Tuesday, December 15, 2009

i'm running out of post titles

Jonah has really struggled with his eating today. He has a blister on the tip of his tongue that he won't let me drain, a bloody boogered nose that is either stuffed up or bleeding, is EXTREMELY constipated and has a really bad spot on his upper lip. But more than anything, I just think he doesn't like the taste of the soy formula. He loves the stuff that makes him throw up and hates the stuff he can tolerate. (Heavy sigh.)

Right now I'm attempting putting just a half an ounce of Pediasure to help flavor the (gross) soy formula, hoping he can tolerate just that little bit. For the constipation, I've tried juice a couple times and put dark Karo Syrup in his last bottle. (Unfortunately it's hard for those things to help when he won't really drink his bottles in the first place.) We haven't had to pray for poop in months, but he's straining, turning red and crying every time he tries. This is the first time I can ever remember it hurting him like this. It's very sad.

On a much brighter note, one of my best friends and college roommate, Katie, came to see me, and I was so, so thankful to have her here, especially on a day like today.

I had all these ideas that we would go take some pictures with Jonah and go to Target and so on and so forth. But since Jonah wouldn't eat today, I didn't want to take him out as I was trying every couple hours to feed him. I was disappointed, to say the least, but Katie didn't mind at all. We just sat around, and it was okay. She spent the day listening to me complain, showing me how to download actions for Photoshop, and making some light deflector contraption for my camera so the flash won't blow out pictures and make Jonah's boo boos look even worse.

This is her current status on Facebook: I read something once that said the best friends are those with which you can sit on a porch swing for hours saying nothing, yet enjoy their company completely. I think the same holds true when it's a couch and rocking chair watching the Cosby Show, Backyardigans, and Ellen. Good times.

And now I'm all teary-eyed. Thanks a lot, Katie. I'm pretty sure you did that on purpose. Oh yeah, and you left your hot glue gun and your bag of crafty supplies here, so you should probably (drive an hour and a half and) come over tomorrow to get it. I'm just sayin'.

And tonight I leave you with this - my favorite scenes from Elf... just because.


brandie said...

I just refreshed my dashboard hoping you had updated :) But unfortunately it had to be about a bad day...that poor Jonah, he just can't win hey? I'm praying extra hard for him as soon as I publish this. Glad you had a good visit with a best friend!

Angela said...

I'm so sorry you are constantly, constantly dealing with so many issues, esp related to eating issues. Sigh...yes, God is good, and we know that His plan is for the best. And I know that you know (lol) that Jonah has changed your life for the better. But sometimes I just hate it for you. It sucks. And I'm sorry.

But I do love that your friend came, and her FB status almost made me cry, too. And I heart Elf. ("Oooh, he's an angry elf!") HA!!

This is the day! said...

Praying for you and sweet Jonah. Our little guy has struggled with constipation and Miralax works like a charm. It dissolves really well and doesn't add a bad taste. I don't know if he could take it but it may be worth a try.

Lindsey said...

Three words: infant glycerine suppositories! Its a quick fix for infant constipation and will make him feel SOOOO much better.
From one mother whos child struggled with constant reflux and constipation that ripped her little anus open to a bloody mess every time she pooped (every 3 or 4 days if I was lucky) to another, those suppositories were a life saver. We ended up having to give her a half teaspoon of Phillip's milk of magnesia every day in her evening bottle until she outgrew it (the suppositories did not help the size or hardnes of her stool that was causing bleeding issues).

If he has been constipated for several days, his lack of appetite is probably due to being backed up.

The soy formula is MUCH sweeter than regular whey based formula, so I would not attribute his lack of appetite to the taste of the formula. Also, because of the protein structure of the soy, it helps very much with constipation. With all the changes in his diet lately, his little gut and intestinal tract has to be upset (milk formula and RICE CEREAL especially are notorious for causing constipation).

Good luck!

Rachelle said...

We've had our fair share of constipation issues ... they stink! Literally lol.
I had success w/ prune juice & prunes. I get a couple of dried peaches (aka prunes) which are actually pretty soft & give him bits. Really seems to help a lot.
Also, for your flash you can try to cover it w/ a burp rag to help diffuse the light. Sometimes it works, sometimes it doesn't. I am sure the card she built for you will be better.
Hope he gets the poopies out!

Lindsey said...

OH and just as a sidenote, you really might not want to put pediasure in his soy formula. It will negate the reason for switching to soothing soy by turning it into a dairy product.

Have you thought of adding a little bit of dairy free chocolate syrup (which is usually dairy free anyway)? Works like a charm when getting my special needs babies to be motivated to take their formula (and recommended as a technique by the ped!)

Anonymous said...

Have you tried giving him the Alimentum again? For some reason Anthony developed a liking for it, even though it's disgusting. Maybe if you try to give it to him he will remember it as at least being better than the Soy? I know it's stinking expensive, but maybe he will eat it?

I pray for Jonah (and you and Matt) all the time, so I'm glad to know what I can specifically pray for. I will be praying for healing of those new spots, and also that you will find exactly what he will eat that won't upset his tummy.

Thank God for good friends, right?


Anonymous said...

I will second the glycerine suppositories- they were a lifesaver, and they are soft and kinda greasy, so they probably wouldn't hurt his skin at all.

Joanie said...

Poor little Jonah's mouth. I'm sorry it's been a struggle to feed him again. When my guys were constipated as newborns, the pediatrician said to use a rectal thermometer and just roll it around in there a couple times. I don't know if you think that might cause a blister in his little bottom, but it usually worked the first time.

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

No advice here...my heart just aches for you and baby Jonah...I sure hope you guys get it figured out soon. I just feel so helpless for you all...wish there was something I could do. I am so glad your friend came for a visit...that is so awesome to have a friend like that! It is challenging in the world we live in today to find a special friendship that is TRUE. Well, you have a great support system and your home looks lovely for the holidays, and I know you guys will figure out the eating/pooping thing! Praying in Lewisville!

Kristie said...

ONE WORD OF ADVICE: IF YOU DO GIVE PRUNE JUICE WARM IT UP FIRST. trust me it sticks to their insides better and won't cause severe poopies.Take from a mom who knows.

I am sorry Jonah is having a rough go at it, I will be praying that he will soon get back on track.

Sara said...

Constipation is very common in EB:( Mirilax works great though:-) I am sure you know that suppositories are a no-no for someone with EB. I have heard horror stories from other families who let a well meaning doctor or nurse try one and it caused more damage than good.

I had a nutritionist tell us once that soy MILK will not cause constipation but soy FORMULA will. We had much less issues using lactose free formula, but if he has a true milk allergy, then that won't help either. You can have him tested to see if he is lactose intolerant (just a little poopie sample to send to the lab:-) But I think it takes a blood test to determine a milk allergy. Either way, it might be worth it so you'll know for sure and then cam find a formula that he'll drink (hopefully) and won't cause him anymore issues.

We have had success with the prunes and Mirilax...though it does take a little playing around with the dose to find the right combo for each person. But defiantly worth a try in my book!

Laura A said...

Hi Patrice-

So sorry about Jonah's eating/non-pooping. I'll focus my prayers for him in that direction. Am really glad you and Katie got to visit (LOVE her little girl's chubby cheekers!) I have a friend like that - she lives in OR, so I don't see her very much, but whenever we get together, it's just seems like we pick up right where we left off!

Anyway, I see you're getting lots of good constipation tips, and I don't have any new ones to add. Unless you can do Miralax - can Jonah have that? It's safe and non-habit forming - my 3 yr old battles constipation and Miralax really seems to work for her. (Not to impose my wisdom on you when you didn't ask, but for what it's worth...)

Hope you get to rest this evening!

Love from TX!

Carrie said...

Just sending some positive thoughts and prayers your way. What a rollercoaster :(. Praying for many many good days to come.

thorney said...

I am so sorry to hear about your day and the poor struggles ZJonah is going through. I know it breaks your heart to have to watch him in pain and so uncomfortable, with nothing you can do. You are an amazing mom and he is so blessed to have you (and Matt too:)

I have you in my prayers.


mom21xy said...

My son - years ago - had trouble with constipation while on soy formula and I would add some of the "baby food" prune juice to his bottles. Added sweet flavor plus helped the constipation. I've followed your blog for months and know that you and Jonah are lifted up.

Laura said...

Loved Katie's status. Made my eyes burn in my attempt to not have them water...

Laura S.

LeahNR said...

I definitely agree with the infant glycerine suppositories! I've used it on both my children, at very young ages, too (I got the go-ahead from the ped), and it worked like a charm! Wa-la! Just beware...it might hit them fast, and then next thing you know, you have poop on your hand! I'm jus' sayin'!

Also, have you tried anything prune? You can buy the Gerber prune juice...or the prune baby food. Maybe a little prune juice in his milk? That's just something that worked for my kids. Might not work for everyone!

Prayers with you all daily...
Leah Robbins

Stacey said...

I know this may sound wierd, having never met you and all but I sure do love your company as much as your Katie does. That's the "friend" part of the Lord that just stands out in you and is very evident as you write.

And CRIMINEEEE...Elf...that is soooo funny! I have that video but haven't broken it out yet. We've been watching all the classics. (yawn) Frosty, Santa Claus is coming to Town, Rudolph, etc. When your kids start to tell you that you told them "yes" last night while "we" were watching Rudolph and you can't remember...it was a Christmas conspiracy! But the throne of lies...that's hitting the big screen tonight! I think I'll wrap some presents!

Kiss Jonah for all of us out here in the world of blog. Thanks be to God who gives us the victory and always causes us to triumph through our Lord Jesus Christ! Jonah is a victorious boy!

Penny said...

Praying for some resolution in Jonah's eating. When my now 9 year old was little he had complete fonnd aversions. At 13 months he would only breastfeed. We did use Pediasure and clear Karo. Because he wouldn't eat well he also had constipation issues. About 1 oz of prune juice usually helped but if not we had to use stool softners. I crushed them, liqufied them and syringed them in because he wouldn't take a bottle.

I know our issues are not the same but maybe it could help you a bit. We pray for Jonah, you and Matt everyday here. Pray that you can see over the mountain of life. His little mile just warms my heart.

BTW Love love love Elf!

Mommy Attorney said...

No advice, just saying a prayer for you and sweet Jonah.

DJones said...

Just to add something else to the mix, what about a bit of mineral oil? No smell, no taste. While Miralax will soften the stools, the mineral oil helps smooth the track.

Bubeaner said...

Sorry if you have already gotten this suggestion. I usually read the comments before posting, but feeling pretty crappy thanks to a bad cold.

John really hated his fortified soy formula too. Add the dark Karo syrup to it every time. A tbsp or so should do the trick. (You might start with more until he starts eating it regularly then ease back) You mentioned you already do this, but in order to convince him that it's good... put just a tiny little drop on the nipple. That will get him drinking and then he will realize it does not taste that bad after all. It may take a few times. And this also helps with constipation.

I really hope this helps. Praying little Jonah starts feeling better soon.

Tricia said...

Now that is a good friend. I am praying for you. God bless.

the-mommy-person said...

I love Elf! I wish I had something more than 'sorry' and had some real helpful things to say and do to help you with all the troubles that keep coming. I heart you guys! And I think about Jonah everyday and pray for you all always. If I lived anywhere even remotely close to you I'd bring over dinner and pies at least once a week. :) Even though I don't technically know you. :)

Michelle said...

Oh Patrice, this morning I was thinking about you and Jonah as I made my kids their chocolate soy milk, and I had an idea!

Can Jonah have chocolate yet??? I know it's crazy but I wondered if you flavored his soy formula with chocolate syrup, would he drink it then???

Chocolate soy formula....hmmmm.

Just thought I'd mention this idea to ya', just in case you hadn't thought of it yet.



Confessions From A Working Mom said...

I love Elf! I made my daughter watch it for the first time over the weekend. She lasted about five minutes, but ooooh, she loved those first five minutes.

And I had to laugh at the title of your post... I haven't been blogging near as long as you, but I too struggle to come up with new titles!


Pam, mom, honey, said...

add plain oil, that worked for us

Specks said...

What a blessing of true friendship~ thanks for sharing :). My son Bennett experienced a lot of the same feeding issues his first year (before we got a G tube when he was 14 months old). I just want to encourage you that you are not alone~ I was so, so, so close to becoming a crazy woman when I was sressing over every little ml of formula, weight gain, dehydration, etc. It is so madening and I dealth with such feelings of failure as a mother, even though I knew logically that was not the case. I am praying for you all and just want you to know how truly beautiful your son is!

RLR said...

So sorry to hear about the eating and poop issues. We have dealt with similar issues through the years, and it's no fun at all.
What a dear friend you have in Katie. I'm so glad that you were able to spend some time with her - and I'll say a little prayer that she can make a return visit to pick up her forgotten crafty things!
Thinking of you often - RLR

Laurie said...

I was just going to suggest glycerine suppositories, but I see other have already done so. I had to use them a few times when my daughter was an infant. It's a quick and easy fix!

The Fowlers said...

Because soy formula caused my son some constipation issues, we had to give him one ounce of the Gerber prune/apple juice each day. It worked wonders!

mamma2 said...

I would say that the formula is constipating him. That is what happened with one of my children and I had to put her on a special formula.

Rachel said...

Okay I know you get tons of great ideas from very knowledgeable EB mommies, so just tell me to stop giving suggestions if these are totally stupid and I will listen :)

What about pureeing some cooked peaches real well and adding a spoonful or two to his bottles. One, it will make the nasty soy formula sweeter and two it will help him stay regular. Oh and it will thicken it up a little for his reflux.

Or add a few drops of prune juice to his bottles. I have heard of that helping although I have never tried it.

Ange said...

Have you ever tried Enfamil Lactose-free formula? My son constantly had diarrhea with regular formula, and soy formula made him vomit. My doctor said that this is the most gentle-on-the-stomache formula that you can get. My son never had any issues with it at all.

amanda said...

Jonah shines through the flashes of the camera...he is so beautiful! I know you know that, but I do want to tell you when I see Jonah it's like his boo boo's were never there. He's just got this gorgeous little face that I wish I could just pick him up and hold and play with him. He's magnetic!