Friday, January 15, 2010

the protein problem

Jonah had us up six times last night and had a gusher with tonight's bottle. It was a nice run while it lasted.

The gushing really wasn't his fault though. When he was doing okay with milk and whey protein, we were adding Beneprotein to his bottles. When he started having issues with that, we switched to adding Provide protein, which is not whey based. Problem - it tastes like cherry. So when I was desperate for him to eat and decided on junk-free bottles, the protein got taken out too (I was doing 5 ml in three bottles a day). His nutritionist ran the numbers yesterday based on how many ounces he's taking a day now, and guess what? Not enough protein. So tonight I put the cherry stuff back in there, and BOOM - gusher. Sigh.

He's not getting enough protein to heal and grow, apparently.

So anyway, now she wants me to start Duocal and ProStat 64. Duocal is protein free but adds calories. ProStat 64 is protein but only comes flavored. And how in the world is he supposed to be hungry for solids when he's being pumped full of so many calories? But how can I lower the calories if he's already not getting everything he needs and has finally started gaining weight again? And I would just put the Duocal in solids, but he's decided he's not interested in that again. I just don't know.

Anyway, besides that frustration, we've had a good day. I know maybe it's a lame-o blog post to talk about the weather, but man, it was an AWESOME weather day. Sunny and in the lower 60's. Jonah struggled to eat his first bottle of the day, and it was quite the battle. We did an 11:00 dressing change, another feeding, a 30 minute nap (he's killin' me, people), and then we made a Target run. It was so nice I stood out front with Jonah in the cart and talked on the phone a few minutes. It felt great, and Jonah was loving it. Tonight has been low key, and I'm off to bed. After our rough night last night, I'm exhausted.

No big plans for the weekend. I'm glad. I think it's supposed to be rainy, so I'm fine with not having a lot going on. Hope y'all have a good one.


Laura A said...

So sorry about the gushers, Patrice - the whole eating thing has got to be so frustrating! One question - if he's getting all the protein, etc. through the liquid, then is it as important for him to have solids? Or does he really need both to be able to meet his nutritional needs? (Sorry if this sounds dumb!)

I'll pray for things to resolve quickly with Jonah's eating, and that you'll all be able to rest tonight. Hope you have a great weekend!

Love from TX,

Sewconsult said...

Praying that you all sleep well tonight & have a successful day tomorrow.
Beckie in TN

Kim and Asa said...

Patrice, if you want a few cans of Duocal to be sure he'll tolerate it, I've got several cans and would be glad to ship a can or two to you. Send me an email if you are interested. We get it to mix with Asa's solids but he too has decided to have no part with eating! We've got the tube though so we run Pedisure with the pump. Anyway let me know.

Callie said...

you could try Prosource Liquid protein. I don't know the manufactuer but here is it
It is a whey protein. it has 100cal and 10g pro per 30ml. They also make a low carb one with less calories.

Stacy aka Fahiima said...

Maybe you could try unflavored yogurt or kefir. It adds a lot of protein, but is fermented which makes it easier to digest. It could either be fed to him alone or just added to the bottles.

Praying for you to have wisdom in this situation, Patrice.

Debbie,mother of two said...

Poor Jonah, when you think you have it right you have to change it again. So sorry for the gusher but he did go a good while.I will be praying for things to get straight. I can't imagine how it makes you feel as a mom. Hang in there. Debbie

jess said...

Have you ever tried goat milk? You can get it powerded, safe for newborns. It is full of protein and very non allergic (nothing like cows milk). The only draw back is with the smell (taste is fine). My daughter was on a goatmilk/formula/brestmilk combo for a while to gain extra weight. There was one grocery store where I could get it fresh (but pasturized), it tasted and smelled fine.

WendyBee said...

It's even warm up our way. Snow and ice are melting.
Good luck with the protein issue. If it isn't one challenge, it's another. Keeping you all in my prayers.

the*4*of*us said...

Poor little guy :(
He is a few weeks younger than mine but weighs a good bit more! I am praying you figure something out!

Island Jack's Travel said...

It has been a long time since my kids were babies. When can you start him on "baby meat"? I wonder if it would stay down better than drinking the protein?

I'm so glad you were able to have a carefree Target run!


Erica said...

So sorry about the eating frustration! On a positive note, though, those birthday pictures of Jonah are ADORABLE!!! :)

We have used Duocal for a year now, and we LOVE it. They say that since it is not protein, it doesn't fill a kid up. When we added it to Eli's bottles, we were afraid he'd start eating less, but that wasn't the case- he ate the same. So, anyway, I have no idea about the other product you're adding, but we have had great success with Duocal!

Best of luck- hope you enjoy your weekend!

memorysdaughter said...

Hi! My name is Sarah and I'm a long-time follower of your blog but a first-time commenter. I'm a college student who works with special needs kids. I also follow more than 200 blogs, and I'm sending a very special message to all the blogs I follow: YOU have the chance to be part of a miracle!

If you are a member of Facebook or know someone who is, please take the chance to do something incredible!

Chase Community Giving is awarding $1 million to 5 charities! The Gwendolyn Strong Foundation is working to find a cure for Spinal Muscular Atrophy - and they could use the money!

Fast Facts:
- SMA is the #1 genetic killer of infants under the age of 2
- 50% of those diagnosed will not live to see their 2nd birthday
- kids with SMA lose the ability to sit, stand, walk, talk, eat, swallow, and breathe
- 1 in 40 people is a carrier
- the National Institute of Health says that SMA is the #1 CURABLE disease if given research funding
- right now there is NO cure and NO treatment
- right now SMA is a DEATH SENTENCE

Want to change that? Vote for the Gwendolyn Strong Foundation on the Chase Community Giving app on Facebook! You have five votes to tell the world that you want a CURE for SMA!

Tell your friends and blog contacts - let them know they could be part of a MIRACLE - be part of a CURE - and give these kids a FUTURE!

Thank you!

Mom 2 One said...

Sorry to hear about the issues Jonah is having. Please do not go overboard with the duocal because some babies and children can not handle it. The minute he has any diarrhea stop it right a way. I had to with my son. That was a sign to look for. My son has a feeding tube and I was putting it in his feeds at night and it got really bad. I took him off that and switched from pediasure to peptamin jr through his gtube and he is actually hungry to eat. So I have been able to give him less at night. Just a suggestion. Hope everything goes well. Also I love seeing all the pics of him. He is getting so big. Can not believe he is going to be 1 already.

Jenilee said...

I haven't been by your blog in awhile. Wow has your precious baby gotten big! :) And he is just too cute. I love that 12-18month range.

I'll continue to pray for his eating to level out and that you get some much needed sleep.

God Bless!

Chad and Jessica's Family said...

I found you through jumping around. I am so sorry for your loss of your other child and my heart hurts for you. I am also sorry your son has EB. I know someone who has a wonderful skin care thing and it is crocidile oil......... maybe it could help? Go to for more........ Jonah is absolutely beautiful and so sweet looking........ have you ever tryed a nateopath or another thing I thought of is called collodial silver........ I have used it on my daughters skind and seen results before my is a natural antibiotic and can be taken internally......we make our own because it is cheaper and if you would like I would LOVE to send you a jar and you could try....internally and externally.....research all the benefits of it too....... May the Lord bless you. My email is and I would love to bless you with some silver if you would like........ It is safe and healthy. We drink tons a day!!!! Bless you.


Chad and Jessica's Family said...

Oh and one more thing....... a great source for you all would be DanielChapter one. You can call their show live and they have products that have healed many....... You call in and tell them about your son and they will tell you what herbs and things to get and oh they have formula that is all natural and has helped babies with really severe health stuff......please look them up and call them...... I think you will be pleased. Oh and another thing...... they said he is lacking protein? If he can eat solids you could make him homemade broccoli as it is loaded with protein.......... anyhow..... I hope this helps..blessings


Carrie said...

I am still curious to know if you have looked into a feeding therapist- either through an Occupational Therapist or Speech therapist (personally I find that the OT feeding therapists are better, but that is my experience). It is easier to deal with behavioral feeding issues early on. I would also second about watching side effects from Duocal. Peptamin Jr is popular among some of my past students ( I worked for 7 years with kids who had severe medical issues, were g-tube fed, and several had behavioral feeding issues). They all seemed to handle that better then anything else.
Some things to help with solids- these might sound crazy but sometimes they work. You can let him play first with the solid. Some kids will eat it after accepting the texture with their hands. Offer a reward after each bite. For instance, have his favorite food and after he takes a bite or even accepts the spoon on his lips- present that toy. Then keep that toy only for meal time. Increase the demands as he progresses. Get a mesh feeder and put, well put anything you want in there (okay, no nuts of course). Give it to him with no expectations, you might find that he sucks on it and likes it. I find that bananas and apples are good. Experiment with textures, maybe he is ready for some finger food.
I know that EB offers it's only problems with getting enough to eat, but he is classic for a child with behavioral feeding issues. I have worked with kids who need extra nutrients and somehow they do okay. I don't know how but they do! The parents become so frustrated. But if you relax (easier said then done) Jonah might too. Please look into early intervention services, or private feeding therapy. Nutritionists are great but they are not trained in feeding therapy. Hang in there, it has to be extremly frustrating.

Anonymous said...

Hey Patrice - I got your tweet tonight about your rough day with Jonah and just wanted you to know that I've been praying for him ever since I got it. Praying that it was just an "off" day and nothing serious. Also praying for good sleep for all of you!


P.S. - So glad you're on Twitter now. I love being able to pray for needs right when they come up instead of when I remember to check your blog!

Rebecca said...

Just curious why you didn't breastfeed? Seems like he would have tolerated that a lot better.