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:
http://www.youtube.com/watch?v=Ri8cpf2Tdc4




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 pugsandchickens@aol.com

4 comments:

Zie's World said...

Wow, what a story. I think it accurately reflects so many moments that we mommy's have and the pressure we put on ourselves. My middle son was born with cerebral palsy (we didn't get him diagnosed until 17 months) and for weeks I fought, and cried, and saw LC's trying to get him to latch. Now that we know he has CP it makes sense, but at the time I felt like a complete failure as a mom. I had already nursed our oldest son, why couldn't I nurse this baby?

So we began our pumping adventure, luckily I responded to it and can force my let down. He's now a healthy 20 month old, and despite his disability, the happiest boy you'll ever meet. The universe gives the hardest challenges to the strongest moms and we choose to fight.

Now I am nursing #3, our first little girl, and she's my breastfeeding reward for my perseverance with #2. Still a skilled pumper, though I let my Pump in Style go to a friend, we have a surplus so are checking out EOF and so excited about the movement.

Good luck with your gorgeous girls. I have to say it (though if you're like me you won't listen) take it easy on yourself. Doors close & windows open.

Laura, Sent over from the EOF FB page.

babymakes5 said...

What a beautiful story!!!I had huge tears in my eyes I found you thru diaper swappers.It tugged on my heart strings because like you I have had alot of trouble nursing my babies.I also have a preemie due to sudden membrane rupture.My second daughter Natalie was born at 34 weeks weighing a healthy 5 lbs 2 oz but her lungs weren't developed.Today she is a healthy 50 lbs and 7 years old in the first grade and loving live.My latest addition is a miracle.I will continue to follow your story

Joy said...

Hi,
I ran accross a post you made back in 2011 about your daughter being hyper when feeling bad. Is she better? If not, you might want to look into PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with strep. You can find out more at www.pandasnetwork.org and also www.strepmonster.org
I hope you find this! Good luck and God bless.

Gabriela Coello said...

Hi,
I just found your page. First of all! You are a very strong lady with two beautiful daughters. Keep up the great job you're doing as a mom. I noticed you wrote in 2009 an article about your daughter being overly active when sick. My son is the same, and he is the same age your daughter was when you wrote it. How is she doing? Does she still get hyper when sick? Any information would be helpful. I really hope all your beautiful family including yourself are doing and feeling well.