Tuesday, October 6, 2009

sweet peas for my sweet pea

The tongue blister has drained! Thank you, God. It popped sometime during Jonah's three hour nap. Three hours! I know it's because he is feeling bad, but I was so glad he slept for his sake. The blister never did affect his ability to eat today, although he only took 16 ounces. The nutritionist didn't come today just in case he is coming down with something (she didn't want to take it to all the other kids she sees), so I'm not sure what he is weighing right now. The nurse will come later this week to get a weight. I'm worried about it. I know he's in the 50th percentile, and that y'all probably think I'm being paranoid or irrational, but I just feel the reality of an eventual g-tube looming over us. I can't shake the feeling that he's heading there.

I really thought solids would be our answer. I'm working so hard on getting him to eat them. I went out yesterday and bought him a high chair, just to try to make it more "fun." I also thought that I would be able to more easily distract him with a tray full of toys. I got him to take about an ounce of solids today, and that's great for Jonah. We're going to keep on keeping on. I can be annoyingly persistent.

Yesterday we tried peas for the first time. He did really well (by our standards) and definitely didn't hate them.

Actually in these pictures, he seems to be enjoying himself (notice, however, that Mommy was taking pictures at this point, NOT shoving green stuff down his throat, so things were drastically looking up from five seconds prior.)





But I'd also like to point out that he originally loved squash, apples, carrots, and bananas, and he is currently exercising a very healthy loathing of all of the above.
Babies. How do they inherently know they call all the shots? Sheesh.
*******************************************
On the sick front, Jonah continues to NOT run fever (Praise God!), but does still have a really weak cry and seems slightly congested. I'm keeping a close eye on him, but nothing has scared me too much at this point. I did find out that Shaina's friend who came to the fair with us on Saturday and came back to our house afterwards for Sarah's birthday celebration has come down with the flu. So I'm praying that's not it and that Jonah's flu shot has had time to kick in. Feel free to join me in that prayer. The flu is the LAST thing we need.
Ok, I'm off to bed. It's my night TO SLEEP. That's what I'm talkin' 'bout.

38 comments:

Sewconsult said...

THat's such good news, after the way the day started. You are in my thoughts & prayers.
Beckie in TN

Anonymous said...

That precious boy of yours manages to look cute regardless of what he wears - even green peas!

Praying that he stays healthy. This flu "thing" is just beginning, I fear. I teach high school and have already had lots of kids out for 5-7 days at a time. Hopefully his flu shot will protect him.

Anonymous said...

I have a picky eater who's three weeks younger than Jonah, and I can almost always get her to eat yogurt. She has mild reflux, but does fine with Yo Baby organic. It's made with whole milk, and I think the probiotics in yogurt actually help her stomach. Good luck!

Nancy said...

Oh my gosh! LOVE the pea beard! We'll continue to keep the little man in our prayers, specifically that he doesn't have the flu.

I read one of the other comments about Yo Baby. They make a new thing called "Yo Baby Meals" that has fruit & veggies mixed in. Sounds gross but its actually tasty! I haven't been able to find it anywhere but Walmart here in PA.

If you decide to try it and he likes it, let me know cuz I have a crapload of buy 2, get one free coupons that expire October 31 so there is no way I can use them all. I'd be happy to send them to you. My email is nanob@hotmail.com or Facebook me.

Island Jack's Travel said...

Try not to worry about his weight. Jonah looks very filled out ... not too thin. Johanna was always in the 100% for height and the 50th for weight. She only weighed 20 pounds at one year but she was a very healthy looking and acting baby. It was just the way God built her. We are all praying very hard that Jonah will continue to grow and improve right on schedule.

Love, Janet

Tricia said...

God is simply amazing! I will keep praying. I hope you all get a good night's sleep tonight. Blessings.

Janel Waters said...

OK - you just have to keep trying. are you warming them or serving them cold etc? I know that I read on Sam's blog that she hadn't ever had anything cold, but with my mouth blisters/sores the COLDER the better! I know that it might be difficult on his stomach, but you might want to try.

Also - please, please, please don't feel like a g-tube is a MUST. I'm 35, no g-tube. I have issues, I had my esophogus replaced, but that didn't even happen until I was 9. I know that every EB baby/kid is different but don't buy into that g-tube yet!!

Have you had a barium swallow done on him yet? Its not invasive at all - drink some crap, take some x-rays and see if he is having an issue with his esophagus? just an idea/suggestion. I'm probably going to have to have another one done soon too.

Can you describe specifically where he has a problem with the solids. Is it getting it in his mouth, does he spit it out, does he gag on it... etc... might help us come up with some other ideas to try.

I feel for ya!! I totally get the puking thing though - M did that until her first birthday and then it just stopped. (underdeveloped stomach muscles).

Anyway - email me if you want to about the g-tube etc...

Janel

Rebecca said...

You know, when I read your earlier post asking for prayers about Jonah's tongue blister and that you knew it would eventually get bigger, I almost commented, nope, we will pray it away for Jonah, but I didn't want to give you a hope that might not be real.

I am so glad my thought was right!

I am learning about EB through you and Jonah - but I do know about special needs kiddos and the one thing I know is that ALL are individual and different - no matter what the 'usual' is. We will keep praying - and you keep the faith and Jonah will be G-tube FREE!

elleauvil said...

Hey sweet Patrice- I am praying for all of you to avoid flu. Now, I know nothing about Jonah's nutritional needs, but as a mom with really skinny high metabolism kids, I did make their own baby food, and everything from veggies to ground chicken and veal (which were loaded with fat) I used formula instead of water to beef up the calories they got. It helps. I have not read the previous post to see if this has been suggested, but as organic, baby food making mom, it worked beautifully for me! My aunt is a neurobiologist, and she felt very strongly that they get enough fat to lay down their neural pathways (she called it "malinating")- we did not take them off of whole milk until age 4 on her recommendation. The formula/breast milk as liquid in the solids really helped to beef up the fat and calorie content of what they were getting. We are praying for you always- he is absolutely precious. Thank you for continuing to post.

Kat and Crew said...

He's still as cute as ever! My kids also didn't care for baby food. The fight each day to get food down is grooling. Sometimes TV would be the best distractor for them.

Stacy aka Fahiima said...

Try to get him to try the avocado again. Its such a great weight-gaining food. You could also try supplementing with virgin coconut oil.

This is me.. said...

Worrying is our job & it never stops. Praying for weight gain, no blisters and no g-tube in CA..

Hoping your Wednesday is better than today...

Sincerely, Stephnie
http://sincerelystephnie.blogspot.com/

Laura A said...

Love that sweet pea's face!

So sorry about the blister - praise God that it drained. Will pray for God's hedge of protection around him, to keep him from illness. (And you and Matt, too!)

As always, love and prayers from TX!
Laura

mollydianeh said...

I'm praying for your little sweet pea! Get some rest "sister!"

In His love, Mollydiane

*Mirage* said...

Oh I agree with the YoBaby yogurt comment! My son had bad issues with reflux and his bowels so I started him on solids a bit early to help him out with that. He hated everything it seemed. I finally tried YoBaby yogurt and he gobbled it up like he was starving. It didn't help the reflux but it fixed his bowel problems. I started him on it at like 4 months I think it was. I eventually had to mix the other fruits and veggies into the yobaby to get him to eat them and slowly decrease the yogurt and up the fruit/veggie content. :/

{Oh but on a side note, though YoBaby does have drastically less sugar than regular yogurt, it's still sugar and sugar lowers the immune system, even the sugar in fruit does. So best hold off on starting the yogurt until he's not sick anymore.}

I'm so glad Jonah was liking his peas! I'll be saying some extra prayers for him that he gets well ASAP and nobody else comes down with it!

Alison said...

Hi Patrice - even though I hardly ever leave a comment I read your blog everyday and LOVE it.

Anyway, I just really wanted to encourage you to persevere with feeding Jonah orally. My daughter is 100% g-tube fed, and I really feel now that if I had persevered more with eating and drinking that she would be at least able to eat something! I don't think it matters what you feed him, or how, just keep offering food so that as he grows up he knows how to eat, and hopefully in time he will learn to enjoy it.

You are doing an amazing job with him - he is gorgeous - even with a pea beard!

Anonymous said...

I think the Green should be Jonah's new color, it really makes his blue eyes pop!
prayers always,
2shoes

Anonymous said...

I know that he seems young, but have you considered trying Jonah on a sippy cup? Not for all his feedings but just to see if he does better if he does not have a nipple in the back of his mouth (where that stupid blister is!). There are so many different kinds on the market that are almost a cross between a nipple and a regular (old fashioned) sippy cup. It might be worth a try and your gonna need to get some pretty soon anyway!
Jennifer E.

Anonymous said...

Hope that he is feeling better! Random thought have you tried feeding him while he is enjoying a favorite TV show? While a horrible habit, I know, a great distraction that I use when I need to get my daughter to eat. She can be very picky...yes they learn too young that they call all of the shots!!

Erika said...

i love love love that last picture!!! such an expressive face. love it. will be praying he starts eating solids better, for sure. it's so hard at this age. with or without extra issues to deal with! beautiful boy!

Sabrina said...

Yeah! Thanks for the cutie patootie pictures. You are a much better mommy blogger than I am. Praying that he doesn't feel any worse and doesn't get the flu. I was curious and feel free to ignore me if you have addressed this before or don't feel like addressing it, how do you clean him up with his fragile skin? Do you have special cloths? My son is crazy when he eats and baby food was the worst. I don't think I could ever understand what you go through daily for your sweet baby. You are amazing!

Anonymous said...

I saw someone mention a sippy cup and just wanted to throw out that my son had terrible AR...so much so that he would cry when he saw the bottle b/c he already knew that it meant pain was coming. When he was around 5-6 months we started getting him used to a sippy cup - we just had to take the stopper out of them so it would be more of a free flowing cup than actually haveing to pull it out. It took another month or two before he figured out the sucking motion for a cup was different and then we replaced the stoppers. Anyway, it allowed us to get a little more liquid in him than with just the bottle.

As for eatting, we bought a small TV for the kitchen so that we had some good distraction when we were feeding him. Amazing what you can sneak in their mouth when they are tuned in on TV. I can't tell you how many times replayed The Wiggles DVD's to get him to eat ~ I sang them in my SLEEP! But, for the most part, it helped! Just a thought!

~Dana in MS

Crystal in IL said...

In the beginning I was so hopeful my daughter wouldn't need a g-tube and Nissan but it became painfully clear that she just had to have one. I have to tell you it was the BEST decision we ever made. My husband now thinks all kids should come with a g-tube. No more struggling with weight gain, meds are a snap to give, and if she gets a cold she recovers faster than any of the rest of the family because we can keep her hydrated. We are even making our own baby food and are pushing it through the tube so she is getting all the benifits of real food :) She does oral eat now but we don't stress about it. It is far more important that her nutrition is being met and she is growing well. She will eat and be independant of the tube one day but right now this is what she needs and us too. Trust me there is such a peace of mind to be had when you know your child is being feed well. I wish we could sit down and chat. Although our children have very different medical conditions they have alot in common on the nutritional front. I just wanted to let you know that the tube is not the monster in the room rather the saving grace for all of us.

The Slocum Family said...

I know you get SO many recommendations, but I thought I would let you know what worked at our house. It couldn't hurt to try!

When doing oatmeal and sweet potatoes I would add a pinch of brown sugar or even sugar to sweeten it. Also with veggies, I would add a TINY bit of salt just to take the edge off. It made a world of difference with our youngest daughter!

Hope this helps!!

Joye said...

I have to agree with "Crystal in IL". Same thing with my little man ... he's had the g-tube/Nissan since he was 7 weeks old, and as much as I fought it at first, now I sing its praises!

Sure, no mother wants a tube coming out of her child's belly, but there are some advantages. Crystal mentioned many of the ones that I've encountered, and there are even some that just make life a little easier.

Be encouraged that he is interested in food and taking a good bit by mouth, though! He looks like a strong little 7 month old to me!

Crystal -- if you read this comment, I'd love to chat with you, too!

Karen said...

I had a puker who had to go on solids sooner rather than later too. I couldn't get him to eat anything! I finally called my father and he told me to try pears. It worked, he loved them! Then we moved on to other stuff and he's been a great eater ever since. 11 years later. :-)

Wanda Wilkinson said...

I bet if you put Blues DVD in for him you could fee Jonah almost anything..that picture you posted last week with him watching Blues..he was oblivious to the world..just like most males when they are tuned in to TV everything else can pass them by.

Wanted to let you know that I posted on Katherine's blog that if need to win the $100.00 gift card from Target so I can use it for Jonah..he definitely has my heart.

Can Jonah have finger foods (cheerios, cheese cut in little cubes)? Any my kids did go through a time before they turned a year old that they lost some weight (my dgt was in the 25% for her age) but the pediatrician said it was because they became more active. I know you worry about Jonah, that's a mamma's job.

We will keep up the praying for a big appetite and healing of blisters..

You, Matt & Jonah are in my prayers thoroughout the day.

Anonymous said...

Have you tried Peaches ?
That was always the fail-safe with my daughter - she LOVED the sweetness.

Continuing to Pray In Alabama

Anonymous said...

I am a speech pathologist who treats children with feeding disorders. There are several products for adding calories without adding much volume. Benecalorie, Duocal and MCT oil all can be added to baby foods and bottle with recommendations from your peditrician or nutritionist. I agree with a previous post regarding the benefits of g-tubes. I have many patients with g-tubes who enjoy eating by mouth because we have made it a positive experience, but not required them to have so much of the volume they may need for calories. You can continue to give him foods and drink if he has a g-tube but he will be less stressed about amounts or if he doesn't finish because you can give him the remainder through a tube. They are not a bad thing! Dr. Keith E. Williams at Penn State is a wonderful resource for feeding issues. A speech pathologist or occupational therapist can specialize in feeding therapy and help through some of these issues now so sweet Jonah doesn't begin to associate feeding with negative feelings or pain. I will continue to send prayers for this little man!

Anonymous said...

Patrice - I've been praying for Jonah and reading your blog for quite a while now. Blessings to you and yours. Just want to offer a suggestion - you may have already tried or it's just not something you want to do but....Do you ever sit Jonah on your or hubby's lap while eating yourselves? If so, is he even a little interested in your food? Sometimes just a dollop of thinned mashed potatoes on your finger that go into his mouth make it much more yummy. I would try different foods, but more in their natural state. Something I was eating also. You know how everyone's food looks/tastes better than yours!! Also, I would often mix the veges and fruits together. No, it hasn't affected how my kids eat today!! What about yogurt? You can get non-dairy yogurt. Will continue to pray for you and yours. Michele

Meg said...

Hey!

I have been reading your blog since March...before my little boy was born. I remember thinking and telling my husband after seeing Jonah..."I hope our little boy is that cute!" Jonah is the cutest baby! My hubby and I just delight over your photos and videos of Jonah, we laugh so hard at his little personality :) He has a big sense of humor! What a blessing :)

Anyway, I just had to post this time...I don't know if you've tried playing a little baby einstein (or whatever) while Jonah is in his highchair, but that just may work. A friends little boy had reflux and that is THE only way they could get him to eat solids. They had to set up a whole station, get him really zoned out with some baby einstein, and then proceed to feed him while he was nice and zoned :)

My Caleb has severe reflux (GERD) and we've been through several med changes. I look forward to solids one day, but will probably have to do the distaction method too! :)

lifelaughsandlove said...

I'll keep praying that Jonah continues to get the nutrition he needs and that you won't have to do anything drastic. We already know God has proven that he can keep Jonah's weight right where it needs to be, even if it seems like he is not eating enough. The pictures of him with the peas all over his face are so cute :) Have you tried any of the dinners for him? Like the ones with meats? My little guy loves the ones that have a meat in them. I'm not sure if Jonah is old enough for those or not, though.

This is such a difficult time of year with everything that goes around. I will pray Jonah stays healthy. Just this morning I had to take my little guy in to the Dr's office and saw a whole family wearing masks and got a little freaked out about what bugs were lurking in that office!

~Amy

Rebecca said...

Somehow stumbled upon your site and have read about your precious little angel. I pray that you all find answers for your little guy. He's a cutie pie.

Anonymous said...

I have never commented, but have been a loyal reader of your blog since shortly before Jonah's birth.
I am an early interventionist, and I work with special needs, medically fragile, and "high risk" infants through preschool aged children - many of them have feeding tubes, and many of them require very hard work when it comes to feeding aversions related to their health conditions, sensory integration issues, and textural preferences with food.

My thoughts are that he very well may experience discomfort inside his mouth and throat due to texture and or/acid composition in the solids he has been introduced to. We don't want him to associate solids with pain or he will NEVER want to take them! Applesauce is rather rough in texture, as is oatmeal - stay away from pureed foods that are gritty, like pears. Prunes, sweet potatoes, peaches, and baby food banana are all very smooth and might make it down his throat with less of a fuss. Also, absolutely start him on YoBaby yogurts! The live bacteria will be great for his gut, the texture is silky smooth going down.

Know that many babys "skip" the pureed baby foods altogether and go right to TEENY TINY pieces of table food - so what Jonah is exhibiting now is developmentally normal. Mime the chewing motion to him every time you go to put something in his mouth - make it a BIG deal - and if he seems to start to do the "chew" even when you offer him pureed stuff, you can try him on smooth tofu, overcooked pasta, etc.

Sandy said...

Lovin that boy's green mouth! He seems to be enjoying it too!

Melissa said...

To stinking CUTE!!

Amber Schmidt said...

I read and pray for Jonah daily and LOVE seeing pics. I am praying that he does not need a g-tube but KNOWING where I have been as a mother and knowing what a RELIEF it is to have a g-tube.

I don't know if you have seen a g-tube (mic-key) in action but there is no actual TUBE protruding from the child's body. It is a low profile "button" that has an "open and close" valve. The tubing to the pump hooks up and locks when turned 1/2 turn... then unlocks by reversing that.

For our daughter, she was not even ON the growth chart due to hearth issues, being born with no anus, 1/6 of her upper intestine is dead, reflux, neurological issues etc. When she was 8 weeks she would just SCREAM in pain when she ate the 1/2 oz we could get down and then I SWEAR she puked UP more than we put down. We were admitted and given an NG tube. She kept that for 10 months. It was SUCH a welcome relief to be ABLE to feed her without pain, fighting, etc. I actually CRIED tears of joy when feeding her (in her peaceful sleep) with the tube the first time. It did not stop all of the puking but we have learned our limits with the tube. Her overall capacity of her stomach is 250 ml over 1 hour period. You cannot do ANY more or it all comes back up.

Kyleigh had her G-tube (mic key) placed at 18 months. We opted AGAINST the Nissen due to other circumstance because you can do the mic-key surgery with a simple laproscopy and then nissen is invasive.

She is now almost 3.5 and STILL cannot consume more than 100 calories a day by mouth. We have avoided NUMEROUS hospital admissions and other issues by having the ability to "force" feed fluids, meds, and formula (elecare) through the tube. Today she feeds 95% through the tube and I can say without a shadow of a doubt, it is the BEST thing we have EVER EVER done for her, for ourselves, for our other kids. We hook Ky up to the pump, set it to our settings and she feeds through the night to get her 1000 calories,wakes up in the AM and goes tube free all day. We encourage her to eat but we do not force. A tube CAN be a welcomed friend so please don't be too scared!

Hugs to you... if you ever want to chat about the tube or have ?? please feel free to email me!!

Meim said...

I LOVE these pictures! It looks like he just ate the Grinch!