What else can go wrong? Seriously?

[judecorp]

First of all, thank you so much to drainbead for the presents. We have already cracked open the Wildfire sauce. :)

~//~

I am seriously overwhelmed with everything going on with this baby. It seems like when one thing gets resolved, or when we get over the frustration of one thing, something else is wrong. I am /always/ at this doctor or that doctor. I don't even know what to do.

So the reflux is still out of control. She doesn't always cry when she spits up (she cries sometimes, not all the time), but she is like a FOUNTAIN. She spits up so much I honestly don't know if she's digesting any food sometimes. She soaks numerous burp cloths a day, and when I say soaks, I mean that I could wring liquid out of them. Every time I put her on the floor to play, she vomits everywhere - stomach, back, side, it doesn't matter. I can't take her out anywhere without massive puking problems. I went to a cafe with a group of moms and she kept puking all over the floor and I had to keep asking for napkins to clean it up. I went to a park with a mom yesterday and she puked so much on the grass that we were attracting bees and I had to move.

On top of that, what I thought was normal, runny baby poop was actually diarrhea, which means that my baby had diarrhea for over five weeks straight. The pediatrician thinks this is from milk-based formula and told me that we should try soy formula. I have personal issues with soy formula because it is all made from corn syrup and vegetable oil, and I don't want to feed corn syrup to my baby... but she has been eating the soy formula since Friday. She is no longer having diarrhea but her poop is now really funny-colored and when she spits up, it stains everything. And I want to find a way to get her off the soy.

Because she has been spitting up so much, I took her to a holistic chiropractor. She told me that my baby was pale and had puffy eyes and was not getting enough nutrients. It felt like when I went to the acupuncturist all over again. She read me the riot act about how bad soy formula and corn syrup are (hello, I already think this) and gave the baby an adjustment that is not covered by insurance, of course. She wants to see her twice next week to see if the adjustments are helping the reflux.

The day before her 2-month appointment, I noticed that she had a little rash on her arm that looked like something rubbed it the wrong way, so I showed it to the doctor. She had no idea what it was but thought it might be contact dermatitis. A week later it hadn't gone away and there were more spots all over her right arm and hand. When I went to mom and baby group, the nurse who leads the group told me to call the doctor again, and they wanted me to go back in. (Of course.) When I got there, the receptionist actually said, "You again?" (Because of course what I want out of life is to go to the doctor all the time.) So the pediatrician looked at it, called in ANOTHER pediatrician, and neither of them knew what it was and told me to go see a dermatologist.

We went to the dermatologist today. He looked at her arm and then called in a second dermatologist. (I am starting to see a pattern here.) He said that it was broken capillaries (he used a word that began with P that I can say but not spell so I can't look it up on Dr. G) and that since it wasn't from trauma it could be a vascular disease. He said this so casually I almost threw up. He said it probably wasn't, but we needed to watch it and see if it got worse, and if it did I would have to go to a pediatric dermatologist in Worcester. Are you effing kidding me? The second dermatologist said it was probably just some infant wacky skin thing, but she could tell I was freaked out by tossing around the words "vascular disease." She has to go back to the dermatologist in two weeks.

I feel so completely guilty about the fact that my baby is miserable most of the time because she is either throwing up, or hungry because she has just thrown up. I see other moms in my mom group playing with their babies and their babies are looking up at them and smiling and laughing, and my baby is either crying/screaming or looking off to the side somewhere. Or if she's laughing, she is laughing at her toys in her bouncy seat or at the wall. I feel like somehow I created this baby with all of these problems, and that obviously my uterus is damaged because I lost one baby and now have a baby that is struggling. And of course I feel like we wouldn't have the soy/vomit problems if I was able to breastfeed, and I feel ridiculously guilty about that.

Basically I just feel like a gigantic failure as a mom and I feel so miserable that my baby is suffering. She went from losing 13% of her birthweight to needing to be force-fed around the clock to falling off the bed and needing a CT Scan and admission into the PICU to having reflux to taking three different reflux meds to having massive vomiting to now having a mysterious collection of broken blood vessels all up and down her right arm. We have two doctor appointments next week and one the week after and WHO KNOWS what else will come up between now and then.

I just want to throw up.

Comments

[lunamoonwmn01.livejournal.com]

Jude - I rarely get on here but happened to see this post. I had no idea this was all going on. I am so, so sorry and I am sending loving vibes your way. You didn't ask for advice and I don't like giving it unsolicited, but I gently ask - have you reconsidered donor breastmilk? If you have and it's not an option please ignore. I just have heard some of the Milkshare moms say what a difference it has made for their mega-reflux babies. Also, does the organic soy formula have corn syrup? For some reason I thought it had rice syrup or something somewhat better...

[judecorp.livejournal.com]

We have some donated breastmilk in the freezer. We don't have much so I give her 1-2 bottles a day so we don't go through it so quickly, because once it's gone it's gone. I put a post up on Milkshare a while back (and paid the stinking fee) but no one responded. Now someone else in my mom group is offering to give me some of her oversupply, which is nice, but I'm leery about giving my baby milk from FOUR different women (what's in our freezer is from two mamas, and we got a couple of bags that we used from another friend).

I just don't know what to do anymore.

As for organic formula, organic soy formula by "Earth's Best" contains 'organic corn syrup.' There's another organic formula company called Baby-Something, and their organic soy formula contains rice syrup but it is a Toddler formula (so it has increased calcium and fiber).

And don't worry about not knowing what is going on, this is the first I mentioned anything other than the reflux.

[lunamoonwmn01.livejournal.com]

Here you go: http://www.naturesone.com/soy.php This is what our friends use, and no corn syrup or synthetic oils.

[judecorp.livejournal.com]

Yeah, that's the one that is a "toddler formula" for whatever reason. You can see it right on the can.

[judecorp.livejournal.com]

I mean, on a rational level I know I'm not a bad mom. I mean, I'm not abusing my kid or anything like that, and I keep her full of formula to spit up and burp cloths to ruin. (Did I mention they are all stained because she also throws up her reflux medicine and it's purple? Heh.) I am an endless supply of formula-making, laundry-washing, diaper-washing, baby-burping, clothes-changing (hers, not mine. i leave mine looking nasty.). It's an endless cycle. I haven't showered since SUNDAY. I know that I'm doing all I can.

I just know that if on top of everything else, my baby has some sort of blood disorder, I am probably going to seriously lose it. I have hope that eventually she will stop throwing up (I mean, it happens, and babies stop) but I really am at a loss about the blood vessel thing.

[mollysummer72.livejournal.com]

(((Jude)))
You're doing the best that you can with what you have, which is a high needs baby. She knows you love her, and ya'll will get through this.

[judecorp.livejournal.com]

Sometimes I don't know if she knows, honestly. I am ready to stop going to the mama group because it hurts me to see all of the other babies making eye contact with their mamas and cooing at them. And then there's my baby, the one contorting her body off to the side, vomiting, and then screaming.

Most of the time I'm pretty sure she hates me.

[ladygreyy.livejournal.com]

I'm going to email you something that I was told by someone, and it worked like a charm for her son, who sounds like he had the same exact issues, but it's kinda illegal.

[judecorp.livejournal.com]

Heh. Okay. BREAKING THE LAW!!!

[rockymtnhigh.livejournal.com]

I have nothing to add except to repeat what returntoshore said "You may feel like a terrible mom, but you are really such a good one. A crappy mom wouldn't be so sad and concerned, and wouldn't spend so much time trying to figure out what is going on with her child."

and to send you some hugs!

[judecorp.livejournal.com]

I know that in my head, but it just kills me that she is so sad sometimes and there doesn't seem to be anything I can do about it. :(

[somerandomchic.livejournal.com]

I have heard from some mom who had a babe with awful reflux, who was also one who could not bf, that she added some kind of probiotic to the baby's formula and it REALLY helped. There are probiotics in breastmilk. I think that getting donated milk from multiple moms is probably not a problem.

*puts on child psychologist hat*

Gus does NOT hate you. You are her caregiver. You feed her and comfort her when she is hurting or sad. High needs babies are very stressful - whether they are high needs because of medical things or because they are just super fussy or some weird combination. It is normal for you to feel this way. Also - my DP (who is just lovely, I assure you,) was a super high needs baby. She had many medical needs. Today she is healthy and happy. She is close to her mom and dad. Closer than many people we know. I know her mom was MISERABLE when she was a baby and convinced she was damaging her daughter for life because she told me so. But she was wrong. She was doing what she needed to do to keep her baby as healthy and happy as possible. You are doing the same. Keep doing it. I wish I lived closer cause I'd come over and clean up vomit for you.

[lunamoonwmn01.livejournal.com]

Just had to agree with this too. My wife Rose had a serious disability from birth that required lots of painful tests and surgeries, and it was agonizing for her, and for her mom. She is incredibly close to her mom, and always has been.

[calliopeblogger.livejournal.com]

sending lots of love your way. I cannot imagine how frustrating this is for you guys. It must be just maddening.
thinking of you all.
xoxo
cali

[judecorp.livejournal.com]

Thanks, hunny.

[artjax.livejournal.com]

Wish you much much love and patience.

[judecorp.livejournal.com]

Thank you. Same to you. :)

[skatured.livejournal.com]

That is a lot to handle -- but I think you are doing the best that you can. It seems like the sort of thing that years later you'll look back on and laugh about what a tough nut your daugther is.

Could the rash be caused by detergent? Soap? Anything like that?

[judecorp.livejournal.com]

According to the dermatologist, it's not really a rash. It looks like a rash but it's blood under the skin from broken blood vessels. Detergent or soap can't cause that. We actually ruled all of that out before going back to the pedi to say, "Hey, this isn't getting better!"

[colleenod.livejournal.com]

Anyone can have a high-needs or sick baby. Anyone.

If it happens to you, all you can do is your best. You're seeking out advice from the medical world, holistic practitioners, other moms... what more can you do? What more could any parent do?

I'm sorry. This sounds so, so stressful. You know our friends who offered you their breastmilk? (It might be the breastmilk in your freezer actually.) They had a very refluxy foster baby who was formula fed and now have a highly food-sensitive/allergic baby. Not that you necessarily want advice, but I'm sure they'd be happy to offer any they could. I'm sure they would also just be willing to listen and commiserate. I mention that only because if your mom group is frustrating you because of all the happy, healthy babies in it, it might help to talk to two moms who didn't have that experience, who cared for and are continuing to care for some very high-needs babies... just to know you're not alone. Just a thought. You can ignore it if not helpful.

Sending you virtual hugs.

[judecorp.livejournal.com]

I just feel like there has to be MORE I can do, because I am her mama and it is my job to fix things. And then I hate that I don't have a lot of money and I have to stress about money while taking her to doctors and other practitioners. Ugh.

Your friends with the milk have been very kind with talk about a high needs baby. K is very nice. :)

It just sucks to go to the baby group. On one hand I know that their babies aren't sleeping as well as mine, but it sucks when August is on the floor on her blanket like the other babies and they are always saying, "Oh, she spit up again..."

[kitchenwitch.livejournal.com]

Have you and your doctor discussed further testing to weed out the cause of vomiting? I've run across pyloric stenosis a lot in reading; maybe that is something that needs to be explored.

Did they say the rash was petechiae or purpura? Dr. Sears says it's serious here: http://www.askdrsears.com/html/8/T082900.asp If it IS a vascular problem, or any other problem, they should be fixing it, not giving you a runaround.

You're a good mama, and she loves you. I promise.

[judecorp.livejournal.com]

She hadn't been spitting up as much until the last couple of weeks. I think it is because she is moving around more, because she doesn't spit up if she falls asleep for the night or if she has a nap. But she spits up A LOT when she is playing, kicking her legs, that kind of thing. I don't know. It can't be pyloric stenosis because it's only sometimes... as far as I know, that involves throwing up everything they eat, usually projectile.

Thanks for the link about petechiae - because that is the word I couldn't spell. Our pedi says that she doesn't think it's caused by any kind of infection because she doesn't have signs of infection, and she doubts it's one of the more serious causes but just in case she wants us to see a specialist about an hour away. The pedi is great, it's the dermatologist I saw yesterday that was kind of a turd.

[artemis44.livejournal.com]

I'm so, so sorry you're struggling with all this right now... I wish I had some sort of genius answer, but it sounds like you're making lots of good choices and investigating lots of good options... though your alternative care providers certainly do seem to be lacking in the compassion department!

You've gotten lots of good advice here, and I hope you find some good info through it.

As for the multiple donor milks, I've heard of babies who used donor milk from dozens and dozens of mamas, with no ill effects, so perhaps that isn't a concern...

You're doing SO great, and I know that baby loves you! Well, actually, I tend to believe that babies that young don't actually *love* their mamas yet... that comes later, when they differentiate themselves from their mamas... but you provide comfort for her, and she feels safe with you, and that's what we're here for in the beginning. You'll get those happy smiles later, when she's through with this struggle, and it doesn't mean ANYTHING about your relationship with her, and it certainly doesn't mean the other mamas are any better or closer - they just dont' have babies with the same issues/needs right now...

HUGS, and keep us updated/let us know when we can help...

[judecorp.livejournal.com]

I just wish someone had an ANSWER, you know? I mean, the chiropractor of course swears she can fix everything, but she wants the baby on tons of probiotics and another formula change and all kinds of other things, and I'm just leery of changing lots of different things at once because you can't rule out what works and what doesn't. I wish I could know for sure if the baby had a dairy or soy allergy because then I could deal with it, instead of just wondering all the time. Dairy formula gave her diarrhea but she is throwing up as much or more on the soy, just not having diarrhea. Sigh.

I just don't think I'm strong enough to keep dealing with all of this stuff.

[anitsirk.livejournal.com]

oh holy shit jude. i thought that the whole reflux thing was kind of traumatic and nerve-inducing. i totally missed the falling off the bed and man, when you put all of that shit togather it makes for a horrible babymoon.

you are not a horrible mother, nor are you dysfunctional.

if you want to get out for a while, please let me know. i will be happy to come and watch little A while you go and get a massage or thrift shop or whatever you do to decompress.

as for the petechiae- are they all over or just on her arms?

[judecorp.livejournal.com]

On her right arm only. Both sides of the arm in patches, and on her right hand and right pointer finger (which she sucks on).

[aminahfiddler.livejournal.com]

Well crap. Wait you have enough of that :-)

I had a newphew that threw up all the time. He did the projectile kind. When the family came over to vist, we would all fight over who could hold him. It was the only safe place to be around the kid. Now, he's about to graduate high school and go onto to college. He's a healthy well adjusted kid.

It's hard I know. You're doing the best you can and be thankful you have such a great support system.

[judecorp.livejournal.com]

I just hope she grows out of it soon.

[changinglight.livejournal.com]

(((((((((hugs))))))))))

[judecorp.livejournal.com]

Thank you.

[afullmoon.livejournal.com]

Ahh Jude. I am sorry you are feeling this way. I remember Lexi's first 4 months being terrible and me never saying anything because I thought it was my fault or that I was doing something wrong. Came to found out newborns are hard. People think all they do is sleep. Yea right. I wish it was like that. She is going to be okay and so are you. Your a great mom.

[judecorp.livejournal.com]

It sucks because she's really a great baby otherwise. She wants to be happy and active and just be a normal little baby girl. When it comes to some things she is very easy (*knock on wood*) so I guess we all have to have our challenges. At least she is sleeping at night.

[girlonthewire.livejournal.com]

((hugs)). I can't imagine how you're feeling. I have so much mommy guilt, too. I can't imagine if I had a high-needs baby!

It will all get better. I hope it's sooner than later.

[judecorp.livejournal.com]

We need to somehow put an end to mama guilt. Seriously. Because you're a good mama.

[sassywoman.livejournal.com]

OH honey ... I can relate on so many different levels to what you're going through.

We have had Emma on soy for 6 months now. I didn't know that it contained corn syrup (gasp) but it works for her. We use plastic bottles and now I've been told they are going to poison my baby. I get so frustrated when I hear about something new that is going to harm my baby.
Sigh ...

Have you tried Dr. Brown's bottles? We switched when Emma was around 3 months and they made a HUGE difference. We still have spitting up and sometimes vomit but nothing like before.

We have had very good luck with prevacid. She takes the 15mg solutab once daily. Have you tried it with Gus? I know you recently switched meds. Not sure if it would help, but I would ask to try a new medication if the current one is not working. It can take a few tries to get it right.

I can tell you it does get easier the closer they get to 6 months. Emma still has her moments for SURE but nothing like between 2-5 months.

I have often wondered to myself and aloud why we have these challenges with Emma after everything we went through to conceive her. I'm also envious of mom's who have "easy babies". You're not alone on that one either!

When Gus starts feeling better you will see a happier baby. I would just keep trying different formula and acid reflux meds until you find what works best.

I'm thinking about you and want you to know I think you're a wonderful momma to Gus!

[judecorp.livejournal.com]

I'm sure corn syrup isn't a huge deal but I'm really weird about food and I avoid all kinds of things and that's one of them. So it's especially weird to be giving it as the primary food for my little baby, you know? We just found a soy formula that is made with organic rice syrup instead of corn syrup and I feel better about it. But who knows, she'll probably have a soy problem, too! =P

She is on Prevacid. It has definitely helped with the acid and the heartburn stuff, just not the spitting up. Especially now that she moves and kicks a lot - that seems to just push everything back up! From what I have heard, the reflux meds don't help with the spitting up, just the acid.

I don't want to use Dr. Brown's bottles because they are not BPA-free. The Born Free bottles we use have a vent that is kind of like Dr. Brown's and she doesn't seem to get a lot of air when drinks. She is less gassy now that we stopped the dairy formula but she also seems to be a little constipated. Poor little pumpkin.

I am very envious of those "easy babies." Then again, a lot of those babies don't sleep as well as my little punk, so I will take what I can get. :)

[mermil.livejournal.com]

All I can tell you is you are not a bad mom, and Gus WILL feel better and then she will be happy. But I cannot imagine how wearing it is to have a baby who is constantly throwing up, and how terrifying it is to have all these doctors giving you the runaround...I am guessing that they mentioned a vascular disease only because they don't want to get sued in the extremely unlikely event that Gus has a serious condition. In other words, they are freaking you out so they can cover their ass.

You may be one of the few mothers who finds the "terrible twos" a breeze after all the stress you've had-- things have to get easier for you guys!

[judecorp.livejournal.com]

I'm sure you're right and they are just trying to do a little CYA. It's just scary. It's like I made this little defenseless creature and she is just having such a rough go of it. I want to make everything perfect for her so she will just laugh and smile all day. I'm sure they are just sending her to a zillion doctors because they don't want to leave any stone unturned, and if they were REALLY worried about a vascular problem they would have ordered some bloodwork. It's just hard because I love her so dang much.

I feel like toddlerhood HAS to be easier because at least hopefully she will be able to tell me things!!

[stapynam.livejournal.com]

(((hugs)))

i am so sorry you are having such a bad time of it :(

[judecorp.livejournal.com]

Hopefully you have a totally Low Maintenance baby!!

[ntiva.livejournal.com]

Jude, you are in my thoughts. I know this is so hard for you, and while you're in the middle of dealing with it, it's very overwhelming. You are doing a great job, try not to get discouraged. I love you.

[judecorp.livejournal.com]

Thank you, Dina. You are a major sweetheart.

Reflux

[(Anonymous)]

Jude:

God I know how you feel! Jamesen was born with a brachial plexis injury to his left arm, he had clogged tear ducts, baby acne, wasn't eating and the reflux from hell. After trying every known formula in the world we finally went to Nutramigen. He is now a perfectly happy baby. Have you considerd that? BTW, I think you are doing a great job with Gus.

- Married Lesbian Mom

Re: Reflux

[judecorp.livejournal.com]

We are considering Nutramigen and Alimentum as a last resort because we're kind of broke right now and don't know how we would be able to afford them. They are so flippin' expensive!!

Thanks.

[(Anonymous)]

one thing I just want to put out there is that the last two bloggers whose babies had strange, scary-looking rashes requiring visits to doctors and dermatologists and threats of horrible blood diseases both of their babies turned out to be having allergic reactions to something. I'm talking about Estelle's Charlie (Faggots on the Third Floor) and Katie's son at Maybe Expectant). If Gus is allergic to milk, then it could, perhaps, be manifesting in the rash, as well.

I just wanted to put that out there. Keep taking her to the doctors so they can take care of her, but also see if they can determine if it could be caused by an allergic reaction. Especially because if it is an allergy (or if an allergy is contributing to the reflux) then you'll be needing to make sure that the women donating breastmilk aren't eating dairy themselves...

I hope that it's an allergy and not a blood disease or something worse. And I hope that things start easing up soon and answers start flowing.

[judecorp.livejournal.com]

I asked about allergy stuff and was told that it was very unlikely since it was clearly a vascular issue (broken blood vessels) rather than a histamine/hive issue. Apparently if you press on the "rash" and it doesn't blanch then you know it is broken blood vessels. I'd never known that before. I was still hoping, though, that switching to the soy formula would make the "rash" go away. (It hasn't.)

We stopped using dairy because she was getting major diarrhea when she was on dairy formula. The diarrhea has totally stopped, even while still giving the donated breastmilk for one feeding per day. Who knows? This is all a mystery to me.

If there continue to be problems, I think I'm going to ask for allergy testing. Can they even test for allergies this early?

[(Anonymous)]

oh, that last, most-likely assvician comment was from me.

Trista