Bottle Nursing

       

I bottle nurse my Paige. With my first 2 children it didn't happen. In the NICU, they encourage you to feed your baby away from your body, facing in the other direction! Not only was there zero bonding, but their difficult feelings caused a groaning in my soul. 

With bottle nursing you hold your baby close to your chest. She can smell you better, hear your heartbeat, look in your eyes, or play with your lips like Paige does to me :-) 

Oh yes, we certainly bond. Aside from being fed sweet mothers milk, I have come to realize Paige won't, I mean refuses to be fed by anyone but me. You hear a lot about how some babies won't take a bottle. Paige refuses to be fed outside the loving arms of her mama, just as if I were nursing her. Being fed by someone else is foreign territory. How sweet!! Don't grow so fast Paige your mama adores you!

    Satisfied and happy! She is so my little treasure. 

The high calling of Motherhood

Gonna make this day's blog short because of the little ones reaking havoc in the back round. 

Having a chronic illness really brings life into perspective.  You can ignore it, push it aside, you can make it seem trivial.  I had to listen to the nurse's words.

"Go to the hospital?? What? I have three kids, and one of them is a newborn.  I'm not leaving her all night."

 "If you're not here to take care of your kids, nobody will be."

Sometimes I have to realize that even though I've delt with ITP for the last almost ten years....and I've done well, that I'll be OK, that nothing can go wrong.  You know God has his ways of letting us know we aren't self sufficient.  

I waited til the next day to go to the ER (since there was no openings in the infusion center) and I got my 10 hours of IVIG in a dirty yucky ER.  You better believe I brought my newborn with me.  I missed my family while I was gone, and I'm so thankful we were able to have a babysitter with the kids.  24 hours following my infusion I had a terrible reaction.  The most painful migraine, where light was painful.  It brought on nausea and chills.  Corey had to leave work to come home and care for the children. After 2 days it finally went away. 

I'm really thankful for healing, and for modern healthcare. Ever since I had Alexa I have been out of remission. 

Find something today to be thankful for! Good health, can be one of them.  Today...I am thankful, for my health.  The health that God has allowed me to have!

Introducing Paige Madison

Introducing Paige Madison, born 7/9/2012 at 800 am weighing 5lbs 5oz and 19"

Paige was born via repeat c-section (because of the complications I had with my first daughter) 4 weeks early at 36 weeks.  She was born a wee 5lbs 5oz. 

Unlike Alexa (baby #2) she had some issues after birth.  She was being closely monitored for keeping her own temperature and for rapid breathing.  Thank God she did not have to go to the NICU and daddy stayed by her side.  I was so eager to see her in my bed, especially since my legs were still numb.  I did facetime with my husband to see her as he stood by her side in the nursery, being her protector.

This time by far was the best birth experience I have had, because I had a wonderful team of doctors and nurses working to make me as comfortable as possible.

Once they were finally able to bring my baby to me the first thing I wanted to do was nurse ofcourse.  Not only did she NOT latch, but she had absolutely no suck whatsoever.  The LC came to my room and we syringe fed her donor colostrum.  I also hand expressed my own colostrum for her and the LC and I fed her with a spoon. 

The second day she finally got a latch.  She appeared to be doing well nursing. Yay! We quickly left the hospital so we could be home to enjoy our newborn.  Something was going wrong though.  She rapidly lost weight and was a 4lb 14oz baby when we got home.  Despite supplementation and letting her latch onto me, she did not gain any weight and had a poor suck.  After meeting with the LC several times she was removing a total of 7-10mls from me. 

My pump output was pathetic so I quickly started on domperiodone once again, and am currently making 6oz a day pumping 8x a day.  Although this is more than I made with my first baby, it's only enough to feed a micropreemie.  I made zero milk for my first and my second I had problems with getting a full supply. Her feedings needed thickening and it was too painful for her to nurse.

After two weeks having her home I started to panic one day.  She flat out refused to eat, anything at all.  Her color was not good and she was very listless.  My husband and I rushed her to the ER and they had admitted her later that night.  She was in the same state until the very next day when they moved her into a warming bed and hooked her to IV fluids. 

I had felt bad that I had worn her out with all the nursing rigour.  She was using all her calories to maintain her temperature and nursing/bottle feeding.  They said she also had some pretty bad reflux, like my other two children and that her feeds must be thickened.  After 3 days in the hospital she was discharged a healthy 5 pounds 4oz and she has put on weight every day since then!

I continue to pump for her, even though at times it can seem fruitless.  Still 6 ounces a day adds up, and it's something special I'm doing for my baby.  I hope that as she gets older and stronger, she can learn to latch again and we can have a nursing relationship, if her reflux doesn't get in the way.  My other two children had to have thickened feedings as well because their reflux was painful and severe.  I was very sad at first that this once again has not worked.  But it's not about me, it's about my daughter. 

I am looking for breast milk donations for baby Paige.  She is currently taking in 20 ounces of breast milk per day, and that should get up to 20-24 ounces by the time she reaches 8 pounds or so.  Please let me know if you can help this weak little wee one!

Living with chronic low milk supply


update: Paige is now 6pounds 5ounces!! Thanks to all that good mama milk!! Look at the difference in how she looks, by the way in her first cloth diaper! Message from Paige: Keep pumping for me mamas I need your precious ounces to keep thriving!

Shipping approx 100oz

Stack the milk close together as possible and tightly in the cooler

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Add your cooling packs directly on top of the milk

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Fill in any open gaps with paper

tape down the two sides of the cooler

Tape the seaming of the lid around the box. 

Affix the postage label and you are good to go!

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


**UPDATE**




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!

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.

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: pugsandchickens@aol.com

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)
http://www.youtube.com/user/lauraMaMoore?blend=23&ob=5#p/u/11/OHeEFtlEo1A
shipping with dry ice
http://www.youtube.com/watch?v=xdFfek3HYwY