I'll Take Puke Any Day

The other day I was scrolling through my Facebook feed and  I just kept scrolling past post after post after post of people I went to school with. It was all about how awesome their jobs were, getting new jobs, out partying all night, the new loves in their life be it cars, animals, people, traveling to other countries [and not just to the grocery store :) ] For a moment I thought: "What the hell happened to me?" Why wasn't I "living it up." When I was younger I always told my mom I was going to marry a brain surgeon and live on the beach and soak up the sun while he worked. Ya, that didn't pan out either. Shocking.

Here I am married, 29, 2 kids stay at home mom. Not what was in my plans.

Plans change. Life happens. Happen to not marry a brain surgeon, but got married and then that's when life really started changing. We got married in July, got pregnant in October. Noah. My tiny lil 4 lb Noah. He came in the world with a BAM earlier than we expected and threw us for a loop. I remember after his dramatic birth, he was in the NICU and I wake up in the middle of the night and Alberts not in the room w me. I FLIP! I think something is wrong with Noah and I run as fast as I can to the NICU...{ok waddle as fast as a c section momma can go.} I get the the NICU, ask if my son is ok, they look at me like WAIT CRAZY WOMEN! Tell them my name, scrub in, get buzzed through the door and go to where Noah's spot was..He wasn't there. My heart SUNK. Then a nurse goes, "we moved him over here." I am sure she could sense the panic in my eyes so thought she should intervene. There is Albert, holding Noah, just rocking him and staring at his tiny fingers and his tiny face with all his wires at 3am. It was a good moment, but then I fall to tears and tell him to NEVER leave and come up here without telling me....then I had to sit and rest...then it was time to pump. sigh. Can 't win em all. BUT in the moment, all was ok. The boys were ok. Noah was content being held and snuggled by daddy.

Then we get home with Noah and all hell breaks loose and you all know how that story goes. Again, not what I planned. I planned on Noah eating, thriving, me being able to go back to work....'normal.' Normal never happened. Then after Noah's 1st birthday we decided to try again for a baby. Well BAM, happended super quick. Brock. oh Brock. He completes us. Corny I know. I'm gagging as I type it out. Thanfully, Brock's birth was very normal and he got discharged with me, an odd feeling as a nicu mom. Brock's been very healthy thankfully.

So, when I read other friends posts and they are talking about how amazing this beach is, or how they bought this new car, or how they got a new job...in another country, how they can just get up and go without planning, thinking, for a moment, I get jealous. When I am sitting with Noah's barf in my hands, ya the beach sounds inviting. When Brock comes up to me and says "HI MOM!" in his sweet voice, THAT'S what I want. Nothing can come close to the moments I have with my boys. When Noah comes up with something crazy and just blurts it out, I crack up, they make me smile on the worst days, even if they are causing that worst day. I wouldn't want to exsist without my boys. I can't imagine how dull it would be.  I wish Noah's GI tract could wake up and realize food is good and digest at the right speed, sure I wish when we plan to go some where, as simple as Kroger, I didn't have to plan around Noah's feed, bringing a puke cup and praying he doesn't barf in the store. I wish I could take him a get him a Happy Meal and he eat it like a typical kiddo. I do wish when we are out and it's time to feed him they wouldn't stare in disgust or just stare at all. If anything, I'd rather you just come up and ask what I was doing vs looking at him like you might catch a G tube. I assure you, you won't.

My life isn't what I planned, but it is what I want. I'll take puke any day.

Feeding Changes and Swapping Formulas & of Course....Puke

So, semi quick update.

Noah has been having a rough time tolerating his feeds since Dec. not sure what changed, but he just can't seem to tolerate much of anything. No matter what or how we feed, it just comes back up. After talking to Dr's on his team we have decided that blousing Noah is just not in the cards for him now. Since he has his motility issues and volume issues from his nissen, doing small feeds of 4-5 oz are making him uncomfortable. We discussed in depth what is causing his issues, his small stomach, and his delayed emptying and his messed up nerves in his stomach its just a mess. It doesn't seem to be getting better. We were running his bolus over 45 mins and he would clearly be uncomfortable during it. He also managed to puke while we were at the dr, they seem to think when I say he pukes, he "spits up" No, He pukes his entire feed. So, 'luckily' they got to see him in action. I don't know how many times I have heard "I sick, my tummy feels bad." I know our issues are small in comparison to some, but it still sucks to hear your kid say they feel like crap from eating.

I'd love to say this is going to get better, we will be able to control his vomiting and he will stop vomiting and start eating, but it isn't looking promising at this point. Honestly, I am OK with it. It's so our 'normal' now, seeing him eat would be so weird, amazing, but weird. Even Brock will come up to him and rub his back and say "OK Noah?" {Are you OK?} Brock will, Lil devil, even get a cup and make puking sounds in it like Noah. sigh.

We did trial Peptamen Jr.which isn't as broken down as the Elecare he is on and he does SO much better on it. yay, there's puke, but NOT NEARLY what the Elecare does to him. Which seems so weird he would tolerate the Peptamen over the very elemental elecare. So, I was on/off the phone today for 3 hours trying to switch his milk. It's an annoying process, WIC covers X amount then home health will pick up the rest, so it's just back and forth from Dr's faxing orders to both places, getting WIC to change his order then, WIC then has to fax to home health {HH} that they will only cover X amount so that insurance will pick up HH tab. It's insane. lol I am very thankful it is covered, it turns out to be $900.00/month....it's crazy! It shouldn't cost that much. It's like a mortgage payment.

All in all, he's a happy kid. He will puke then jump up and go play. It's his "normal" so it doesn't slow him down. We are also weaning him off his Neurontin as it doesn't help and no reason to keep him on it. So, again, we are going kinda back wards with the continuous feedings, but it is what it is and he is happy and less pukier....{is that a word?} At any rate, here's to less vomit.

 

Feeding Team Appointment, Food and Puke Journals and Random Thoughts

So, Noah had his 3 month follow up with the feeding team at Cincy. We go every 3 months for them to see how is doing. It's a long appt. typically at least an hour and half to 2 hours. LOTS of waiting. He lost one pound, but is a very tall 42." he is crazy tall. His grandpa is over 6' so, he is might be that too!

Well, they weren't happy he lost weight. Yes, he is not Failure to Thrive {FTT} anymore thank goodness, but still weight loss is NOT what they want. Yes, he was a bit chunky too a while back, but he has had a significant drop in percentiles since then...just in 3 months he went down 5% Eventually, if we continue at this pace, he will run out of his chub. So, they think with his throwing up, which STILL isn't under control, is making it much harder. Add in his motility issues and it's a bit more harder. His motility DR and GI DR want him to start back on neurontin {for his motility and vomiting issues}. So we will start that today, then they want us to meet with his GI in 2 months as opposed to his normal 3 months. We were trying to get his blend in all during the day time vs having him hooked up at night to his pump. Well, apparently that isn't working. They asked me to keep a 3 day food and puke journal...which kinda annoys me. I know what I put into his blends...I can add calories. I am not sure if they think I am not calculating right or what, but as they wish, I shall annoyingly document every barf, gag, retch, feed, bolus, night feed and then they can go over it. His Dr he say yesterday thinks that if we write it down and let them look they may see what is causing him to throw up...We have been analyzing his diet and barf 3 damn years now, so they want 3 days of journaling to see if they see a pattern???? Good luck. {We saw Dr. Leslie not his normal GI} that kinda bugged me. Also, want to switch him to Peptamen instead of Elecare. Sigh. What a pain in the ass that is to switch home health care order. they gave me samples, bc I don't want to have to go switch it all and it not work for him. Then they said there was no point in coming to the feeding team anymore since he really isn't eating or near eating. Ok, so we will see Dr. Pentiuk in the GI dept vs feeding team. Which is ok, but it kinda sucks hearing them, saying "well, we don't know what to do anymore bc nothing works, so we are going to pass you along now." Story of his freaking life. I don't understand how he can have SO much testing done and the only thing is his motility that comes back abnormal. Not that we want something wrong, but we all know he has SOMETHING going on . It's getting to be very, very annoying. I am very tired of puke, yesterday was 4 times he threw up. She mentioned another GJ, but we really don't want to go that route unless he loses more weight and we simply can't keep his weight up with regular G tube.

We always joked at home that "hey he might have his tube forever." But hearing a dr say it might happen, kinda dampness the mood on it some. It's is the end of the world if it turns out true....not at all. It could be worse, much worse, but no one wants their kid to eat by tube. we have long long learned we are on Noah's time. Meaning, he is going to do things when its good for him. He crawled at one, didn't walk until 2. he did these things, but very delayed. So, we don't give up hope he will eat orally. He may one day and that will be freaking amazing if he does, hell brings tears to my eyes just thinking about it. lol I can't imagine it, but at the same time all four of us sitting down and ALL of us eating together is like a dream.

I already worry about if he has his tube going into school. It's going to make him stand out. I worry about him puking in school. he will probably be made fun of. Lets be real, kids aren't always nice. I worry about this now, crazy as it seems. I have read some good and bad things about tubies going to school. It makes me anxious. Questions like, "Will be able to 'eat' at lunch with his friends." "will kids make fun of him if they see him being tube fed?" "Will he have to go to the nurses office to eat alone and thus making him more of an outcast?" No one will feed him as I do...kwim? I got it down, I know if his stomach isn't emptying right and we have to wait longer to do a feed...will the person feeding him vent him and see?? I have no idea. Probably not. Will they then feed him, he is over full and puke all over? I dunno. Will he even have his motility issues and volume issues then?? I dunno. I hope not, but who knows. It makes me want to keep him home and never let him out. I know, I know, this isn't this right choice and he needs to get out, but these things make me queasy just thinking about it. No parent wants their kid to be out casted or bullied or made fun of, with Noah having his issues, it will easily make him stand out. I have time, he might even have his tube out by the time school comes...maybe this won't even be a worry in 2-3 yrs time. I hope not, but in reality we r 3 years in to tube feeds and puke, that it's not looking real promising.

Though through all this, he is one happy, sassy, funny guy. He has an amazing spirit, if I can say so. He is always so brave and tough and nothing slows him down. He is so much stronger than I could ever be.

Day 2 of New Meds to Help with Vomiting Update

Nothing too crazy is going on.....well maybe kinda.

So, we are working with two new meds to help Noah with his vomiting, Zofran and Periactin. Zofran is well known for being used to prevent nausea and vomiting. The Periactin is an antihistamine, but has many off label uses, one being that is helps with the interrupting the signal from the brain to the GI system that tells it to vomit when stimuli are introduced (a gag, cough, sneeze, etc.) We were doing them one by one bc his feeding team Dr's didn't want to do both at one time bc we wouldn't know what med was helping or not. Well, it didn't help him. So I called & asked ab using both of them, bc many of his tubie friends said they used both to help with their kiddos and it really seemed to make a big difference. So we finally got the OK and a plan in place to use both meds daily. We started this yesterday and so far NO PUKE! Zero.....He did gag when he woke up this AM, but otherwise he is tolerating 4-5oz boluses of a blended diet and doing really, really well. I don't want to jinx it, but it's been fanfreakintastic! I would LOVE for this to be our magic potion that helps him. It does seem to make him a tad more tired than his usual self and I am not sure if that will level out or just a 'side effect.' I'm not talking lethargic and laying around doing nothing, but he certainly wants to "calm down and watch TV" more than he should. I really hope it levels off, but it's kinda a catch 22....do I leave him on it vomit free, or a lot less vomit and have him a little slower than his norm, or take him off and let him puke 4-8 times a day...I am going to go with a little slow and just hope his little body adjusts. I really don't like to have him on meds to be honest, I'd rather him not take them, BUT getting him to feel good and not vomit multiple times a day, it's worth it. So we are on Day 2 and going well. It's almost time for his 3rd feed of the day so we shall see.

As you all know, his stomach emptying is hit or miss some days. Some days he will do awesome and empty what would I would call "good for him," other days, like yesterday he was so damn s-l-o-w. I know viruses and colds can slow down digestion, but he isn't sick. I don't know why some days are better than others. Anyways, we are waiting for the call back about setting up his Manometry testing. {Here is a link to info on that, http://www.cincinnatichildrens.org/health/a/antro-duod-mano/} We hope to set this up within the next 2-3 weeks. His motility Dr is out of town, so we are waiting on him to reok it and set a date to do it. Hopefully that can give us some more answers on his tummy too.

We are still waiting on his microarry testing, the one that wills how us how his little chromosomes are, if anything is a little off or missing. It's been 3 weeks and I am getting antsy. He was also tested for Fragile X and that came back normal. So we can mark that off. As weird as it sounds, I hope something comes back with his microarry. We know something is going on with him, but for a long time we fought against having him tested/doing tests, I really think it was denial, "oh he is ok, he will grow out of it, blah, blah blah." Yeah, now we are over it. We know something is going on, we are 3 yrs into this and are beyond ready to know what is up, why he has some of his delays, vomits, low tone, wont' eat.....the list can go on..lol So, if we get an SOMETHING from his microarry maybe it will help piece together the puzzle that is Noah.

A little Brock update, he is crazy and wild and clingy. Man, this child is demanding. Noah was SO easy, even with his issues, and Brock is much harder. he is clingy, fussy, whines, even at 18 months LOVES to be held. Oh, and the temper tantrums! O-M-G! If you tell him no to something he wants, not matter what is it, falls on the floor, tears, kicks....the whole 9 yards! DRAMATIC. We can't help, but laugh at him. He is so funny and as Noah says "Nothing, but trouble." He is something....whoosh! lol Noah was NEVER like this. He was content with playing alone and hand to heart, not that whiney even at 3....Brock is one minute happy laughing, the next screaming "UP UP UP! MOMMMMAA UP" and mad at everything. It's been a ride..haha. He is talking SO much it's crazy. He is starting to put words together, he says "I dunno, I love you...and his new favorite, "NO MINE NO NO NO!'' aren't toddlers the best. It really is neat to watch him grow and develop "on time" Noah was on Noah's time and was slow to do things, Brock has always been early...walked at 10 months, has currently 14.5 teeth...{This bottom molar may be the death of me} Got his 1st tooth at 4 months...he was early at most things, or maybe it's normal and after Noah seems really quick. In our house, he is fast, lets just say that. lol. We are still trying to fatten him up some. He is coming close to 22lbs and 32" He is so tiny, he truly is, and coming from past FTT kiddo, it wasn't fun or easy.....BUT he eats and likes it most days, so I will take him small and eating and gain a little slower vs another tube.

So there ya have it, an update!!

"Your not trying to get Noah off his tube, you must like it"

Well, I have had a "friend" tell me some things about how I should "help" Noah. So this blog is going to be to clear up this "friends" questions.

First off, are you freaking kiddin' me??? You have no idea what goes on daily at my house, at doctors or therapy appts. What would possess you to tell me how to raise MY child??? You really have struck a nerve, but let's answer your dumbass questions/responses.

1.) "Your not trying to get Noah off his tube, you must like it."

Your right, I am NOT trying to get Noah off his tube right now. He is no where NEAR ready. He has no idea how to eat..... chew, swallow, ya know.... the basics.....it's scary to him. My goal right now is to get him to TOLORATE feeds. Meaning, not puking, retching, gagging, being miserable. Make it a happy time. Not "oh this makes me sick," which is his mentality right now. All he knows is food makes me sick. How about this??? You throw up EVERYDAY, MULTIPLE TIMES A DAY, REFLUX since BIRTH, THEN tell me if you would wanna eat. You wouldn't. Yeah, I do LIKE his tube.....He would have starved to death long before now & yes as dramatic as that sounds he would have starved himself. Which brings me to point number.......

2.) "No kid will starve themselves."

No HEALTHY child, with any medical issues would. Your right. Noah obviously has something going on, which we are hoping to figure out soon. I have now found out many kids will indeed starves themselves when there is a medical issue at play. Who knew right??? I didn't. Thanks Noah for that lesson.... :)

3.) "You need to let him get hungry and quit feeding him all day."

Kinda brings me back to point number one. You know the saying "you don't use it you lose it?" Yep, kinda plays in here. He doesn't KNOW how to EAT! Even if he knew what the hell hunger was, he couldn't DO IT! He HAS NO IDEA WHAT TO DO! Noah also has volume and emptying issues, which is going to make it even more challenging when the time comes to get him to eat....Questions come up such as, will he ever be able to eat enough to grow and thrive? I have no idea. Will he ever get his tube out or will he always have to supplement with it? Time will tell. If I didn't feed him everyday, he wouldn't grow...kinda a problem.

4.) Your a dumbass.

Don't tell me how to "fix" my kid. He's not broken. A little glue isn't going to "fix" it. What makes you think you can come up with ideas to make him eat? If his specialists, regular doctors can't & more importantly ME, than you sure the hell can't. You have pissed me off. Thanks for that.

5.) Know what truley matters to me?

He is happy and healthy. That's it. Not you or your stupid ideas. I don't want your advice. Thanks anyways.

Update--Been a while

Wow, been a while since I have posted. Not too much going on. Noah is still the same, our goal is to get him all on a blended diet as he doesn't tolerate night feeds for some reason, no matter the rate, or g or j fed. He wakes up a lot, like 10-20 times when he is fed at night, vomiting, crying out, rolling around. Clearly uncomfortable. We tried is rate at all speeds & he just doesn't tolerate it. Which would be great to cut night feeds if A.) we could get in what we need during the day w/o vomiting it up and B) getting him to digest it so we can get the volume in. He is still holding steady at 34lbs, which is good, but still no weight gain, he may go up or down a few oz, but typically he is 34. His GI isn't impressed with no weight gain as its been over a yr at that weight. It seemed he gained and gained fast and now nothing. We have tried increasing his calories to 1,600-1,700/day and still nothing. It's really crazy. I am not sure why he won't gain anymore. He is having a hard time in the heat--he over heats fast and will puke and gag....and puke and gag....then more....sigh
  We go to genetics on the 18th, so I am excited about that. We have gone back and forth trying to get him in and they kept saying he is ok, he doesn't need to go, blah, blah. He is 3 now  and we have been dealing with who knows whats up with him for a long time with no answers. No one knows why he won't eat, pukes a lot, doesn't digest, his low tone, his delays....Yet, he "looks ok" so he gets blown off. Frustrating. So I am really hoping this genetics dr has some ideas on him. There is SOMETHING going on...Hope she is the one to put the pieces together.

Brock is a crazy man and funny as ever. He is trying to talk and his new word is bubbles. Really cute. He has finally gained some weight, but is still a tiny little man. He eats well for the most part, last night for dinner he ate 3, yes 3 small pieces of pizza and half a pear, then he had some cottage cheese about 2 hrs after, a huge bowl. I didn't think he would eat it, but he down it and said "want more......eat" lol he just is a slow gainer. He is cutting a bottom molar and damn, it takes a LONG time to get it in. I forgot how long it takes to get teeth in. He has 10.5 teeth thus far! He is really SOOOO much different than Noah was. It's a nice change. He mimicks a lot and Noah thows up into a bowl he will go to a bowl and lean over it and make gagging sounds too. sigh. Not exaclty what we want. http://www.youtube.com/watch?v=LbndG5U5EBw&list=UUNC6Em8zLLu0PWpo_MdAwAw&index=1&feature=plcp Brock saying Bubbles.

I will update after genetics!

Just a Noah update & Manometry Testing coming up

So, I haven't updated little man's blog in a while. Man, he has a lot going on.

Let's start with EI.

He is getting ready to age out---onced they hit 3, you gotta move on out. We had him evaluated by the county preschool program. He did fairly well. We do not know if he was delayed enough to get in or not yet. Our meeting with them is coming up at the end of May. Honestly, even he got in, we probably wouldn't be sending him. While it's great for social skills, which he needs of course, it's just a lot of time away. It's 8-3ish Monday-Thurs. They really don't focus on feeding, his biggest issue of course--His speech is pretty good....he tested in Dec, at a 3.5 yr old level. I hear speech is what really gets a kid into their program, as feeding doesn't really effect his learning in a school enviroment. So, what we will probably do is his current SLP/Feeding Therapist sees kids outpatient at Kosiar and we will keep him going 1 hr a week with her. He knows her, really likes her and she knows him.

His birthday is less than a month away! June 6th...crazy. 3! It's been a long, tough road at times, but he is pretty amazing.....most days :) He is getting a little sassy though!

Coming up closer, May 17th, he will be inpatient for motility testing. He will be having an antro-duodenal manometry. "Manometry is the measurement of pressure or contractions in the small intestine. The purpose of antro-duodenal manometry is to determine how well the antrum and the duodenum work together." So, basically to see how his stomach and intestines work together....it is an overnight stay at Cincinnati Children's and he will be put under GA to get all the probes placed then we will be sent to a room to hang out while they do the testing. He will be connected to a small pump, which pushes water slowly through the tube and into your child's small intestine. This in turn is connected to a computer.  As the small intestine contracts and tightens around the tube, it stops water flow. This contraction is recorded on the computer monitor and gives the doctor a pattern of activity.

Sounds fun hu? sigh, no, really dreading it. I hate having him put under, I hate making him go through things that might not show an answer. The botox was a fail, I hate I put him through that. I am afraid this will be the same. I really went back and forth on even doing it, but Albert and I think it may give us some answers that 'could' explain things. I really think his not eating is medial. There has to be something going on GI wise that is causing this. While I am happy things come back normal, it sucks having no answers to anything almost 3 years into this. I am going to push again for genetic testing. We keep getting told no he doesn't "look a kid with genetic issues." really?? That's just silly. There is SOMETHING going on. It's beyond time to figure it out.

Trying to think what else, he has a ton of OT and Feeding appointments coming up--trying to get the most in we can before his plan runs out. Oh, we  have restarted allergy shots with his new vials in hopes that helps with the gross congestion. Feed wise--we are working with the feeding team at Cincy and the dietician on a new blenderized diet for him. He would just barf up elecare all day---we would thicken 4 oz of elecare and right after he would puke and just say "im sorry mommy, I sorry." Heartbreaking. He does do better on a BD, but will still throw up. Of course my goal would be to get him on a full day of BD and not being hooked up to his pump all night. That would be a FREAKING dream. He has been on his new BD for about 3 days with only ONE SPIT UP! like a real just he burped and up come a tiny bit. He was even impressed! He said "mom, not throw up!" lol Poor kiddo. It has to be miserable to feel so bad with food.  He is doing really, really well, fingers crossed. We have cut a lot of the fats that use to be in his blends, to help with digesting better, seems to be helping. He is up to...ready for....... this 5oz every 3 hrs!! It's pretty amazing for him. I just hope he keeps on this path. I LOVE making his food as dumb as that sounds. I like the calorie counting, the figuring out healthy junk I can throw in, Silly I know. His weight is good and he is growing well, he is is full of energy and spunk....what more could I want?