Wednesday, June 10, 2015

ICP and the Scars of Pregnancy

     My lower abdomen is home to four fairly straight lines, one on top of the other, beginning a couple inches in from one hipbone and ending a couple inches out from the other hipbone.  These lines and the flap of flab that hangs over them are a reminder of how my beautiful babies entered this world. The are not, however, the only scars of pregnancy my body sports.  I also have scars on my toes.  The consequence of literally scratching myself raw during my fifth pregnancy.  The consequence of living with a diagnosis of cholestasis of pregnancy, or ICP for short.

   Cholestasis of Pregnancy is a fairly rare condition that most often presents in the third trimester of pregnancy.  It poses no danger to the mother, but the same cannot be said for the baby.  The further along the pregnancy progresses, the more the risk of danger increases for the baby, with the greatest risk being stillbirth.  Delivery is usually recommended at 37 weeks, but sometimes it becomes necessary to deliver even sooner.  The itching that accompanies ICP is intense.  I have nothing to compare it to, and there is no relief until delivery.  There is a medication that is prescribed which helps to reduce the risk of danger to the baby, but it does not necessarily lessen the itching.  For me it did decrease the itching fore a short time, but as the pregnancy progressed, the itching returned and intensified.  I have developed cholestasis in my last two pregnancies, and I have read that June is ICP awareness month.  So I wanted to share my stories.

ICP Baby #1

     I was a little over 38 weeks pregnant with our soon-to-be third living child when itching hands and feet woke me up in the middle of the night.  It had been a long pregnancy.  Eleven months earlier we had lost a pre-born baby boy at 20 weeks.  I spent every minute of the pregnancy wondering if I would be able to hold this baby in my arms, or I would bury him too.  Like most women, I worried during the first trimester.  I was petrified that I would miscarry during that time, but it didn't end when at 12 weeks we saw and heard that wonderful heartbeat.  I knew that I had already been in that minority of women who lose a baby AFTER the first trimester, and there are no guarantees.  My fear escalated to a level I didn't even know existed when our community experienced an epidemic outbreak out of fifth disease, which if contracted during pregnancy, can kill the baby.  I got tested and sure enough I was not immune.  I spent the next three months leaving our home only once a week to go to Mass at 6:30 a.m. when there would be no children in attendance and very few adults.  We pulled our daughter out of preschool and my husband (who was immune) took on all the extra responsibilities like grocery shopping.  Overboard?  Probably, but to this day I am glad we did it. Our precautions weren't in vain. In fact, my mom actually did end up getting fifth disease.  It was everywhere and I couldn't fathom losing another baby.  I would have done anything in my control to avoid potential harm to him.  So that is what we did.

     I cried through all of my check-ups that pregnancy.  The 20 week ultrasound (where we had learned of the death of our previous baby) was especially difficult, but all was well this time.  I relaxed a bit, relishing in the ability to feel the baby's movements, until the gestational diabetes screening at 28 weeks.  I had developed gestational diabetes.  God did not intend to let me get through this pregnancy without learning to trust Him.  I never did learn, but I certainly did a lot of praying and there is a reason our son is named after Padre Pio who said, "Pray, hope, and don't worry.  Worry is useless."  I was a champion at keeping the gd under control and was starting to gain confidence. Every once in awhile I even allowed myself to imagine I might, just might, be able to hold and love this baby on the outside of the womb.  I allowed the slightest hints of joy to consume my soul for very brief moments.  I couldn't allow these feelings for more than just moments, because my heart was so raw and vulnerable that I didn't think it could handle being shattered to pieces again.  It helped if I thought of holding this baby as something that might not happen instead of something would definitely be happening.

     A few weeks before my scheduled c-section the movements decreased.  I had a feeling something was wrong.  I had a feeling, but this meant nothing.  After all, I had a feeling something was wrong the ENTIRE pregnancy.  I told myself I wasn't going to humiliate myself again by asking them to make sure everything was okay, and I didn't.  I worried, I prayed, and the weeks passed.  It was a Saturday night when I was awakened by the itching.  I scratched and scratched and then fell back to sleep.  The next day we went to Mass and to a brunch for religious ed. teachers.  I had forgotten about the middle of the night itching.  It was gone.  In the light of the day all was well, but when I went to bed that night it returned with a vengeance.  I couldn't get to sleep and I was scratching myself so hard I woke my husband up.  He asked what I was doing and all I could say was, "I'm itchy!"  After awhile I wondered if it was related to the gestational diabetes because it was only my hands and feet.  I went downstairs to ask my buddy, Google.  I ran a search for icthy hands and feet during pregnancy, fully expecting to see something horrible about high blood sugars pop up.  Instead I found a page dedicated to helping women who suffer from something called cholestasis of pregnancy.  I scanned the symptoms and had them all.  My level of panic rose sharply when I read about the dangers of stillbirth.  I had a c-section scheduled for Thursday of that week and had my pre-op appointment scheduled in the morning so I resolved to ask my doctor about it at the appointment.

     In the morning the itching was gone.  I began to wonder if maybe I WAS crazy.  I went to my pre-op appointment and shared my concerns with my doctor.  God bless him.  He knew how paranoid I had been the entire pregnancy.  He knew intimately, because he was the saint who stayed with me for hours and hours of induced labor AFTER his shift was over to help me deliver my dead baby.  He knew.  He knew, and he chuckled and assured me this had NOTHING to do with the pregnancy.  "Get some creams," he said.  I was devastated.  I was convinced that this time, I was right and my baby truly WAS in danger.  I went home and when my husband came home for lunch I told him what had happened.  This time he was convinced too, so he called the doctor and explained that he thought it could be cholestasis.  It takes a humble doctor to listen to a patient when he thinks they are off.  I was blessed to have a humble doctor and a husband who had the courage to stand up for his baby.  The doctor said I could go the hospital and get tested if it would make me feel better.

     I went to the hospital around 1;00.  The nurses mocked me.  "So, you're itchy, huh," they chuckled.  Clearly they had been warned about my insane paranoia.  They set me up in a bed and drew my blood.  I watched the hands of the clock move on the wall and wondered if I really was crazy.  My question was answered when they returned to the room, no longer looking like jokers.  "Your liver function tests came back with levels that are a little high," they said.  "We're going to need to start prepping you for surgery."  I found out in my next pregnancy that by "a little high" what they really meant was "normal is under 50 and yours are over 500."  I was frightened and relieved all at the same time.  He really was in danger, but now we were in the hospital.  He was being monitored.  I could almost breathe a sigh of relief.  As it turned out our baby was not born until after 8 that night, because I had eaten lunch, but he was eventually born and I held him, and I am still thankful to be holding him to this day.  My doctor shook his head and said he was sorry.  It wasn't even on his radar because it was not usual for it to present in a woman after 3 pregnancies without it.  Just as all the information read, the itching was gone within a few days and my liver function returned to normal.

ICP Baby #2

     There is up to a 90% chance of a woman experiencing ICP in future pregnancies after having had it once.  I knew this so I was on the lookout when I got pregnant again.  This time I felt the tiniest bit of tingling in my fingers around 32 weeks.  I told the doctor (not the one from above) at my check up and she assured me that it was probably nothing, shrugged her shoulders, and said, "Every pregnancy is different."  I went home and cried.  Especially when the days passed and the tingle transformed to the familiar itch.  I called in and requested blood work and was denied.  I tried again and this time the doctor on call said yes.
     I was officially diagnosed at 34 weeks.  This time the itching quickly moved from just my hands and feet to my entire body.  This is the pregnancy that left me with more than just c-section scars.  Scratching doesn't stop the itch, but you cannot stop scratching.  They put me on URSO  and set up weekly non-stress tests for the baby.   My levels were being monitored and I knew we were doing all that could be done.  This brought some peace, but still each passing day I wondered if I would wake up to a silent and still womb.  It is horrifying to know that your body is not a safe environment for your baby, and the chance of your body potentially killing your baby increases daily.  The doctor who was now monitoring me made it clear that she thought I wanted to deliver to provide myself with some relief, and she held out on changing my delivery date from 39 weeks to 37 weeks until the very end.  This was absolutely the worst part of ICP for me.  I didn't care about the itching.  I couldn't imagine how I would ever forgive myself, or her, if I didn't speak up and demand a 37 week delivery and my baby died waiting for her 39 week mark.  I didn't want my levels to rise, but I was almost thankful when they continued to do so, because she was forced to admit that this baby needed to be delivered at 37 weeks, and he was.  He was delivered.  He was healthy.  His lungs were mature.  He had made it. The itching stopped and my liver function returned to normal.

     I don't know if I will ever be blessed with another pregnancy again, but I do know that if I am I will be more confident and assertive in terms of the care that my baby receives.  I have two wild and crazy boys that are here with me today, and there is no guarantee that they would be here if it weren't for my husband and I pushing and risking humiliation in questioning my doctors.  If you have symptoms that worry you, please don't second guess yourself.  Push until you get the answers you and your baby need to find peace.  It could be nothing.  Or, it could be a rare condition you have never heard of that is a real danger to your baby.  It's always better to ask and know that you have done all you can to ensure your baby's safety.

My absolute favorite ICP website , which happens to be the website I stumbled upon on that itchy night so long ago!

Wednesday, April 1, 2015

Rambling Thoughts on God's Great Goodness

I apologize in advance.  This is going to be a rambling grammatical mess.  I just need to write this all down and I really don't care about all the mistakes.

 God is great all the time.  I know this, but sometimes I forget this.  Sometimes I forget this, and almost always, I take this for granted.

Lent will officially end in a little more than 24 hours.  It's been a good lent.  A really good lent.  A great lent, in fact.  I think I can say it has been my best lent since I came into the Church in 2004.

I haven't felt so close to Jesus in a very long time, and I've missed it.  When I was coming into the Church, and for the first several years after I came into the Church, I could feel Him with me always.  My heart was on fire for Him and it was like an intense spiritual high.  He was constantly sending me consolations and signal graces.  This didn't last forever though and although I know He is still always here, the extraordinary little things that blow me away seem to happen much more infrequently.

I've been questioning everything I am doing and have done as a mother for quite some time.  I really don't want to ruin my kids and sometimes I feel like all I ever do is make the wrong choices.  For the past couple of years I have been praying for Him to just let me know what He wants me to do.  I have been asking Him to show me what He wants, because that is all I want.  I only want to do what He wills for our family.  I can never seem to discern His reply.  During my holy hour on Tuesday I was trying to stop the litany of worries in my head and just listen, but I couldn't do it.  Every time I would try to be silent and listen a new question would appear.  I was frustrated.  How can/could I figure out what He wills, if I can't/couldn't even shut up for one second so I could listen?  I desperately wanted Him to just TELL me what He thinks.

Last night I realized that if I wanted to get to confession before Easter, it was going to have to be after the 6:30 Mass this morning.  So, I woke up early, got out of bed, and headed off to Mass.  I had taken the time to examine my conscience last night and my list included some heavy hitters that for the first time I was able to admit to myself and prepare to let go of.  So, I was nervous.

Now, I have to say here that I have been begging God to melt the ice that I have built up around my heart for years, and he has been breaking through and chipping away all through lent.  I have been feeling little bits and pieces of His love in a powerful way off and on all throughout this lent.  Little bits and pieces are nice, but this morning He took a blowtorch to that puppy and melted an iceberg.

I was standing in the confession line when a dearly loved and familiar face approached me.  We hugged and she asked me if she could pray for me.  My heart said, "yes, yes, yes!"  I nodded and silently worried if I was going to have time to go over my list one more time before my turn in the confessional.  I did not need to worry.

This friend has gifts.  She prays, and the Holy Spirit uses her to speak to people like me who are too deaf to hear Him.  As she prayed, without having seen my list, or asking me what was on it, she pretty much went right down my litany of sins addressing almost every one, and heavily hitting upon the ones that hurt the most.

I stared at the Tabernacle, as tears flowed, thinking about how great God is.  One time this same friend told me that He told her I was His spoiled little brat (said with a tender fatherly affection).  As I am typing this I can't help but think about how true that is, and what a tender love He has for me, despite my spoiled brattiness.  I am such a spoiled brat that I complained about not being able to hear Him and He brought me someone who would audibly relay the message.  She literally answered all the questions that have been weighing most heavily on my heart, and she didn't have a clue what He had done through her.  He amazes me.

I went into the confessional, already crying, and sobbed so hard I couldn't speak.  Father was wonderful and gentle and I received loving and wise advise.  I walked out, snot flying everywhere (literally, it was disgusting), and looked again at my love, hidden so humbly in the little golden box.  I left the church, my heart bursting with love for His goodness and mercy, and reminded myself that I shouldn't be surprised because God truly is great, all the time, and sometimes He makes His goodness so obvious even I can see it through my "glass is always half-empty," spoiled brat, goggles.


Tuesday, March 10, 2015

It's Not all Sunshine and Smiles

     We are on day two of the fourth quarter in our fifth year of homeschooling.  We've made it through newborns, toddlers, and tantrums.  We've made it through super busy phases and super lonely phases.  We've made it through, but today I almost threw in the towel.

     Do a little research on any homeschooling site and you will read that traditionally February is the month when most homeschoolers will give up.  This has never been true for me.  In our house it is always March, and March just slammed into our basement this morning.

     Homeschoolers, books on homeschooling, and homeschooling sites that pop up on google searches all do a great job of shouting the pros of homeschooling from the rooftops.  They will tell you all about how smart your kids will be, how much better (yes better) socialized they will be, how your children are going to be BEST friends, and on and on.  After almost five years, I call their bluff.

      I'm also not convinced that the whole world is out to get homeschoolers and shut us down.  I bought into that one for quite awhile, and in all fairness, it was probably very true a decade or two ago.  The reality of my five years of experience, just shouts a different story though.  The number one reaction that I get when I tell people we homeschool is, "Wow, that's awesome."  This is usually followed up with, "I wish we could do that, but we can't, I could never do that," or some form of admiration.  There have been a much smaller number of times when I can tell the person isn't in favor of our choice, but those interactions are far less frequent, and I have never felt threatened.  Teachers, coaches, the school district...ALL of our interactions have been positive.

     All of this leads me to this post today.  I believe that homeschooling is great.  It can be all of those things advertised above.  It really can.  However, I do see a lot of people almost putting a halo on the head of the homeschool movement, and while the support is needed and very welcome, the halo needs to come off.  It needs to come off because people discerning homeschooling need to know that it does not come without hardship, tears, and struggles.  So here goes:

What you will read:  Your kids will be brainiacs and love school!

My experience:
Yes, my kids are pretty smart, but no smarter than they would be if they were in a regular classroom. I do see a little more zeal for learning than they might have in a regular classroom (like they all come running for history even if it is not their history lesson), but they also complain about school and don't like doing the work.  This may be in part because our homeschool is very much a school at home environment.  I would venture a bet that a more laid back homeschool environment really can produce a greater love for learning, but again this can also happen in a traditional classroom with a motivating teacher.

Socialization:  Your kids will be socialized better than their peers!
My Truth:
My kids get lonely.  Most of the time they are okay.  We do a lot of stuff outside the home, and my kids even go to regular school once a week, BUT they still get lonely.  So sure, they are properly socialized (in the true meaning of the word), but they don't have the same opportunities to develop friendships as their traditionally schooled peers. No, they are not having to deal with all the junk found in a regular school, but that can also be a downside.  They are not LEARNING how to deal with all the junk.  Oh, and about my kids being best friends...they are, BUT they are also the bullies and the bullied, and instead of being hurt by someone outside of their family, they are getting hurt by the ones whom they love the most.  Socialization is more of an issue for our family than it might be for others because my older two children are lacking children their age in our homeschool group.  I don't see this as much of an issue with our younger boys, and to be completely transparent neither of the older two really complain about playing with younger children, they enjoy it.  However, as a mother I know they NEED a bit more interaction with their peers.  I am often reminded that children in a regular classroom can be lonely too, and this may not necessarily be a homeschool issue, but since we have chosen to homeschool I have to wonder what if.

Which leads me to...
The issue that brings me to tears:
The stress of knowing that this is a choice that we have made for them, and the possibility that it might not be the right choice.  The what ifs are never ending.  The pressure is high.  When your child isn't getting math, YOU are responsible.  When your child displays some awful behavior, YOU have been the role model.  Insecurity in my head runs rampant.  Raising my children is the most important job I will ever have and messing up something so big is completely overwhelming.  In all fairness, I am sure this goes through all parents' heads.  If I had my kids in public school or private school I am certain I would be wondering if I were ruining them by that choice as well.  Worrying about what ifs is just what I do.

     At the end of the day, or in the middle of the afternoon after a horrible morning, it just comes down to trusting God.  I have to trust that we are following His will for us, because He really did make His will very, very clear for us on this issue.  I have also learned not to make any rash decisions in the midst of a meltdown.  By noon today I had researched and mentally noted the pros and cons of our public school, the closest private school, and the private school our kids currently attend once a week.  I was a ball of tears and ready to send our oldest to the yellow bus tomorrow morning.  Two hours later the tears were gone, replaced by hugs and smiles. Our kids were gathered around me listening intently to the state capital quiz taking place between myself and my son.  I looked up at that moment and said, "Guys, THIS is what homeschooling is all about."  For me, for us, it IS worth it.  I really do love homeschooling.  It's just after five years, and a really bad morning, I just strongly feel that other parents need to hear about the not so sun-shiny moments too.



Wednesday, March 4, 2015

I Popped My Catholic Bubble: The Reason Behind the Name Change

When I came into the Church I went through a radical conversion.  The majority of who I was and what I had done for most of my life made me cringe, and I thought, "I am so glad that I am not THAT person anymore."  I got rid of everything that reminded me of who I used to be and promptly created a bubble around myself.  I breathed a sigh of relief thinking that my cringe-worthy behavior was over and I wouldn't have to deal with any of that again.  Little did I know that 11 years later I would be cringing again.  This time because of who I became within my bubble.

 I entered into my bubble with a heart bursting with love.   Love for Jesus.  Love for my new found Catholic faith.  Love for all of His creation and a profound gratefulness for His mercy.  I was on fire for the faith.  Unfortunately, over time the love in my bubble was smothered by fear and pride.  Instead of a beautiful sanctuary, it became a fortress keeping everyone and everything out for fear of contamination.   I saw evil in everything and was in constant fear of unintentionally opening a door to the devil. The joy was gone and I began searching desperately for the love that was lost.  I was beginning to despair and lose my faith.  Finally, it became clear that my bubble needed to be popped.

So I popped my bubble.  I popped it, and our family emerged from a place filled with fear and began to rebuild.   My heart needed to get back to the place it was in when we began this journey.  I felt like I had climbed a mountain just to get halfway up and jump off.  I was confused.   I questioned everything.  Was I going crazy?   Was this really what God wanted for us?  The answers were made very clear.  In my bubble, I had run up the mountain the first time.  Pridefully pushing people out of my way in my zeal.  Finally I reached a point where I was the recipient of all that I had been dishing out.  It hurt very badly, but  I needed to feel this.  I needed to feel the rejection.  I needed to feel what I had done to others.  It sparked a flame of compassion in me, and brought to light the need for my own repentance.  I needed to go through all of this so that I could start over. This time not trying desperately to bubble up and keep others out, but rather trying desperately  to hold onto the love in my heart so that others might see it and want to come with me.  I am going more slowly and carefully this time, because I am sure I haven't learned nearly as much as I think I have.  The only thing I can say with certainty is that I am never going to be done making myself cringe, and I think that the humility that comes along with making yourself cringe is not necessarily a bad thing.  In fact, this whole post already makes me cringe.

Tuesday, January 20, 2015

Here We Go Again

     We are nearing the end of January and I am in full swing trying to get back on the right track with my body.  After many months of feeding the gluttonous demon that lives in my stomach, I am 20 days into a tiny of taste of success in the never ending battle I have with sugar addiction.  My goal is to avoid type 2 diabetes at all costs, or at least to delay it, because she most certainly will be knocking on my door in years to come.  I don't really know how to make things work this time.  In all honesty, it probably won't.  I will probably lose some weight and do well for awhile before falling, spiraling out of control, and ending up in this exact same situation in a few years.  My newly revised strategy for attempt number 5 thousand gagillion (yes I know that is not a number) is to eat like I ALREADY have diabetes.  Back to my gestational diabetes diet.  History has proven that this works for me, and it is already working.  Sticking to it long-term when I am not being told I HAVE to is going to be my downfall.  In the meantime, I thought I would share some of my favorite apps (and one product) to help in working towards a fitness goal.

For keeping track of calories, progress, exercise, and more:
This is hands down my favorite tool.  The database of food is incredible so it makes counting calories and other nutrients extremely simple.  You can also plug in your exercise, sync it to fitbit, create goals, and track your progress.  Love, love, love this site.  Oh, and my favorite feature tells you at the end of the day where you would be in 5 weeks if everyday looked like the day you just finished.  THIS is awesome.  Not only does it send you instant gratification to keep going on your good days, but it puts things into perspective on your bad days too.  You would have to mess up A LOT of days in a row to completely ruin your fitness plans.  This was KEY for me in losing weight a few years ago, because I tend to throw in the towel as soon as I mess up and deviate from the plan in the slightest.

For motivation and support to exercise:
This is fun because it is a way to get support from friends and it's fun to see all that you have accomplished throughout each week.  Even though I used to think of it as a site mainly for runners (I am not a runner), it is not.  It is so much more!  You can keep track of pretty much any activity that you are doing.  You can also sign up for, or create, challenges.  It's been a great tool for me!

For finding out just how much you move throughout the day:
Okay.  So.  I. LOVE. MY. FITBIT.  This is the coolest little gadget.  I didn't love confirming just how embarrassingly little I move as a stay at home mom who sits on her butt at the teacher's table most of the day, but I LOVE that it CAN tell me!  I wear this puppy everyday.  Love it.  It counts steps, estimates calories burned (from stepping and just living), counts flights of stairs, and estimates distance.  It also keeps track of sleep patterns, but I don't use it for that, because I found it was keeping me awake because I was wondering what it was thinking.  Does it think I'm asleep now?  How about now?  Now?  I am not sure how accurate the calories, distances, and sleep tracking are, but the steps are spot on.  It also syncs with My Fitness Pal....BONUS!  I love this because even on days when I don't fit in an actual workout, I can try to bump up my steps to make up for it a little bit.  I also love that if I am hungry I can move around a bit more and earn some extra calories over at myfitness pal through the sync.