Sunday, November 15, 2009

photo (not so) fun

We've had a pretty good weekend. We did get out for about an hour and a half on Saturday (bought a few things at Kohl's... most stuff 50% off plus I had a coupon for an additional 15% off), and we did a lot (maybe too much) today.

We got up first thing, got dressing change out of the way, made it to church (hooray!), and then after coming home and feeding Jonah, went to a park in Greensboro for some pictures. Shaina and Mom came with us. My hope was that Shaina could take lots so we'd have one for our Christmas cards (that's right, how domestic am I). That's actually what we got at Kohl's - coordinating clothes for pictures. Not too matchy matchy, but coordinated colors anyway. All of that to say that I've been looking forward to this for weeks. I've been waiting for another pretty weekend so we could do it, and after this past week with all the rain, I was soooo excited.

So you know how it went, right?

Jonah fussed and cried the whole time. And finally, when I attempted feeding him to see if that would help, he flung himself back, screamed, pulled a scab off of his ear, and got blood all over my shirt. I don't really care that there's blood on the shirt, but needless to say, all of that ended the photo shoot. And I was extremely disappointed and frustrated and ticked off... not at Jonah but just that we never seem to get a "normal." And I know babies are fussy during photo shoots sometimes, but I don't think it ends with them refusing bottles, screaming, flailing around, and ripping their skin off. THAT about sends you over the edge. I think it was just one of those things where I had really built it up in my head and I had so looked forward to it and been waiting so long to "really" get out... there's no way it could have lived up to my expectations. But it really came in WAY below the bar. Sigh.

We are really struggling to get him to eat right now. He took 17 ounces the last two days and only 15 today. He is barely eating three ounces at a feeding, and it's like pulling teeth to do that. It took us from 7:30 until 9:50 tonight to get him to eat 50 cc's (1 1/2 ounces), and we finally just gave up. He just wanted to sleep and every time you'd put the bottle in his mouth, he'd spit it out and start screaming and flailing. And this is how it's been for about a week now - at every feeding. He had gained an ounce on Friday, but things, at this point, are going downhill. I think I'm going to go to Target tomorrow and buy a couple different types of formula to see if he takes any other kind better. The GI seems to think it's possible he could have outgrown his protein sensitivity by now (kids can do that as they approach a year, apparently), so he said it might be worth a shot to try something besides Alimentum (aka burnt potato water). We've given up on solids for now.

Anyway, I'm tired and frustrated. I know, compared to Courtney and Tripp, I have nothing to complain about, but I still need to vent. Could you please pray for Jonah's eating difficulties (you know, for the 475,000th time)? I'm really worried about him.

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And I just want to say an extra special thank you to Matt's parents' Sunday School Class, The Rice Family, and Liberty Chapel UMC. Thank you from the bottom of our hearts. We are overwhelmed at your kindness and love. Thank you for being the hands of Jesus to our family.

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Oh yeah, and let me know if you have found a good-tasting formula your kid really took well because of the taste. At this point, I'm willing to try just about anything.

If only sweet tea could sustain him...

79 comments:

Lindsey said...

Try Good Start Soy - it has all the same vitamins,minerals, caloric and protein content as a milk based formula, but because it is soy it is gentler on the digestive tract..... AND it tastes much sweeter and not vitaminy like milk formula! Yes, I tasted my childs formula. I also tasted all of her medicines so I knew exactly what was going in her mouth and why she might not have liked it.
My little one had horrible acid reflux (she was on two medications three times a day for it until she was about 1 and grew out of the sensitivity) and this is what she drank between month 6-12 and I started her on milk. You know, since Jonah is approaching 1, talk to your ped and see if he/she is comfortable letting you go straight to milk. It tastes like heaven in comparison to formula.

Melissa said...

Patricd. have you tried putting some vanilla flavoring in the formula. I had to do that with one of the babies I cared for.Worth a shot. Give Jonah a big hug for me

Laura A said...

...are you sure sweet tea won't sustain him? :)

Sorry to make light - I know how concerned you are, and I'll continue to pray for Jonah. Maybe you could mix the formula with tea? That even sounds strange to say that- scratch that bad advice, Laura!!

Anyway, my prayers are with you, Patrice. I hope all three of you rest well tonight.

Love from TX!
Laura

PS - congrats on the one-ounce gain!

lifelaughsandlove said...

Sorry about the photoshoot. They are stressful enough under the best of circumstances!

We have been successfully giving Anthony dairy/milk products for a while now (he was on Alimentum for a long time). We are still giving him the Alimentum because he takes it well and I'm trying to introduce things slowly. Maybe you could start mixing regular formula with the Alimentum (that's my plan).

We bought a can of Enfamil Lipil (it's what we used to use for a supplement with our little girl). I'm not sure if any formula really tastes too great, but probably anything is better than the Alimentum. I've grown immune to the stuff but our babysitter gags every time she smells the stuff. Poor kids who have to drink it!

Maybe you should spike his bottles with sweet tea :)

HandyFamily said...

Praying for you and Jonah!

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

Patrice,
glad you got out, sorry the photos didn't go like planned...I agree with another reader...even on the best of best days...the photo shoots never seem to go well. I know Jonahs formula is very high in calories so would putting cereal in it just fill him up with less calories? When the formula didn't satisfy my boys I added the cereal and it really helped. In your case, it may have the reverse effect. Also, before you go out and buy more formula call your pediatrician and ask for samples...the companies give them formula to give to patients, just like in the hospital. We had to switch both our boys and they gave us some to try before spending $30.00 a can just to try for a week...I hope your family rests well and we will be praying! Much love from our family to yours.

Danna said...

Carnation Good Start! My daughter had severe eating issues when she was a baby. It was the ONLY thing she didn't scream and projectile vomit all over the place. (and it didn't make me gag when i fixed her bottles!)

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

I have to second Danna's comment...Good Start is what my youngest son drinks...it isn't as stinky, isn't foamy, and disolves pretty well!

iluvmysweetgirlz said...

I am praying hard for you! My first was on the same stuff Jonah is taking now. She was able to go off of that after a few months and I put her right on Isomil, she liked it a lot better. My next I exlusivly breastfed until 7 months and then my milk dried up (I have a medical condition) and I put her on Isomil too and she was happy with it. Good luck! I read your blog every single day and think of your family many times a day. Jonah is just so precious and you are a great Mama!

~Kristi in Colorado

Merrilee said...

What about goat's milk? It's really close to breast milk, and super easy to digest. A lot of breastfeeding moms will supplement with goat's milk after 6 months if their supply diminishes. You could pick up a quart or pint, it wouldn't be much, and might be worth a shot.

Likeursoperfect said...

I know that a lot of people will "look down" on this, but if it works, why not? Try dipping the nipple in something like sprite or sugar water (or sweet tea). He might take the formula just because he likes the taste of the nipple.

Scout812 said...

For Sierra, we put 2 oz of vanilla milkshake flavored ensure to every 6oz of formula......worked great!

Nutty Mom said...

Donut has a very sensitive tummy. She had been drinking Nestle goodstart gentle plus, but now that she's over a year and can't drink regular milk (due to stomach issues) I found enfamil premium with vanilla. She LOVES it. I don't know if they make a vanilla flavored one for under 12 months, but it's worth looking for. It smells good too!

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

My children each have had some sort of sensitivity issue when I stopped breast feeding and changed to formula. The one that has always been received well by all of them is Walmart's Parent Choice...My daughter had to be on the soy formula and that worked out so well, I put my baby on soy when he started out. The nutritional value of parent's Choice compared to brand name Enfamil is actually better but somehow the taste isn't yucky (like formulas can be) and the price is about a 40% savings.

I give God the glory for the weight gain, as slight as it may be, it was not loss. I trust He will continue to touch Jonah's body. In case it needs to be said again, we are praying throughout our days here for Jonah.

I am sorry to read that what you hoped would happen for photos did not...I pray for peace and strength to you as you face issues most of us can't even begin to imagine.

I love you.

Sharron said...

Hi ,
Lots of good suggestions. Have you thought about changing the bottle and nipple? That may help. Also I was wondering if a sippy cup would work. Be careful and don't spend lots of money. I liked the one suggestion to ask the doctor office for samples. Good luck and remember lots of us are praying for all of you and for you to find the correct solution for Jonah.

the Klimeks said...

Sorry, no advice on the formula, although the flavored ensure tip sounded really smart!

If any of your pictures turned out well from your photo shoot, the blood on your shirt can be photo shopped out. I would be happy to help you with that, or do it for you on a few photos you like if you want to e-mail them to me. Just leave me a message on my blog if you are interested, and I will contact you with an e-mail address. :-)
Prayers for success with Jonah's formula!

kruger.4 said...

I used Carnation Good Start. I like it alot. My son would vomit alot on Similac and so I switched him to the soy based of it and he did great. But also I think that you should have his ears checked.. It is sounding like a ear infection. Same clues he is doing my kids did.

GOOD LUCK I hope this all works..

Carrie said...

Praying for good eating for Jonah. Even though our situations are not the same, my 10 month old son struggles with solids just like Jonah. When I read your posts, I can so relate to the frustration you feel over eating issues. Obviously you have greater reason to worry (with the tube prospect), but I can relate so well to stressing about eating. Always thinkings about you guys!!

justdawn said...

I am a long time reader but rarely comment.

We are Amercians stationed in Germany. The German baby formulas taste MUCH better than the American ones. They are more sweet, like breast milk.

If you would like to e-mail me your mailing address, I would be happy to send you some German formula (and baby cereal, too). It is WAY different and (in my humble opinion) better than what you can buy at Target;)

Angie said...

I am praying for Jonah and for you.

Your feelings of disappointment over the scrapped photo shoot are so normal. Thanks for being so transparent and real. I think moms are so blessed by your posts because they can see God working in your life - amidst the struggle and difficulty. They see your joy and humor and perseverance. They see God working in your life. I know I do.

I know that people can come here to check on Jonah and know how to pray for your family more specifically. But you are a blessing and an encouragement to those who visit your blog.

Thank you for that.
Have a good week!

Brittany..Following my Bliss said...

I used Carnation Good Start for my babes that weren't milk sensitive and the Carnation Soy for my two that needed non milk based.
I agree that trying different nipples/flow or a sippy might work too? I'll pray that Jonah decides to eat better for you!

Carie Hatmaker said...

Oh Patrice, I am so sorry you are having a discouraging week!

I agree with many of the other posters. Try switching nipples. My son almost stopped taking a bottle for me because I wa still using a slow flow nipple. I switched, and things were much better. We also used the alimentium formula, and I don't know that ANYTHING could help the flavor of that stinky stuff, but adding a little vanilla is a good idea.

We also added cereal to his bottle when he was about Jonah's age. If I remember correctly, we added it to the morning bottle and bedtime bottle. It might take him 30 minutes to take a formula only bottle, but he'd suck down a cereal bottle as fast as he could. He would also sleep really well right after those bottles.

We did eventually switch to Enfamil Lipil before transitioning to whole milk.

Hang in there, and know that you are a blessing to your readers!
Carie

Jennifer L said...

My son had a blood sugar issues while in the hospital and they gave him glucose bottles to prep for his blood sugar tests, so sometimes he would refuse formula and we'd dip the nipple in something sweet so he'd take it. He also didn't gain weight correctly because he had a latching problem for a while.

I know people say that juice makes kids fat, but when kids are underweight I think it's important to just get the calories in...and my Mom started me on some apple juice when I was about a month old--it gets annoying around my family though because doctors now say wait 6 months before solids or juice and the ladies in my family griped that I was "starving" my baby because I wouldn't give him solids earlier. Anyway apple juice is generally gentle on stomachs (I use it to calm stomach upset, nausea and help gassiness) so I sometimes give my son watered down apple juice because he had really bad gas for a while. At first I gave him 50/50 mix and now it's 75% juice and 25% water as my son has gotten used to it. He also hates colder bottles, so I mixed juice or made regular formula bottles with warmer water.

Kristina said...

Our daughter who was born at 30weeks gestation and is approching a year (TUESDAY) still cant handle solids and is only eating about 16 oz a day! Our pediatrician reccommended mixing vanilla or plain yo baby yogurt with the formula or pedisure with the formula for the taste. Try that?

lori in va said...

Good Start wokrked like a charm for us. Good luck.

Cathy said...

How close is he to turning 1?

If/when he's old enough, you could try to start transitioning him to Pediasure (super sweet, several flavors), or if he still has the sensitivity, there are several toddler formulas that taste SO much better than Alimentum but are similar in make-up.

Peptamen Jr. Vanilla smelled decent. But what my son (who has a feeding tube) loooooves is Vital Jr., in Vanilla. Tastes like CAKE. The kid who would never eat was downing it like crazy.

All those are a 30 cal/oz base.

We also sometimes mixed Carnation Instant Breakfast into formula - extra cals, extra nutrition, strong sweet flavors. Milk-based, but our milk-sensitive guy did ok with it. And you wouldn't have to wait for him to turn 1 to try that.

Good luck!

Jess said...

Did you mix the words good tasting and forumla? I'm not sure because the only brand I used was the good ol' similac with iron. But hopefully he starts eating a bit more for ya soon! Sure does make a parent worry!

You'll get a photo in time for Christmas! :)

jess said...

How about ensure or pediasure...not the BEST nutrients, but it worked to get a few extra pounds on mydaughter. Jonah s a 'little' young for it, but it it works, I really can't imagine the harm. Also, there is something called Whey powder...it is a great protein from milk (but it is not as allergic as milk, I have been told). I used whey powder mixed with any liquid to gain healthy weight when I was pregnant (I had hyper emesis and was always sick and unable to eat). And it taste great, like a milkshake!

Good luck.
Sorry about the photo shoot.
Love to Jonah!

victoria said...

I didn't have time to read all the previous comments, but I wonder if you change to giving him a cup in the day time. He is 8 months, and is probably pretty interested in doing what you are doing. Maybe the sucking hurts his mouth/throat, and drinking from a cup will help with that. If you sit him on your lap, and use a small mug, you won't have to invest in sippy cups just yet, as he still has to suck on those. It's already taking you a long time to feed him, so using a cup won't be much worse.
Good Luck - feeding issues are so frustrating.

kedw said...

my son was exclusively breastfed and I was really scared that he would not take formula when I ran out of milk. He took Simulac Organic like it was nothing different. Liked it so much that he refused whole milk in the beginning. He never seemed to notivce the difference between breastmilk and his formula.
good luck:) your such a good mom!!

Jamie said...

My son really loved the Carnation GoodStart formula. He fought the bottle a lot and rarely ever just drank a whole bottle of formula until I switched to Carnation GoodStart. He drank that stuff up!

Brittany said...

I don't really have any suggestions for you, but I wanted you to know that I pray for you, Jonah, and Matt nightly.

You have taught me so much about faith and trusting in God. Your family is just precious.

I hate I didn't run into you Saturday, I was in Winston and kept thinking I hope I see Patrice and Jonah. :)

Heather said...

Yes, will be praying. You can ask for prayers as many times as you need to.

Ani said...

Our little angel has GERD so she's on Nutramigen (stinks to high heaven!), but our oldest used to love Good Start formulas - the proteins are broken down so they are gentler on their stomachs.
Also, can you add some baby food to the formula? We went through a phase where the only way he would take his bottle was with some bananas or pears in it...
Good luck!

Kim M said...

OH, I love that little guy of yours! I'll be praying specifically that he begin to eat more and take in more calories - this must be so difficult for you! I'm praying for you and Matt too. Thanks for letting us peek in on you and know how to pray specifically.

Thomas and Jamie said...

Patrice...this MAY not help, but it MAY. My son was quite ill last year around this time (he was about 8 months old) and the only thing he could hold down was Goat's Milk. Now, it's not something you would want to keep him on FOREVER, and, it doesn't smell good, but my son seemed to enjoy it. You can get it at most grocery stores in a can and then just mix the concentrate with water. (I used Meyenburg)

I'm praying!

Amy Dalon said...

Hi Patrice,
I'm a long time blog reader but rarely comment. My daughter (now 3) had a milk protein sensitivity and the alimentum was not enough for her. We had to go to an amino acid based formula called Neocate. It worked miracles for us. She was never an enthusiatic eater (I think b/c of all the pain she'd been in), but she was no longer in pain on the Neocate so she would eat at least without screaming and flailing. She did eventually outgrow the sensitivity and drinks regular milk now. The downside is that it's $50 a can. We went through 9-10 cans a month. And yes, it's the same size can as what you buy in the grocery store. It is available on Ebay though. Normally, if you buy it straight out, a pharmacy has to order it for you (no prescription needed). Also, if that's not an option, Neocate does make flavor packets for their formulas. There is a cherry one that my daughter really liked. A little goes a long way with the flavor packets, so you just have to experiment with the strength. You could add the flavor to any formula, not just Neocate. The flavor packets are hypoallergenic, so they're safe for allergies. You can order those from Neocate's website (neocate.com I think- it's been a while since we've ordered anything!). We will continue to pray for you and Jonah!!
Amy

courtney said...

when my daughter was a baby, we had to mix a little bit of karo syrup with her formula to help with constipation. i know it definitely made it sweeter. you might ask your dr if it's okay for him to have a little karo in it.

will be praying for you. i can't even imagine how frustrating this can be day after day.

mrsrubly said...

praying for johah's eating! and the photoshoot? i am so sorry. there is nothing worse than planning this stuff, buying everything and kid(s) do not cooperate. maybe this week will be better. do not give on up the photoshoot, mom. your doing great. make those memories come alive! i am so happy that ya'll are able to go to church with jonah! give me a baby squeeze for me! bonny in TX

Linda said...

Hi Patrice:
Love those pictures of Jonah. Can't give you any feeding hints because Leah stopped eating the solids too. She is teething right now (all the uppers) and is in pain.
We are praying for your son everyday and praying for you and Matt to keep up the GREAT job you guys are doing. It is soooo tough. God Bless you. Love Leah's Nana

Amy O'Connor said...

I'm sorry your weekend photo shoot didn't go well. It can be frustrating enough without everything you are living with. Speaking of, I hope you are able to find a formula that suits Jonah. Poor guy! Maybe you guys will get some good pics soon enough. I love seeing pics of your little man!

thislovelyjourney said...

Some good suggestions here already! I would definitely second (or third, or fourth) the ideas of asking the Pediatrician for samples (formula is SO expensive!) and look into different bottles/nipples. My littlest guy is particular about which nipple AND flow speed he gets and it always changes how much he consumes.
Your photo shoot flub is truly just par for the parenting-course... No, not every baby will rip his skin off during a photo shoot... But trust me, all the other antics? Oh yes. Any of us who've tried to get a good family shot have been there and done that- the failing, screaming, refusing to be comforted... and on and on! We have some shots that would probably get us hauled in- oh the agony and trauma the kids have on their faces!! Years later, they are starting to hold some humor for us and definitely speak the truth of how it really WENT DOWN.
All my best to you, Patrice.
Your honesty is wonderful. As I've said before, the details are different but really, truly, SO many more of your moments as a mama are just the same as any other mama than are different. I read many of my own moments gone by and still yet to come in your stories with Jonah.
God Bless you all.

Julia said...

Hi Patrice- My son has a severe protein allergy as well and is on an elemental formula that we have to special order. The good news is that they come in flavors. He was on Ele-Care that I know for sure comes in Vanilla flavor. He had to be switched to Nutramegin Amino Acid and I am not sure if that one comes in flavors or not. I also know that NeoCate has flavors as well. It is REALLY expensive (Ele-Care $33 for a 14 oz can and Nutramagein AA is $40 a 14 oz can, but worth it. It has made a world of difference with my son.

Sunny said...

SO sorry about the pictures. been there unfortunately. minus the blood. we thought kyan had a concussion from a tantrum and head bang on the concrete. I was devastated. For us after 3 years of very difficult, this year was easy. I hope yours get better too.

For our exorcist refluxers, the combo of prevacid and neocate was the only thing that worked. neocate is super duper expensive but WIC covered ours. Good luck.

Tara said...

I know the feeling with the pictures. We also tried to take some this weekend with our 4 kids. It was a disaster. My husbands 6 year old made a goofy smile in almost all of them AFTER we told him numerous times to not do that. I do not think we will be sending out a picture with Christmas cards this year!
Praying for some better eating for Jonah!!

Cathy, Kris and Rose said...

i know this sounds strange, but my neice would NOT drink formula or milk (only wanted breast milk), and my sister in law's supply was drying up. she mixed a little ovaltine with formula (and eventually milk) and Sara drank it like it was going out of style!

You've gotten some fabulous suggestions, just felt like I'd add mine!

Take care, get some rest!!

Cathy Rutkowski

Malinda said...

My picky one is a Target Girl through and trough... when I had to switch her to formula I tried them all and the only one she went for was Target brand (she saved me so much money!!) I think mixing formula with something else is a good idea - that is how we introduced her to whole milk. She also only drank it warm. Praying that you find what works for you and your little guy!!

Sara said...

the ONLY formula my kids would take was the Target brand lactose free. We kept switching with Sami as a baby and finally ended up on this one and she began to eat better and when the other kids were born, we just started on that right away. Even the short time Garrett was with us he was on that kind and ate really well not only for a newborn but for a newborn with EB!

Also, thought i'd mention this while I thought of it, but a lot of adults w/ severe EB have mentioned that dairy products, particular cow's milk, cause their skin to get worse and noticed a big difference when they switched to soy milk. Plus cow's milk doesn't have any iron in it:(

Though I have never tried it for my kids but I do know friends who have tired the Good Start Formula and had really good luck with that too.

I hope you find something!

Aimee said...

Dear Sweet Patrice:
I was looking through a magazine last night and saw something that might work. It is called Enfagrow Premium Lipil (vanilla flavored). It is for toddlers 12-36 months but it may be something you could use. It comes in powder or liquid and I guess you can find it anywhere you buy formula. Website: www.enfagrow.com
Have you thought about using Pediasure? It is supposed to be a supplement/meal replacement for picky eaters. I think it is for older kids but it is a liquid and he could drink it from a bottle. Ask your GI or his pediatrian. Website: www.pediasure.com
I am praying for you today!
Love you, Aimee

Angela said...

I'm no expert, especially when it comes to EB of which I don't know much other than what you have shared, but since Jonah has such severe reflux is it possible that he needs his meds increased? I know before my son, Noah, was diagnosed with reflux we went through similar issues as you are describing. First it starting with refusing daytime feedings so we were forced to feed him in his sleep since he was more relaxed. Then even that stopped working. He completely refused the breast, so we bottle fed expressed milk. Then he even starting refusing bottles. We could barely get him to eat anything. At his 2mo well baby visit his weight gain wasn't that great which is when I brought up the whole possibility of silent reflux to our ped. I know as Noah got older we had to increase his prevacid when we noticed similar behaviors starting again. I also have a really good friend who bottle-fed her children who both had severe reflux. She said once they increased her daughters medication high enough she was able to tolerate regular formula. Her son is 5yo and still takes Prevacid twice a day since his reflux is still pretty bad. Her daughter was finally weaned off at age 2.

I'm sure your GI knows best but I just thought I would just throw that out there. Like I said I am by no means an expert on EB or reflux but its one of those things that has been on my mind since you began posting about Jonah's feeding difficulties. I hope for your sake and Jonah's that his eating improves. I will continue to pray specifically for this need.

Bethany said...

I saw someone said to put vanilla flavoring in his bottle...be careful, that's 40% alcohol sometimes! Don't want to intoxicate him! :)

Also, my lil' guy always liked Avent bottles.

I think adding a couple oz of pediasure sounds like a wonderful idea!

Go East Memphis Mama said...

My son had reflux problems and we used Isomil Advance Soy. I breastfed for 5 months but I remember when I introduced that I was SO nervous but he downed it like I had been starving him all that time! He loved it and it smelled better than most formulas. Good luck! Praying for you:)

laura said...

MY friend's son finally took one of the organic ones...I can't remember which brand, but she had tried them all and he has hated them all but that one. Good luck!

Also- just to help you feel a "bit" more normal...our son (who is 15 now) spit up ALOT, ALL the time when he was a baby. Being our first, we of course tried to get all the pictures...6 weeks, 3 mos, etc. For his 3 month pictures we tried I believe 3 or 4 times beofre we gave up. Either I would feed him and he would spit up all over himself, or I would wait and he would be miserable and cranky. Then I would try to feed him there and he would be happy, but spit up again! It was miserable! And we have no picture either. My family picture taking tip for the day...as mom, ALWAYS be the one smiling and looking good. LEt the others taking the picture be responsible for making the child(ren) smile...They are always cute no matter what they are doing...us on the other hand...well, if you are like me...not so much. I always check myself first in the pictures (bad, maybe, but oh well. Like I said..they have cuteness on their side, and if they are cranky people still seem to like it! Me...not so much!) :o)
Blessings-
Laura from FL

Jen Burns said...

I had to find humor in the photo shoot part of this post, because that is exactly how it has gone for me! All except the skin part of course. And how would one find "good" tasting formula, isn't that an oxymoron? ;) I always pray for sweet Jonah. I pray for a cure first! God size miracles are never out of reach, He can... but in this time, He gives us strength. You are a testament to that!

Kim and Asa said...

Wow, so many tips and comments! If you get to mine I commend you! :)

Check into the "Littlest Heros Project" (http://www.littlestheroesproject.org/)for photos. They don't have anyone near us but it is a great organization if you have a photographer locally!

We added vanilla flavoring, strawberry syrup, switched to soft spout cups, changed to Pedisure. We've done a little of it all. Asa now takes Pedisure (and that is after a documented protein allergy, so it is very possible to outgrow it) from a soft spout sippy with out a spill resistant spout or with the feeding tube. Basically the cup drips into his mouth if he is willing to open for it!

We have a tube and it is so wonderful! We don't fight over feedings anymore. I know there are a whole other set if issues with EB and the surgery and tube. I'm so sorry the answer isn't easy. We finally just decided our lives couldn't revolve around calories, ozs, feedings and fightings. We have 3 other kids and it feedings were affecting the whole family! I pray you find peace and get some direction. Of course my deepest hope is that Jonah begins eating better on his own, without intervention.

I know one mom who avoided the tube by feeding her DD with a 2oz syringe. Mom would suck the formula up in the syringe and then the DD would open enough for the mom to give a few squirts so she could swallow. I have a ton of those syringes if you want some.

Oh how I pray the feeding struggles end for you! It is the hardest thing we battle, at least at the moment. Feeding your baby is supposed to be natural and loving. Not a fight. Not a struggle. Not a battle of wills, who new such a little person could be so strong willed! I've come to hate the formula commercials where the mom is loving holding her baby feeding them a bottle. The baby looking up at the mom so happy and content. But I digress, I didn't mean to make this about me and out struggles! Just know I feel your pain and I'm praying for you with passion!

www.caringbridge.org/visit/asawilson

Erin said...

My son is allergic to milk, eggs, and peanuts and had a rough road as an infant w/ GI issues.
When I weaned him from breastmilk we went to soy, but he lost weight to the point he qualified as "failure to thrive."
His GI then put him on Elecare, which praise God is covered by our insurance. I'm wondering if maybe your insurance would cover it as well? It is a prescription formula, though you can find it on E-bay. However, he was just over a year old at the time so he could use the Elecare Vanilla which is disgustingly, super sweet. He LOVES it! Not sure how the infant variety tastes, but your GI should be able to get you a sample to try. Anyway, mixing it to 30cal/oz worked to put weight back on for our little guy, and he's still on it at 27 months old.
I'll be praying for Jonah's eating!

thedaisygirl said...

Maybe you've already tried this, but do you think maybe he likes the sweet tea because it's cold? Have you tried giving him formula cold out of the fridge? Worth a shot anyway!

Sarah said...

My son also had MPI. We started with soy formula first...after a month switched to reg cows formula...they all taste better than Alimentum.

Have you guys checked into using carafate...to coat his throat so it doesn't hurt?

FYI do not make the formula with sweet tea...that actually can cause an electrolyte imbalance. You can spike it a little if needed...or you can give him a little sweet tea here and there, but don't mix the formula up with just sweet tea.

Erica said...

Have you tried adding a teaspoon of Karo syrup to his formula? It sweetens it up and makes a kid much more eager to drink a bad-tasting formula like Alimentum. Plus it adds some calories, which always helps. We did this in Eli's bottles for months and months, as we couldn't switch formulas because he didn't grow out of his milk protein allergy. Or I know you can buy milk flavoring from nutricia.com. Good luck. Praying!

CastingCares said...

Hi Patrice,

I was able to use the WalMart brand with several of my children. The doctor said it was just as good as the expensive brands. If you are going to switch anyway, you might give it a try. Maybe you could even save a little money.

I will continue praying for Jonah and you!

With Love,
Shannon

The Fowlers said...

We had to do Soy formula (I used Similac) b/c our son couldn't digest milk protein. It's worth a shot.

Sewconsult said...

Prayers for Jonah & his precious family.
Beckie in TN

Shosh said...

This is probably a bad idea...but what about adding some chocolate syrup? i wouldnt want to drink burnt potato water either, and it seems like a little sugar is better than not eating at all! but again...some people would probably say i should have my children taken bo social services for even suggesting it. i would do it though!!!! good luck whatever you decide to do! lots of people seem to have great advice! I think trying a regular formula is also probably a great idea.

Seth's Mommy said...

The NICU started my son on Nestle GoodStart when he was born because of some reflux and it worked great for him!

I would definitely search online for some samples of different formulas before I bought a full-sized canister!

WalMart usually has samples of their store brands on their website - but it's possible that companies will send you samples if you email them and explain your problem.

Your son is simply adorable! What a kissable little face!

~Ashlea~ said...

My son started spitting up everything he ate at about 3 weeks old. The dr changed his formula many times before I got a second opinion and found out he actually had pyloric stenosis and needed surgery to widen the opening from his stomach to his intestines. He was perfect after that.
Anyway, we had tried several different formulas and he seemed to like Enfamil GentleEase the best. It was very gentle on his stomach.
Really hope and pray you can find something better for sweet little Jonah.

Cristin said...

Could you try whole milk and mix it with a protein supplement?

Surely there is a protein supp. for baby's.

Prayers your way always!

Cathy said...

I see you've gotten some great ideas, but just wanted to add my vote for Good Start formula. It seemed much sweeter and the smell was so much more tolerable than the others.

Also, my daughter went through a phase of screaming with every bottle. She would latch on fine, but then start arching her back and screaming at us. The dr. diagnosed her with silent reflux and started her on Prevacid. That worked to constipate her, but did nothing to stop the screaming. On a whim, I used a hot needle to slightly increase the size of the holes in her bottle nipples. Turns out she was begging for a faster flow. It cured her of her eating woes. She does, though, continue to be a finicky kid. :-)

Zoodhie said...

My son had a similar problem but S26 GF (gluten free - which also worked wonders on his vomiting btw!) worked great!!!!

Brenda is SO Blessed said...

LOVE the comment about the sweet tea.
sorry you are having so much trouble with the little man eating. I keep you in my prayers

JenandAsh said...

Lurker here.

I know you're formula feeding him now so only part of this will be relevant, but I did want to pass on encouragement. My daughter is 12 months and breastfed. She has reflux issues. Cutting dairy out of my diet helped some, but I couldn't do total elimination because of my own caloric needs. So I did what I could and we used zantac for months. There was a lot of spit up...a lot, but she was gaining weight so the doctor wasn't too concerned.

Two months ago I reintroduced dairy into my diet and she tolerated it well. Three weeks ago, we started the slow transition to cow's milk in her bottles and she has tolerated it very well.

This is all to say, that yes, the protein issues do start to resolve themselves as they get older. Hopefully you'll be able to find something that he likes to eat.

Rachel said...

Okay I don't know if this is a big no-no, but when my daughter refuses to eat what I think she should I give her a sippy with apple juice and breast milk or formula. It still mostly tastes like apple juice and she drinks more. Maybe that might get him to take some more???

Rachel said...

Okay I don't know if this is a big no-no, but when my daughter refuses to eat what I think she should I give her a sippy with apple juice and breast milk or formula. It still mostly tastes like apple juice and she drinks more. Maybe that might get him to take some more???

AngelaPell1122 said...

Enfagrow Premium Lipil by the Enfamil people. It's Vanilla flavored formula. It's for ages 12-36months, but we had HUGE issues getting my daughter to take her formula and she lost weight. Her pedi okayed this formula because it has the caloric intake growing babies need, but better tasting. (6oz of prepared formula offers 170 calories, you can also add an extra scoop of power and add more calories.)
It's sold in stores now but you can also call or email the Enfamil people and tell them your problem with his eating and they'll send you a free 24oz can to try for free. (just specify you want the Vanilla flavored).
If you want anymore info on this formula, you can email me at AngelaPell@charter.net and I can give you the info off the can.

Amber Schmidt said...

Sigh... I wish I could bring you some "normal" ... I remember how sad it was to want nothing more than to be normal... then I realized... normal is an illusion. NO one is NORMAL! Seriously. Even the people I thought were "Martha" perfect... nope... not.

My heart hurts for you to hear about the feeding difficulties because I know how hard it was to get our DD to eat (and the GI scans, and the NG tube and the manometry and the upper GI so on and so forth) and I cannot imagine how much more you have to deal with.

Here is a question... have they fortified Jonah's formula? Our DD is on an elemental formula (Elecare through a g-tube) and we mix the formula to 30 calorie to help her get the calories without needing to take the volume. If I remember correctly normal baby formula is either 18 or 20 cal. Maybe next time you talk to your GI ask them about how to fortify the formula up to 22, 24 or 30 calorie. I know that some GI's don't advocate that but when it comes right down to it you do whatcha gotta do!

If you ever want to talk about formulas or puking or anything PLEASE feel free to email me. I am praying that Jonah can get some GI relief and start eating like a champ SOON!!

schmidt.amber@kentuckystudio.com

firstfruitsfarmne said...

Patrice,

I am so glad you asked for people's ideas on this issue, because for so long I have wanted to give you a tip in this area, but didn't want to seem too pushy!

I don't know any of us that would actually want to drink most of the formulas out there. Babies have taste buds, too! I may be a bit of a natural nut, but I don't believe they grow very healthy babies anyway. Have you looked into raw milk? It is much much easier to digest, especially goat's milk, and actually contains enzymes, unlike pasteurized milk. Not to mention, there's nothing quite like the taste of fresh, raw milk. There are a lot of supplements you could add to make it even more nutritious. I think it's so exciting to boost their little immune systems with natural means.

if you can't find a raw source, here is a link for powdered goat milk formula. http://www.passionatehomemaking.com/2009/11/goats-milk-formula-natural-supplementation-for-baby.html

I encourage you to research this. I know, as if you don't already have a ton on your plate! I just wonder if this couldn't be a huge answer for Jonah. OK, sorry, no pressure! I'll get off my soap box now.

Oh, wait a minute, can I crawl back on? Honey. Honey for wounds. It's incredible. Raw, local honey. Miracle. Think outside the big pharma box!

In much admiration,
Kim

The Goodman Family said...

My Addie would only eat Enfamil Lipil with Iorn...it's expensive, but you can buy it in bulk at Sam's for cheaper than you can get it at any other store. Praying for you guys!

Rebecca said...

Praying for you!

Jessica said...

We have been doing the enfamil gentlease and it doesnt smell as metallicy? as the others. It mizes up really smooth and doesnt get foamy.

I hope you guys find something that works. Praying he eats better soon!

*Mirage* said...

I'm praying for you guys!

My kids would NOT take formula. It hurt their insides and they hated the flavor. When I wasn't breastfeeding I gave both of them Meyenberg Goat Milk. Comes in powdered form like formula or you can buy it fresh by the quart in some stores, but it's more expensive that way. My kids loved the taste. To make up for the added iron that's in formula I read a Dr. Sears article that said to give PolyViSol. Dr. Sears recommends Meyenberg goat milk. So do both my kids and both my nephews and me, my sis, and my bro who all had goat milk as babies because formula was NOT a hit.
My son is my picky one and I put YoBaby in his goat milk. I have a Magic Bullet and I make a quart at a time and add a 4oz container of YoBaby vanilla or banana to it in the magic bullet so it gets mixed well. It makes the milk sweeter and flavored like banana/vanilla so my spoiled little guy has gone from being a milk-hating skinny scrawney little tiny baby to a stocky milk-addicted 1 year old. I don't know if any of this helps. I hope you can get him to eat! **HUGS**