Wednesday, May 25, 2011

Alexa's tummy trouble's

When you're pregnant, you dream of holding that sweet baby, and the world is a happy place. But then you're sent into shock when instead of you have a baby with colic screaming all day and all night, pooping blood, mucus and screaming with every feed, minimal weight gain, poor growth, and loss of energy. Alexa wanted to sleep all the time! We dealt with it with our first born, but Alexa seemed to be worse in a different way. Never did I think I'd be going through this again with my second child. Every feed was a battle. She would scream in pain every time we tried to feed her. It was so hard for me to see her in pain all the time.

It's so hard when you're already sleep deprived, with an active toddler, and suffering from PPD, to feel calm and tender when it's 3 a.m., you haven't slept for more than 45 minutes at a stretch for more than a month. For the first month and a half I bounced her on a yoga ball for hours. Then we were able to finally graduate to bouncing her on the ball in her car seat, because I found that as soon as she'd fall asleep she'd wake up if I put her in her bed.

I needed escape, but at the same time I felt bad to leave Alexa alone with her father, let alone a babysitter. I felt trapped, or doomed to be trapped with this child, whom I both loved and yet could not stand due to her incessant crying that sent my hormones and ears into over drive. My parents live 100 miles away, so getting any relief was not going to happen.

Everything we tried for her worked for a few days: switching bottles, switching donors, switching her formula, putting her on goats milk...etc..We tried everything we could think of medicinally: zantac, gripe water, medicines, pacifiers, keeping her propped up in her car seat as she slept. Nothing but only constant bouncing would help. everything only helped for a few days at a time then the colic monster would come back. Don't get me wrong here, I absolutely adore my precious baby girl. It was just harder to adore her with prolonged crying that did not give up. If she gave me a couple good days of low crying, I could recover and love her through it. But it just wore me out when I had no relief.

The only thing you can count on with colic is that your baby's going to cry, you're not going to sleep, and it will feel like the worst all-nighter you ever pulled, with no end in sight. Here's a short clip of what I deal with 24-7:

At the end of my rope, I made an appointment with a GI specialist about an hour and a half away from us. She told us that Alexa had cow's milk protein intolerence, and possible soy. We took her off donor milk and put her on hydrolysed formula. While this seemed to work like a charm, the colic came back about 5 days later. We were assured it takes time, but I just wasn't buying that. She was worse than ever...I don't understand why formula would have been better, being it's only partially hydrolysed to begin with. The only other option would be neocate, which is so expensive we cannot afford it. My insurence refuses to cover any formula even though it would be medical necessity for her.

After giving Alexa some dairy free donor milk, she stopped incessantly crying, she slept better at night, she started eating more ALOT more! Her skin was super soft like silk. She went from drinking 15-16oz a day and being so tired from lack of nutrition and sleeping all day, to drinking 24-32oz only after a few days being on the new milk.

It took 4months of damage to get her here and it will take her time to heal, but this drastic improvement says something. I am so grateful for donors, they have taken my child out of extreme pain and GI damage. I'm extremely grateful for all our donors who help/have helped Alexa in the past. She is not completely free of dairy because we do not have enough dairy free milk. We will reguarly test Alexa's bowel movements for blood to see when she is healed completely. We still need ongoing donors/donations for Alexa! Please help us!! Please take my baby girl out of pain. The longer it takes for her stomach to heal, the more long term damage there will be. Infant colitis is very painful situation.

Just at 24oz a day, that's nearly 700oz a month and 11 gallons month...bare minimum we would need for her to get off these offending proteins. Goats milk still contains casien, that offending protein, just less of it. We need to get it out of her diet if she's able to get better. She REALLY does need it, if she is to get better. There's milk available everywhere for babies, but very little dairy free and or soy free milk out there. I am still trying to relactate, but when she does not feel good, she will not nurse, sadly. I still try very hard. We have domperidone on order at our pharmacy (THAT my insurence surprisingly will cover!!) I assume she will consume more when she feels even better. We are delaying solids because of her immature and weak digestion, so we will need to keep her on just milk for atleast til she's 8 months old. If you are able to help us, please, please don't hesitate to contact us.

We are willing to drive 100 miles in the surrounding area for milk, and are more than willing to pay for shipping, reimburse for bags, and or shipping expenses. Also I have family in both PA and NJ that can be used for drop off areas.

This is what Alexa looks like when she feels good! Help Alexa get better! She's really been gaining weight and improving so much thanks to sacrificial mommies like you. Alexa just turned 4 months (she should be about 3 if she was not premature). So we have a long time to go!


Look me up on facebook: Kara Petroske
my email:

Wondering what's involved with shipping? It's VERY easy (I've done it myself) I have prepaid labels with UPS, and they can even pick up the package from your door.

shipping without dry ice (and ofcourse I would send you the cooler)
shipping with dry ice


kelly the nut said...

Have you put out a post on Only The Breast? Most of the posters sell their breastmilk at a cost of $2 - $3, but some simply donate. There are a number of different dietary restrictions (gluten free, casein free, only organic, vegan) that certain moms hold to - I hate to suggest paying so much when it may strain your budget, but this is one of the only sites I know of where you can locate the kind of milk you need.
God bless!

Grazel & Grayson said...

Have you tried taking a fenugreek tea to help milk production. If I was nursing and milk free I would help you. I have donated breast milk before and used fenugreek to help increase my milk production. It makes you smell like maple syrup and can be purchased as a seasoning at Indian food markets. I went from 10 oz to 25 oz in my morning pumping session. I hope you have luck! I commend you for your efforts.

Woman who wonders said...

I was selling my over supply, but would gladly donate it to you. It just dropped massively and I am struggling to make enough my self. If I can get my supply back up, I will start sending you my extra! Best of luck!

Anonymous said...

What state do you live in? You CAN get insurance to pay for that expensive formula. My son had to be on Elecare and our insurance wouldn't pay for it. Go to your local welfare office. There is a category called PH95, which will possibly cover your infant without counting you or your husband's income. It's sort of a loophole in the federal government. Request an MA application along with a health sustaining medication form that your doctor will have to fill out. It is a long process and you will still have to supply a ton of info: ex: paystubs, ss cards, birth cert., etc etc etc. But get all the requested items in as fast as possible because you'll have another option for your child faster :)

Anonymous said...

Hello! I just read your blog and my heart goes out to you. I have a 3 year old daugther that has milk allergies, so I really can empathize with your situation. I am praying for you! I wish I had breastmilk to donate to you, but I don't. What I do have is a page on Facebook that is a dedicated forum for moms of milk allergic kids. I literally just started it because I thought we all needed a place to go to be able to talk with other moms like us. If you are interested, the name of the page is Milk Allergy Mommies.

Wishing you the BEST of luck.