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

Partners

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

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!

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.  Aaaand.....it 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

High Five

You know its a good appointment when your doctor gives you a High Five in the middle of the ultrasound. No hydrocephalus was seen! So that is awesome news which we hope continues. Her legs are busy. (In fact those are her legs folded up by her face in the image). So that's awesome too! We still don't have any more information about the placement of her lesion than we had before, but as far as can be seen now, she has no club feet or scoliosis-both of which frequently accompany spina bifida. Her chiari is still there, but her head measurements are only two weeks behind her body now, when it was 3 weeks behind last month...so I suppose that's improvement too. (Again her head isn't REALLY smaller, it just measures that way because of the change in shape...but no worries...her head will look normal at birth. I won't actually be shaped like a lemon. lol) She is small overall though, weighing in at 1lb 5oz and measuring 22 weeks instead of 24 weeks, but she's still well in normal range- she's just petite. ( Ha! with a 5'10"inch mom and a 6' 5" dad, that'll probably be the LAST time anybody calls her petite!) I also figure I should probably lay off the caffeine and try to eat more to help her fatten up and grow! :)

All in all, yesterday was awesome. It did bring one thing into full-on comprehension though for both me and BJ. The next few years of our life will be governed by these "wait-and-see-what's-next" appointments. And thoughts like "well, its good now, but what will next month bring?". Will be a constant temptation. While we hope to hear the best each time, odds are there will be days we get news we are less than fond of. We already know what that feels like... and let me tell you its so much worse than the time the neighborhood bully punched me in the nose. Unprepared, it knocks the wind right out of you and leaves you confused about everything from what emotion you are feeling, to how you get back up off the ground... to what action you take when you finally are one your feet again. So, this desire for "readiness"results in an emotional balancing act to keep yourself prepared each time for what they could tell you on "the next apt. day" and keeping yourself optimistic and sane on every other day in between.

That's why life and faith are journeys. Evenagline's "issue" forces us to see this clearly but it has ALWAYS been true. There is never ONE FINAL ANSWER, or one moment where we can breathe easily, fully confident that everything is going to be happily every after. Each choice we make and each thought we entertain influences the next. Even so, we cannot predict or control the future. Doo doo happens. Even the Bible tells us so. It says in Psalms 34:19 that "a righteous man will have many troubles" in his life. Belief in a Higher Power does not exempt us from life's problems. We live in a fallen world. But that same verse goes on to say,"and the Lord will deliver him from THEM ALL." This doesn't mean always an instant zap of our issue while we dance gleefully in its dust. Sometimes this means a day-by-day holding of our hand as we jump through the next hoop or wait for the next bit of news. Sometimes it means enjoying the little victories while waiting on the bigger victory that lies just around the corner. And that victory will come. Maybe not when we want, or how we envision... but it is our promise. We have to fully place trust in "Him who set the sun ablaze" that He will fulfill his word and be with us always "even unto the end of the age"

Bj and I both want our friends and family to know that when you ask us for updates, they may not always be a cheerful as the one I am blessed to give you today. HOWEVER, do not ever be sad that you asked us "How things are going". You are all our biggest blessing as we go through this daily walk...and we know that one day's bad news does NOT make everything we believe for come crashing down, any more than one day's good news means our promise has been fulfilled. We are waiting. And news is what news is. But knowing that each of you is there as this unfolds makes our lives richer. Sometimes in life you need people who, like you, don't have the answer but are willing to sit with you and smile and laugh anyway. Like that group of redneck boys you can pass any given day on HWY 17 after a good rain. Truck stuck in mud up to the axel, a group of fellows standing around in a circle. Not a one sober enough to figure out what to do, but all of them nodding solemnly, "Yup. That's stuck alright". Sometimes just having company makes the day seem brighter. So I just want to thank everybody who takes the time to proverbially come "mudding" with me. You are friends that stick closer than brothers. May God Bless You All Richly!!!

Flinging Mud

Mark Twain said, "When angry, count to four. When very angry, swear." I was just sitting here thinking about those first 48 hours after Evangeline was diagnosed with SB. By Twain's definition I must have been very,very angry (with a little nutty thrown in for good measure). For those two days I plotted insanity that, thankfully, I never went full-on loony enough to actually do. But looking back on it now it makes me laugh (and cringe) to think that I could be so...self-focused...even for a little while. Remembering those two days reminds me of how easy it is to loose focus of your own blessings.

The whole drive home from Baptist Hospital in Downtown Jacksonville, after we received the diagnosis, I sat quietly in the car staring out the window. As I watched the streets go past me, I pictured those same streets at night and all the, ahem, "ladies of the evening" who would emerge to take up their corners and ply their trade after dark. The thought hit me like a hot punch to my already rattled brain- I saw a vision of the future of those streets: Those women who prowl downtown would have unprotected sex, become pregnant, use drugs, and yet somehow give birth to perfectly healthy babies they would then unceremoniously deposit into the nearest dumpster. These dark thoughts of mine were aided by the fact that for many years I have worked with troubled youth, some of them the offspring of prostitutes who didn't want them. Perfect little kids that grew into teenagers full of life and personality- just thrown out! And in my half-functional, yet deeply emotional brain, I decided right then that those women, too stupid to know the gift they had been given, should be educated. Yes. Educated with mud balls.

The stinkiest mud in all creation can be found at low tide on the banks of the St. Johns River. The whole ride home I plotted my muddy mayhem. I would get two large 5 gallon buckets and fill them with the most putrid mud I could find. Then I would come back under the cover of night and fling mud at these women, knowing that the stink of decaying sea life would smell to them like my "situation" and their actions smelled to me- rotten!

I didn't want my baby to have to struggle just to seem "normal". I didn't want her spending her whole life trying to "keep up/blend in with the herd of her peers.". It seems so crazy to me now, but for two days straight I alternated crying and plotting muddy revenge on hookers because they did everything "wrong" and here I had taken my folic acid and done my best and MY baby would have to fight battles theirs never would.

Thankfully, on the third day, the fog-of-stupid that had settled over my usually logical brain lifted. I began to get a grasp of the fact that crack hores were not my problem. My problem was wanting something for Evangeline: coveting what I perceived others had and desiring to punish them because they had it and she could not. Those thoughts were juvenile. They lacked insight and compassion. They were base. And more, they were baseless. Every child in this world has struggles. Evangeline will be no exception. True she may never blend into a large crowd. But why should I want that for her? Why should I want to settle for ordinary when she was designed to be extra-ordinary? This was my big epiphany on the third day after diagnosis. Well, that and realizing that what Evangeline would have, what I could give her- love and support in abundance- was something those other children lacked, the absence of which, would create a pain that she would never have to know. This whole world is full of rotten problems-stinker even that mud from the St. Johns. None of us get to pick our problems, but we ALL get to pick how we will respond to them. I can teach her that too.

So, as I sit here 7 weeks later (and hopefully wiser) thinking on the life and future my daughter will have, I no longer see a tragedy. Or even a drama. The story of her life will defy any genre classification but will be beautiful- just like her!

Since my last update, I have already received many blessings and bits of good news. We got her amnio results back showing NO chromosomal problems- THANK GOD!!!! We have an MRI scheduled and an apt set up with her surgeon, Dr. James, for later in June which will give us better understanding of what she will need. I am finally being referred to the OB who will perform my c-section so that's another bit of good news. Things are falling into place for my precious one. We go for another apt to the MFM specialist (that's maternal and fetal medicine) on Friday and I am hoping for a 3-D image of her face if she'll cooperate.

So things are good. I am blessed with a beautiful daughter I have fallen in love with. I have a wonderful hubby and awesome family who supports us both (thanks guys!). These are things I must focus on. Does this mean that at times in my journey, my vision will not slip off of my blessings and onto things I WISH were my blessings? Well, it probably will- such is the price of humanity. But hopefully, once again, I will be able to redirect myself before the mud goes flying and I make my world (and the world of others) stinker than it already is.

"See that no one repays another with evil for evil, but always seek after that which is good for one another and for all people. Rejoice always; pray without ceasing; In everything give thanks; for this is God's will for you in Christ Jesus" I Thess. 5:15-18

What we know so far...

Everything seemed very normal in the beginning. I got morning, evening and even night sickness my first trimester but that was all to be expected. My first hint that something was wrong came at my 16 week "quad screen" which tests for various birth defects. I had heard that these things are notorious for scaring women with false positives so when I got a call the next week saying that I had an abnormal result I didn't much care. "How abnormal exactly?" I wanted to know. I wasn't prepared though for the numbers I received. My heart did flip-flop a bit when it came back a 1 in 10 chance for a neural tube defect such as spina bifida. But still, I calmed down after thinking a bit. I'm a stats nerd. 1:10 means only a 10% chance that something is wrong. Simple subtraction tells me that makes a 90% chance that everything is fine. I'd bet on those odds. And I did. I was hardly worried at all when they set me up with the maternal and fetal medicine specialist for a lvl 2 ultrasound that same week. My only thought was "Cool! I get to see my baby again and find out the sex sooner!"

My husband and mom came with me. The ultrasound lasted about 45 minutes. They took so many pictures! I watched her kick her feet and wave her hand and wiggle all around, moving so fast the tech had to be quick to keep up with her. She even finally dropped her modesty and showed us that she was a girl. Everybody in the room was grinning. When we were done, the tech called the doctor in, but instead of seeing only what I saw (a pretty little baby girl), he saw what I couldn't: a problem. The doctor showed us a pretty clear shot of the top of her head. "This." he pointed "This is not what we want to see." He pointed again and we stared, straining to follow along. He went on to explain that she had "the lemon sign" and "the bananna sign". I was waiting for him to hit me with some corny punch line, but no fruit salad jokes were ever uttered. Instead he calmly explained something called the Arnold Chiari II malformation and why it was an indicator of spina bifida. Basically the brain and spinal cord are a set of water pipes. If there is a leak in the pipe, the pressure changes and all the water (or in this case cerebro-spinal fluid) seeps down toward the leak. In the developing fetus, this change in pressure and the resulting "drain" down the back are enough to pull the brain backwards. This means the frontal cortex retreats and pulls in at the sides...like a lemon. While the cerebellum (which should be butterfly shaped) gets pulled backwards toward the neck and squishes out to look like a banana. By itsself this malformation changes the shape of the brain but not its function. In other words, parts might be shaped differently, but they still work exactly the same. The problem comes in if part of the hindbrain herniates down the neck INTO the spinal canal and causes a blockage. Then when you only had a leak before...now you have a leak in the bottom and a clog at the top. This results in hydrocephalus (or excess fluid on the brain). It is this fluid that can cause injury to the developing brain and why (as I mentioned before) 80% of kids with spina bifida need a shunt...most shortly after birth.

On that first lvl2 ultrasound at 17 weeks, the doctor thought he saw the spinal opening on her sacral spine...but couldn't be sure b/c she was still so small. So we had to wait three weeks and come back. These three weeks were hard, but not for why you'd think. I was totally believing that when we went back, we wouldn't see the same lemons and bananas and that the whatever-it-was on her lower spine would be gone too. So mostly I was stressing to hear "good news". I was expecting it.

It didn't happen exactly that way, though. The doctor still saw the Chiari II at 20 weeks. Her head was measuring small because of the change in its shape...but there were no signs of hydro. "Not yet" said the doctor. Then he repeated "yet". It is a severe case of chiari for an opening so low on her spine. Speaking of locations...we could now see that the lesion, originally thought to be sacral, is actually lumbo-sacral going up higher than precviously though and extending all the way to the tailbone. At least thats what it looks like right now. That information is nothing I'm holding fast to. These things seem to change. The other good news (besides the continued absense of hydro) was her feet and legs. She can move them like a dancer. We even watched her flex her ankles and tap her feet. The doctor was encouraged by this. "It may change, though". He warned me. "Leg function usually decreases with the growth of the baby and the exposure to the amniotic fluid." This was not a shock, I had read that already on google. The doctor also said that any surgeon would want an amnio done (where they draw out fluid to test for chromosomal abnormalities). Bj and I requested a moment alone to discuss the matter. We both teared up...frightened by the idea that the amnio could cause a miscarriage. But in th end, we decided the risk was small enough and the benefits would be better treatment for Evangeline.

We go back again May 27th to have another lvl 2 ultrasound and we should get the amnio results back next week. Right now we are back in "waiting mode". We are waiting for our third ultrasound. Waiting for her future surgeon to contact us later this week to meet with him for a consult. Waiting for my OBGYN to refer me to another OB who will deliver Evangeline by c-section at Baptist downtown where she will be taken to Wolfson's children's hospital. I hope to meet the new OB soon and get to know him before "the big day". I don't think I'll see him that much. Mostly its Evangeline's doctors I'm getting to know real well. (They really are great!!)

I will keep everybody updated as we find out new details. :) "Good news" here we come!!!!