Wednesday, June 29, 2011

Hormones and OBGYNs

So, this week has been eventful. Mostly because pregnancy hormones are kickin' my butt.  I've contracted a condition I've heard called "placenta brain". I've already had to write myself umpteen notes throughout the week to remember who I'm supposed to call/e-mail for work and when. But those helpful notes can never protect me from the awkward pauses when somebody asks me something simple- something I KNOW I know the answer to- only to be forced to meet them with a drooling blank stare.  It takes me much longer to process the simple English involved in the question and much, much longer to access the information the person needs.  Perhaps this is where the term, "pregnant pause" originated?  Because the pregnant lady just looks at you like she hasn't even heard you while you just stand there, wondering if there is anyone else you can ask.

Also, I probably should be restricted from operating heavy machinery. On the way to the OB, I made a wrong turn, decided to go to the doctor another way so I wouldn't have to back track. So  then I zigged or something when I should have zagged, going in a second wrong direction. Then I missed my exit, had to end up turning around, missed the exit I should have dropped off on to turn around, finally got going the right way, only to get lost in  the parking garage. It was at this point I melted down. It was a total "I'm a little teapot moment". You know, with lots of "hear me shout" thrown in for good measure.

The good news is, that when I finally got to the doctor's office I LIKED them. I was nervous going to this new OB as it is a bigger practice and I was worried about becoming "just another brick in the wall" of preggos who frequent their establishment. But my worries were unfounded; I saw two people today: a Nurse Practitioner and a Physician. They both took time with me and answered my questions and were friendly and personable. I am glad to know I'll be in good hands on delivery day.  Speaking of delivery day, because I and baby are in otherwise good health, they plan to wait till 39 weeks to do the delivery. So that puts me around the 5-6th of September. Looks like little girl will get her sapphire birthstone after all!  Of course they will be monitoring me at my million appointments between now and then to make sure she doesn't need to come sooner. Now, all this letting my little cookie bake the extra weeks means she has time to fatten up and be healthy, but it also risks her coming unannounced. I'm OK with that. A girl's got a prerogative to show up to a party on her own schedule. Especially since it is her party after all!

Oh! To close out my blog... I shall share with you a funny my doctor shared with me today as he was chasing down Evangeline to hear her heartbeat. I was telling him about being so tired lately. He laughed and said that a friend of his wife's had explained this perfectly from a medical perspective, (Picture the doctor lapsing into an Alabama accent as he said this. You could also almost see the rolling eyes and hear the sound of popping gum in his wife's friend's mouth as he mimicked her explanation). "Honey, of course you're tired, you're growing lungs and sh**!"   

"A joyful heart is a good medicine..." Proverbs 17:22

Saturday, June 25, 2011


So, this post isn't about Spina Bifida. Or doctor's appointments or anything as boring as that.  My life, my baby's life, my family's life is more than a diagnosis. Although, I will be the first to admit that with all the weekly appointments and such its easy to get caught up in all the "tasks" that accompany being a new mom of a lovely little girl with an as-yet-to-be-determined set of special needs.

I spend a lot of time thinking about being a mom to her. A lot of time trying (somewhat pointlessly) to anticipate what she will need so that I can make sure to provide it.  A lot of time being confused and asking questions on forums. Add to that a LOT of time working at a job that requires calming, counseling and otherwise dealing with families in crisis......and by the end of each day I have an exhausted body and noticeably fewer functional brain cells.

Yet somehow when I snuggle into bed beside my hubby, my eyes fall asleep easily and my soul is at peace. I am able to wake up and do it all again the next day.  I know what makes this possible. Its the simple fact that I'm not alone. Psychology has a lot to say about the negative effects of feeling like you have nobody to turn to. After all, there are reasons long periods of solitary confinement are considered "cruel and unusual punishment". There are lots of fancy ways to try and say what I'm saying but John Lenin said it best: "A dream you dream alone is only a dream. A dream you dream together is a reality."

 I don't dream about the future alone. I don't imagine my daughter's smile and play and giggles all by myself. No. I have a wonderful life partner who dreams these things with me. These days he walks a little slower so I can keep up when I waddle beside him. He lets my concerns become his concerns. We dream together lovely little dreams that we trust God to help us bring to pass. It is the fact that I trust my life partner to make that dream with me... to help me stitch it together one little moment at a time, that allows me to sleep a little deeper, to laugh a little longer, to go a little further
Sure, my baby bump may come between us now a bit when we try to hug or snuggle, but in other ways this combining of our DNA has drawn us closer as a family. Given us a higher direction. Better defined goals. Increased determination.  And in the end, my relationship with my spouse is the greatest thing I can give Evangeline. Together Bj and I can demonstrate to her what she should expect from her future husband. We can tell her with our words and actions how to have a disagreement and still fight fair. We can show her that relationships aren't always easy but that everything truly extraordinary in life takes a little work to make it the way you want. I want her to see how we always make time for our date nights. And how we do little things to show love to one another in the love language our partner best receives.

For nearly 6 years now, BJ and I have been working on our relationship and I am thankful for it. Deeply thankful. Thankful  for the unpleasant late night conversations that we put in about some disagreement or other. Grateful for each time we held our tongue when we'd rather let fly. Pleased that we each spoke up to be heard even when  we were afraid of the other's response.  Most of all, I'm very gratified that we kept doing these things. Each. And. Every. Time.

For now I can say that I truly have a life partner who knows me, loves me, and gives his best to make my life better. I hope he knows the reciprocal is true.  It is out of this foundation that Evangeline will grow. It is from these seeds our family is born. Now as this next phase of our life unfolds, I must remember to strive to maintain what we started and have been carefully building.  I must remember that there are things, goals, purposes, and dreams that have nothing at all to do with SB, appointments, doctors, plans or worries. I must remember where all this started: With one guy and one girl who thought they were in love- only to find out that what they felt was just the tip of the iceberg.

“Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven.  For where two or three gather in my name, there am I with them.” Matthew 18:19-20

Thursday, June 23, 2011

One in a million!

I was born bald. So are most of the babies in my family. This child for sure has her Daddy's DNA. Already we see her hair floating arround her head on the ultrasound.  If only that little black and white photo could tell us what color her curls will become.... but some things will just have to be a surprise.

Speaking of surprises we got so many happy  ones today. The first was getting to see her do that tapping thing with her feet and ankles. They feel like little tickles in my belly and to see her doing them on camera for me was so cool. Its almost like she hears some celestial music she just can't resist keeping rythm to.  Maybe she'll be a drummer like her father? Or maybe she'll just love music as much as I do.  But regardless, its extra special to us to see those particular muscles do their jobs.

Also, they got a good Ultrasound (US) image of her noggin. The partial view of the corpus collosum they saw on the MRI was confirmed by a total view on US today. Her brain is perfectly formed.   Her body is still running a small average. She weighs 2.4 lbs and measures 26 weeks vs. 28 weeks.

As for what the doc read in the report from the MRI about her lack of hindbrain herniation...he said "That is very good. Very, very good. Very, very, very good!" Then he smiled! :)

They took another look at her lesion, got a semi-decent view and seemed to agree with the MRI that is was sacral. It runs the full length of the sacrum but does not appear to cross the lumbar threshold.  This is good. Only 4% of babies with Myelomeningocele (evangeline's type of SB) have a sacral only lesion.  The doctor, who was happy and excited, pulled out a medical text book and showed us a little graph about babies with Myelomeningocele. In addition to showing that only 4% have sacral lesions it showed that of the ones with sacral lesions, 100% walked.  86% walked without the use of assistive devices like crutches and walkers. Only 14% had hydro and required shunts.  Although no stats were mentioned in the book about this he did say that many babies with sacral only lesions can go pee-pee on their own!

Her daddy did the math on the way out the hospital (I love being married to a human calculator).  Considering that 1 in 2,500 babies are born with Myelomeningocele and only 4% of those babies have sacral lesions.... Our baby is about 1 in a million.  But hey. I knew that already. ;)

Evangeline Grace: Kickin' SB's butt one little toe tap at a time!

Wednesday, June 15, 2011

MRI Results

I went in "prepared" today. Not only did I have my trusty notebook full of pertinent questions, I had also steeled my nerves for the "frank discussion" that I knew pediatric neurosurgeons are famous for giving. I was ready for him to tell me all she "couldn't do". I had my heart and emotions and my will hardened- ready to internally disagree with the man. I would smile somberly and nod on the outside at the tale of woe he would spin. Inside I would channel that defiant, silent, angry spirit I possessed as a girl...and remind  myself that despite what he "knew",  he was dead wrong! He didn't know her. He didn't know what my daughter would be able to do!

I had myself ready for the worst. didn't come. Its kind of like walking into a movie that has had too much hype, only to realize that the best/worst parts of the movie were all in the "previews". The doc was not nearly as negative about her condition as I'd feared, nor did the MRI find deep dark secrets hidden from the previous ultrasounds. I had worried that the MRI might reveal that she did in fact have some of the other conditions associated with spina bifida: clubbed feet, agenesis of the corpus collosum, scoliosis, the list goes on and on. But nothing new was discovered. We weren't smacked in the face with any new, scary words.  At the end of the appointment, I smiled. A real, honest, smile. God said she would be fine and fine is what it appears she'll be.

Below, I will detail what the report said:

1) "Evidence of sacral spinal defect as seen within the lower sacral region with herniation of CSF across the bony defect:" This means, we are BACK TO THINKING ITS SACRAL.  If this is true...she will walk!  The doctor was very positive about this. She may have some bowel and bladder issues as those are controlled by sacral nerves, but the severity of these issues varies from case to case. It doesn't appear that all her nerves are involved in the protruding sack.
2)"Within the posterior fossa, there is no definite evidence of effacement of the foramen magnum to suggest herniated tonsils". I'll confess that I wondered what the H^$#% they were looking at her tonsils for. But then I googled the terms and matched it up to the "conclusion" section of the report and realized that this means they did not find any definite evidence for hindbrain herniation AKA chiari malformation. So, at the moment her Chiari is...dare I say it?  Not exactly there!!!!!!  I get that this is a technicality, but the amount of herniation is what defines Chiari.  More than bananas and lemons and all that, the amount of herniation tells you how bad the chiari is (1,2 or 3). Right now, she doesn't even have a 1!  How cool is that?
3) "Within the brain there is no evidence of midline shift, no evidence of hemorrhage or extra axial masses. The corpus callosum is partially seen."  Well all that stuff about midline shift is good and them being able to partly see the corpus callosum means its THERE, lol which is good. All this adds up to mean she doesn't have any other visible brain malformations which often accompany SB/Chiari.
4) "No evidence of hydrocephalis". That one speaks for itsself. Her vents are still small and the doc informed us that in cases like hers the need for a shunt is reduced from 80% to 40%.  I thought BJ would hug the man!
5) "The cord terminates below L1 suggesting a tethered cord". This may mean another back surgery for her at some point. Depending on how tethered it is, (the cord is supposed to be hanging free at the bottom) it can cause her pain and worsening of symptoms. It will be something we watch for, but when surgery is warranted, its done and no further damage results.

So, all in all, I'm in awe of what is happening now. I feel blessed and lucky and happy. I have held something in my heart this whole time. Something that has helped to keep me strong at every appointment. Something that will continue to keep me strong in the future.  I want to share it now.

Once upon a time, late at night, back when all this first started, I was laying in my bed, tears on my face, my heart aching and I poured out my fears to God. When I paused from talking to him, I could feel him speak back.  He didn't say much. It was a whisper,  "She'll be fine".  and then he showed me a picture of his big hands, linked together and folded over like in prayer. Those big hands of His shrunk down to fit neatly over my tiny daughters spine. "She'll be fine". I cannot tell you how many times those simple words have echoed in my ears. I heard them again today when we left the office and headed to the elevators and I smiled till people must have wondered exactly what kind of idiot I was. All this time I have believed those words from Him without any "evidence" of their truth.  Now I hold my first bit of that evidence in the form of a flimsy piece of paper containing the MRI report. Soon, I will hold my Evangeline and I will see the truth of those words burn full force. She will be just "fine" regardless of what is said or not said about her condition.

Do not fear for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you. Surely I will uphold you with my righteous right hand. Isaiah 41:10