Wednesday, March 30, 2011

A million tears...and a million smiles.

Over the past 5.5 months, I mist have cried a million tears. In the beginning, I literally cried so much that the skin below my eyes peeled off...sounds gross, but it's true. I used to cry myself to sleep every night. I still do on occasion. I actually slept while snuggling one of XXX's blankets. I did it, because it smelled like her. One of the hardest parts to every day is the 30 minute drive home from Dad and Lori's house. I kiss my daughter goodnight...and then I leave. Most of the time, I'm crying before I even leave the driveway. My glasses almost always have dried tears on them. I never used to be able to cry. I guess XXX taught me that it is ok to break down. I still try to be strong, but it's ok when I'm not.

While I have cried a million tears since October, I've also smiled a million smiles! XXX is such a joy to be around. You can't help but smile when you are in her presence. She us so funny...she will do things and then laugh at herself...which is even funnier!

This afternoon, I was in the midst of a pity party. XXX was in her exersaucer. I was thinking about how much this whole situation sucks. I had tears in my eyes. XXX must have known that I needed her. It wasn't a few minutes later that XXXX said her first word..."mama" and she reached for me. My tears of sadness quickly changed to tears of joy, as I scooped her up in my arms. She squealed in delight, as I covered her in a million kisses! I'm so thankful to have these moments with her! I just wish she was lying here next to me...snuggling with me. I can't change it just yet. But...soon...she will be home, where she belongs!!

- Posted using BlogPress from my iPhone

Tuesday, March 29, 2011

How is she now...and thank you!

A lot of people have contacted me via facebook wondering how Baby beautiful is doing today. The answer is simple...she's perfect!  She has no lasting problems from the seizures or from the bleeding.  She has had numerous assessments done by the early intervention team, and they have all concluded that she is meeting or exceeding all developmental milestones.  Her last assessment was done in the beginning of February...she was barely 5 months old.  At this assessment in several categories, she tested at the 6 month level and in one she tested at the 8 month level.  Cognitively, she was doing some skills that are not typically present until 9 and 11 months.  The only thing that she was not yet doing was rolling over.  Well...she showed them...that same week she decided that rolling was fun!  Tomorrow, I will be taking her to see a doctor that specializes in developmental assessments.  She will see him once a year until she is 3.  I'm excited to see how she is doing!  She has been sitting completely unassisted since the day she turned 4 months.  She has been standing holding on to furniture since was was a week past her 4 month birthday.  She laughs and coos.  She smiles and flirts.  She is such a joy to be around.  Her latest trick is filling her mouth with formula and then blowing raspberries while it is still in her mouth!  Fun!!! (or not for me!)  She has her two bottom teeth.  She is simply amazing.  I was very terrified that any amount of bleeding or simply the seizures could leave her with a devlopmental disability.  Those fears are now behind me.  I am certain that she will be smart...just like her mommy! 

I also want to take a moment to thank everyone for their outpouring of support.  It means so much to me.  It took a lot of courage to put myself out here like this.  I'm so happy that I did.  I only wish I had done it sooner!  I was afraid that people might be skeptical and judgmental.  But, as a friend told me...if someone wants to be negative...they aren't worth having as a friend. I did nothing wrong.  I have nothing to be embarrased about.  So....thank you!  I really have amazing friends and family!  I also can't believe that not 24 hours after I told people about the blog...I have over 2,500 hits!  Holy Moley!!!  Please share the link to my blog.  Let's spread the word.  I want people to know that this kind of thing happens.  If it can happen to could happen to anyone! 

Monday, March 28, 2011

How have I survived?

So, many people have asked me how I have survived this ordeal. The answer is simple...I have no choice! Others have told me that if it was them, they'd have gone postal...or taken the baby and ran...or something...but I can't. None of that will ever help to get my baby home. For now, I have to jump through the hoops. I meet with the caseworkers, psychologists, social workers...and whoever else they through my way. I never stop telling them that I didn't hurt my baby girl. I never will stop telling them this.

My family has been such an amazing support. They have listened to my fears. They have cried with me...hugged me...and assured me that all would be ok. My father and step mother have bent over backwards to keep me as XXX's mom. He let's me make all decisions...and makes sure that I do all of the firsts...first bath in a big tub...first bite of solid food...first trip to the park. That means so much. My mom has allowed me to move in to her home. She has been amazing. Everyone allows me to share my frustrations and vent about my fears. They have helped me in ways I cannot describe.

My friends have been amazing...they do what they can to cheer me up and let me know that they are there rooting for me and standing on the sidelines. They are amazing.

God is a big piece of my life, as well. It has been tough. My faith has been challenged repeatedly. But I am trying to keep in faith. XXX and I go to church with my dad every Sunday. We pray and ask God to bring her home. I'm certain that someday he will!

And...I can't forget my WTE family!!!! OMG, they are amazing! As soon as I found out that I was pregnant, I began to frequent the message boards. My fellow Sept mommies (Even though XXX was born in Aug, she was due in Sept) have helped me from the beginning. I first posted about her seizures and then posted when she was stolen from my arms. Their continued support has helped me to survive. They initiated a fundraiser to help with legal fees. They declared last Friday to beXXX Day...and posted pictures of their kids with signs and tshirts that say "team XXX" on them. They lit candles all week and took pictures. They are freaking amazing! They have been my sounding board. They allow me to vent my frustrations and then they kick walls for me when I'm not able! They support me and cry with me. I will never be able to repay them for their kindness. Here are some pictures that were posted last Friday...

I'm sure I missed a few...there were so many...these are just from fb alone! There were so many on the website, too...but I'm having trouble finding the threads right now. But...the point fabulous WTE ladies...I <3 you and all you have done for XXX and I!!!

How this nightmare has changed my life....

I used to live a relatively carefree life.  It wasn't perfect, but it was my life.  For the first 5 weeks of XXX's life, I spent every waking moment playing with her and holding her.  I also used to love my job.  Life has changed...drastically.

My everyday life has changed.  I wake up at the crack of dawn with stomach pains and headaches.  I get up, showered, and out the door.  I'm at work by 7:30, so that I can get off work at 3:30.  I then drive the 30 mile trip to my dad's house.  That's where my day really begins.  I get to love, cuddle, and parent my child until about 9pm, when it is time for her to go to bed.  I am so thankful that my parents have given me the opportunity to make all parenting decisions.  Now that she is eating solids, it is dinner time when I get there.  I come in, make her dinner, feed her, cuddle her, and lay her down for a nap.  After naptime, it is playtime (my favorite part of the day!)  Then it is time for a bath and bed.  I put her in bed, tell my dad goodbye, and drive 30 miles home.  I get home around 9:30 or 10...and then I get ready for bed.  On weekends, I get to dad's house by 8am and leave at 9 or 9:30 at night. a given week...I drive 420 miles to see my daughter.  I get about 24 miles to the gallon in my car, so that's 17.5 gallons of gas.  At the current price of $3.65 a gallon...I spend $63.88 a week in gas to see my daughter.  She has been gone for 23 weeks, so that's about $1,469.24 in gas alone!  Although, I would spend every penny I have...if that meant seeing her beautiful smiling face!

My work life has changed.  My career is in abuse prevention.  More specifically, I travel to the schools in our county providing prevention education to kids.  For the little kids, I teach child abuse prevention (mostly physical and sexual abuse).  For 4-6 graders, I teach bully prevention.  7-high school get a healthy relationships program.  In the 2009-2010 school year, I saw 3,289 kids.  This year, I have seen none.  Since my job is contingent on being able to pass a DCFS screening, I have not been able to work with kids while my case is being investigated.  My agency has taken it a step further.  I am not allowed to do prevention work with adults either.  I can have zero client contact.  On days I'm in my office, I am allowed to write program for other people...this is only 2 days a week.  On all other days, I am forced to clean the agency offices.  Last week, I did the following: Tuesday: clean the domestic violence shelter top to bottom...mostly scrubbed walls all day.  Thursday: Continued scrubbing walls at the shelter...also did an inventory on all food items at shelter and hand sanatized every toy in the shelter.  On Friday: I scrubbed the kitchen floor by hand for 3 hours trying to get all of the worn in dirt off the floor.  I went to school for 7 years, so I wouldn't have a job as a maitenance person!  What is more sad is the number of kids who are not receiving prevention education while I am sitting back.  Last year, I averaged about 5 discolsures of abuse each week.  The kids who would have likely disclosed abuse to me...for me to help have nobody to turn to.  How is this protecting kids?  If my case is ultimately indicated, I will lose my career forever.  That's 7 years of school down the drain.  I can't even get a job doing anything else in public health (that's what my master's degree is in), because I can no longer work with kids. 

My personal life has also been greatly affected.  I haven't spent time with friends in 5 months!  Every spare moment is spent at my father's house iwth my baby.  I still have friends and family who have not even met my baby!!!  I can't take her on play dates.  I can't pick her up and take her shopping.  I can't do any of the "normal" things that parents do with there kids.  My dad has been great at going with me places, but I don't want to push him too hard, either.  I feel bad asking him to take us somehwere.  I also have not slept in my own bed in over 5 months.  Going home to an empty apartment is sad.  It breaks my heart to see an empty crib.  I have moved in with my mom for the time being.  I don't want to live in my apartment without my daughter.  I have been paying rent for a home I don't even live in.  To date, I have spent over $3,000 on rent and utlities for a home I don't live in. 

Even when XXX is home, I will forever be looking over my shoulder.  I was a clutz growing up.  By the time I graduated high school, I had already suffered 2 broken bones and had stitches like 7 times.  Do I need to worry if XXX follows my footsteps?  WHo is going to call DCFS on me, then?  Kids fall...they get bumps and bruises.  I'll be afraid for anyone to see the bruises on my daughter.

My entire life is also under scrutinty.  All of my medical records (past, present, and future) are not subpeonable.  I have a case worker that I meet with on a regular basis.  I have a court appointed special advocate that comes to observe me with XXX.  I have experienced 2 psychological evaluations.  The second one lasted for 7 freaking hours.  Both went very well, by the way...with the psychologist recommending immediate reunification.  How much more will be taken from me?

Since my court appointed attorney didn't do jack squat, I was forced to hire an attorney.  I've already spent $2,500 on legal fees.  How much higher will it go?  I can thank some pretty amazing ladies over on WTE who have helped with this!  (I HEART you all so much!)

Someday...this nightmare will be over.  Changes will be made to our child welfare system.  Second opinions will be mandated...there will be "XXX's Law."  More on that later!

Our investigator...

So, another tidbit that I'd like to throw in here.  I have had professional head butts with the investigator on my case.  Gerry and I have known each other for quite some time.  It would make sense to start with what I do for work.

I work as an interpersonal violence prevention specialist for ADV & SAS (A Domestic Violence and Sexual Assault Service).  Most of my time is dedicated to child abuse prevention.  Yep, you read it.  I work to END child abuse and here I've been accused of it.  How's that for irony? 

Anyway, in the past, I have reported numerous individuals to DCFS.  There is one that stands out particularly well.  Gerry was the investigator on the case.  He unfounded the case.  I told him to get his ass out of his head.  Probably not the most professional on my part, but that's what happened. 

When we were at court in January, Gerry, out of the blue, said to me, "by the way, Laura....this is nothing personal."  In my experience, when someone tells you it's nothing personal..that means it is. 

This is the same investigator that broke my confidentiality back in October when he told the story of my case to one of my coworkers.  That lovely specimin of a person chose to then share that information with everyone else in my office.  All juvenile cases are stricktly confidential.  They are not public record.  It should never have been disclosed.  Yet it was. 

Don't you think he should have excused himself from my case as a conflict of interest?  I do!  Thankfully, things are out of his hands now.  My case was transferred to a supervisor from another region.  We were supposed to have a hearing about it last friday, but the a-hole investigator failed to turn in a form.  So, things were once again postponed.  Ugh.  Postponement.  The story of my life. 

XXXX's Birth Story

My pregnancy with XXXX was incredibly complicated.  It was riddled with trips to the ER for unexplained bleeding.  At 26 weeks, I was diagnosed with preeclampsia.  As a result of this, I had to go to the OB twice a week for the final 11 weeks of my pregnancy.  One the positive side, at each appointment, I had an ultrasound to look at XXX's I got to see her A LOT! 

At 36weeks 6days, I was scheduled for induction.  It was no longer safe for me to remain pregnant.  I was not only suffering from preeclampsia, I also began falling during the last few weeks of pregnancy, as my legs would go numb.  I have since been diagnosed with early MS. 

I was induced at 3:30pm on August 30.  My labor began immediately.  Labor was long and painful.  After about 18 hours of labor, I was given my epidural.  Life was wonderful.  Unfortunately, XXX's heartrate dropped, and so they had me roll on my side.  This caused the epidural catheter to come loose, so the epidural quit working.  I endured the final 3.5 hours of labor and pushing without pain relief.  When it was time to push, XXXX was stuck.  I pushed for over 1.5 hours, as my doctor put her hand inside me to work XXXX's head under my pubic bone.  When XXX finally emerged, the cord was wrapped around her neck.  The doctor removed the cord, and at 3:30pm on August 31, she placed XXXX on my tummy.  XXXX was purple and floppy.  She did not cry. The nurses removed her immediately, and tried to get her to breathe.  I sat there in shock and in tears.  XXX never did let out that first cry, though she did pink up and begin to move.  I thought we were out of the woods. 

When I was reunited with my daughter 30 minutes later, I was in love!  I never understood when people talked about the instant bond that was formed...that is until I experienced it.  I was a bit concerned at her appearance.  She had 2 black eyes.  Additionally, she looked like she had a blue stocking cap on...she was so purple.  But, she was beautiful! 

We were scheduled to be discharged on Thursday morning.  That didn't happen.  Over night, XXX's bilirubin levels spiked.  She needed to remain in the hospital for an additional 36 hours so that she could receive photo therapy.  This treatment did bring her levels down enough to be able to be discharged on Friday evening. 

In the beginning, XXX was so difficult to wake up.  Being a first time mom, I thought this was normal.  I frequently had to wake her to feed her.  She would generaly fall asleep before the bottle was finished.  I also didn't know how abnormal this was.  She did not cry for the first 3 weeks of life.  I thought that I just had a very good baby.  I should have known differently. 

I'm not alone

So, through this nightmare, I have met others in my shoes.  There are more people than you know who are falsely accused of hurting their babies.  Here is a link to a newspaper article.  The mom in this story was also false the same doctor that accused me.  Our babies are 2 days apart in age.  They were in the same hospital at the same fact, their room was 2 doors down from us.  They were able to get a 2nd opinion, and their case is now over.  Check their story out!

Guilty Until Proven Innocent

Imagine that you have a beautiful baby girl.  She is all you have ever wanted.  She is 5 weeks old and the love of your life.  Now, imagine that she is torn out of your arms and you are told that you are a terrible mother.  This is what happened to me.

On August 31, 2010, after 24 hours of induced labor, I gave birth to the most beautiful little girl in the world.  I named her XXXXXX, but called her XXX!  She was 7lbs 6oz and 19.5 in long.  She instantly had me wrapped around her finger.  I'll post her traumatic birth story in a later post. 

For the first 5 weeks of my daughter's life...things were wonderful!  She was a great sleeper, never cried, and I was so in love that I can't even describe it.  (I now know that her extreme amounts of sleep and lack of crying was actually a problem).  She began having leg tremors right after she was born.  I actually think that she had them when she was still in my stomach. 

On October 8, 2010, my life changed forever.  My 5 week old daughter had a seizure.  I was terrified.  I called 911 immediately, and we went to the ER via ambulance.  As soon as we got to the hospital, XXXX was doing much better.  So, we were discharged.  We followed up with her pediatrician in the morning and were scheduled for an EEG the following Tuesday in Chicago.  We never made it to that appointment.  On October 9, she had another seizure.  I immediately took her to the ER.  While there, she had a CT performed (which showed no abnormalities).  The ER physician was incredibly concerned, so he transferred us to a larger Chilren's Hospital in Peoria, IL.  For the first two days in the hospital, they ran an infectious disease panel, looking for a cause to her seizures.  These tests came back negative.  On Monday morning, she had an EEG...which was also normal.  On Monday afternoon, she had an MRI.  It was abnormal.

On Tuesday morning, the entire medical team came to XXX's room to tell me the results of her MRI.  The official radiology report stated that she had multiple hemorrhages in her brain.  I was devestated.  I didn't know what this would mean for my daughter...for her health or her future!  To add insult to injury, the doctor explained that any time a baby presents with intracranial hemorrhage (ICH) they automatically call DCFS and run more tests to look for child abuse.  I seriously was not concerned about the DCFS call and child abuse tests.  I had never hurt my daughter.  I just assumed they were just following proceedure.  Over the next couple of days, XXX had an xray of every bone in her body done (skeletal survey) and an optical exam done. Both tests came back negative.  There was nothing wrong.  I assummed that because these tests were negative, that XXX would be discharged, and the DCFS thing would go away.  I was never further from the truth.  While still in the hospital, XXX also had other tests done to look for causes of the bleeding, but those came back negative as well.  She was begun on Phenobarbital while in the hospital.  Her seizures and leg tremmors stopped immediately.  At one point, I asked her neurosurgeon (who was consulted) where her bleeding was.  He told me she had one tiny spot on the left side of her brain and possibly one in the back of her brain, but that could have been a shadow.  On the day we were to be discharged, the lead doctor on her case hugged me and appologized for having to call DCFS.  He told me that XXXX's brain injury could have come from her traumatic childbirth.  He wished me luck and assured me that everything would be fine.  I just needed to talk to the DCFS investigator to finish things up. 

On Tuesday, October 19 at about 1pm, I met with Gerry from DCFS.  He began speaking to me very kindly.  I told him the story about her childbirth (prolonged labor, XXX was stuck in the birth canal, she was very purple when born and had the cord around her neck, she had a bruise on her head that looked like a purple stocking cap, and she had 2 black eyes).  A few minutes later, his tone changed.  He suddenly showed me a report with many different types of bleeding.  He told me that they could NOT have been caused by birth trauma and that she basically had massive bleeding in her brain.  I was blown away.  During the 2 hour interrogation, he told me that I hated my baby.  He told me that because I was a single mom, I tried to make her go away.  He suggested that she must have been colicky and cried so much that i shook the life out of her to get her to stop crying (remember, I stated earlier that she didn't cry for the first 3 weeks of life!).  He came up with scenario after scenario of why I hated my baby enough to hurt her.  I shut down.  I sat and sobbed.  He told me that if I couldn't give him an explanation (other than birth trauma) for her brain injury that he was taking my baby from me and I may never see her again.  I was devestated.  I wasn't able to give him an explanation, because I didn't have one.  I had never hurt my baby.  Nobody hurt my baby.  My mom was the only other person who was ever alone with my baby.  I'm sure she didn't hurt her either. 

Gerry held to his word.  On October 19, 2010 at about 3pm, he took custody of my child.  He sat in our hospital room and tried to call for an out of home foster placement.  I begged him to place her with my father and step mom.  He finally agreed.  For the next two days, I was not able to see my child.  And my world fell apart.

On October 21, I gained a small victory.  At court, I was granted unlimited supervised visitation.  That basically meant that I was able to see her as much as I wanted, as long as my dad or stepmom (Lori) were there to supervise.  Since that day, I have only missed 4 days with her.  Three of those days were because of blizzard conditions.  Dad lives 30 miles away from me, and it was unsafe to drive.  I missed an additional day because I had pneumonia.  I stayed home to rest and keep my germs away from my beautiful daughter. 

I was initially appointed a public defender.  She was useless.  In the 4 months that she was my attorney, I called her 38 times.  She returned my phone call 4 times.  I was busy searching for 2nd opinions.  She was busy ignoring my requests for her help in getting those 2nd opinions.  In February, my family and I were fed up.  So, we hired another attorney.  He is busy helping to get my beautiful daughter home. 

I have been fighting to have a 2nd opinion done on my daughter for the past 5 months.  DCFS has blocked every attempt that I have made.  Since XXX is technically a ward of the state, I can no longer consent to medical treatment for her.  In Illinois, even her foster parents (my parents) cannot consent to treatment.  DCFS must ok everything.  DCFS determined that she has an adequate neurologist and their own doctors determined that her brain bleeding was the result of abuse, therefore, there is no need for a 2nd opinion...or so I have been told. 

Remember the report that Gerry gave me stating that XXX had massive brain bleeding?  Remember her neurosurgeon stating there was one tiny spot of blood?  There is an inconsistancy there.  I am searching for which one is the truth.  I obtained a copy of her medical records and CDs with her MRI images on them.  I was finally able to find a neuroradiologist to look at these images.  His official report stated that she had one measurable spot of blood on the left side of her was about 3x4mm (the size of a pencil eraser).  She also had several "microscopic" spots of blood in other parts of her brain.  He stated that the bleeding was in no way massive.  He stated that her seizures alone could have caused the bleeding.  In another part of his report, he stated that this bleeding is commonly seen as a result of birth trauma.  Aparantly, this report was not enough for the DCFS investigator.  So, I was able to get XXXX an appointment at the Cleveland Clinic...for an overall evaluation of the situation.  I wanted an unbiased doctor to look at all of the tests and records and then form a decision.  This appointment was scheduled.  My family was going to pay for it.  DCFS blocked it.  It would not have cost the state a penny.  How am I supposed to prove my innocence...when they won't let me! 

Since this all happened in October, I have done TONS of research on ICH.  I have learned what the symptoms are of neonatal ICH.  XXX had several...lack of crying (XXX did not cry once for the first 3 weeks of life...not even at birth); excessive sleepiness (XXXX slept approximately 22-23 hours a day until she was 4 weeks old and about 21-22 hours when she was 5 weeks old); difficulty to arouse; lethargy; and late onset jaundice (XXX stayed in the hospital for an additional 2 days due to late onset she could be under billi-lights for treatment of her jaundice).  Additionally, there are many maternal factors that increase the risk of ICH...preelcampsia (from week 26 on), induced labor (due to preeclampsia), prolonged pushing (1.5 hours), prolonged labor (24 hours), decreased fetal heart rate during labor, and cord around neck at birth (XXX's was wrapped tightly one time).

I have also read research that shows when a child is born with brain bleeding, while that blood is being reabsorbed into the brain, something as small as a sneeze can cause the brain to rebleed...certainly a seizure could have done more than that.  Additionally, a study done at the University of North Carolina showed that in infants born vaginally, 1 in 4 suffered ICH.  Most babies are not given we don't know how many have bleeding in their brains at birth. 

I am hopeful that the truth will set me free.  One day, I will get my day in court to prove all of this.  I thought that day was going to be last Friday, March 25.  I was wrong again.  Just as we were getting ready to begin a hearing, I learned that the idiot DCFS investigator did not file a required report.  So, things were once again postponed until April 4 at 3pm.  Please pray for this day! 

I will never quit fighting.  I will never quit telling anyone who will listen that I did not hurt my baby.  XXX is my world.  XXX is my life.  XXX is...everything!