nine months today

Hello World!



Today I turned nine months old. Pretty cool, huh? I have a pretty bad boo boo lip today. So since you guys are so great at praying, Mommy says it would be really wonderful if you could throw in a few for that too.

Mommy told me that today I have been as long out of the belly as I was in the belly. I don't really remember belly time, but my nine months here have been pretty great.

I currently weigh 18 pounds and 13 ounces. Mommy's not sure how long I am, but she says I sure seem long. She's actually getting a little worried because I'm outgrowing my bouncy chair and I can't sit up completely on my own yet. She says I better hurry it up already. I just looked at her real cute as if to say, "Mommy, do you still think you actually call the shots around here?" Mommy is so proud of the way I've been eating lately (except for yesterday when I only ate 14 ounces... YIKES!) and my weight gain. Last week Mom started giving me Carnation Good Start formula mixed with Vanilla Pediasure, and man, oh man, that stuff is SO much better than stinky Alimentum. Mommy doesn't even mind when I spit up now, because it just smells like I put on some vanilla perfume. Ahem, cologne, I mean. And most of the time we can actually call them "spit-ups" because although I have a round of gushers every now and then, it only seems to happen every seven to ten days now. Mom is so happy, and I agree. It hurts my throat to throw up like that. I'm doing much better now.

My favorite sounds to make are nigh-nigh, ma-ma, da-da (even though I don't know what they mean yet), a growling sound, kind of a hacking sound (I can't really explain it), and I LOVE to blow raspberries. I stick my tongue out and slobber big time. Mom and Dad think it's really funny, but then Mommy gets slightly irritated because I soak the front of my outfit. I've also started to yell and scream in delight, and I love the sound of my high-pitched squeal. That's right, I'm officially a screamer.

I am all smiles and laughs these days. See?

Unless I'm tired or The Big People are trying to feed me while I'm awake (the nerve), I rarely cry. I love to play, and I've started bobbing up and down, and if Mom helps me sit on my knees, I like to rock back and forth. I can roll over from my back to tummy now, although I still get my arm stuck a lot. And I've taken my arm flapping and leg kicking to a whole new level these last couple weeks. Mommy and Daddy thought I was so funny at the surgeon's appointment the other day because I was lying on the examination table on the roll of paper they pull over the bed, and I just kicked LIKE CRAZY because I loved the sound of the paper rustling. When sombody's holding me upright, I flap and kick so much, it looks like I'm trying to run across the room. And I love to kick my legs in my bath water, soak up lots of water in my feet bandages (I still get bathed with my limbs wrapped), and then I put my foot up on mom's behind while she's sitting on the edge of the tub bathing me. I soak her whole bum. I think it's so funny.

I'm averaging around 25 to 30 ounces of formula these days but I'm still not interested in solids. Although I do show interest in what The Big People are eating, I don't want more than about three little tastes. And don't even think about putting something pureed on a spoon anywhere near my face. I'll tell you where you can stick your puree, you little... ahem.

My favorite toys are my wonder pets my Aunt Katherine sent me (I especially love Tuck), my "Ears Hang Low" dog, my pinwheel The Big People use to distract me during dressing change, my crinkly elephant, and my little stuffed football with a handle on it. My favorite song to calm me down is "I Come to the Garden Alone," but I think it's really funny when Dad sings, "It's Bananas B-A-N-A-N-A-S." Come on, folks. Can't a kid get a little "Wheels on the Bus" once in a while? I love when Mommy reads me books, and my favorite number is 12. Just kidding about that last part. I don't even know what a number is, although Mom says I'm number one.

I'm really great at picking up and shaking things, and Mommy and Daddy think I'm starting to throw/drop things on purpose these last couple days. I am super interested in watching my hand do a waving open and close sort of motion, although I'm not associating it with "Hi" or "Bye" yet.

I love patting things and especially people, although the patting is quickly becoming slapping. I love touching hands and faces and reaching up to touch The Big People, especially my Daddy.

I love getting kisses, zerberts, and when Mommy eats my ears, face, and neck.

I'm starting to really laugh a lot more these days at that kind of stuff. Mommy kept me laughing a long time on the way to Granny and Grandaddy's by going, "Ma-Ma-Ma-DADDY" or "Da-Da-Da-MOMMY" in the car. See how she switched it up on me at the last minute? Hi-Larious.

Anyway, I'm doing just great these days, and God is really blessing me with mostly clear skin (except for my hands, face, and occasional spotty blisters), and a bigger appetite. So far I've avoided a g-tube, and Mom and Dad hope we can keep it that way! I wouldn't mind staying out of the hospital myself. Man, I don't need no stinkin g-tube. I'll tell you where you can stick your... ahem.

Mom and Dad love me so much and are enjoying all my firsts I've had lately. Halloween, Thanksgiving, and they're starting to talk about something they call Christmas. Mommy said something about a fat guy in a red suit, big socks on the mantle and lots and lots of presents. She also said something about great food that I should try, but all I heard at that point was wah-wah-wah.

God is taking such good care of me, and Mommy and Daddy say He loves me so much. All I know is that I'm loved A LOT by LOTS of people, and Mom says that's only a little bit compared to how God loves me. I don't really believe that I could be loved anymore, but Mom says it's true. She says that so many people are praying for me, and everyday she can see that God is answering those prayers. I'm so blessed. I can't wait to spend WAY more time out of the belly. It seems like a pretty rockin' place to be. It's bananas. B-A-N-A-N-A-S. Enough of all this. I have the sudden urge to play with my Daddy. Catch you guys on the flip side.

incredibly thankful

Dear Jonah,

I just wanted to write this letter for you to someday read to let you know how very, very thankful I am to have you.

You amaze us every day with your strength, bravery, and resilience. People just can't believe it the first time they meet you and see how smiley and happy you are almost all the time. They think you have "problems," but you sure seem oblivious. You are one sweet child. And I'm not just saying that because I'm your mom and I have to. Really, you are so special.

You are beautiful, content, smart, and you crack me up with your new expressions and funny sounds every day. You have the greatest personality.

And I have so many things to be thankful for this Thanksgiving Day: God, Jesus, our friends, family, our church family, all the wonderful people who help us with dressing change, our house, our warms beds and showers, food... the list goes on and on.

But I just want you to know that I am so especially thankful for you. You have changed my life 100% for the better. I love you more than I could ever even put into words, and I choke up most times when I have to express out loud how I love you. It's just too overwhelming. You make my days brighter, and I can't imagine my life without you. I'd never want to go back to how it was before. You are so incredibly BEYOND worth it.

Last year, when I wrote some things I was thankful for, this is what I wrote about you: "For our new baby boy who is renewing us every day, for his kicks and movements, and for the excitement and hope he gives us for tomorrow." And you weren't even here yet! But man, oh man, the excitement and hope you have given us. Actually, you have renewed the definition of hope for me. I pray and fast for a miracle for you, but really, YOU are the miracle, sweet boy. You have overcome so much, so much more than anybody ever thought you could.

And I'm so thankful for the hope you've given us. I can't wait to see how God continues to use you to give hope to others too. He's holding you up, Jonah. Do you know that? I see you soaring like an eagle every day, and I know it is God who is sustaining you. He is healing you. He is growing you. He is the reason you live and breathe.

And it is HE who gave you to me. And for that I could never say thank you enough. Words just sound cheap.

You are the love of my life, my hero, my best friend. And God put us together. Pretty amazing, huh? I can't wait to watch you grow and change and become the wonderful man God is shaping you into.

He has already begun such a wonderful work in you, Jonah. I'm so excited to see what more He will do to, for, and through you. My prayer for you is that you will always be open to that work, and that you will glorify Him through your storms. You will have many, Baby Jonut, but I think you will see how He brings you through time and time again, and you will know that you are eternally, inexplicably, unconditionally, infinitely loved. And you will be amazed. I know I am.

Thank you for being my son. You are perfect. Happy First Thanksgiving, Jonah.

I love you with all my heart,
Mommy

look at that weight gain

I fully realize that my posts as of late are pretty factual and not so exciting, but I hope that life will get a little more stable, and I can get back to the fun stuff soon.

But tonight...

I'm tired. I've spent most of today doing laundry and packing, and I have much more packing to do tomorrow, so I'm heading to bed. Remember this? Yeah, it's like that.

Happy news:
- Between Thursday afternoon and this morning (4 1/2 days), Jonah gained 10 ounces.
- He ate 27 ounces today (really 31, but with another 4-5 ounce gusher).
- Kathryn kept Jonah so I could go get a haircut today. And I love it. Isn't it crazy how something as little as a haircut can give you such a boost?

I don't know how frequent my posts will be over the next few days, but I'll definitely try to get Jonah's nine month post up on Friday. In the meantime, I hope everybody has a wonderful Thanksgiving.

photos from sunday

Here are a few pics from Sunday at my Maw Maw's house. She lives in Dobson, and we love hanging out and being outside. I love the country.

Here's the view from their driveway.


My brother, his wife, and their two cuties.



All the kids.



Our little family.



Siblings.



Jonah ate 28 ounces today. Well, he actually took down 32.3 ounces, but he gushed up about four ounces at his 4:00 feeding. He hadn't had a gusher in 11 days, so it didn't bother me too much (it also didn't get on his bandages which helps me not be bothered). I think he's definitely outgrowing it. I'll take a couple days of gushers if we can have an 11 day stretch without any.

Twenty-eight ounces. Wow. Just wow.

appointment update

Our appointments went well today. I wasn't told a lot that I didn't already know since we've been thinking, planning, and researching for a while now, but it was still beneficial to meet with both the surgeon (who we met when Jonah was in the NICU) and the anesthesiologist.

After hearing how well he's eating, the surgeon said that, due to potential complications with any g-tube and especially having extra risks with an EB child, he would wait. Matt agrees. I'm still on the fence, but it's something I certainly don't want to do until Matt and I BOTH feel like it's time. Jonah is eating great these last few days, and we want to give it time to make sure he's not trying to turn things around on his own. If only he would eat when awake... I would feel completely different about things. For now it seems that he only eats under "optimal" conditions (sleepy but not overly tired, no distraction, mom or dad doing the feeding etc). I guess this Thanksgiving trip away from home will be a good test to see how he does out of his normal routine.

Although there are things about the g-tube that sound heavenly (having a way to give meds, not worrying about being home every time he's ready to sleep, having a back-up for when his mouth hurts, not stressing if he won't eat), there are still the risks of infection, the tube leaking, breakdown around the site, and, of course, the risk of intubation. It's a lot to weigh, and makes the decision very difficult. Just when I think we've reached that moment where we HAVE to decide, Jonah decides to start eating again. And I'm not saying this is a fluke, but I'm under no false impression that we're home free. I know my Jonah. He likes to shake things up. Just when you think it's so bad you're going to have to take drastic measures, he starts doing better. And just when you think you've had a breakthrough and things are going great, it'll all start going downhill again.

So... again... it's wait and see.

But, who knows, maybe this is the miracle we've been praying for. Who am I to put God in a box?

Speaking of not putting God in any boxes, guess who's already eaten 21 ounces today, you know, before 2 pm?

quick update

Very quick because I want a good night's sleep (and it's my night to get up with Baby Jo).

Yesterday he ate 25.6 oz!

Today he ate 20.8 oz, but we went up to my Maw-Maw's house for an early Thanksgiving, so we missed a feeding. He fell asleep in the car on the way up there, and once he woke up, refused to eat. So he didn't eat between 8:45am and 2:45pm. I guess it's things like that that make me feel like the g-tube is a good idea. If he's still only eating when he sleeps, that's a problem. We need a backup for when things happen like they did today and he naps in the car. He should be able to nap when he wants without us having to worry about losing a feeding.

We have our appointments with the pediatric surgeon and the anesthesiologist tomorrow starting at 10:00am. I'm nervous but ready to get this process started. The sooner it gets started, the sooner we can get it over with.

At this point, we are planning to reschedule the surgery until after Thanksgiving since Jonah is continuing to eat well. But I'm hoping we can do it the week after. I'm tired of having to think about it.

woohoo!!!

Let's cut straight to it - Jonah ate 25.8 ounces today. That's right. Twenty-five point eight. I'm blown away. He took all of his bottles without a fight, and started out with his eyes open (very drowsy but eyes open) for all of them. I actually enjoyed feeding my child today. It was relaxing and wonderful. And in the last two days, we've gone from a two and a half hour scream-fest maybe-one-ounce nighttime routine to a twenty to thirty minute five ounce routine. We could get used to this. And Jonah, once again, was in an excellent mood all day. Amazing how good you can feel when you have a full belly.

Here are some photos from the last couple days.



I put Jonah down on his back to play and went in the kitchen to switch the laundry. When I came back, maybe two minutes later, this is how I found him.


Just a swangin' (with milky lips... that's what I like to see).



Because he had eaten so well and I knew I wouldn't need to try to feed him again for at least three hours, we were able to venture out. We didn't go out in the car (don't get crazy), but we did go for a nice, long stroll all through the neighborhood.

And Jonah was just as happy as could be. See?

It was another great day!

And I just want you guys to know that I attribute this drastic change completely to answered prayer. There is no other explanation for how well he's eating right now. It's as if some sort of switch has flipped for him. I'm so happy for him... and for me. :) I'm not saying he will never backslide again. I'm not saying he doesn't need a g-tube (we still plan to carry through with that plan). But I am saying that when we were about at our breaking point, when we were on the brink of desperation, God lifted Jonah out of the pit. Again. God is faithful. Over and over and over again. And somehow, it keeps surprising me.

Thank you, Father.

And, Jonah, you go on with your bad self. I love you, sweet boy.

oh happy day

We have had an awesome day today. Jonah ate 22.6 ounces, and all without a fight. I still had to get him semi-asleep first, but he pretty steadily gulped it down... almost like he wanted it. Twenty-two point six ounces! Praise God!

And then he took a nap for two hours and fifteen minutes!

And then Matt came home and I got to go to Target (true it was for formula and Pediasure, but who cares)!

It has been an awesome day!

Our appointments have been moved up. We have our clinic appointment with the surgeon on Monday at 10:00 am, and we will meet with the anesthesiologist afterwards.

Jonah's surgery is scheduled for Wednesday, but if he continues eating okay, we'll postpone it until after Thanksgiving. Of course Jonah is our priority, so if he starts having really low days again, Wednesday it will be. But man, I'd love to be able to wait until after Thanksgiving. I could really use a holiday. I need to get out of this house and eat lots of carbs and spend time with family. We are supposed to head to Florence on Wednesday night, and Matt's sister and her family are flying down from NY, AND all the extended family (from Florida and Alabama) are coming too. And we'd love to be there.

But if Jonah needs a g-tube on Wednesday, so it goes. We spent Easter in the hospital. We can do Thanksgiving there too if we need to. Unfortunately the hospital is on major flu precautions, so only Matt and I will even be allowed on the Pediatric Floor. That will be weird. When we were in the NICU, our friends and family basically took over the waiting room. It was ridiculously wonderful. :)

Regardless, I think Matt and I have decided that we are moving forward with the g-tube. He's just too inconsistent, and we feel it's what's best for him. It will help Jonah be better nourished and more consistently so. It will help me be a better mother. And it will provide a way to give Jonah the medicines and vitamins he needs without making him hate food and liquid coming toward his mouth. I also think it's smart to have a "back-up" for when he's in pain and can't eat. I think it's the right decision.

But it's still scary, and it still sucks. It just does.

So now I'm praying for wisdom as to the when of it all. I'm praying for wise, careful, and humble doctors. I'm praying for Jonah's sweet trachea, for no damage, for smooth sailing.

And I'm praying for many, many, many more happy days.

jonah update

Update/Clarification:

Just wanted to clarify that Matt and I have decided (unless something comes up in our appointments here) that we will have Jonah's surgery done here, at Brenner's. What I meant was that all of the surgical team here will be speaking (through email and by phone) to all the specialists in Cincy so they can make sure they are doing everything the EB-friendly way and so that it will be as safe as possible. I love our doctors here, and I have full confidence in their ability to follow directions and trust that they are humble enough to seek those out. So, for now, we won't be heading out of town, but thanks to all of you who offered food, your homes, and company to us in Cincy. I'm sure we'll be up there within the next year so Jonah can visit the EB Clinic and see all the specialists.

And an update on his hiney: It's still very raw and very sore. Sometimes he cries when I just pick him up and am holding him on his bottom, even through his big ol' diaper. I'm coating a Vaseline gauze in Aquaphor, then Desitin, then antibiotic ointment and changing it out with every diaper change. I hope this helps keep the urine off of his raw spot and the Desitin (Zinc Oxide) aids in healing. I even put Desitin on sores on his limbs and feet. It's good stuff. (I like to get the Up and Up brand because it's so much cheaper, but unfortunately it smells like dead fish... I digress.) Anyway, he slept pretty well last night (but only took two ounces overnight... we're not waking him up anymore. He wakes up on his own), and he woke up kind of fussy this morning. First feeding coming up. It makes me tired just thinking about it.
*********************************

This will be super-quick because I'm feeling the need to rest tonight, and Jonah is refusing to go to sleep.

He's eaten 15 ounces today, and I don't figure we'll get anymore in him. The first half of the day went well, but we've really fought the second half.

Fifteen is better but still not enough.

Dr. S (Jonah's GI doctor) emailed this morning, and he's working on getting the right people in place and getting everyone in touch with the folks in Cincy. I think he's also working on getting our appointments moved up. The best thing in his email was that whatever day we end up meeting with the surgeon, he's also going to set it up to where we can meet, in person, with the anesthesiologist too. That is a very good thing.

Okay, that's it for me tonight. Still feeling low, but not quite as desperate as I did yesterday. Jonah is in a great mood and completely oblivious to the fact that he should be starving.

Crazy kid.

and the winner is...

And the winner of the Cloth Diaper Giveaway from SerwaChic is...

COMMENT NUMBER 236

From Random.org:

Random Integer Generator
Here are your random numbers:236
Timestamp: 2009-11-18 20:24:22 UTC

That would be Amanda Sikes!

Please email me and let me know your address and those gift certificates will be on their way.

Yay! Hooray! Fun giveaway!

Thanks everyone. My first giveaway I deem a success. And you didn't leave me hangin', I don't feel like a loser, and all is right with the world.

Well, not really, but you get the idea. (Jonah is eating a little better today. I'll post an update later today hopefully.)

not good

Things are not looking good for Jonah on the eating front. Only 11.5 ounces today, and only one of those was a decent bottle. All the others were no more than an ounce. Some he refused altogether.

I have been in tears all day. I'm so frustrated I can barely stand it.

I called the pediatrician's office today, explained what's going on, and Dr. B called me back within ten minutes. I think she reads the blog so already kind of knew what was going on. She said, "How are you doing?" I started sobbing and told her I was losing it. She said, "It's time. You know that, don't you?"

And I do know. I don't think we can put if off any longer. I've tried everything. He's just not taking it. We're all going crazy. The back of his ears are bloody and raw because of how he flings himself back, twists himself around, and fights the bottle. He won't eat solids. He won't take a sippy cup. He won't take it from a syringe. He won't take it from a regular cup after about four sips. I can't quit after thirty minutes, because it takes me thirty minutes just to get him drowsy enough to even have a chance. And even if I stop and try two hours later, it's the same thing. He doesn't know what hungry means.

It's time. And my heart is breaking.

It's not the g-tube itself. I think it would definitely be an improvement. It's the intubation that terrifies me. I'm so afraid that it will cause blistering, scarring, and will lead to a trach. And that's a whole new set of issues.

We have an appointment next Wednesday with the surgeon. Honestly, I don't know if we'll be able to wait that long to get the process started. I'm at the point of counting wet diapers just to make sure he's staying hydrated.

Every day like this feels like a million hours.

I'm just so tired. And poor Jonah. I can't even imagine how it is for him. He's got to be hungry, but just doesn't know how to feel better. He's not getting any of the extra vitamins and stuff I'm supposed to be giving him. And almost his whole right butt cheek is raw. He screams and cries in pain every time he has a poopy diaper. And I'm there. Causing the pain. Shoving the bottle. Being the bad guy. Always.

Sometimes it's just too much.

eating update

Update:

I got reprimanded for no photos, so here is a cute one from Sunday. Jonah's not smiling, but I still was at this point, so really, that's saying a lot.

Jonah only had 17 ounces today, but that's up two from yesterday.

Pray, pray, pray.

So this is the regimen we were on:

- 27 calorie per ounce Alimentum formula
- Rice in each bottle (1 Tsp. per 4 ounces)
- 15 mg of protein a day (some kind of non-whey collagen of some sort since we were trying to avoid whey protein)
- Polyvisol w/ iron, Vit C, and Zinc supplements
- Medicines: 15 mg Prevacid a day, Carafate, Atarax

Today I got (by popular demand) the Good Start Gentle Plus. I'm doing anywhere from four to five ounces of that mixed with one to two ounces of Vanilla Pediasure. Right now I'm just mixing the milk per the can directions, but if he can handle it okay, we'll need to move up to the 27 calorie mixture (.7 scoops per ounce instead of .5). Still adding the rice cereal and all supplements and meds. I'm trying to give as many meds as I can by syringe (to keep from contaminating his bottles), but you just can't force that Polyvisol down. So gross.

We've tried two bottles with the new formula/Pediasure. His 4:00 bottle was a complete success! Six ounces in about 20 minutes.

Tonight's bottle was a failure. 70 cc's (about 2 1/2 ounces) in an hour and a half.

He won't eat when he's awake and is too tired to eat when he's asleep. Grrr.

Anyway, there's the update. I'm really hoping this much sweeter, much better tasting (yes, I tried it) concoction will make him like eating again.

Oh yeah, and I bought a couple of those paci (Phillip M., that one's for you) net things that you can put the solids in that they can suck on. I'm going to try something in that tomorrow (thickened yogurt maybe?) to see if he'll like that better than a spoon coming at his mouth.

Thanks for praying and caring so much. Your comments were so helpful.
***********************************

Don't miss out on the giveaway below.

cloth diaper giveaway... for real this time

So this, my friends, is the GIVEAWAY.

My friend, Jen, is a working mom who has recently started her own cloth diapering business, SerwaChic. She worked and worked, toiled and slaved to come up with the perfect diaper for Jonah. After a couple attempts and some EB friendly suggestions from me, she did it! And here is his brand new stash (7 mediums, 10 larges with a few more on the way) of All In One diapers.


If you don't know much about cloth diapering, an All In One is just that. Everything you need in one diaper. It has a water proof material on the outside and an absorbent, soft material on the inside. And I love them. And they actually absorb, unlike our FuzziBunz that I ruined with Aquaphor. I'm using liners and Northern Essence diaper salve in his new ones, trying to keep them in good (absorbent) shape.

I probably love Jen's fitted diapers the most, but unfortunately, Jonah can't wear those because he can't handle the elastic of a diaper cover that you have to use with them.

But aren't they so adorable? (And really affordable to boot!)

So back to the giveaway.

This giveaway is good for four gift certificates.

There is one for a custom Fitted Diaper (a $9.00 value):

(She makes the waterproof covers to go with them too, although you would have to purchase one of those.)

One for a custom Two Size Snap All In One (size medium or large, an $18.75 value):


One for a custom All In One diaper (a $17.50 value):

And one for a custom Nursing Cover (a $19.50 value):

So leave a comment here (only one comment per person please), and I'll use the Random Picker Thingy to select a winner.

Jen does have some diapers and nursing covers in stock, but custom means you are welcome to look at all the materials she has available and choose your own. And if you EB peeps out there need some EB Friendly cloth diapers (or you've ruined the ones you have with Aquaphor like I did), Jen is IN THE KNOW. I'm loving mine. (Her website is serwachic.com)

And just to be in compliance with all I'm supposed to be in compliance with: I purchased Jonah's diapers from Jen, but these gift certificates I did not purchase. She is giving those away. And she didn't ask me to review her diapers, but they're great, and I wanted to share. So there you go. And something about Void Where Prohibited, FBI Warning, Copyright Reserved, No Purchase Necessary and so on and so forth.

So leave a comment. On this post. THIS is the giveaway. For real this time.

Let the games begin!

Comments will be closed Wednesday (11/18/09) at 3:00 p.m. ET.

Comments are now closed.

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.

***************************************

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.

***************************************

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...

cooped up...

Cooped up in the house with this guy...

... and there's no where else I'd rather be.

(But seriously, if it rains one more day, I'm gonna go nuts. Tomorrow, we're bustin' outta here.)

an update on tripp

UPDATE:
It's not pneumonia. But you probably already know that. I've been doing dressing change, eating lunch, and force feeding my child, so I'm a little behind. Courtney posted that Tripp's lungs look really good. The reason he's having trouble breathing is because of all the mucousy secretions from his virus. His trach is getting clogged up. (That's my really "I don't know anything about anything" explanation.) Anyway, they are starting him on Atrovent to help dry up the secretions, but have to be careful not to dry him out too much. They are still in the ICU, and he did have another episode this morning, but Courtney says she knows what to look for now and how to help him before he gets in too much trouble. For her explanation (which is much better than mine), you can visit his Caring Bridge site.
********************************************************

An update from Tripp's Caring Bridge:



Hey guys. Real quick update...Today Tripp was taking a nap and started breathing really heavy. I didn't think much of it.. just that he was probably in a deep sleep. Well, when he woke up, he was in a complete state of panic. Nothing was coming through the trach at all... he was making noise through his mouth but by trying REALLY hard to do so. His feet and hands started turning purple and I could tell by his face that something was not right. (Thank the GOOD LORD that my mom had just gotten there and I wasn't by myself). So we put him on the changing table... and within seconds, he was completely grey... everywhere- his mouth, face eyes... everything. There was no air coming out of the trach, so I took that one out and put a new one in. There was still no air coming out. By this time he was giving up and had closed his eyes. I shook him and they opened back for a second. I got the ambu bag and gave him some breaths through the trach. Still nothing. So I did it again. He was still moving some air through his mouth and had a pulse, so I knew breaths were the only thing I could do. Then I called 911. Soon after, he finally started breathing through the trach and starting getting color back. The paramedics came in about 10 minutes (Thank God I had gotten him back breathing). By then his oxygen was about 93% with blow-by oxygen ON. So they brought in to the Ochsner ER by ambulance. Yeah... not over yet. THEN, he had another one of the exact same episodes in the ER. Except this time, the nurses were just standing there watching ME try to unclog the trach (oh, by the way, they think he is doing that because he is getting mucous plugs in his trach because of the thick secretions he's having.. That OR pneumonia). Anyway, so going back to me being the doctor and the nurse and everything else.... there ya go. So when no one else would do ANYTHING.... I called my ENT (THANK THE GOOD LORD ABOVE FOR OUR ENT......... I COULD NOT HAVE A BETTER ONE. SHE IS AMAZING...She's not only Tripp's ENT, but MY therapist.) I called her cell and she LEFT HER HOUSE (which is close to the hospital, thank GOD) and was there in 5 minutes. She changed the trach out again and we got it unclogged. SOO... we are now in ICU and he is stable and breathing better. He is on oxygen and humidified air to try and thin out the secretions. Please continue to pray for him to get better and also for us not to catch anything else from this hospital!) I will try my best to keep you updated. I cannot express how grateful I am for all of you and for everyone's constant love and support. I know it's what is keeping me going. Thank you. Love you all. Courtney



Can you imagine? Can you imagine watching your child wake up and having to see that panicked look in his eyes? Can you imagine literally breathing for him until help arrives? And then, you go to the ER and it happens again, and the people you are trusting to care for your child are just STANDING THERE while YOU have to be the one saving your kid's life... because they DON'T KNOW WHAT TO DO.



That's one of the worst things about EB. Half the time, the people who are SUPPOSED to know, who are SUPPOSED to be able to help either just stand there or make matters worse. YOU, as the parent, literally hold your child's life in YOUR hands. It's up to you to nurse, doctor, educate. It's overwhelming, exhausting, and completely terrifying.



Please be in continued prayer for Tripp and his parents. We've only experienced a tiny fraction of what they have, and I know how scary it was for us. Please pray for strength, courage, perserverence, and of course healing.



Thanks. :)

URGENT PRAYER REQUEST FOR TRIPP

Please, please say prayers for Tripp tonight.

Courtney just texted me and said that he turned gray and stopped breathing earlier today. She had to give him breaths through his trach and called 911. They took him to the ER, and he has been admitted.

They think he has pneumonia.

Pneumonia is bad for any baby, but is especially bad for an EB baby.

Please visit Tripp's Caring Bridge if you would like to leave them a message. I don't know that Courtney has had any time to update it, but I'm sure she will when she gets a chance.

Thank you so much.

coming soon...

Hey everybody,

Well, I really want to give back to you guys for being such loyal and wonderful friends AND I want to give my good friend, JEN, some exposure for her new cloth diaper business, SerwaChic, so...

LOOK FOR A CLOTH DIAPER GIVEAWAY COMING SOON TO A BLOG NEAR YOU (ahem, this one.)

In the next couple days (or by next week at the latest... don't you love how ambiguous I am), I'll be giving away (or really Jen will... I'm not doing anything but posting about it) these four gift certificates to a lucky reader. I'll post some pictures of her great diapers and nursing covers and also let you guys see the GREAT custom cloth diapers she made for Jonah. And all you'll have to do on THAT post is comment for a chance to win.

These certificates are good for: one nursing cover, one fitted diaper, one All In One diaper, and one Two Size Snap Diaper.

And hey, even if you don't have kids or are out of the diapering stage, THESE would make a rockin' gift. Seriously, I would totally be jealous.

Okay, so be on the lookout for the giveaway. And you better participate, because it's my very first one, and I'll feel like a total loser if you guys leave me hangin'. But no pressure or anything.

So comment, comment, comment. (But not on this post. This is NOT the giveaway. I mean, feel free to leave comments here, but they will not get you any cool presents. Your comments here will just make me smile. They WILL make me feel all gushy inside reminding me of how much I love you. They WILL NOT qualify you for free stuff. Okay, just wanted to clear that up. I'm going to stop typing now. Can you tell Jonah's taking a nap and I finally have some free time? Ok, really, I'm stopping now.)

Man, I'm no good at this stuff. This has got to be THE most confusing giveaway known to man. Except that THIS isn't the giveaway. You know what I'm sayin'? Oh, you don't?

Me neither.

a long day and poo on Ida

A very long day today.

Jonah only took 18 ounces, and it was a MAJOR struggle getting him to take even that much. He's now fighting us even in his sleep. He's a smart one, he is. I hope this is just the last couple days and not a habit, or we'll be in trouble and on the road to a g-tube yet again. He'll be weighed again on Friday, so we'll see where he stands.

He's still not napping except in my arms... like I said... Long Day.

Don't get me wrong, he's sweet and beautiful, and I love holding him, but I get so tired struggling to get him to sleep and feed him, all I want to do is lie down... if only for thirty minutes. But as soon as I try to put him down, his eyes pop open. And unfortunately, most of the time he's not waking up happy.

Sorry, today is a negative day. We haven't even stepped out the door in two days, something about a tropical storm passing through... constant rain... frigid wind. No fun.

I'm having a hard time knowing how to entertain him (and myself) for a full day stuck in doors with no napping. We've had rough nights the last two or three, so I think I'm just overly tired. It's my night tonight, but I'm hoping it goes well, and I can catch up a little. My whole perspective changes when I'm tired, and I HATE being a whiny baby. I know we have it good.

Could you say a few prayers for Tripp tonight? He's struggling with a nasty cold or virus or something and is also having major pain from chronic mouth blisters/sores (EIGHT TEETH last I heard). Courtney is having to suction him about every five minutes. I know by the way I'm feeling, it must be 20 times harder for her. And she handles it with such grace, always thankful. Anyway, if you could say a prayer for Tripp to feel better soon and for strength for his parents, I know they would appreciate it so much.
*******************************************

And on another note...

HAPPY FIRST BIRTHDAY, JUDE! WE LOVE YOU BUDDY!

he finally did it!

Very quick tonight...

Jonah had me up a lot last night, and I am completely exhausted. (AND we haven't set up for tomorrow's dressing change yet.)

The big news from today:

JONAH ROLLED OVER (finally) ALL BY HIMSELF!

He only did it once and hasn't done it since, but he most definitely (with verbal coaxing and toy dangling from me) rolled over from his back to stomach. He keeps trying to do it again, but with his arm being so thick and bandaged, he really has a hard time getting over it. When he did it earlier today, he had his arm up, elbow out of the way, so it was easier.

He's so sweet. Kathryn was here and saw him do it, and she and I yelled so much and so loud, I was sure we were going to make him cry. But nope. He just smiled and smiled so proud of himself. And then he immediately got ticked that he was on his stomach. And then we called Daddy. :)

Okay, gotta run and set up. And then it's off to bed.

I'll try to get Jonah on video rolling... you know, if he ever decides to do it again. I'm not holding my breath. That boy has a mind of his own (and a pretty feisty attitude too... I don't know where he gets that.)

a few pics from the weekend

Hanging out on the deck on Friday.


Playing with his new favorite toy... well, it's a tie between this and my cell phone.


With Aunt Sarah at Gabe's spot on Saturday.

Looking at the ducks with Mommy.

Daddy corralling the ducks for Jonah's viewing pleasure.

Playing with Gabe's flowers.

*******************************

Nothing much new here today. We did get to go to the mall, and for those of you who care, I got a GREAT pair of brown pants - exactly what I wanted - for $21.00 at Eddie Bauer. That's what I'm talkin' about.

*******************************

But really, who cares about brown pants? I'm so pumped about Stellan's successful ablation I'm literally all giddy and fluttery inside. I don't know about you, but I spent most of the day F5 refreshing Jennifer's twitter page every free moment I got. Still praying for the gunk in his lungs and his fever, but man, oh man, GOD IS AWESOME. I knew He was still in the miracle business. HOORAY!

our weekend

We've had a nice weekend, and I have a couple pictures to prove it, although I'm too tired to get them off my camera and put them up tonight.

Matt's parents came Friday night around 9, and we were just finishing up putting Jonah to bed. We got up Saturday morning, fed Jonah, let him take a long morning nap (holding him, of course), and then did dressing change. We ate lunch here and then later in the afternoon, my sister, Sarah, came over and we all went out to Gabe's spot (Debbie needed to put some flowers on her brother's grave who is also buried there) and then to Garden Ridge in Greensboro. I like that store. Lots of stuff for reasonable prices. They have LOTS of outdoor Christmas decorations, but I was being indecisive and thinking to myself that I don't have a staple gun or a tall ladder or creative decorating skills or energy, so, needless to say, I didn't buy much of anything. Actually, I got two pairs of pajama pants, 6 pairs of white athletic socks, the book Corduroy, a fall wreath for the front door, and a Christmas decorative stake thingy to stick out front. In my head, I'm totally going to go all out - in the decoration department - for Jonah's first Christmas. But when I really sit and think about how much money, time, and energy that will take, it just makes me feel tired. Pretty much anything outside of the day-to-day makes me feel tired. Sometimes I think I'm just lazy. If I can get dressing change done before noon, I feel like it's a productive day... and then I just kind of feel sluggish until bedtime. I know. I know. Get my thyroid checked. It's on my list.

Today Jonah didn't wake up until 7:45 (after waking up at 6:20 babbling... my response - ignoring him. It apparently worked.) Unfortunately he woke up VERY poopy, which required immediate dressing change. We went straight into it hoping we could still make it to church, but it was 9:30 by the time we got done. We knew we couldn't get him fed, both of us showered and ready, and him changed and out the door within an hour. So no church for us today. We did take him out around 2:00 to lunch at The Loop. Matt and I like taking him to places with outdoor seating (although there are very few here in Kville), because he's happier outdoors and the germs aren't closed in. He was great! Then Matt kept him for about two and a half hours so I could go SHOPPING! I'm not usually a big shopper, but I am desperate for some fall/winter clothes, and clothes shopping is not an easy thing to do with Jonah. The last two falls/winters I've been in maternity clothes, so my old stuff either doesn't fit right anymore or has been washed and dried so many times it's all faded, bumped up, or too short. AND I'm feeling the need to feel pretty. I know that's not really important, and I definitely wouldn't classify myself as "fashionable," but I wanted a few new (colorful) tops for the cool weather. (Staying in your pajama pants and t-shirts with your hair in a pony tail all day starts to make you feel really frumpy after a while.) I tend to buy everything in really dark shades, so I made myself buy things in pink, purple, orange, yellow, and green today. I had great success at Kohl's, and I feel like I got some good deals.

I'm at a frustrating place right now because the styles in Juniors don't really suit me anymore (or at least I feel like I should be dressing differently), but nothing in Misses really fits.

And for crying out loud, where are all the dark brown casual but not too casual pants??? (I tried Target, Kohl's, Maurices, and CATO.) I hate having something very specific in my head but not having a clue where to get it. I'm hoping, if Jonah cooperates, Matt's mom and I can head to the mall tomorrow.

I'm counting on you GAP. You're my only hope.

Jonah ate 22 ounces on Saturday, but only 19 1/2 today.

Oh yeah, and he had a big gusher on Saturday morning, you know, the morning after I blogged about it. Why oh WHY do I do that???

This officially concludes the most boring post ever.

PS - Tripp, Jonah said to say, "Good game." We almost had you, but we have a tendency to screw things up in the end. Hope you got to watch the game with your daddy.

go panthers!

Dear Tripp,

GO PANTHERS!

Love,

Jonah

quick update

Just a short update tonight. I'm about to go to bed. Jonah was only up for about thirty minutes overnight, but I went to bed way too late, so I kicked my own butt.

The nurse came and weighed Jonah yesterday. He only gained an ounce over this last week, but it's not a loss, so we'll take it. Plus I think all his calories went to length instead of weight. I swear he seems like he's grown a foot over the last two weeks. He's getting taller and thinning out, and he doesn't look like my little chubby-faced fatty anymore. Kinda sad. :(

He ate 24.8 ounces today! Hooray!

He's still not really napping more than twenty to thirty minutes at a time, and most of the time, he'll only sleep as long as I'm holding him.

I know I shouldn't do this but...

He hasn't had a gusher since Tuesday of LAST week... so we're going on ten days! And it was seven days between his last two. I'm not saying he won't do it again (especially now that I blogged about it), but hopefully we're outgrowing it.

Matt's folks are here this weekend, so I'm excited about that. They're only here until tomorrow evening. I'm hoping we can get out tomorrow (I've been out once since Sunday... Jonah hasn't been out at all since then). It's supposed to be a pretty weekend here, so I hope we can spend a lot of it outside. I figure we won't have that many more warm ones left.

Okay, off to bed. Thanks for all the wonderful comments and emails. You guys are the best. I'm better now. :)

anonymous comments

This comment was just posted by Anonymous:

Hey mom! That's not very "christian" of you to tell me to get a life. Maybe you need to get one too besides going to Target every chance you can get and then blogging endlessly about it!!! If you don't like my comments about T.V. then maybe you will listen to the American Academy of Pediatrics and what they say about children under 2 watching T.V. (see below)The American Academy of Pediatrics (AAP) recommends that kids under 2 years old not watch ANY (hear that Target mom!) TV and that those older than 2 watch no more than 1 to 2 hours a day of quality programming.The first 2 years of life are considered a critical time for brain development. TV and other electronic media can get in the way of exploring, playing, and interacting with parents and others, which encourages learning and healthy physical and social development.

I'm sorry if my comment seemed not "christian," although I still don't really know what that means. All a Christian is is an imperfect being saved by grace in Christ. And I need more grace and forgiveness than most. I don't think I've been shy about admitting that fact.

On the other hand, I am ALL DONE with people judging my parenting and acting like they "know" what kind of mother I am based on what I choose to share here on my blog. Most mothers can skip baths, leave their kids in their pajamas all day, don't have to do two hour dressing changes DAILY, and get a small break when their kids close their eyes (as opposed to having to use every nap as an opportunity to struggle to feed your child). If I need to put Jonah in front of the TV to brush my teeth or eat my lunch or fold the laundry, I am going to put him in front of the TV... you know, horribly brain-rotting television like Little Bear. Please do not act like you know how I engage, interact with, or educate my child. I spend more quality time with Jonah than about 99% of parents... and I don't take a moment of it for granted. I love it. I live for it. I do anything and everything for him. And God gives me the strength, patience, and perseverance to do it day after day after day. I wish you could be here to see what a day is like for us. Then you might be a little slower to "speak."

And obviously you are ashamed of what you have to say (or at least the way you are going about saying it) because you continue to post as Anonymous. I loved the way one reader said it, "If you have an opinion, then OWN IT."

I have TWO email addresses on my sidebar where you can contact me. I would appreciate you using mine instead of Jonah's since his should be reserved for encouragement. What a coward you are! YOU are the one who should be ashamed.

To everyone else:

So many of you post as Anonymous, and you are so uplifting, so encouraging, so completely wonderful. But I cannot take comments from the cowards ANY longer. They bring out the demon in me. They make me so angry I shake. They ruin my day. They drive me nuts. I'm home all day long trying to take care of Jonah as best I can. I have very few hobbies; very little time for non-Jonah things. But the blog is a hobby that I enjoy. It's meant to be positive - sometimes happy, sometimes sad, sometimes funny, sometimes sarcastic, sometimes completely superficial - but never mean or hateful. It was started for Gabe. I continue it for Jonah. It's mostly for my family and a scrapbook for my boys. It's my blog.

And I need it to be a good thing. For me. For my family.

So...

I am no longer allowing anonymous comments. This is not the first instance where people have abused that they can post comments faceless... with no accountability, no consequence. They can abuse innocent people for whatever reason. I don't get it. I don't get people who spend their time reading blogs they don't agree with just to hurt the people who write them. I don't get it. I don't get why they are so angry or jealous or hopeless or sad that they have to take their time to bring down other people.

And I would say I'll just delete them and move on, but I know, emotionally, I just can't take it. My skin is too thin. My heart is too fragile. My brain is too tired.

So please, please, if you are a regular positive poster who posts as Anonymous, I'm begging you to take the time to register with gmail or post with an ID. I still want to hear from you! You warm my heart. You make me feel like I'm surrounded by friends... even when I'm all by myself. You make me excited that there are positive people in the world who will love on and care for Jonah, despite his outward appearance. I hope you stay!

And for all the haters, feel free to email me if you'd like to have an open discussion about something you disagree with. You don't need to hide. If you feel so strongly enough about something you feel the need to comment, then email me. If you have an opinion, OWN IT!

Thank you to the 99.5% of you who lift us up and encourage us every day. We thank God for you!

sweet tea for baby j

So in an effort to convince Jonah that not everything that goes toward his mouth is negative...

I let him try sweet tea.

And Jonah, the boy who won't open his mouth for anything, opened right up (over and over again) for some good ol' sweet tea.



Here in the south, we like to start 'em early.

And for those of you who've asked, here is how I like to make mine -

I always use the Lipton Decaf tea bags. I definitely think Lipton is better than Luzianne. I typically get the Family size bags. (But I'd say five or six of the small bags equals two of the big ones.)

I turn a burner on high and fill a medium saucepan about 3/4 full of water. (OK, really I don't know what a "medium saucepan" is exactly. I use not the smallest pots I have, but the next size up... the size you'd warm up a big can of soup in.)

I put four family size tea bags in the water.

I let the water get to a boil, and then almost immediately turn it off. (It's okay if it boils for about a minute, but no longer.)

I then let it sit for about five minutes (but no longer) while I put my sugar in my gallon pitcher. For a gallon of tea, I use about 1 1/2 cups of sugar. Suuuh-weeeet.

I then pour the tea over the sugar in the pitcher, using a slotted spoon and mashing the extra tea liquid out of the bags.

(I don't like my tea to taste over-brewed... think Bojangles...blah... so that's why I don't boil it very long, don't let it sit for very long, and get rid of the bags early.)

I add a little more hot water and mix the sugar until it dissolves and then fill the pitcher the rest of the way up with cold water.

I put it in the fridge and usually don't touch it for 24 hours... or at least until it's really, really cold. (THIS may be the most important part!)

I like NOT using ice if I can get by with it.

So that's how I do it, and it's dang tasty if I do say so myself.

Here are my DON'TS for sweet tea:

- DON'T use Splenda when making sweet tea. You might as well give up tea altogether.

- DON'T make tea in a coffee pot. No matter how much you clean the pot, you can taste the coffee (or I can, anyway).

- DON'T over-brew your tea. If you leave it too long and get distracted or let it boil longer than just a couple minutes, start over.

- DON'T buy "sweet" tea in a bottle at a convenience store. It's GROSS. And in most they add that fake lemon flavoring, and that's even worse.

My DO's:
- DO try the sweet tea at El Maguey. It's the best I've ever had. Seriously.

- DO give sweet tea to your eight-month-old. DO NOT care what other people may think of you because of this.

It's your blog and your kid and you'll let him drink sweet tea (AND WATCH TV EVEN THOUGH HE'S UNDER TWO YEARS OLD) if you want to. (Some people - ahem, Anonymous - need to get a life.)