Thursday, July 11, 2013

5 months

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wow. 5 months already. i know i am going to say that every month, but i still can't believe it. it's been a hard month. ben has been through a lot. we have all been through a lot. last week sean went to wyoming with his dad and i honestly felt like it was the first week all over again. for some reason ben decided he didn't want to sleep good anymore. or so i thought. now i see that he had been getting sick this whole time and we were bundling him too tightly at night and he was too hot. he kept waking up. also i am sure his throat hurt and laying flat was causing him sinus pressure. anyway, now that we know he has a cold and has been feverish, we have dressed him in a onesie and a light swaddle and put him at an incline with a fan right next to him. thank goodness for the rock and play. i kind of feel like we back tracked since he has been in his crib for a couple of months now, but maybe when he starts feeling better we will try the crib again. i could ramble on forever so i will try to just give some 5 month stats:

- these pictures are blurry because ben officially does not hold still and he grabs anything he can get his hands on. hence the first picture that looks like he took it of himself haha. he is always grabbing anything i am holding.
- he weighs 15lbs 12 oz.
- not sure how long he is right now but i know he is tall for his age still. he is quite a bit taller than my friends babies that are the same age.
- not sleeping as good as he was but before all the sleep problems started a week ago he was occasionally sleeping through the night. i will never ever take those nights for granted again. even him sleeping til 4 am now makes me giddy inside. it's the little things haha.
- he goes to bed around 8. he takes 3 naps a day. has to be swaddled for them but he goes right down as long as he also has his lumineers playing on the ipad and a fan near his face. he naps in the morning around 8-9, again around 12-1, and 3-4. it depends on the day when those start because he always wakes up at different times. he sleeps for about an hour and a half each. sometime his morning nap is longer though and then he takes shorter naps the rest of the day.
- i think another reason he wasn't sleeping good in his crib is because he can roll over now.. and since he is swaddled he gets stuck and can't turn back over. he can't roll over in the rock and play so i do think that is why he is sleeping better these past few nights. i don't know how i am going to wean him from the swaddle. i have tried to stop but he just sobs. it is the saddest thing. it's not his normal, screaming cry. it's like a sad, quiet, sob. like he is so scared and doesn't feel safe. it broke my heart. i have heard of this pajama outfit called the zipadee that supposedly was invented to help wean from swaddling. i will have to try that. funny how the only thing that could get him to sleep when he was a newborn is now becoming the reason he keeps waking up at night? sigh.
- he is drinking about 5 oz every 3-4 hours. since he has been sick though he only wants 3-4oz. if even that. i hope he gets his appetite back soon.
- this leads me to a whole other thing... but i will put that story at the end because it will be long and i am sure no one cares to read all this anyway. it's for my own personal record.
- he loves moses more than anything in this world. i am not even joking. he gets so excited every time that he sees him. the other night he was screaming during his bath. since he has been sick and had a cold he has hated bath time. he screams through the whole thing. i got him out last night and called for moe. ben immediately lit up. got the biggest smile on his face and started laughing. we chased moe around the house and ben was giggling harder than he ever has. it immediately made him stop crying. he loves to pet him and be near him. i think he loves all animals but none so far have made him light up the way moses does. i love it.
- has been swimming and loves it. i think he mostly just loves watching all the other kids.
- loves his jumparoo.
- always wants to be standing. i think this kid will walk before he crawls. he gets angry if you don't let him stand. which makes it a lot messier when he pukes. lets just say a lot of laps have been soiled because of him.
- he is now on 1 full tablet of prevacid a day and 1.5 mL of zantac twice a day. prevacid is not cheap. sadly our insurance only covers like $100 of it and it retails at $313. yeah. its like $10 a pill and more than half the time he vomits right after taking it. it's awful. we thought once we hit ben's prescription deductible of $500 that they would pay 80%. but prevacid is a tier 3 drug and so they only pay half. so i guess yeah.. it's less now. but still $150 a month. and it doesn't seem to be working.. but i will once again talk about this at the end.
- hates, hates, hates the car now. it's sad. he used to like it but i think it is just too hot right now in utah for him to enjoy being in the car. i have hooked up my ipad so he can watch movies but it only helps for so long. poor kid. i constantly have to reach my hand back there and hold his so he will calm down.
- still hates church. but we did have a week or two that we made it for all 3 hours and he wasn't too bad.
- has tried peaches and sweet potatoes. loved them both but puked them up. we decided orange puke wasn't that fun and so we are going to hold off a little longer on solids since he has so many issues already.
- scratches himself all the time. we can't keep his nails short enough.

we sure do love our benny. it has not been the easiest 5 months. i know i probably sound like i am miserable. and to be honest? a lot of times i am. but benny's smile makes it all worth it. i love being his mom. he isn't happy a lot.. but when he is? gosh.. it's amazing. he is such a sweet heart. and i know if he felt better he would be so much happier. which leads me to what happened today and why i left out some info in his prepared for a long post. stop now if you don't care about baby puke! just had to warn you..

since i stopped nursing ben because his reflux was out of control, he has only been on gentle formulas. he was so sensitive to everything that i ate, and was colicky, so we knew we had to put him on something sensitive. he started out on enfamil gentlease, which he did pretty good on but still spit up a ton. i know people say all babies spit up..  and everyone always tells me their kid spit up all the time too.. but i promise you if you spend a day with Ben you would be surprised at the amount he vomits.

anyway, enfamil is pretty expensive so we tried a Sam's Club generic of the enfamil gentlease. he did pretty good on that but it had a more yellow tint to the formula and was pretty foamy. with him spitting up all the time it stained everything more. it was so much cheaper but it still didn't solve any of his problems. we tried enfamil AR because it has added rice starch that is supposed to be thicker and help them keep more down. it just seemed like too much for him since you have to use faster flow nipples with that and he would gag and choke on it. we tried a generic similac sensitive and he puked more than ever and it was yellow and stained stuff and was chunky. we also tried similac alimentum which is for cow protein sensitivity but he absolutely hates the taste and won't drink more than an ounce. i was talking with my cousin about this who is a newborn dietician. she told me to try gerber good start gentle, because it digests quicker and supposedly they keep more down. i had a can that was given to me, so we tried it and he did pretty good on it. he started to gain more weight and seemed to really like the taste. he still spit up a ton though. this seemed to be the most sensitive on his tummy though as far as gas and other things go. other formulas seemed to make him more constipated and this one keeps him pretty regular.

anyway, he had been on this for a while and we just learned to deal with his reflux. we went to visit my grandparents in torrey and didn't have time to get ben's prevacid refilled. we decided since it didn't really work anyway, to just try and see how he did without it and just on the zantac. he did awful. he spit up more than ever and his spit up was way more acidic and chunky and he was miserable. we immediately came back and refilled his prescription but it seems like we could never get on top of things again and his reflux was worse than ever. he was having less wet and dirty diapers and i started to worry. i made an appointment with the doctor and just sitting in the waiting room he vomited 11 times in 15 minutes. this was a regular thing for me though. she told us to increase his prevacid to a full tablet and increase his zantac. also she wanted us to go in for an ultrasound to check for pyloric stenosis. turns out he doesn't have that and the ultrasound tech could even see his gerber formula digesting during the ultrasound. so we know it was going to his stomach.

not that we wanted him to have this problem, but a quick surgery would have fixed it and he would have immediately been better. so we toughed it out and just decided we had to wait this out. we did take him into the chiropractor twice and his back was out of alignment. he got adjusted and the first time it didn't seem to make a difference but the second time seemed to help a little more. he now has periods of the day where he hardly spits up but then some periods through out the day are still incredibly bad. like he throws up 10-15 times an hour.

it's been so frustrating. we aren't really being taken that seriously because he is gaining weight. he is not the biggest baby in the world but he also isn't the happiest. i just know something isn't right but we can't  get into a pediatric gastroentologist for 4 months. thats how long the wait is. it's super frustrating.

anyway, let me get to the point of this. since his medicine is so expensive and he isn't really a newborn anymore and his stomach has probably matured a little, we thought we might just try to switch him to a generic regular formula. we just kind of thought that maybe he didn't need to be on the gentle stuff because he will puke it up anyway. costco sells tubs of it for $16. we got a membership at sam's club just so we could purchase the gerber good start gentle there. it's the place that you get the biggest amount for the cheapest. it is still $28 for 36 oz though.

my friend juli had a baby girl 3 days before me. her baby is on the costco brand and does great. it's just a regular formula, similar to Similac Advance or Enfamil Premium. i told her that i was thinking of just trying it out and she told me i could try some of hers before buying it. we have tried so many formulas that we didn't want to waste our money again. i gave ben 4 oz today and he drank it really fast. he seemed to enjoy it. it was a bit foamier than the gerber but he drank it fine. and then a few minutes after he drank it i noticed that his skin was splotchy around his mouth. suddenly it moved all down his neck and chest and then was all over his back. then he broke out in full on fully body hives. he projectile vomited all of it up. i felt so bad but at the same time it all the sudden clicked. every single formula he has tried has been gentle, or sensitive... and all of those formulas have broken down proteins in them that are easier for lactose intolerant babies to digest. i had just given ben regular formula with full on cows milk protein and his body totally rejected it.

i honestly think ben is allergic to cows milk protein. not just an intolerance. there is a difference. when i was breastfeeding him i tried to cut out dairy but it didn't seem to make much of a difference. i truly believe he still has acid reflux because his spit up is very acidic, and i notice a huge difference when he is not on prevacid. however, his pediatrician said that the amount of prevacid and zantac he is on should almost be completely eliminating his spit up. which clearly it had not been.

now don't get me wrong, we have questioned this being the issue before, but he still fits all the symptoms of reflux and he absolutely hates the formulas that we tried to give him that aren't lactose based. so really we just kind of assumed it was really bad acid reflux and we just had to deal with it. but  after today happened, i did some research on this allergy and he has practically every symptom, but since he has been on those gentle formulas his symptoms weren't as severe as they were today.

he fits all the criteria.. he hates eating. seriously. he eats less than his 7 week old cousin. you can tell he only eats because he is absolutely starving and when he gets enough he stops. he is never comfortable. he is almost always stuffed up. he always has these mysterious rashes that we were told was normal but now it all makes sense.

sadly though, he will not drink the alimentum formula. which is also insanely expensive. but sometimes you can get these formulas covered on insurance. i am waiting on a call back from my doctor to see what our other options are though. i still believe he has acid reflux, but i also think he has this and i hope that now that we know we can try and make him more comfortable, and maybe cut back on the amount of medications he is on. poor kid is on way too many for his age and for them not to helping it just isn't worth it. we would rather pay more for hypoallergenic formula than for this medicine that does nothing.

anyway, that is the latest on ben. it has been an interesting 5th month. but i truly think we are on to something and have hopefully figured out how we can help him more. it is so heartbreaking to see your child so sad and sick. i don't know how these poor moms and dads out there who have kids with major illnesses survive. my hearts seriously go out to all of them. ben's problems are so minor to all of those.. and it still breaks my heart everyday. i knew this was more than just a baby who spits up a lot. i know people think i am crazy but oh well. i hope we can help ben more now that we now! hopefully this will be something he grows out of too sooner than later. this is a lot more common issue than people realize!

if you got this far i would be impressed. and i am sure there are a million typo's.. but i don't even care.

p.s. i was planning to write a post on how sean and i are doing and some other things, but this took me longer than i thought.. i will try to get to that soon.


danica + stephen said...

so sweet, its amazing how much their little features change in just a few months. what a beautiful baby boy chloe, love your blog as always. :)

Courtney said...

i'm so glad you are onto something! it's amazing what a mother's intuition will lead you to! hopefully when you visit the GI specialist they will confirm your suspicions and you guys can get ben the food he needs to enjoy life a little more :)
hang in there .. being a mommy is SO amazing. but it can be SO tiring and frustrating at times too. you're not alone!
our fingers are crossed for sweet little ben!

Tara Long said...

Oh man. My heart goes out to you. I cant even imagine what its like for you guys and poor Ben. It's true some people have it worse, but this sounds hard! Although, it seems like you are doing an excellent job taking care of your sweet baby boy. Good job following your mommy instincts! The doctors don't know everything and we have to be the voice of our babies.
One day these will just be memories. It gets better and better.

(P.S. I read all of the post -being a mom also, it's all normal mom talk to me!)

Sam M said...

Have you ever looked into using homeopathy or essential oils to hopefully help give that extra bit up umph for him? If you're interested I can give you some information. My mother in law studies homeopathy and is huge into essential oils. The best part of about them is they don't have side effects.

sasha said...

i just read the post above.

and chloe... i've got nothing.

i don't have any inspiration words or advice to give you. all i know is that i'm extremely envious of you.
and i feel like we need to be friends. like real life friends. and i can't shake that feeling off.

i feel like we are kindred spirits.

i'm sending you the biggest hug.