Ten Fingers and Ten Toes?

I often lie in bed at night thinking of all the words I want to write.  I wish my thoughts could be dictated and sent to the computer for editing.  It's not that I don't enjoy writing about my thoughts, it's that I have so many thoughts and so much to say that I just don't always know where to begin.

Recently, and not so recently, people have come to me and said, "You really need to start writing again".  I always agree with them.  "Of course I do!," is my first unspoken thought.  So tonight the children are asleep early, the TV is off, the washing machine is quietly humming in the back ground, and the cat is starring me in the face as I write...and so I begin.

Peyton Marie will be a year on November 3, 2011.  As I look back on this year, my thoughts drift to my pregnancy months.  Many pregnant mothers are asked the question, "What would you like to have, a boy or a girl?".  Most of all the responses I hear (and have said myself) are, "I don't care as long as it's healthy".  I remember in the summer of 2010, as I was a "Crew Leader" for my church's vacation Bible school, one kind lady said, "as long as the baby has ten fingers and ten toes".  At that time I smiled and said, "Of course!".  We often associate "ten fingers and ten toes" with healthy babies.  There are many babies born with ten fingers and ten toes but they struggle for their lives shortly after they are born.  Others born with ten fingers and ten toes may never learn to walk.  So does ten fingers and ten toes mean a baby is healthy?  And then I begin to think..."what does HEALTHY mean?".

Peyton Marie is NOT sick.  She has actually only been sick one time and she was hospitalized because the doctors wanted to rule out an infection of her shunt.  She is probably healthier (I would bet money on it if I were a gambling woman) than some other children that do not have the diagnosis of Rhombencephalosynapsis.  In fact, every one of us has been sick to some varying degree:  Pressley, Pierson, Jason and myself.  Peyton Marie remained HEALTHY even though WE were sick.  Now don't misunderstand me, Peyton Marie has challenges.  But, she is not sick.  She is actually very healthy.

Now I realize this is getting long and I don't want to lose your attention.  I am writing tonight to let you know that Peyton Marie is healthier and happier than any of her doctors imagined.  After having more surgeries than you or I have had in a lifetime, she is still smiling and laughing like a healthy, 11 month old.  I have heard many friends, family and acquaintances, all of whom care for Peyton Marie, say they have been praying for her.  I know they have.  The evidence is in our little girl.  Pressley, Pierson, Jason and I have seen Peyton Marie through all her therapies and surgeries.  Her most recent surgery was the posterior fossa decompression surgery.  Her ventricles look "good" and her surgery seems to be a success.  She is saying "all done" and waving "bye-bye".  She is clapping her hands and saying, "yaaay!".  She is eating well and gaining weight.  So to all of you moms and dads that may have children who have some challenges:  our children may or may not have ten fingers or ten toes, our children may or may not walk, our children may or may not have hardware in their brains or braces on their legs.  But, I do know...our children are healthy.

Still uncertain, but learning more at 35 weeks

It's been a long while since I've written a blog.  I think about it and then become busy with life.  As we moms know, it's difficult to do all that we want and the laundry never ends.  So, I've been wanting to update everyone as to what's new in the pregnancy.  But first, I want to thank everyone for their continued support and prayers for the baby.  I wish I could personally thank everyone, but amazingly, that's impossible.  I say, "amazingly" because I have people praying for us that I don't even know.  How wonderful.  And to everyone...thank you.  Please continue the prayers. 

A few weeks ago I was able to see Dr. Troup, the neurosurgeon that will perform the baby's shunt.  He reviewed the ultrasound pictures that were sent from Dr. Greig's office.  He had another opinion about what he saw, but then reassured me that if his opinion were actually true, that other doctors would have caught "it" already.  So, basically, he didn't have much to offer in the area of a diagnosis.  He will do the surgery and repair her "plumbing," meaning shunting the water from her ventricles in the brain into the abdomen. 

Today I saw Dr. Pickleseimer (okay, I have no idea if I spelled that correctly.  My apologies...).  She was very helpful.  Perhaps she wasn't helpful in the prognosis of the baby, but she was helpful in speaking to me like she "got it".  It appeared she understood my concern and urgency.  She is confident in the diagnosis of Rhombencephalosynapis.  And believe it or not, this was reassuring to hear.  With four other different "opinions" from four other professionals, I just wanted to hear that someone else agreed with the first diagnosis.  From the ultrasound today, the ventricles are measuring around 37-40.  The baby's body is in the 60th percentile for growth, while her head is in the 98th percentile.  She does not have any other anomalies and her karyotype is normal.  She received an 8 out of 8 on the biophysical profile. She was even practicing her breathing, which is a sign of health.  My amniotic fluid is normal as well, suggesting that she is swallowing and urinating as she should.  Doctor's were concerned that I may eventually get polyhydramnios (too much amniotic fluid) because of her anomaly, so to hear that the fluid level is normal gives me hope.  This is all great, especially after reading from the reports sent from Boston that there was a high chance of intrauterine death.  I'm clinging on to the positives. 

I have a long road ahead of me.  I have accepted the situation.  From what I have learned over the last 15 weeks, I am gaining more and more confidence that she'll be okay.  I can't deny that she won't have some developmental delays, but I will take that as a blessing!  People have asked how I'm "really doing".  Thankfully I keep busy with school, Pressley and Pierson, the home, and the daily activities of being a mom.  I'm still able to take my step aerobics and Zumba classes at the Y.  I try to walk several times a week.  Physically, I usually feel great...minus the "always tired," occasional headache and always feeling hot.  Emotionally, I'm just drained.  There's so much "other stuff" that's going on in my life that dealing with the baby almost seems easy.  But I'm strong (so I've been told) and I can get through. And I will.

Aug 27, 2010--Findings at Scan

I want to write down what I can remember, so I have quickly come home, eaten lunch, and am now writing about what happened today at my doctor's visit.  I had two ultrasounds.  I asked a lot of questions, this is why I had the second scan--the doctor had to "re look" at the brain to confirm his answer.  So this is what was seen. 

Firstly, the ventricles are measuring at 34-35 mm.  That's huge.  Normal is below 10.  There is a very thin line of the brain that is pushed up against the skull.  The hope is that once the baby is born and shunted, the fluid will resolve in the ventricles, and the brain will expand into the space where the fluid once occupied.  The baby's head is measuring 33/34 weeks.  I am almost 30 weeks.  This is too big for a vaginal delivery if I carry to term. I will need to deliver by C section.  This is a huge fear.  I am very upset about having to undergo this.  I asked if there were a good reason to deliver early (say, 35 weeks) and try to mature the lungs.  And ethically, this is not possible.  I was hoping that by delivering early, I could avoid a C section, but a large head  is not an indication to deliver early.  However, if another problem arises...cord problems, amniotic fluid problems, fetal distress signs, pre-eclmapsia...than this would be a reason to deliver early.  At this point, I am not having other "problems".  If these doctors could only be a fly on my wall!

So, after asking questions about the size of the cerebellum, the vermis, and the fourth ventricle shape...the doctor decided to scan me again.  He commented that I must have done my reading!  In literature, the fourth ventricle of babies with rhombencephalosynapsis have a "keyhole" shape due to the absence of the vermis.  He looked at the fourth ventricle and said it was completely normal.  That only created a further question...is there a vermis?  After looking at previous ultrasound pictures and scanning a second time, he said he would "bet the house" that there is a vermis.  He said the cerebellum also looks normal but he was not going to dispute the MRI findings, but that he would have to argue the validity of fetal MR imaging because babies move a lot in the womb!

He scanned the spine again...looking for a neural tube defect.  None.  He looked for club feet, cleft lip/palate, polydactyly, and syndactyly...all clues to underlying issues.  None.  He reviewed the amniocentesis...nothing significant.  So again, we just don't know.  And not knowing is very difficult to digest.  It seems that thoughts change from one doctor to the next.  That's no one's fault...it's just that no one knows.  In a way, this gives me hope.  It further clarifies my inclination...that the "best" neurosurgeon does not know, the maternal-fetal specialist does not know, and the nursing student (me-ha ha) does not know.  Only God knows.  All we do know is that she will need to be shunted soon after birth.  I will be having a biophysical profile in a few weeks to determine her overall health.  I'm also meeting with Dr. Troup, a neurosurgeon with GHS.  I don't count on him having more answers, but at least it gives me a plan of action. 

Not the middle finger!

Thanks to everyone for reading all my posts.  I am going through some uncertain times right now and really need your prayers.  Continuing in the nursing program, raising two school-aged children, and dealing with expenses is going to send me through the roof, but at least I know I have a family of friends reading my blog and praying.

My feelings are real

Sometimes I will go for a drive to just clear my mind.  My mind goes in a million directions, as if it's a pen and a writing tablet and the thoughts are pouring out.  But the theme of every conversation in my head is:  "No one understands what I'm going through".  I can explain the diagnosis; I can give examples of a prognosis; I can discuss medical interventions, but I can't fully express the emotional toll and instability I am experiencing.  I have moments when I am certain that adoption is the right choice for us.  The next moment I just want her home with us.  And even more discouraging is knowing that everyone's eyes are on me.  People see us differently.  They look at me differently.  They avoid comments that a woman with a "normal" pregnancy would receive.  I know that they are wondering how I will handle this situation.  They say kind words of encouragement but this doesn't always make things easier.  Luckily I haven't withdrawn too much from my normal activity.  Initially, I wanted to stay in bed and cry.  And often, I will just start crying.  But at least I can find happiness in my children, my daily activities, my close friends, and my family. I'm afraid if I stop doing the things I love, or slow down my pace of life, then I could easily slip into a deep depression.  Jason and I are handling this differently. This too, is causing a stress in our lives together. No one understands what I'm going through, not even Jason--the ups and downs, the good days and the bad days, the fights and then the hugs, and the feelings of being distant. 

My one wish would be...for those of you who haven't gone through a similar situation....do not judge these feelings.  Just continue to pray for us.  Continue to uplift both Jason and myself--not condemn one over the other nor speak poorly of one of us.  It seems that even through a matter like this, people will want to take sides instead of uplifting us both. In my opinion, there's no room for taking sides--allow us both to handle things in our own way and express our feelings without fear of rejection. 

Thank you to everyone...I feel the love of my church family, my friends from school, my Bible study ladies, and others who have been available to listen.  As of today, August 15, I would love to continue through this pregnancy as if it were normal and our baby girl will come home with us, sleep in our room, and nurse all through the night (How many times did we complain about that, moms?!).  I would want this baby to be showered with love and acceptance.  If only I had a clear answer.

The options: interrupt the pregnancy, adoption, or raise her.

This post is probably the most difficult to write, but also the most prevailing in my mind.  I write to help with coping, so I don't need this to become an added stress.  By this, I mean, I would prefer not to hear negativity, criticism or discouragement. 

On that awful day in June, all we heard was, "terminate".  There might have been other words mingled into the Ob's discussion with us, but honestly, all I could hear was "terminate".  We could feel his preference and this is all he wanted to discuss.  We left that office speechless, in tears, and in a very low spot. 

This "low spot" continued for the next several weeks.  We received a book called, "Difficult Decisions".  I read this book on our flight home from Boston.  It was the most awful read at such a heartbreaking time.  Jason and I hardly spoke.  I cried mostly.  This book discussed termination procedures, continuing the pregnancy, guilt, and including children in the grief.  Another website, called, http://www.aheartbreakingchoice.com/, was another place that was suggested I look over.  Jason did not read this book or go to this site.  I can't say for sure why he didn't, but perhaps he had all the information he needed.  However, as a woman, I knew that I needed to do more than just "accept" the situation. 

While speaking to Dr. Greig, our maternal-fetal specialist, we asked about adoption.  This was never an option that was suggested to us.  We were referred to an RN that works closely with Dr. Greig, and she was able to do more adoption research for us.  At this time, I was about 22-24 weeks in pregnancy.  Jason and I went from one choice to the next; when he thought one choice was better over another, I thought another choice was even better.  And, to make matters worse, we both changed our decisions on what the best choice would be--the choice that Jason preferred last week, was no longer the choice he preferred this week. By the time I had finally agreed to his preferred choice, that choice had already changed.  We had chosen more than one choice all within these few weeks. The signals were mixed-I believed he said one thing, but then his beliefs changed quicker than I had the time to contemplate them.  Our emotions were all over.  I felt, and still feel like, I am on an emotional roller coaster.  We both want to make the right decision--for us, for our baby, and for Pressley and Pierson.  This was not a "one-man" decision; it involved us all, which made it even more difficult to come to an agreement. 

Today I would say that I am choosing adoption for our sweet, baby girl.  I believe that this is the right choice for all of us.  I wish I could say that I have enough support, enough time, enough money and enough positivity in my life that would allow me to raise our baby girl.  Even though Jason tells me that he would be okay with any decision I make, I still feel the burden of making that decision.  Yes, we have discussed our options numerous times but it's too much for me to make this decision on my own. I have been given a dose of reality of what Jason's work entails--long hours translates to very little time to help out with home.  And as most of you can imagine, I cannot take this responsibility on my own.  I wish I could be super-woman, even with my daily responsibilities with "normal" children.  And the unknown details of our baby's prognosis even brings more uncertainty.  I am finding it very difficult to wrap my mind around what "might" be.  What I do know and what I have been told leads me to think that raising her, with little support, is not something I can handle.  I do not want to sound negative; I do believe adoption is a positive choice for our family. 

I may change my mind.  I may find more support and encouragement.  I may find out that her prognosis is less severe than believed.  I hope and pray everyday for my baby girl.  The love I feel for her is undeniable.  I can't turn off my feelings.  I can't pretend this isn't happening.  I am trying to move forward and have a positive attitude in all I do.

What is Rhombencephalosynapsis?

Rhombencephalosynapsis is a rare, sporadic maldevelopment of the brain where the vermis is absent, causing the fusion of the two cerebellar hemispheres.  In the early weeks of pregnancy, it is believed that there's an insult on the baby's brain. The vermis of the brain is responsible for balance, which includes head control, walking and sitting.  Also in the findings, is ventriculomegaly, or enlargement of the lateral ventricles of the brain.  This is putting presure on the baby's developing brain.  Rhombencephalosynapsis is characterized by significant developmental delay. Other symptoms may include muscle hypotonia, attention/hyperactivity problems, alopecia (baldness), head rolling, and cognitive impairment.  The doctor's have reassured us that this would not happen again and it is nothing we caused. 

If you read from these websites, you may see that these particular children have above normal IQs, which is different than what other literature might say.  For this reason, we really just don't know the outcome of our little girl.  The kindridfoundation goes into much more detail about Rhombencephalosynapsis.

Some support websites are: 
http://www.rhombencephalosynapsis.org/
http://www.kindridfoundation.com/

Fast Forward to Today, August 7, 2010

Do you ever feel like someone can tell you you're crazy, or call you bad names, or make you ashamed of your lifestyle (even if you strive to have a Godly lifestyle), and you become a believer of those names or those accusations?  You may get to a point where you think everyone else believes these names too.  After months of trying to put on the happy face, pretending nothing is wrong and being told that crying is a sign of the weak, you reach a place where you never thought you'd be.  I call that place, "over-the-top".  I look around at all the people acting nice, doing good things for another, and even my ex-husband treating me nicer than during our marriage...and this all makes me wonder...."If everyone is acting so nice, why am I feeling so yucky?".  Then, I remember....the stress of an uncertain diagnosis, the stress of a marriage that seems to be spiraling downward, and bills that are mounting all seem too much for my little mind to handle.

Is this my fault?  Doctors tell me, "No, it's sporadic and will not happen again."  But, I search for the answers to the "Why?".  Some can say that this is my fault and I know they're wrong, but I am the one carrying this baby, so maybe I did something wrong.  But look....I have helped create three beautiful, healthy babies.  And this baby will be just as beautiful.  This is the mind game that happens in my head--non stop.

So, what does "over-the-top" look like?  After a day of name calling, of arguing, of damaged property, of hurt and crying...one person can say something perfectly rational, but to me, sounded like a grenade exploding in my head.  And that's where I lost it.  A poor, innocent bystander just got an earful.  I had never seen that look on this poor person's face.  No amount of apologizing can ever fix what I did.  Thank goodness, he knew not to challenge me or say another word back.  I blew up and lost my temper.  I yelled at him to stop talking, hand motions and all, and said, "______, I didn't ask you!". 

I am asking those of you who know my real heart, I do not mean to offend you, please try hard to understand if I blow up and lose my cool.  If I could, I would take every Ativan, Lortab, and Celexa and make a nice potion.  But that's unrealistic and would probably kill me.  I just need understanding and compassion at this time.  Please, help me find my sanity again.