Wednesday, October 19, 2011

Moms who reached out to my daughter changed our lives

If you read my old posts, you can see a video of my daughter screaming. This was how we spent the first 4 months of her life. We found out she had a dairy, possible soy allergy and GERD through a GI doctor. She had bloody stools with mucus and screamed, cried all through the night and day. I spent hours bouncing her on a yoga ball before bed time. When she did drink, she would only take 1 ounce of milk before she screamed and slapped the bottle out of my hand.

This contributed to my being diagnosed with post partum depression. I had gone through having a 32 week preemie (my first pregnancy) and it was very traumatic. I didn't even get PPD from that experience! Severe sleep deprivation, and crying that you cannot console eventually will start to break one down. I did not leave her with anybody because I did not want them to experience this torture. Relatives didn't understand why we couldn't let them feed her. Generally, misunderstandings about her health just meant we didn't know how to raise our children. God forbid people like that ever have children with health conditions. They live in a very small world.

Out of despair I started reaching out to my community and to moms I knew who already had a heart to donating their precious breast milk to Alexa, went on the diet. I put her story out on Craigslist and milksharing websites. The inability to nurse my baby girl, yet having to provide a strict dairy free milk for her was excruciating. I felt so powerless, and played the self-guilt game for a long time. Relactation was attempted, but Alexa would scream at the breast and I could not get much out with a pump (stress didn't help). I proceeded to hand express until an unusual form of tendinitis called "calcific tendinitis" developed in my left wrist. It is usually found in the shoulder but can be found in any tendon. Honestly, it felt like I had broken my wrist, or as if an explosion had occured inside my hand. My husband had to help me pick up my own baby. After an ER visit and an emergency appointment with a hand specialist, my hand was put in a cast and given a steroid shot.

Moms read Alexa's story and either went on the diet to donate what they could or were dairy free and provided all she needed, filling my 3 freezers with breast milk. I don't forsee any problems with keeping Alexa on this special milk until she is 1, as the GI doctor told us to do. The moms continue to LOVE.

I feel like I could never repay these moms for what they are doing/did for my daughter. Anything, like my words of appreciation seem so cheap in comparison to what they have given her. At times I feel so indebted. I just want to give to somebody else like this one day. I don't know how or what but I know God has a purpose in everything. I have made so many friends through this. Alexa will know one day what complete strangers had done for a little girl; they, perhaps won't even meet. She can give back, one day, too.

My daughter is healed of her GI problems and is a normal baby now. I think getting her on the diet strictly for a few months at minimum was key, before we started seeing change as her belly started to heal. Thickening the milk was a must and kept the milk from going up her esophagus; protecting from burning her little throat. We did not have to give her any medications. She's still "high need" but I'm ok with that. When your child is refusing to eat, you can deal with some clingyness and crying.

A mother's love for a baby, a baby that isn't even hers...blows me away. My daughter couldn't live without being fed. They fed her, nourished her, and healed her. The biggest factor is her caretaker (Me) has healed through this experience. I no longer feel guilty, or inadequate. THANK YOU MOMS.

Alexa (6 weeks old)

Alexa now 9 Months


Alexa is 13 months and still on donor milk! She does fine with cow's milk proteins now as long as it's been processed through mama's milk :-) We would like to keep her on donor milk til age two as the world health organization recommends. Would love it if she had the best start in life and didn't have poor immunity like her mama! To be able to provide my child donor milk when it killed me to see my sick preemie do without...I cannot put a price on this milk and I feel like I could never repay these mothers.  Remember moms when you donate you are GIVING LIFE.  It doesn't matter the age or the health status of the child - you're nourishing another human being. 

Seeing the difference between my preemie who was sick constantly for two streight years, versus Alexa who hasn't had an ear or lung infection, or chronic cough in the 13 months she's been alive.  It's because of you.  I love giving back because God has been so good to me.  It was 12.5 months ago that I prayed to God asking Him to provide all Alexa needed to be nourished.  I love how God always goes above and beyond!

Wednesday, June 22, 2011

A special Father

Father is a special word to me. Any person can have children, a special man can be a father, but an even more special father is a Daddy.

The Dad that matters in my life is my husband. Because of my husband's love of my children, they have a chance in succeeding in life what really matters. Passing on generations of parenting. It's beautiful to know that my husband is creating a life-long legacy for our little girl, nurtured by his love for the Lord Jesus Christ.

We had two girls, but this was the best song I could find! So ignore the "Daddy's Boy" part and pretend it said Girl. :-)

Here's a video of Corey with our first baby girl, Cally Petroske, who came into this world a survivor.

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

Thursday, January 27, 2011

our story

For every woman out there who was able to breastfeed successfully, or who was able to pump and bottle feed successfully, I am happy for you. You are wonderful and fortunate mothers.

A little bit about me. I'm a born again Christian, I am a content SAHM, I have two beautiful little girls. I'm married to the most amazing man in the world. He takes such good care of us all. He's so wonderfully in tune with me. If anybody knows us, they know how in love we are with each other. We live in Emmaus, PA. My world has been very blessed.

In the summer of 2004 while working on a retired race horse farm I noticed large bruises on my body. I also was very weak and near passing out a few times. I didn't have any insurence so I avoided going to the doctor for the longest time, until I couldn't wait anymore. At the age of 23 I was diagnosed with an incurable autoimmune disease called ITP. For an unknown reason, my body attacks my platelets like they are invaders, or foreign bacteria/virus, when my platelets are good. The symptoms are spontaneous bleeding and bruising. Platelets help your blood clot and heal wounds. Many of the treatments for ITP are the same treatments for cancer; although I have not had to get chemotherapy, many of the past treatments I have rec'd have damaging, intolerable side effects. I was diagnosed a year before I met my husband and I told him everything from the get-go and he said he was in it for the long run (after I explained to him it was non-communicable). He even took me to doctor's appointments on our dates!

The worst time I had was being hospitalized two weeks before our wedding day. My sweet soul mate drove 100 miles and surprised me while I lay in my hospital bed. I have not needed aggressive treatment for a long time now! I have a firm belief it is because my support, my hero and my love has been there for me like nobody else has. I have not had platelet counts in the "normal" range and this has made each pregnancy difficult, and high risk. ITP is a big part of my life - it's always going to be apart of me.

Why am I writing this blog? Because if you are considering giving us your precious hard-work, part of YOUR self, I'm sure you'd like to know why.

What's the story?

Two years ago (2/15/08) I had a placental abruption due to placenta previa. This was completely seperate from my autoimmune disorder, but things were much more complicated now. I was on four months of bed rest and had several small abruptions and sub chorionic hemmorages the whole time. It was not a fun pregnancy. My hubby rushed me to the hospital where I had my little girl, Cally Lynn at 32 weeks of pregnancy weighing only 3lbs 9oz. Becuase mommies pass their antibodies through the placenta to protect baby, my little handful was also diagnosed with my bleeding disorder a few days after birth and rec'd IVig until her platelet count was stablized.

I had massive blood loss, my placenta had a very hard time coming out, I was borderline hysterectomy and doctor "thought he was going to lose mom and baby". I had a vertical and recovery was very painful and hard. After two days in a morphine daze, I got up the second night to finally be wheeled in a wheel chair to see my precious daughter. Before then I had only been able to see her on my husband's cell phone, and I had said, "she's beautiful". I started pumping right away and it seemed to do well. Probably within a few days after coming home there was nothing left. I continued to pump for a streight month, only drops....hoping the milk would come in. I had to do it for my preemie. But we felt the stress level was too high to bare to keep pumping nothing. I wish I had known about milk sharing programs at the time. I was a very inexperienced first time mommy.

When we finally brought her home after 3.5 weeks in the NICU, this child went blue and lifeless in my arms during every feeding. It was horrifyingly scary! I took her to the doctor and I said I can't be alone with this child I think she might die on me! They hospitalized her for another week and figured it was severe GERD causing apnea which cut off her oxygen, causing her to turn blue. Oh, and I'm pretty sure a big part of that was caused from neosure (infant formula for premature babies).

I suffered alot of guilt, formula made my daughter sick, she was ill for two years every other week from lung infections - she now has asthma and even had to be hospitalized on her first birthday with pneumonia.

When you come to the realization that you can't do what should be normal and natural, your world and self-image come crashing down. You question your worth as a woman: You feel like there's something wrong with you and your body. It didn't help to have a sick baby on my hands either.

A couple of my wonderful friends helped me out so I could sometimes get one bottle of breast milk to my LO a day. I ended up making my own formula out of goat milk. This helped tremendously but it was still far in comparison to human milk. What a precious commodity... She's been doing so much better and hopefully is growing out of her preemie lungs. It was so difficult dealing with people who didn't understand and even threatened to call CPS (yes well meaning family members) because our child was sick so often, they felt we must have been hurting her :-(

Here's Cally's story on youtube:

Cally is a very healthy girl. Her sickness has decreased, she's bright, active and very smart! Her preemie lungs are getting stronger by the years.

Alexa Renee

I gave birth via planned csection on 1/17/11 at 37 weeks gestation to my second baby girl, Alexa Renee. It was planned this time (not an emergency!) and wonderful. All prayers were answered. She wasn't born with my bleeding disorder, my husband could be there to cut the cord...tears rolled down my cheeks as I heard her first cry. The things I never got to experience when I had my first child. Alexa was as healthy as could be. I felt so blessed. I felt that if I was living a dream I did not want anybody to wake me up!

I prepared ahead of time! I read several books on breastfeeding, went to LLL meetings, did a ton of research on increasing supply. I was going to make it work!

As soon as I was wheeled back to my room they gave me Alexa to nurse. Alexa nursed like a champ and dispite being a tiny 6lbs and a tiny mouth she had a great latch and nursed every hour around the clock. I loved it! Isn't she a cutie?

I constantly paniced about her weight, thinking the same thing would happen like it did with my daughter. I learned how little I really knew about breastfeeding. She had lost 12% of her birth weight before she had left the hospital. We also noticed she was not having any wet diapers while we were there.

When we brought her home Alexa was jaundiced. She slept like a mummy! I read up on jaundice and I believe she had what's called "breastfeeding jaundice". It's an inability to get the jaundice out of her body because of lack of fluid. My milk did not come in til day 5 so this explains things. I am super sensitive to medications so I believe it was the anestesia I rec'd for my csection that delayed the process. Because she was too tired to nurse, I noticed a marked decrease in my supply. The sad part is I cannot let down to a pump, so I had no way to keep my supply up in the meantime until she was strong enough to nurse again.

The LC told me to try to nurse her on each side for 15 min, then use this contraption called a "supplemental nursing system" then pump on both sides for 20 min after that. Seems easy enough right?

Wrong. I lasted a few days. This was with my husband helping me almost every time. My daughter would fall asleep it was a struggle to keep her awake. We even tried putting an ice pack to her back. That was a struggle in itself. Then the SNS - the device I used with my first daughter that gave me nightmares! The SNS leaked like crazy - even popped off the cap and the only 2oz of milk I ever pumped altogether dumped all over me (I cried!), not only did it leak but my daughter had a terrible time latching and was working way too hard to get the milk out, and she'd be starving after that from working so hard. Then after that, the pumping was even worse. I didn't get barely any milk from the pump (hand expression included). My husband was stressed out, I wasn't enjoying my daughter, and my other daughter was being neglected. Night time was NOT fun doing this routine. I cried in my bed when feeding her. I wanted so bad for this to work I was begging God to help me!

I was beginning to get depressed, and decided to stop this crazy regimen. It was hard enough to care for two children, along with recovering from surgery, the adjustment of another person and all the demands that come with them, being sleep deprived and hormonally down. It would be one thing to see results by the pump....then I could keep a supply, which is just not there now.

Instead of feeling a sense of bonding with my baby, I felt an overwhelming sense of anxiety and failure while attempting to breastfeed. I spoke to a good friend of mine today, Laura Moore. I told her I was discouraged, and that every time I went looking for help getting milk I was put through the ringer about whether or not I exhausted all attempts already to breastfeed, which made me feel more like a failure. She told me about a similar situation about a friend she knew who was running into a similar situation. She told her friend something very wise, "it's ok to not do these things. Take that energy which did not give you results and put it into finding milk for your little baby girl".

That's wisdom! And this is a woman who successfully breast fed her kids but she is so compassionate that she opened the doors to understanding mommies who deal with supply problems. She donates herself and gives so much of herself to others. She was the one who told me about milk donating, when I myself had a desire to donate if I could...I wanted to because I knew what it was like not having the milk for my baby. I had met Laura on diaperswappers in the beginning of my pregnancy with Alexa.

When I gave my little girl her first bottle of donated milk, she was full and satisfied and my anxiety and guilt began to subside. The truth is that not all moms do make enough milk (low supply is real) and not all babies can nurse. It's hard to understand this when you have never had a problem brestfeeding. I'm glad though there are moms out there who are compassionate and want to help! She is gaining weight really fast and filling out her skin very well since we started her on donor milk. Although I wanted to nurse her very much, seeing her be nourished was far more important to me than the breastfeeding relationship itself.

I know that if breastfeeding did not work God would provide the donors we need. He says He has all these wonderful things in store for us, we just need to ask!

We are looking for ongoing donors in the lehigh valley area. We are willing to travel within reasonable distance for large quantities of milk. Also, we have family in the monmouth county, NJ area & border of PA and NJ (warren county) and would be able to arrange pickups or can be a drop off location. Shipping is always preferred! Feel free to contact me at