab a little on with a q-tip to help dry it up? i have never tired it though...hope it heals soon.
Everything always happens right around the holidays too! Then you end up in urgent care with everyone else and their brother waiting for hours to see some doctor who is in the room for approximately 3 minutes before pushing you out the door (yeah, ummm, it's happened to me a time or two if you can't tell!).
Glad to hear that the blister seems to have started draining on its own. I'll pray for another miracle and that this blister heals up super quickly, and that Jonah can start eating again.
~Amyt
Tongue blisters are the WORST!!! The first time Ella had one and I thought we were going to have to pop it I completely burst into tears. Then after it was popped I cried for an hour. It's the most helpless feeling. Here's how we pop them. I stick my finger in Ella's mouth to prop it open then feel where the blister is. Then, I make sure the needle is on a syringe. This is key! There is no way I'm sticking a short little needle in Ella's mouth with the risk of her jerking and it falling in. NO WAY!!! So I put the needle on a syringe that I have better control over. After he mouth is propped open I have my husband shine a flash light in there on the blister so I see where I'm going, and I just go for it. I won't lie, it's terrible, but once the blister is gone she's instantly able to eat. And as far as the skin sloughing off, the mouth has more blood vessels in it than any other part of the body, and therefore heals much quicker than anywhere else. We've found that by the next day Ella is usually able to eat anything she wants.
Email if you have any questions.
crying and praying for you.
Not sure how this would affect things with the EB, but have you ever tried using baby orajel? It's a gel that you normally put on a baby's gums when they are teething, and it has a slight numbing agent in it (which works, I know because I used some once when I had a toothache!). Perhaps you could put just a little on the back of Jonah's tongue right before feeding him and then he wouldn't be in as much pain and would be able to eat. Praying for you guys!
A.
Have a great trip. I know that you probably think that you will still be doing the same things where you are,the same routine but it will be at a different place. Enjoy being with family. Try to have a little bit of couple time. I know having a special needs baby puts a strain on the marriage. Even if you just take a walk on the beach by yourself. I have a special needs child so I know that you have to have some couple time. I will be praying that the weather is good for Jonah and that eating gets better soon. Praise the Lord that the blister were not bad from the blood draw, it was truly a miracle.
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