2nd Chiropractor Visit, Puking, Alternative Medicine & Brutal Honesty

Went much better!

Noah still flipped out when the dr put up his x ray....will he always be scarred by them? I hope not, it has to get better. Anyways, the chiro mentioned starting him on Aloe Vera juice. I don't know much about this, but it is suppose to help with inflammation and his thinking was all the vomiting makes his throat sore, so this might help. Despite our best efforts and trying every med and trick under the sun, Noah still vomits daily. No matter what we do, we can not get him to stop fully. A lot is behavioral, so hopefully as he gets older this will get better. Both boys got adjusted. Brock just sat there like a little champ and liked it, he has one LOUD pop, I was surprised by it. Didn't faze Brockie in the least and he was finished pretty fast. Noah did sit on the table and was ok with it. Him and the dr have to work on their relationship. lol. He said Noah was very tight and he also has a few loud pops. Noah was in a MUCH better mood after his adjustments. He gave all the ladies there a hug by, he may be a bit of a flirt.

Noah is suppose to go 3 times a week for 3 weeks, then 2 times per week for 4 weeks then once a week for 6 weeks. THEN, {still with me?} 2 times a month for 4 months and finally 1 time a month for 5 months. Whoa, a lot of visits, so Noah better learn to like it...little booger. Brock is mainly for maintenance. He is suppose to go twice a week for 3 weeks then once a week for 4 weeks, then eventually once a month for 7 months. It's really nice bc it's literally 3 minutes up the road.

We have tried tons of meds to help Noah, none which have done anything significant for him, so now we are looking more into alternative meds. DH and I were talking ab it and if it's non invasive and can possibly help him feel better, why not? I have been doing a lot of research on chiropractics and kids and have gotten nothing but good feedback on it. I have talked to several moms who take their kids and love it. Of course at any point if Noah seems absolutely miserable, then we would stop. I just can't stop looking for things to try to help him. I refuse to give up and say, "sorry buddy, this is as good as it gets." It's not. There has to be SOMETHING out there. There has to be a reason. There has to be something someone is missing. My duty as his mom is to help him and by damn I will. I am not giving up. I am SO thankful he is so happy and loving and sweet as he is with all the crap he goes thru. Can you imagine puking 3-5 times a day since you were 4 months old??? He will puke, which looks horrid bc he has a nissen, so he sounds like he throwing up his stomach, he gets all red, and sweats and shakes at times, his eyes water and get bloodshot. He will do this for a min to 3-5 mins. It's exhausting for him. then he gets RIGHT back up and plays like oh, this is what kids do....this is normal. How miserable that must be, what that feels like? How his throat feels from puking so much. It's all he knows. He doesn't know different. It's his life. I refuse for that to be his life. Would you accept that for your child? No, you wouldn't.

We have gotten some negative feedback from people about taking the boys to the chiropractor. Really? I don't see the big deal. Come to think of it, we have gotten lots of feedback from people about lots of things in the past 2.5 yrs. Imagine having a non eater with "issues" then getting pregnant again! Wow, the feedback from that was insane. "Your having ANOTHER one...Noah's not eating." really? I haven't noticed. "How are you going to afford another child, you stay home with Noah." ugh People have really said these things.

I guess it's fair game if I post on FB about my life. People can comment, but I ask one thing before you judge us or say something dumb like, "well, I could get him to eat/he'd eat for me." {Which I effin' despise that line, if you can get him to eat, DO IT! I'd LOVE for you to! BY ALL MEANS!} Walk in our shoes for a week, hell a few days would be sufficient, THEN, and only then, can you tell me what you think. Or how I am going to far trying different things. Oh, and if your going to say it, don't say it behind my back, tell me. Don't tell me I am hurting him by taking him to the chiro. How I am 'risking his "being." Just because he looks "good/normal" doesn't mean he is. EVERYONE could use an adjustment. Why not try something easy like a chiro. if it may help? Frustrating.

We may not have the means to go do things we use to, funds are tight, I'm not going to lie, it's not easy, it strains relationships, friendships, family. You find out who your true friends are. Dr appointments, therapy, making formula, I NEVER thought I'd have to still be making my 2.5 year old formula everyday. It sucks. Brutal honesty, I don't like feeding Noah thru his tube. I wish SO badly he would just eat. It's so simple right? You put food in chew and swallow, simple. Not for him and it breaks my heart to watch him struggle with something that should have been so natural for him. There are days I still do the WHY ME crap. Why him? Why can't things be easy? Why does everything for him have to be 20X's harder? I am also thankful for Noah's tube, I wish he would eat yes, but I am very thankful he has it and I can feed him & he thrives.Then I know, there are people who have it much harder than us They fight diseases they never should have to and are so much stronger than I will ever dream of being. They are examples of how people should be. They go through so much pain and yet, so happy, full of life. That puts things back in perspective for us. Yeah, him not eating sucks big time, but it could be worse.

I love my boys more than anything in this world. I wouldn't trade them for anything. They make me so happy and watching them grow is amazing. There is nothing more amazing then Noah coming up with a smile and saying, "I love you mommy." Or going to get Brock in the morning he and gets a huge smile on his face & is so happy to see me. The random cuddles throughout the day with both boys. These are the things to keep on going for. To get Noah better. To take the bad, but then have them do something so small as giggle and everything is right in your world.....even if it's only a few minutes.

Frustrating Dietitian Appointment

Noah met with his dietitian yesterday, he has lost almost 2 lbs since last January. He was a hefty 32lbs 14oz, now he is down to 31 even. Height was 38.5." Which is still 50% for weight, but we don't want him losing weight, even with room to spare. We were ok with him holding steady because he was a chunk, but now he has lost. I am very obnoxious with counting the calories in his blend and have a food scale that tells me how many calories are in certain foods to make sure I am right and not just guesing and then possibly under guessing how many calories are in his blends.

We have transitioned from full J feeds to small blended diet boluses and hooked up at night, to larger BD boluses. Our calorie goal was 1,400 a day, which isn't cutting it anymore. 1,400 is a crazy number for a 2 year old. On a BD we have always had to go higher than on just formula alone. That's a ton of calories though. Granted Noah is super active and always going, it just seems at that many calories he should be gaining something. We also have to factor in the he was doing 2-3 day food trails & his calories were slashed in half, obviously that doesn't help in weight gain. I remember at one point, Noah was about 8 months old he was gaining fast on a ridiculously low number of calories per day, but he wasn't active at all and he was only on Neocate & Duocal. Now it's just the opposite.

Noah still has a lot of trouble with volume. He can do ok with 6oz boluses, but anything after that he just vomits up. Plus his digestions is a bit wonky at times. Some days he does great, others, the food just sits and sits. He also can't eat every 3 hrs, his food won't digest fast enough to do this. So,then we can't get in the right number of calories or he has to be hooked up to his formula and pump.

Noah was also cleared for dairy, which was something he was allergic/intolerance to at one point. We have added some back in slowly and he is back to being really mucousy. I am talking vomiting up his entire feed, even though he has a nissen, or he just vomits all day, multiple times, 5-8 times. Sucks. So, we are going to cut that back out and see if that improves. When he is congested he has a really tough time handling feeds. He starts coughing which almost always leads to vomit. He is not sick, he is happy, playing, so we are going to nix milk and see if it helps any.

Our new goal is to go to 1,600 calories a day. That's more than mine! We are going to be doing half BD and the other half on his pump, bc like I said, volume is our enemy and I can't make his blend the right amount of calories and volume at this point. If we add more oil, which is an easy way to get calories up without adding much volume, it's too fatty and he has a hard time digesting that. Our other goal is to slowly up his BD boluses and hopefully wean off the pump. This can take ages though. 5-10mls, not even half an oz, can be j-u-s-t too much ....its crazy. At one point I would love to be able to push 8 oz and not think twice....though that seems like a long time down the road.

Boys Chiropractor Visit and The X Ray Fiasco

So, I have been doing some research and decided to take the boys to the chiropractor. There are so many health benefits of taking young children, so I thought what they heck...and did it today.

 The office was so nice and the staff was amazing with the boys. Couldn't have asked for nicer people. We met with the chiro and he examines their backs and necks. Then he wanted Noah to have an X Ray of his back so he can see things better. So, I take Noah into the X Ray room, {I am sure there is a proper name for this.} and that is when it becomes a nightmare. Noah starts crying and running out of the room saying NO NO NO. I thought ok round 2, same results. Sigh....he kept saying NO tube, No Tube....he thought he was getting a tube change, which he HATES...he is literally shaking and crying, can't catch his breath.... it was ugly. We took a long break, tried again, same result....finally he stood there for about 3.5 seconds and the staff took the pic and we prayed for the best. LUCKILY it was great! Thank God.

We re-met with the Chiro and he said Brock was a little out of place in his lower back, but nothing major. Noah on the other hand was a hot mess.....am I shocked, not at all....what else do I expect with my lil man?? His neck is all wonky--his upper back is a huge mess. The Chiro said from coughing and gagging, retching, can cause it...then his hips were out of line. Since Noah decided to loose his mind on the x ray and it took ages, over an hr, they dr didn't have time to actually do any adjusting on any kid. We have an appt on Friday and I am hoping it goes smoother....we are going to do a lot of talking about it and hoping, wishing, praying, he likes it......

New Pediatrician Visit

So, today we had an appointment with a new Ped. We have been having some issues with their old pediatrician so it was time to move on. We found her through Noah's dietician and I am so happy that we went. She was amazing. The boys seemed to like her a lot. Noah use to scream and cry when getting his ears checked, this time he just sat there and talked to her. Huge for him. Her staff was super nice and there was zero waiting for her to come in. We have waited over 35 for his old ped.


One thing I really liked was she weighed Brock, but didn't plot it on that dreaded chart. She said he was perfect and was developing at a great rate. I hate how much the old ped was, " he is kinda low on the %tile." Their new Ped, Dr White, was all, "look at him, he's crawling and pulling up, standing alone at times, babbling....I don't need a %tile to tell me anything, he says it all." LOVE it. I love how she looks at him and not the damn chart. She did do a blood draw to check his levels and I was thinking Brock was going to scream, nope, he just sat there while they did it. Didn't cry, didn't pull away, nothing. I was impressed. I have strong kids! ;)


She listened and took notes during Noah's history, which took a good 20 mins . She wants to see his medical records from Cincinnati Children's. I am not expecting her to find the missing clue everyone else has, but a pair of fresh eyes will be nice.


I never once felt rush or pressured into anything. She feels parents know the kids best and let them decided....of course if she thinks otherwise she will tell you, but it's your choice what you want your child to have or not have. It's nice that she lets you choose what is best vs. going exactly by the book. She also doesn't dull out antibiotics unless they truly need them. I like that. She is into natural healing vs meds. We don't go back until Brock is 1 and Noah is 3!


All in all, it is way worth a 35 minute drive to get to her. I will recommend her to everyone! 

Potty Training.....

Oh man! Where to start.

It's hard to potty train a tubie. You can't bribe him with candy, he hates stickers, {sensory crap.} I'd go broke buying him toys each time, so what do we do? We cheer! Annoyingly. He LOVES it. He pees/poops, we clap and say "Good boy, That's awesome, Your so big!" Something like that. He gets this big cheesy grin, like yep I rock, I do. ;)

We have been working on potty training for a while now.  He is almost 2.5 yrs old. He has never really gotten it until recently. I have to remind him to 'tinkle,' but he gets right on there and does it. {We rock a lil kid potty in our living room. Don't judge, lol.}

There have been times he will randomly go on his own without me reminding him. Though last night he was sitting on Albert watching Nina and the Goodnight Show, {Nina is one happy chic I tell ya.} and he was so engrossed in Nina, he peed all over Albert. It was quite funny, though Albert didn't find it funny. Noah said and I am quoting here, "Oh crap." Man, he cracks me up. It happens, what can I say. Here's the kick in the ass, he will not go if he has on underwear. Nope. He pees right in them. So what's a girl to do? We let him run around pantless..unless we go somewhere of course. We have to start working on wearing underwear, but he is dry almost most of the day, with an accident here or there, but for the past 2 days good, up until the we pee on dad part last night.We also have to move the potty to the bathroom.

Things to work on, but he is doing really well. I thought he would never be potty trained. He is doing ok. Pretty proud of my lil man. He currently just finished going on his own and I wasn't paying attention and he started dancing and clapping.....his own lil cheering team. We went to flush it and now he is dancing saying "bye poop, bye...see ya."

Love this kid. <3 If anyone has tips advice, please share!

Brock's eating..... Baby Led Weaning Style

Where's the jar foods? What are you feeding him? You CAN'T feed him that, he's a baby. I have gotten a lot for comments on how we feed Brock, some good, a lot of judgements and I am sure some just think I am plain lazy.

We don't do baby jar foods often here for a number of reasons. {Disclaimer here: I have been known to crack open a jar of pears and let Brock feed himself with them when we were running low on real foods, my emergency stock.} We do about 98% Baby Led Weaning with Brock. It's pretty simple. We offer him food that is offered to him in appropriate ways...such as some of his 1st real foods were, sweet potato sticks. I cooked them until soft, cut them into hand holdable sizes, put some butter on and gave them to him. Broccoli was great because it already had a "handle." He made the funniest faces with broccoli. Avocados cut into sticks, apples, pears, banana's.....Basically anything that was soft and mushable with gums.


How we got started: We did the initial jar foods at first and he ate them ok. He loved veggies more than fruits. I was happy to have a kid eat! It was amazing to watch him open his mouth wanting them! It was a first for us. ;) As a month went by he wanted less and less solids and started grabbing food off our plates and sucking on them. Of course I was like " no buddy your going to choke." {I will get into choking/gagging in a min} But he always did ok with it...he did gag some, nothing crazy or scary. Anyway--it was one day he went like 3 days without any soilds, he refused, shut his mouth, turned his head. Out of frustration I gave him a preloaded spoons of some baby jar stuff and he ate the whole thing by himself! humm.... I saw pictures about BLW, but didn't really think about it. One day I just put a piece of toast on his tray, buttered and jellied...he ate it! A while slice...all while saying MMMMMM....so cute. Then I threw a banana up there, he ate some of it, gagged a little, but was ok. He loved being in control and me not trying to sneak a spoon in of stuff he didn't like. He was eating so much better. So, Brock made himself a BLWer. I mean really, what's better jar foods or real foods with flavors and seasonings? Some of the jar stuff is kinda bland.

Now I know a lot of people will think  OMG he is going to CHOKE! I was one! Yes he gags on stuff every now and then.....He gets too big a piece, but he quickly brings it back up. He is learning. Does he gag now at almost 8 months? Yes at times. Yesterday bc he shoved his finger in his mouth too far....gagged some and looked at me like WTH mom! Lesson learned, did he shove his finger in there any more, no. There is a HUGE difference in gagging vs choking. My husband wasn't very excited about BLW, but Brock wouldn't eat jars, he simply refused. He still gets nervous when he gags, I hear, "Umm babe, come here, come here now, Brock's choking, gaggin I mean, oh he got it, good job buddy." If he does gag on too big of a piece, I have confidence he will get it back up, me panicking and sweeping my finger in his mouth is just going it make it worse, I could jam the food down his mouth further if I did. Of course he still gets his milk. He typically takes 6-7 oz 4-6 times a day or more if he wants.  I always offer milk before solids. He needs his milk more than foods. His diet is still 90% milk.

Here is a sample day for him:

B Fast- He has never taken much milk for B-fast, ever. He MAY take 3-4 oz, then toast, cheerios, and yogurt, some fruit slices...whatever we have, bananas, apples, pear slices, whatever. If he eats his solids awesome, if not oh well.  He is loving pre-loaded spoons of applesauce. He is really good at getting it to his mouth.

Bottle at 10am 7oz

lunch at 12:30ish: Turkey slices, avocado slices, Cheese, Crackers...this kid <3 crackers! with his milk offered in a sippy or bottle, which ever he wants.

Bottle at 2:00 7oz

Snack around 5ish: He just recently started eating goldfish crackers whole. He loves them.

Bottle at 6 7oz

Dinner what ever we are having, in his size pieces. The other day it was bbq chicken, cut into hand held sizes, peas and carrots.

Bottle about 6 oz and bed.

Does he eat well every day, no. Some days are better than others. Do I always offer this much, no, just bc I offer it doesn't mean he eats it all. Have I been known to help him get food in? Sure, if he turns his head or spits it out, so be it. He didn't want it. We have adapted it to work for us. Is it messy? YEP, sure is, but it's really cute to watch them eat.

Just because we feed him like this doesn't mean we are lazy or harming him in any way.  He is fine, happy and smiley. We have been to dinner at people's houses and they thought his food was too big for him and ripped it up into tiny, tiny pieces. He couldn't even pick them up. Please, let me feed him. If it's too tiny he can't get it. His pincer grasp is getting good, but not that good yet. I know what works best for his little hands.

If jar foods works for you and your baby--great! I would still give Brock jar foods if he wanted them, he just won't take them and honestly by this point, I wouldn't go back, plus I am pretty sure he wouldn't eat them. Do I hate jar food and think its the devil?  Not at all. After Noah, whatever works to get them to eat, is our motto! This is what works for Brock and how he eats the best.

He is happy--and on the flip side, Noah watches him eat sometimes and tries some of Brock's food too so he can eat like Brock. Always a plus! Maybe he will want to eat like Brock too! Wouldn't that be nice!

Marriage & Undiagnosed Children

Married life isn't always easy. Then you have kids and it can make things more complicated. You may have different parenting styles and have to learn to mesh both styles together to make that one that works for both of you and of course, the child. I mean, what are the marriage statistics today...1 in 2 marriages end in divorce. So, basically you got a 50/50 chance of it working in your favor. It takes work and patience.

Now throw in a child with special needs and you have a whole new world open up. The stress of having a child, in our case, with unknown issue, is unreal. You have to live it to know how it is. You have a new world of extra pediatrician appointments, specialists, therapies, hospital stays, surgeries...it goes on and on. It's not a few times a month, it can be weeks of appointments, non stop, every single day, it's draining.

Just accepting that you have a child with special needs is hard. No one wants something to be wrong with their baby. You and your partner may come to terms with it in different ways. I was vocal. I cried, yelled, rejoiced in the tiny things....my husband was quiet and didn't say much. I would beg him to talk about it, he wouldn't. He would just say, "it is what it is." Very true, but when you see your infant starving, bones sticking out with not one Dr that can help you, that's not what I wanted to hear. I wanted him to say, "Ya you know what, I am scared too." He never did. He kept it all in, bottled up.Taking Noah to his Dr appointments he would be the one to hold Noah down while they did the blood work. I couldn't, made me sick to my stomach. Nothing hurts more than watching your baby held down while they do procedures to them. It hurts your soul. You know they don't understand, but you also realize your not going to stop searching for answers. Giving up is not an option, but deep inside you know this isn't how it's suppose to be.

I am not going to sit here and say our marriage was easy or is easy. There have been times when it would have been easier to walk out and not look back. Not that I didn't love him, but it was so hard, so stressful, the unknown, walking out would have been the easiest thing to do. I thought he didn't understand me, he thought I didn't understand him, we wouldn't talk to each other much, because nothing we said helped each other. We blamed each other for things that didn't make any sense. We didn't have time alone...what's that? Our world was Noah and Drs. There wasn't time for us. We didn't have money to go out to dinner a lot for "us" time. We were living on my husbands income because I had to stay home with Noah. This alone added a ton of stress.

It's not been easy or fun at times, that's for sure, but he has started to talk more about what he's feeling, which is nice. We have tried to make more time for us, which doesn't always happen, but is nice when it does happen, though we end up talking about the kids. Go figure. We still have issues to work on, but what married couple has that perfect marriage? I have never met one.

No matter what, I am glad I have someone to share my good days, bad days, fears, happiness with. Someone who gets it. I can't imagine not having my kids, no matter how chaotic it can get at times. I know I speak for both of us when I say, we can have to worse day ever and the kids can smile and our day is instantly better. The kids smiles, hugs, & laughter make our world better even on the worse days.

"You need to get out & have a break." Letting the boys spend the nightout

So, I have been told in the past week, a few times, I need a break...{umm thanks, is it showing?} I would love the kids to spend the night, if they were a bit easier and I wasn't so neurotic.

I admit it, I am insanely anal about their feeding schedules and meds and them in general. I hate their schedules messed up; I have a schedule for a reason, keeps things going in an orderly fashion. I also have this overwhelming feeling of dread that if something were to happen to them while they were spending the night out, just bc I 'needed' a break, I would feel horrible. I would be a terrible, horrible, no good, very bad mommy. {that's one of my favorite kid books, well not mommy...moving on.}

Let's be honest, my kids are a handful & the only time Noah has spent the night out once when I had my C section with Brock & I hated it. I wanted DH to stay home with him and I even left the hospital a few days early so he wouldn't have to stay the night out again & he was at his grandmas!

Also, there are very few ppl who feel comfortable keeping Noah. He has certain meds he has to have a certain times---2 meds that are 3 times a day each and he has a ton of allergy meds to take and his neb not to mention his eating! It takes a huge suitcase just for him alone! I know my mom doesn't like having him hooked up at night---bc the tubing is long and she is scared it will get wrapped around his neck or something. I use to be scared of it to, but you get use to it. I mean, that understandable, plus you have to make his formula and get his pump set up, tape his tubing just right so it doesn't pull on his feeding tube-- Not to mention his gaggin, retching puking business. Why would I want to throw that on anyone when I know how much of a pain in the ass it is????

Then there is Brock. Oh, Brockie. He eats, BUT will only eat for certain people. He will not eat for his daddy, just me, only me, not anyone else, but me, did I say me? He will let my mom feed him sometimes though. When I say he won't eat, I don't mean he will take half the bottle, I mean he screams bloody freaking murder until he gags himself...don't be jealous. :) I can pick him up and he will stop immediately. Brat-o-roni. He also is very fond of his mommy right now....a lot. I love that he loves me, but MAN, he will crawl to my leg pull him and JUST WHINE until I hold him, then he is happy and smiley when I do. I don't see the allure in being held all day. I would think it would be more fun to go and play, especially now that he can crawl and pull up, but nope...that would be too easy, my house doesn't do easy. Plus, he is only 7 months old!

So the moral is, I can't have them go spend the night if all I am going to do is worry about both boys not eating/eating and them fussy being bad, meds...and such......that's not really a break, not like I am going to sleep better with them gone, I will still wake up, but worse, I can't go check to make sure they are breathing. Do any of you still do that? {{Hell Noah is 2 and I still go in at night to make sure I can hear his breathing...when does that stop????}} Sometimes Brock is in such a deep sleep I have to jostle him to make him move some bc I can't see his chest going up and down. I can't go to bed until they are asleep and double checking that they are indeed breathing.

I told, you, I am nuts, I admit it & besides it's not like I have a line of people wanting my kids to spend the night......maybe one day when things settle down some, me included.

One Step Foward, 4,687 Steps Backwards

Sigh.
 What a day. Noah was finally well enough to go to feeding therapy, where he was a turd. He was tired and has a nagging cough and he was simply a brat. Everything was "NO, GO away, then towards the end....Night night, go to bed." He was so tired, but no reason to be a shitball. So nothing happened at feeding therapy, but he managed to "kiss" a cookie. And the crowd goes wild....not so much. Blah. He is a gagging, coughing, retching, puking mess. His emptying has gone to nothing & his cough sounds yucky. I am so over this sick kid stuff. I think we are working on day 4 or 5 of sick babies.

He was doing so well feed wise. He was doing about 6 blended diet boluses a day, no pump at night bc we were doing them around the clock, well now he isn't emptying.... yet again. For instance, I fed him 4 oz at 12:00 pm, at 4:30pm he still had more than an ounce in his belly. I know being sick can hinder this, but I wish it didn't, it sets us back weeks, literally. We worked so hard to get him off his J feeds, took months and now a cold has set us back. Frustrating. We aren't getting nearly enough BD in him to count for anything and he's lost a little over a pound. Which isn't much in retrospect, but lil man weighs the same as he did January 2011. He has some play room, weight wise lets be honest, but he needs to gain something. It's been too long without anything. So I am sure the dietician will be less than impressed when we meet with her again. So, back to night feeds it is. We are running him at 50mls/hr and hoping he can handle that. Since he's been off so long we have to work him back up to his rate he was at before which was 80mls/hr. So, it's like he does really well for a month, MAYBE 2, then it's back to the mess that got us there in the 1st place. Never thought I'd still have to make formula for my 2 year old. =(  and BTW I am SO sick of Vanilla Elecare smell....I open a can and about gag now. Yuck.

Brock has been a pain today too. I am not sure what his deal is, maybe to add more stress to momma bc she doesn't quite have enough. He has decided he is going to go from taking 6.5-7.5oz bottles to 4-5 oz bottles....really kid? really? I don't need this. I need you to EAT! Gobble it up, be a pig.....please. He really could benefit from an overnight gain of about 2 lbs. I wish I could just pass some of mine off to them....then we would all be happy. It looks to me like his top teeth are swollen and working their way in, so I am blaming that....hoping once they pop thru more he will be more content. He doesn't even want to eat solids...he use to love them. Now, not so much. This morning he ate a little oatmeal, like a bite of egg, and and couple sucks of an orange....that was it. Lunch, nothing, snackish, he had literally one cheeto...tho he went to town on that one. {don't judge me.} dinner he sucked on some BBQ chicken and like 2 peas and maybe 8 baby spoonfuls of yogurt. Of course he had his bottles in there..."food before one is just for fun"....whatever...I want him to eat. He is super congested and all boogery, so it makes taking his bottle harder. He hates the bulb syringe, lemme tell ya! I have never met a kid who liked one. Thankfully, lil poophead let daddy feed him his night time bottle, normally it's mommy only....ever....who can feed him...so it's a nice break when he lets someone else feed him.

Come to think of it, both my kids are brats today.....sigh. Luckily they are cute.

I do love my kids more than anything and it's amazing to watch them grow and learn things. Brock is crawling lots more each day and I was just looking at Noah today and he is getting to be such a big guy! What happened to my baby??? *tear* His infant stage sucked, we didn't get time to enjoy it, the whole time it was trying to find out what was wrong with him, testing and hospitals..no fun. We try to remember to relax with Brock and take it a day at a time. Though when he fights eating, it makes it tougher...listen up kiddos....no more coughing & puking and make tomorrow smoother for all.

Here's to hoping tomorrow is easier!

Allergist Appointment--Old Pics, and Brockstar's Weight and Crawling

Noah had another follow up at the allergist today, he was such a good boy there despite not feeling the greatest. The allergist swears we will see results from the allergy shots...we have been on them since May 2011 and nothing, I mean not a single thing has improved...We have upped his Zyrtec, he is on Nasonex, Singular, Pulmicort, Albuterol as needed and allergy shots 2-3 times a week & he gets 2 shots each time...all this and no improvements. He says we are working our way up to the right vial to see improvements....sigh....well it's taking ages! He also says Noah is not diagnosed with Asthma quite yet, but he is thinking that with some of his other symptoms--it will be. Umm, isn't that more of you are or your not kinda thing??? So, that has me perplexed....he also wants to get another blood level for his food allergies he tested positive for....Milk, Rice, Oats & Peanuts. He reacted badly to Peanuts and he said being allergic to Rice and Oats is not common..so is not eating...my kid takes the not so common path...hell, normal is boring.. ;-) That huge welp is peanuts...he's never even touched a peanut, much less has eaten a peanut. It was huge. This wasn't today, this was 1/2011...he is due to be retested soon. That was a crappy day, lemme tell ya. Then he got 15 injects in each arm after that...to say Noah was unhappy is an understatement.

Brock is halfway-almost crawling...He is so close! Noah didn't crawl until 11.89999 months...not joke..so seeing Brock do it at 7 months is insane, but I'm loving it! We are trying to fatten Brock up bc he is so skinny...He eats, but is skinny as a rail. He is super long though...he is never going to be that chunky lil baby....He is 27.5" and only 16 lbs! He is freaking tiny! Of course I am crazy and count his calories, I mean who does that, that isn't normal...I mean, it's not...I know this, yet everyday, I have a notebook with how much he eats and how many cals it is. Seriously, I am nuts! Noah has done me in. I HAVE to get him to chunk up...On average is gaining only about a 1 lb a month. He is on high calorie milk, normal formula is 20kcal/oz, Brock's is 24kcal/oz. He is SO active though. He is never still, never--I blame that too. Though I am glad he moves, unlike his brother who was happy to sit for months and months......He is still haniing out on the same %tile on that dreaded chart though..I'm pretty sure they didn't have those back when I was a baby and put so much 'weight' {no pun intended..ok maybe a lil'} on them. I hate when we go and the nurse plots him, they are like, "oh he is so long, {pause, wait for it} and skinny!" No way! I didn't know...sigh Anyhoo..I STILL haven't gotten his 6 months shots, I have to do that too. he had a fever, then I forgot, then he got super sick, so I am behind...I have to get on those...I really hate Vax's. They make me so nervous. Really, I think he is going to be that ONE statistic you hear about on the news.

Ok, well Brock needs to eat, {a 6.5 oz bottle, which is aprox: 156cals BTW......} FYI ;)

Here he is moving it......http://www.youtube.com/watch?v=IlfSCu4Plic

What's worse than a sick baby.....2 sick babies.

Yesterday was a l-o-n-g day.

Both boys are sick. Noah had a fever all day, ranging from 100.6-102.6. Poor Brock was a worse off, his fever spiked to 103.8! Stupid pediatrician office was less than helpful. They wouldn't tell me anything, whether to go to ER, make an appointment, how much Motrin he could have. All I got was, " a nurse can call you back in 2 hrs." yep, 2 hours with a 7 month old and a 103.8 fever. I was so mad. I ended up giving him some Motrin and his fever was down in 20 mins thankfully. They both have been fever free since 2 am, but look terrible. Poor Noah's allergies are a mess. He's eyes are horrible. He gets these terrible allergy eyes and his eye drops don't help, plus he loves them so. (note the sarcasm) it's a Pita to get then in. If you walked by my house while I was putting them in, you would think I was ripping his toenails off, nope just eye drops.

Oh, Noah asked to go to bed last night at 6:30pm. Asked to go to bed. He was sound asleep, no joke by 6:35.

Both are up playing, so hopefully the worst is past us.

Here is a pic of his eyes & Brock playing happily! 

G Tube Surgery & Today

October 12th, 09 we handed off our 8 lbs 4 month old to surgeons to place a g-tube and Nissen. It was so hard to hand him off. He had no idea what was going on. He was wrapped in a warmed white blanket and was sucking his bippy happily. This was his 1st surgery & you have no idea how hard it is to place your child into someone's arms to go off to the O.R. Unless you have been there. 

Surgery took 1.5 hrs later we were called into the consult and told how it went. He did perfect and we met him in his room 30 minutes later. One thing I didn't think about was while he was under, they intubated him and when he cried back in our room his voice was raspy. I'm not sure why this bothered me, but again tears.

He wasn't allowed to start feeds until 24 hrs later & this was 1 time I saw him starving, it was late that night, almost 24 hrs without feeds, was one of the few times I saw him hungry wanting to eat and couldn't feed him. When he was allowed his first bottle it was 70mls, little over 2 oz and he downed the WHOLE bottle! Ummm, ya. Did we make a mistake? Is this a fluke? We were definitely second guessing it. In true Noah form, his next feed he hardly took any and we used his g tube for the first time. We were scared we were hurting him, being sore from surgery, but he didn't seemed bothered until the end, he retched. I has never seen a retching episode and OMG, I was freaked out. I thought he was choking. It was terrifying. Since he had a Nissen he wasn't able to throw up at all. So instead, his body wanted to, but he wasn't physically able to and made this awful noise. It was terrible to watch, to this day it sucks seeing it.

I do not regret his tube, he thrived getting proper nutrition and even became a chunk. For us, a fundo wasn't needed, but we consented to it and the Drs. said it's what needed so we did it. Drs know best right? Ha, no. Sadly, we have learned many have no idea. I 100% believe his nissen caused a lot of his oral aversion. If you tried to vomit, couldn't, did this 6-15 times a day, eventually able to vomit, again 6-15 times a day, would you want to eat? He quickly learned food = pain so don't eat. Then here I am forcing food in him, he vomits it, try later, vomits....it was a horrible cycle. We had no answers to why he vomited every feed other than reflux. We aren't talking a spit up. I mean if we feed him 2 oz, he'd vomit, retch, gag until 2 ozs came up. Could take 20 seconds or 3-5 minutes. It was miserable. He shouldn't have been able to get any food up, but he retched so much and so often he loosened it so food could come up. We had 3 upper GI's to make sure everything looked ok and it was, it was just loosened up and for him it wasn't needed to go back in a retighten it.

We did the formula dance. Changed a ton, trying to find one he'd tolerate. We thought his vomiting was do to a formula intolerance. We ended up on Neocate, which is an elemental formula and not cheap. Approximately, $35.00 a CAN. A can lasted maybe 3-4 days. Of course the older he got, the more he needed, the more cans he needed. "Luckily" because he was tube fed insurance covered it. It didn't help with vomiting.

He was still vomiting everyday, most feeds. It was our norm. We had puke buckets everywhere. We were getting use to stares in public when he would start retching and vomit. It wasn't pleasant. People can be rude, people would think he was sick and here we are shopping, puking, back to shopping. I am sure they thought we were terrible parents. We should be home, not out shopping.

Since no one in KY could seem to help us get Noah's vomiting under control we opted to go to Cincinnati Children's Hospital. They have been so helpful to us. They changed reflux meds, suggested trying a GJ tube.
{A gastrostomy-jejunostomy tube - commonly abbreviated as "G-J tube" - is a tube that is placed into your child's stomach and small intestine. This tube is used to vent your child's stomach for air or drainage, and / or to give your child an alternate way for feeding.} Redoing a Gastric Emptying Scan--to see how fast his tummy emptied. We did all these things, hell we would have stood on our heads if it helped him. He went back under for a GJ tube placement....why didn't any of his specialists in KY suggest this? I asked them, they told me no....I asked for another emptying scan, they told me no, it was all reflux, he was fine. Call me crazy, but vomiting 10 times a day at 1.5 yrs old is NOT normal. They redid his emptying scan,which proved he did have Delayed Gastric Emptying.

He was a different kid with a GJ tube. He still retched and vomited some, but not near what it was. When you feed into a J, you have to go slow, no more blousing. So he had to be hooked up and fed 20 hrs a day. It wasn't always fun, but beat vomiting constantly. He didn't mind, there were days we tried G feeds, he'd vomit a ton and ask for his backpack. (pack pack he calls it.) Plus his backpack is tiny and cute. Lol

In January 2011, we found out he has multiple allergies; environmental and foods. He tested positive to trees, grass, molds, dustmites, ragweed, milk, peanuts, oats and rice. He started allergy shots that May. I haven't noticed a big difference yet, still hoping. His allergist also put him on a nebulizer to help with his constant coughing and wheezing. His allergist has been 1 of the most helpful people to us.

So, this kinds brings us up to today. I fast forwarded some. I told you all those stories to get to where we are today. We are trying to wean off J feeds, trying to do a blended diet during the day. That's where we basically blend up real food, then push it through his G Tube. There are many benefits to a blended diet, (BD) more calories per ounce, which is nice when you child can only handle small amounts per feed, or has DGE. (slow emptying) plus, it's kinda fun to feed him things other than elemental formula. Also a BD can help with vomiting. It has some for him. He is on 2 meds, given 3x's a day each to try to help his emptying and vomiting. So far so good.

He is in OT, PT, Feeding & Speech, most weekly. He does have sensory issues that play a huge role in his oral issues. He has a very hyperactive gag and IF he puts food in his mouth, he will almost immediately gag. He can look at certain foods, ravioli and jello to name some, and gag and most of the time puke, just looking. He hates crowds and the noise in it. He freaks out, though it's getting better. He hates stickers on his hands, he will gag and puke if he gets squishy foods on his hands. He hates long sleeves shirts if they go too far over his hands. He loses baby control when we wash his hair. He struggles with going down steps, he flips out cries and shakes unless you hold him. Brushing his teeth ha! We force him every night to do it. He is getting better now though. He will bite certain foods, crackers into, though it takes a lot of persuasion, then he spits it out faster than you can say cracker. He never says he is hungry, he will take sips of liquids, never enough to count for anything. He could care less his brother eats. We were hoping he'd see Brock eat and he'd want to, not so much. He simply doesn't care.

We have a long road ahead of us. When will Noah get his tube out is a question we get a lot. The simple answer is when he eats and drinks enough to gain weight and grow on his own. Will that happen this year, probably not, he is becoming more interested in foods, but no actual eating. Could he have his tube for years, yep he's already had it 2 years now and counting. Do I hate it? No, I don't. I hate him vomiting, but I love his tube. It saved his life, I believe that 100%. Do I wish he ate "normally?" Sure, of course I do.

All in all, he is a normal, sassy two year old who happens to eat differently. He makes me laugh everyday with what he says. He is so funny and there is no way I could love him more. If you have any questions, please ask.

Here are some pics of Noah after his g tube surgery and in the NICU with his first feeding tube.

1st hospitalization

We were admitted to our local children's hospital September 11, 2009. Noah just turned 3 months & weighed in at 7 lbs. They told us we would probably be there 5 days while they ran tons of tests trying to figure out why he was refusing to eat. He had an Echocardiogram that showed he had a murmur and a PDA & PFO. This won us a ticket to a cardiologist, but wasn't a reason why he wouldn't eat. As we got settled in our room, people were flowing in naming things like cancer, reflux, diseases I never heard of. It was overwhelming & scary.

Next we met with a dietician. That was fun. She read over Noah's chart and said, " he needs to eat more." he was serious. That was her only answer to help us. No shit lady, ya think?! My husband looked at her and said "get out." ha which is funny bc he is so calm & then he's telling this lady whom we never met before to get out she wasn't going to be on our sons team. He told Noah's primary dr we didn't want her back & we never saw that dietician again.

We meet with the Genetics team next. He thought Noah might have Cystic Fibrosis because he was so small and not gaining weight. I told him he was small bc he won't eat enough. So they tested with a sweat test and lo and behold it was negative. So he drew vial after vial after vial of blood, so much so, they had to do it on different days. It was heartbreaking to see my tiny baby being held down, screaming until he was coughing while they did heel prick after heel prick. The next day they needed lots more blood and called in their neonatologist to draw from a vein, this was much easier and faster. After all the bloodwork, he was "normal" in all his testing. still not 1 answer.

Gi was next. He had a pyloric stenosis u/s, normal. He had a swallow study, normal, he had an upper gi, showed reflux, but that was all. He had a gastric emptying scan, showed a slight delay and significant reflux. He wouldn't be scoped until July 2010, which was normal. Again, no answers.

We met with Pt, Ot. His suck was normal when he did eat, Pt determined he had low tone. We were sent home with an order for at home PT. Still no answers to feeding.

We were still waiting for endocrinology to come in, after their testing & waiting weeks upon weeks for testing, all things were in normal ranges.

After 6 days in the hospital, we didn't get ONE answer why. Not a one. He had reflux, but other kids get reflux and eat. Why won't mine? We were frustrated and the only option the hospital offered was placing a NG tube, letting him eat orally what he would, then tube the rest. Their theory was, use the tube a few weeks, he will gain weight, get stronger and would grow an appetite. I said no, thats not enough. There is something wrong, find it. I felt, at this point a huge failure. What kind of mom can't feed their babies?! What am I doing so wrong. We bought millions of different bottles, nipples, changed formulas, feeding positions, a strict schedule, no schedule at all letting him clue us in like normal. Nothing and I mean nothing helped. I admit, I cried, cussed, screamed, even threw bottles. It was horrible. Horrible. It sucked. I can't put into words how much it sucked. there wasn't a day that went by I didn't cry, beg the eating gods to help. Ask why a hundred 1000 times. Noah was shrinking before us. Bones were sticking out, he looked like a damn skeleton. I begged his pediatrician for more referrals, someone had to help. We were exhausted, spent, stressed beyond words. Our relationship sucked. We fought a lot, we were both on edge and we can't take it out on Noah of course, so we took it out on each other. We would spend hours a day trying to get Noah to eat. He needed calories bad, he wouldn't eat. Albert would get 1.5 oz down him, it would be a party then he throw it up and I'd yell at Albert. You fed him to fast, it's your fault. It wasn't, I was scared and we all knew something was wrong Not the best for a marriage I will tell ya that. Our world was breaking apart, this is not what is suppose to happen, this isn't how it should be.

I tried getting Noah into our state early intervention, he didn't qualify. He wasn't delayed enough in other areas to qualify. I was livid.

I made yet another appointment with the pediatrician and said Noah needed a feeding tube. I had had it. Noah needed nutrition. If that meant me getting over my high horse of being a horrible mom who couldn't feed her baby and get them to grow, so be it.

Noah's consult with his surgeon was October 1, 2009. She looked at his records, testing, results and said, " he
needs a tube, I agree." to be honest we were scared she might say no, then what? Watch our baby starve to death, no, no way. Noah was scheduled for a Mic-key feeding tube and a fundoplication, surgery for reflux which that was a whole other story. He would get his tube placed in his 2nd hospitalization October 12, 2009 at 11 am.

Noah's Story...birth

Since this is all new, I should start with Noah's story......this will be long, hang on.

 My pregnancy with Noah was pretty normal--appointments were always ok, but still, I worried as many new momma's do. I made it to my 36 week appointment and thinking we were just going to do the normal measuring, weight, and "do you have any questions?" chat. Our OB, who I am SO beyond thankful for, said I was measuring small, around 30-32 weeks, BUT there could be many reasons why, the position the the baby, he was more towards my back vs front kinda thing, but my heart sunk...I knew something was off & here she was pretty much in my mind confirming that. She recommend and U/S to check growth, he was still moving well so she wasn't too concerned. The scheduling office couldn't get us in until the following week, but my OB worked her magic and got up in that Friday, the next day..humm..? ok....It was very stressful waiting. I went home and was so still, counting Noah's every movement. The next day was June 5th, my husbands birthday & u/s day. My appointment was at 2pm, funny how you can remember these things, he was going to meet me at work and we go together. We went into the u/s nervous, but ok. The tech measured, measured, remeasured, said "humm....let me go get the dr." I immediately started crying. The tech doesn't get the dr for no reason. In comes in a doctor who I have never met before in the practice, she said in a super calm voice, "your baby is measuring smaller than we like, we would like to induce you." I asked when, thinking in a few days, she said "right now, I want you to go straight to labor and delivery." I lost it. I wasn't ready, we JUST moved into our house, we didn't have any bags packed, we had every intention of coming home that night not being rushed to L&D. She continued calmly, "Sometimes babies grow better out than in, we need to get him out to keep him healthy." Noah was measuring 4lbs 2 oz and 17" on u/s, he should have been around 6ish lbs. They said he was the size of a 32 weeker. Crying, my husband and I got our stuff and walked to the L&D which was just across the road. I called my mom, who didn't answer the phone, I think I called my Sister In Law who got my mom and I am sure I hysterically told me they were going to induce and she had to be there, like she wouldn't, but I was freaking out. My husband got his mom on the phone and they all were there what seemed like minutes.
 We got to L&D and they said they would start Potocin in the AM to relax...umm ya hello..not gonna happen...remember this is around 3 pm now....we just found out something was wrong with our baby, how does one just relax? On a side note, I choose the hospital Noah was born at bc they had a level 3 NICU, "just in case." odd hu? Ne way, they told my family they could go because nothing was going to happen that night, just be ready to be there tomorrow, it was going to be a long day. I was hooked up to the monitors and listened intently to every little THUD, THUD, of his tiny heartbeat. I remember the nurses telling me to sleep, but I couldn't, so they gave me Ambein to rest. This is where the story gets crazy---bc I don't remember a lot of it, there are gaps in my brain where that info should be. I remember the nurse, who I loved, come back and telling me to roll on my other side bc Noah's heart rate would drop very low....after doing that in my drug induced haze from Ambien, the next thing I knew was I was being RAN to the OR for an emergency C-section. I do not remember being pushed through the halls, nor do I remember where Albert was during all this. I was o-u-t cold. I would wake up crying and shaking and the nurse would say it was ok, it was ok.....next thing I know, I was in the OR, prepped and they were getting ready to pull Noah out...all I remember was being cold, so cold...saying I'm sorry to Noah, odd....and shaking. That OR was so cold....I had no idea where Albert was, the nurse was holding my hand and saying here comes your baby, what??? I didn't hear a baby, I didn't hear anything. It was quiet, where's my baby? Finally my husband came by me and  was white. His face was white....he was a ghost, quiet, no words, but I remember his eyes, something was wrong. He wouldn't say anything to me and I don't think I even asked about Noah, how terrible hu? I was so drugged I couldn't. I would be awake, then just pass back out. It wouldn't be until the next morning I asked about Noah.

Well, Albert was white bc Noah was blue, and non-responsive, he was a limp rag doll. He didn't make a sound, he wasn't breathing. I didn't know all this until the next morning. He was in the NICU and we went to see him there. He was tiny, but had big feet! He was in an O2 tent bc he had pneumothorax. he has collapsed lungs. You could look at his tiny chest and see one half was completely sunk down where his lungs weren't inflated all the way. He has IV's and people were all around him. They said he was ok, and they rushed to delivered bc his heart rate dropped dangerously low and wouldn't come back up, he was in distress. He had his cord wrapped around his neck 2 times. He was small and couldn't keep his temp up so he was in an incubator for 5 days. He really did well in the NICU and was moved to Critical Care by day 6, which is a step up from NICU, and we went home on day 8. He didn't want to eat well in the NICU and it took 30 mins to get 30 mls down him. I didn't think much of it, bc he was smaller, IUGR, and he was learning. We went home and things go worse, much worse. He never wanted to eat, ever--he never seemed hungry, or cry for a bottle. He never got nursing, so I pumped. He hated to eat, just hated it, cry and arch...well reflux, we will get meds and he will be ok. Was on med's for weeks and nothing, he was tiny. Gaining weight so slow. He weighed 7 lbs at 3.5 months and his NICU follow up group wanted to admit him bc he eating about 10oz a day--on a good day....10mls here, maybe 40 mls there....it took hours to get that down him....something was wrong.

Will continue his hospitalizations on another post.

I want one too!

Ok, so I have seen a ton of blogs and I figured, what the hell, I want one too; an easy way to keep tabs on everyone. So, here we go, a perfect place to whine, cry, vent & celebrate our life with our boys. I will have to make a post about our unexpected life with Noah, {I mean, who knew kids didn't eat???} and of course, to share stories on Brock and his developments. So, lots to do, I am going to get started......