Saturday, May 28, 2011

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 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!!!

Monday, May 23, 2011

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

Tuesday, May 3, 2011

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 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 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!!!!

In the beginning....

This blog is written about our daughter, Evangeline Grace. I knew early on that if I was expecting a little girl, her name would be Evangeline. I chose that name because "Evangeline" means "good news" and our little baby was a complete surprise...but a good one! The initial happy news of her arrival however, has been meet with less pleasant tidings as my pregnancy continued. At 17 weeks-the same wonderful day the doctor told me I was expecting a daughter- I found out she had spina bifida. I write this blog for each and every family who finds themselves in my position. Also, I hope it serves as information for others who might be curious about spina bifida and the lives it effects.

For any reading this who have just found out their baby has been diagnosed with a neural tube defect, I will share what I have learned while walking in your shoes.

It is your physician's job to prepare your family for the hardships in the future, but only YOU can prepare your family for the best. Your doctor may not give you hope, but that does not mean that hope does not exist. The baby growing inside you is still yours and if she has your love, you will be AMAZED by what she can do. When a child has love, he has the biggest need in his life fully met. When he is surrounded by people who look for the positive and who smile when he smiles, that child owns the world. He is greater than a king. The "quality of life" issues that you hear so much about on many forums have less to do with the "defect" in the child and more to do with how his parents VIEW his "defects". If you love your baby, if you are unafraid to love him/her, then you will find a miracle. Mother Teresa said "I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love." Well, I love until I hurt at the thought of Evangeline's struggles, but I know in my heart I will rejoice all the more with her when she overcomes and find success. Her spina bifida will not make her slobbery baby kisses any less sweet or her cubby cheeks less soft and caressable. It will make her every victory more of a celebration. What follows are the first stumbling steps on my journey to those little miracles. I do not know exactly what the future holds, but I know what I am bringing with me as I travel down the path to meet it....I bring hope for the best, faith in God and love for my daughter. I'd say that makes me as equipped as I know how to be.