Instincts?

They say "maternal instincts" kick in when a baby is born. Now personally, I'm inclined to believe that's a load of horse manure. Unless of course, the only maternal "instinct" is to ask a boatload of questions about subjects with no clear answers. Love for her? Got that in immeasurable quantities. Cuddles? For as long as there are hours in the day. Clues? Not so many. Maybe my instincts would have come in with my milk and I got gypped twice. Either way, the longer I do this mom thing the more I wonder what's actually going on around my house.

For example: Is she allergic to her formula because she sneezes when she eats and seems so gassy afterwards?  Should her poop actually be the consistency of glue? How much head growth is an acceptable daily gain and how much should I panic over? Is there a way to pack a diaper bag so that I'm not, in fact, packing full-on luggage containing everything in her nursery?  If she's fussy and stops when I pick her up, does that mean all she wanted was to be held, or is there still something else wrong and I'm just not psychic enough to figure it out? At what point does fussiness become a sign of hydrocephalus and when is it just gas?

Gee, a lot of my questions lately revolve around gas and poop. And hydrocephalus. Can't forget that one. I wish I wasn't so easily frightened, shaken to the core, about possibly missing the signs for something I don't want her to have in the first place. It doesn't help that I keep hearing Dr. Aldona explaining that once the swelling in her back goes down, we'll need to be extra vigilant about the hydro as it may show its self then.

Well, the swelling has gone down. Beautifully in fact... and I'm too spastic to let myself celebrate the way I should. This morning I nearly had a stroke when I did her head measurement and it came out a full cm larger than the day before. That kind of growth should take a week, not a night.  I measured twice. I measured three times. I called her dad in to measure. He was, after all,  the one who measured the day before.  Sure enough, when he measured the size was up but only by a few points of a centimeter.  Wow. what a relief! But still, I made him measure again. Then show me how he measured. We'd both received the same instructions for measuring, yet got different results.  It was maddening really, to realize that so subjective a thing was my only tool to ascertain a potentially huge threat to the most precious treasure I've ever been entrusted with. After my heart stopped sinking into my stomach, I handed the whole situation over to God yet again. Why do I do that? Give something to God and then take it back without even realizing it until I find myself in some sort of panic? If God has something in His hand, I don't need to worry about it.  That goes along with "casting your cares on Him for He cares for you." (1 Peter 5:7) If he's carrying the weight of my worry, and the trust of my heart to care for the thing I hold most dear, then why (WHY!) do I let myself get sick with concern over a potential occurence that I can't actually change? Is this also some kind of maternal instinct? To worry and wish with all your being that you could control something that you have no way to influence? If so, maybe I do have instincts after all.

More likely though, I think that is human instinct rather than mom instinct. Learning to trust your Maker is not as easy as it probably should be. For me (and I think most people) its day-by-day. Its not something you can do once and then go, "Yay! It's done. Lemme check that one off the old to-do list." Like a relationship, it takes time to build. You have to give Him your fears, experience them again the next day, and then hand them back over again. And again. And again. The only upshot is I don't think God holds any of this against me. Courage isn't the absence of fear, its the ability to act in spite of it. Faith is a little like courage. If you saw your answer clearly, if you were unafraid of the outcome, it would be easy to trust and have faith. Its when you can't see; its when you have the most to lose- that faith becomes faith at all. And so it is with trembling hands each day that I take up that tape measure. And it is with a trembling heart that I hand her, each time, over to God.

11 The angel of the LORD came and sat down under the oak in Ophrah that belonged to Joash the Abiezrite, where his son Gideon was threshing wheat in a winepress to keep it from the Midianites. 12 When the angel of the LORD appeared to Gideon, he said, “The LORD is with you, mighty warrior.” 13 “Pardon me, my lord,” Gideon replied, “but if the LORD is with us, why has all this happened to us? Where are all his wonders that our ancestors told us about when they said, ‘Did not the LORD bring us up out of Egypt?’ But now the LORD has abandoned us and given us into the hand of Midian.”
14 The LORD turned to him and said, “Go in the strength you have and save Israel out of Midian’s hand. Am I not sending you?” 15 “Pardon me, my lord,” Gideon replied, “but how can I save Israel? My clan is the weakest in Manasseh, and I am the least in my family.” 16 The LORD answered, “I will be with you, and you will strike down all the Midianites, leaving none alive.” Judges 7

HOME!!!

After 15 days of knowing only the hospital, baby girl will sleep in her very own cradle tonight!  Wow.  How awesome is that???  She must still tummy sleep because of the swelling in her back (which is looking better again today). God knew this ahead of time and had somebody gift us this little monitor system that goes under the baby's mattress. It can detect movement and respiration so even if she must sleep on her tummy, mommy and daddy don't have to worry about SIDS.  Plus, she's been doing super with her respiration while being monitored here at the hospital so I am not too concerned about that.

Doctor Aldona (I really love that guy!) explained to me how to check her head measurements and other signs to look for in regards to watching out for hydrocephalus. I am a fantastic worrier and only slightly less fantastic at being paranoid, so staying on top of this should be a piece of cake. In fact, if I do a good job of it, I may add "compulsively attentive to teensy little details" to the "skills" section of my resume.  :)

I was also informed that her "functional" level is L5 meaning that all her nerves up to and including that vertebra appear to function. Her sacral nerves not so much. For walking, this means she can flex her ankles up but not down as well and its that downward motion on the ball of your foot that pushes you up and forward. So she may need some ankle braces caled AFO's when the time comes. I hear they come in pink.  It also may mean trouble at potty training when that time comes too as nobody knows but her if she will be able to control the necessary muscles to go on "command". There is plenty of time to worry about all that later. (And plenty of time for the Almighty to work on mending those sacral nerves!) The random thought I keep having though is that I see bike-riding in her future. We were all read up and educated about those cool special made (and crazy expensive) hand-pedal trikes if we needed to get one, but its nice to know we can go the cheap route and get her a cute one from Wally World when the time comes for that. Is mommy a penny pincher or what??

I have spent the last two days getting her all set up with her follow up care. Since she qualifies for an early intervention program called early steps, her physical therapists will be able to come to our house to do her therapy. Which will save boku time for me as a working mom not to mention gas money! She goes for her evaluation with them the end of October. For now, there are some exercises I can do with her at home. She has one foot that due to her position in the womb, likes to turn inward and one toe that isn't in line with the others. I was taught what to do to help those go back where they should. I have selected her pediatrician and have my first appointment with him. I have a WIC appointment. Follow ups with neurosurgery, urology and orthopedics. In two months we attend our first spina bifida clinic which is like a one stop doctor shop. WOW. We are gonna be busy girls going to all these places. I still am in awe by how blessed I am to have the medicaid that gets her all this wonderful care that I could never otherwise afford. God is so good!

Encamped

There are women who spend months on end with their babies in NICU and progressive care wards. I admire them. In just two weeks, I've slipped a cog. Seriously. I'd like to introduce you to Charlie. He's helping me on my quest.

Charlie works for the hospital, you see, but he's on my side. And please, don't mention how strongly he resembles Charlie Chaplin. It only embarrasses him.  At any rate, its been a tough week for both Charlie and myself. When my hubby came by last night to take me off property for a bit, I was very hesitant to leave. He had tried unsuccessfully for the last three nights to take me out to dinner somewhere other than the hospital cafeteria. Last night he was more determined than ever to help me escape. But how can you escape from a place you choose to be? I think sometimes as a woman its hard to explain an emotion to a man- an emotion that goes waaaaay beyond logic and reason but is so strong it's more true than either of those other concepts- as tangible as matter itself. And last night every fiber of my most primitive being screamed- CAN NOT GO.  No logic. No reason. Just clear, simple, brute force of will spurred on by a set of emotions that will forever defy a name.  Finally, I decided to explain it to him like this:
Him: It will do you good, princess. You have been cooped up here too long.
Me: I can't. I'm encamped.
Him: Encamped?
Me: Yeah, you know. You play video games. You watch war movies. I'm encamped. I'm laying siege to their fortress. You don't just up an leave an encampment, do you?
Him: *thoughtful for a moment* It's just that you know, I heard a rumor that there are still such things as trees and fresh air outside.
Me: That's not what my spies tell me.
Him: You have spies?
Me: Sure. You don't think I'm encamped by myself do you? Can't lay a proper siege without troops. I have an army. Very loyal. They obey without question.
Him: *Looking around at my invisible troops.* I would imagine. You likely execute dissenters.
Me: Yup. It maintains order.
Him: Well, how bout you just place some troops on guard or something while you and I go make a supply run?
Me: Well, actually I've already got snipers strategically positioned on the look out for invading shunts, but the snipers are an unusual sort. Require constant supervision.
Him: Yet you give them guns?
Me: Of course, they're the best shunt-killers around. Besides their weapons only kill medical equipment. Specially designed.
Him: *sigh*

Now before you worry too much, my spouse is at least as stubborn as I am crazy and he did manage to talk me into a short excursion. And it did help.  Its a been a real roller-coaster ride these past few days and leaving did give me some perspective on the situation and I think I'm a better general for it. As a matter of fact, we may be winning the siege. The opposing generals, er, I mean, hospital staff tell me that I may be going home in the next day or two- WITH my faithful lieutenant Evangeline in tow. We never, ever, leave an officer behind!  Also, we have officially won the battle of the cathing. She has proven to them she can go pee-pee on her own and so the catheter is no longer needed!

At the moment, the fluid build-up in her back is stable. They tell me that its a small leak from her spinal cord sack where it was stitched back together during the repair. Since the fluid buildup is not growing, they feel that it will heal on its own and the leak will stop given time. Of course, then the issue becomes, if the excess isn't draining off through the small leak in her back, will the body begin to absorb it as it should, or will it back up and begin to collect in the brain necessitating a shunt? At the moment, that answer is unclear. I have alerted the shunt-snipers to be ready.

All kidding aside, I am glad that I'm not fighting this battle alone. I take orders from a great General and I believe with all my heart that He has a plan and a strategy that He would have us follow. It may not be what I envision, but until He tells me otherwise, I will believe for the best outcome I can dream of. There is an old hymn called "Faith is the Victory" that goes like this:

Encamped along the hills of light,

Ye Christian soldiers, rise.
And press the battle ere the night
Shall veil the glowing skies.
Against the foe in vales below
Let all our strength be hurled.
Faith is the victory, we know,
That overcomes the world.

So that's the update folks. More "wait and see" Bottom line: I know not where we march from here, but I know that Victory will be ever in our sights!

A strange planet...

You know that scene in Toy Story where Buzz arrives in Andy's room and can't figure out what's happened to him? I kinda feel like that.

Last night I finally spent my first night with my new family- all three of us together! It was wonderful in ways that words could never capture. At the same time it was...otherworldly in many ways. For one, I'm a new mom and I am baffled by the sheer amount of time she sleeps, and the frequency with which she eats and poops. I'd heard the rumors. I know now they are all true. ;)

But that isn't why I find this so surreal. What I struggle with is how I'm doing things, where I'm doing them, and maybe even sometimes why I'm doing them. That pretty much covers the full gamut that confusion can run. So on one hand I'm happy, confident. On another I'm just spacey, going through the motions with a genuine smile, pleased to have the opportunity to be with my family, but still lost in the fog of incomprehension. I feel a little guilty about that...like I should somehow just be able to see this all logically without my emotions (anger, frustration, sadness, etc.) interfering. After all, I knew this whole hospital stay was coming, didn't I?  But like a child, there are moments I want God to fix it now. I want the stress to be over.

Yesterday when we moved from NICU to 2 West, I was hoping that things would somehow feel more normal, but somehow I only just managed to realize how not normal they really are at the moment. As I was walking from NICU to her new room (with bed and pull out chair to accommodate both mommy and daddy) I couldn't think of how pleasant it was that they had Lego boards and other toys stuck to the wall in the corridor. All I could think is "I just really don't want to be here." I guess sometimes it doesn't matter how nice something is..or how dismal. You will feel what you feel anyway.

Of course, I do find it amusing that our ward is located in the old part of the hospital, tucked away behind a security door. Outside our window is a construction lot for the new children's hospital they are building. It's full of rebar. Beyond that is the scenic vista of the parking garage. Yet somehow after settling in, none of that seems as gloomy as it did just yesterday. I adore the staff. They have been so helpful to me in getting settled in and feeling as normal as I can here in wonderland. Plus, I really do appreciate the fact that she has doctors monitoring her right now with all that's going on.

And God is here. I feel Him with me, despite it all. When I think about it, the Almighty must have a pretty good idea about what it's like to leave the familiar to come someplace where everything is foreign. I mean, Its what Jesus did for me. How many time did he look around and go, "This is soooooo messed up!" I guess that's why He can give me such good comfort now. As of this evening, the swelling in her back has decreased some and they are now cathing every 12 hours instead of every 8. They are getting very little urine out during the cathing and her diapers are wet. The VCUG showed no reflux. On Monday the attending pediatrician will be checking with urology to find out what's up. More waiting. But I can handle it. I named her "good news" for a reason. My little Evangeline is a miracle in process.

Romans 8:31-32 "What, then, shall we say in response to these things? If God is for us, who can be against us? ³ He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?"

Popular

My little girl had many medical visitors today. Above you can see her in her first full-face picture. They placed her in a special thing with a hole cut out to lay her on her back for a test they had to do for urology. We got a quick pic before they began. Couldn't pass up an opportunity to see more than half her face at once! :) Too bad you can't see her eyes better in the photo. They are this lovely deep grey-blue that is the color of the sea when the sun begins to set. I'm not sure what color they will become after they've had a chance to "settle in" to their true color, but I really hope its close to how they are now.

Well, she had her two ultrasounds before I got there. Nobody mentioned the renal (kidney) ultrasound which I take to mean all is well. Her bladder showed a bit largish and so they ordered an additional test which enabled me to take the face shot you see above. That test went well. We still have the "big" uro test tomorrow. Its called a VCUG and it tests lots of things like bladder pressure when the bladder is full, if there is reflux into the kidneys, etc.

Physical Therapy also stopped by before I arrived today. The therapist peeked in after I got there to give me the report. Basically, she said her leg strength is great! (same as orthopedist said) and that when she can lay on her back they can do more detailed evaluations and make suggestions for ways for us to work with her in any needed way. Right now, she is recommending the baby get some "side time" in her bassinet. The neuro agrees with this. Laying on her belly so much is keeping her from flailing her arms the way newborns do and its making her arms stiff.

Occupational Therapy dropped in on us just before her 2 o clock feeding. O/T unlike P/T deals with coordination and neurological milestones etc. The O/T said our baby was "organized" and "skilled". Not entirely sure how a newborn can be organized but from what I gather it means she can coordinate herself with the task of rooting around for food when she's hungry. She can wake and be alert at appropriate times. She can self-soothe when she starts to get upset. (She has this thing for stuffing the fingers of her right hand into her mouth. She sleeps with it close to her face for just such a purpose. In fact, even as I'm trying to give her the bottle, she's often stuffing those tiny digits in her mouth making for a comical moment when both bottle nipple and fingers are getting sucked on till mommy pulls her hand away.) The O/T said she had no real concerns except her arms (echoing the P/T). Those stiffness issues should resolve soon though once she can lay on her back and move them freely around. She, like the P/T will continue to follow up and do more evals once the baby is more recovered from surgery.

Neuro stopped by as well (also before my arrival. sigh.) and did an eval and took off her surgical dressing so now we begin wound care on the incision site. They are pleased with how it looks for 7 days in. Below I will post pics of what her boo-boo looked like before surgery and today.

Pre-op and

7 days post-op...looking pretty good. The white stuff on the right side is a cream that we later wiped off.
She has some swelling and only a light discoloration from bruising. Once we could see her belly today, we noticed she has a bruise in a straight line at the base of her belly which must also have come from surgery. Perhaps the way they positioned her?

Despite all the good news, I was not feeling so good today. I had a GREAT day physically yesterday and today I was just sick. When I stood up at one point I got really dizzy again like I was doing my second day in the hospital after my c-section. Evangeline's nurse was there to see me go all white and pasty and she made me sit down and took my pulse. She said I wasn't leaving NICU except in a wheel chair- she didn't want me falling out. I also was not able to stand to do things with the baby like change her diaper etc. My mom or the nurse would hand her to me while I was sitting so we could cuddle and feed etc but I didn't want to risk passing out while I was standing with her. I have been resting this afternoon and drinking fluids and all that other jazz. If I don't feel better tomorrow, I'll phone my OB and see if they want to see me since I'll be in the building anyway. 

Well, more news to come soon, I'm sure! All this information can be overwhelming, but my God is big and knowing that He will be with me makes my fears seem small in comparison to his humongous-ness. God is faithful and capable of handling them all!

Isaiah 51:12-13 “I, even I, am he who comforts you. Who are you that you fear mere mortals, human beings who are but grass,  that you forget the LORD your Maker, who stretches out the heavens and who lays the foundations of the earth, that you live in constant terror every day because of the wrath of the oppressor, who is bent on destruction? For where is the wrath of the oppressor?

Patience

NICU side B is great. I am able to interact with her much more fully and without so many wires connecting her to the omni bed. Also, I can dress her, which odd as it sounds, is a very big deal and a very happy thing for me. And its a good thing I'm liking side B cause according to the neuro dept. we will be in the hospital a total of  2-3 weeks! When I heard this my heart sank but the doctor explained it to me this way.  When I had my c- section surgery and they stitched the skin together all they did was put it back the way it was before. In Evangeline's case they are arranging the skin and tissue together in a new way. This means extra time to heal. It takes a full 6 weeks before the outer layer of the surgery is fully "together". Much longer than that for the deeper layers. Our Neuro team has a standard practice where they don't let a child go home before the greatest danger of the incision opening up has passed. Soooo, great news on one hand! She will be where she can get the best care at a time she needs it most. But still sad for my heart which selfishly wants her to be with me.  I just choose to focus on the positive side that she gets top notch care and find ways to make her room a bit more homey. I love that they leave drawers empty for parents to store things in like a boppy pillow, socks, hats and blankets etc.

Medically, she is still doing super! She's eating well, head measuring well, etc.  Thursday she's scheduled for some ultrasounds just to peek at how her ventricles and kidneys are doing. Her legs are getting more coordinated all the time. She has great muscle tone and really does seem to be able to feel her feet and toes which is a total hallelujah. She is strong and growing stronger. Even her left leg seems to be more responsive than before.

I'm doing well too. Recovering really makes you tired though. And my milk just isn't doing what it should. I worked with the lactation consultant in NICU today. She was fabulous and gave me some ideas (many of which I already received from some of you! so that made me feel smart!) Basically though, she said my production was only about half of what it should be. Now is the time to get serious I suppose. Fanatical even if that's the route I choose. She recommended I contact my doctor to get a prescription to increase my milk supply. That seems a bit extreme to me. Honestly, so does upping my pumping from every three hours to every two. I like sleep. I admit that freely. So, I guess I need to decide if I mind pumping some and supplementing the rest with formula or if I want to go all out and go for "the gold" so to speak. I know the decision is fully mine but I want to talk to BJ about it. We both agreed that breast milk was best and if I'm going to go all nutty and set the clock for every two hours that will affect him too. Its the fruit of his loins I'm trying to feed and I want him to have a say. They might be my boobies but I want to decide together what direction we feel good about taking for her sustenance. He isn't feeling well tonight but I hope to chat with him tomorrow so we can decide. For now,I will keep doing what I'm doing and maintain the status quot.  Well, that and pray. Praying never hurt. ;)

Ready, Set, GO!!!

Well tomorrow we go back for the c-section- for SURE this time!  Honestly, I feel much better today looking at tomorrow than I did last Sunday looking towards last Monday. I think maybe Evangeline wasn't the only one who needed an extra week to prepare.  Last week, I wasn't ready to let her go yet. Strange as it sounds, she is my little belly buddy and I have grown rather used to thinking of her in those terms. I speak to my navel all the time, addressing various points of conversation to her. Last week, I could just picture myself laying in the hospital bed with a deflated belly, while my little buddy would be far away down the hall. No more belly talks. No more bumpy baby whose kicks and wiggles I can interpret in various random ways. "Oh? You'd like me to recline a bit?  We can do that!"  or "You didn't care for those olives? No?  Well, I'll just skip them next time."  Not to mention, the thought of somebody cutting the cord made me weepy. Last week some very deeply disturbed and delusional part of my brain was sort of rejecting the idea that she should leave the safety of her nest and enter the big wide world of doctors and light and air. Didn't people understand that I was the only one who could keep her safe?  9 months of preparing to meet somebody and last week all I wanted to do was hold on to what I had with her rather than be excited about where we would go, you know, once I could actually see her and touch her.

I guess the accident brought reality to me pretty clearly. Even my belly is not a perfect safe haven. But God watched out for her in the crash. He will watch out for her in the incubator too.  He will go with her to surgery and every exam. She won't be alone and neither will I. And once I let go of my bizarre idea that I should keep her longer to somehow keep her safe, it opened up the possibility for me to actually enjoy the idea of the birthing experience rather than dread it.  I think tomorrow will be a great day. I am much more relaxed and ready to "meet" her....and for the first time, I will be able to look her in the eyes when we chat. That will be a nice upgrade.

Why people shouldn't drink and drive....

My family loves me. They do a lot to look out for me and make my life easier especially in these last couple of months of pregnancy. I haven't driven myself anywhere in well over a month.  But owing to the change of c-section plans, I've been feeling down and so decided that I would use the "extra" week I'd been given for good things...like seeing friends again and visiting my favorite Japanese restaurant.  Since my hubby was going to be busy, I decided to drive myself.

I had a wonderful relaxing evening just chatting with some ladies I love about any old topic that came up. We laughed and honestly my spirits were lifted as I drove back home. It wasn't late or anything. It was about 9pm. But somebody out there had gotten an early start with her drinking. The officer later told my spouse that they saw pills in her vehicle as well and she may have been mixing her medicines with her alcohol.  Anyway, as I was driving down HWY 17, I came to the intersection at Yellow Bluff Rd. I saw a small SUV go right past the stop sign and cut across two lanes of traffic. She seemed to be headed for a crash into the trees and uncertain and surprised by what I was seeing right in front of me, I began to slow down. I dunno what happened at that point, but like a fish, she must have been attracted to the shine of my headlights because she turned and hit me head on. I was absolutely shaken. I remember wondering if there was something I missed seeing that would explain why she had done this. Even as my thoughts were racing and my hands were shaking, the woman backed up like she intended to continue with her drive. Not comprehending that she would have to go around my truck to get anywhere, she pulled forward again and hit me a second time, though this time was not very jarring. At this point, when her attempts at hitting the gas wouldn't make my truck go anywhere, she seemed to just give up. She broke out a cigarette and lit up, right there in the middle of the road. By this point I was, ehem, mildly hysterical. I wasn't sure what to do. I knew better than to leave the vehicle in case she decided to try driving again and I wasn't sure that moving my car out of the road would benefit the situation or not so I finally settled on calling 911. To hear that call replayed would probably be comical now. I knew I was on HWY 17 but at the time didn't know the name of the intersection to tell them where I was. I also wasn't explaining what happened very well. I just kept saying things like "this shouldn't have happened" and "her car is right in front of me!"  I think I may have mentioned that there was a traffic accident. At any rate, there were people on the scene to help. An out-of-town couple had been following her at a distance for several miles, watching her disregard lanes, flashing their lights and trying to get her to pull over. What they didn't know was that she was far too out of it to understand flashing lights as a signal. I mean, she couldn't even understand that my big red truck was an obstacle to be avoided.  There was also another vehicle with a man and a teenaged boy. The boy ran over and checked the intersection sign and the man took my cell phone told emergency dispatch what happened. The couple stayed with me, helping me to be calm and reminding me to turn on my emergency lights.  Since we were blocking the lane, cars were speeding around us but these brave people stayed right with me until the police and paramedics arrived.

By the time police arrived and they ascertained that 1) I was 38 weeks pregnant 2) The speed of the collision was in question 3) My ability to assess potential damage to myself was compromised and 4) My baby was precious cargo that should be evaluated, so they recommended that I go to the trauma unit at Shands to be evaluated. I asked them if I could wait on my husband. There was something so frightening about that big red vehicle with the flashing lights that they wanted me to climb inside. As a high risk pregnancy there is a love-hate-fear response to any new medical thing involving your baby. You have been through so many things, new tests that you have to ask questions about, new results that you aren't sure you want the answer to...and in my state, all I could think is "What sort of tests?" and "Will the tests hurt the baby?"  and then like a sword cuts through bone, I thought, "IS the baby Ok?" I didn't have any answers so I figured I'd better just go like they said. As I was speaking to them, my husband called and I told him what was happening and waddled slowly to the ambulance.  My belly was cramping like PMS, and I did have one contraction clinch up my side, but over all I was more dazed than anything.  They hooked me up to monitors and found that my heart was adding in a little something extra while it was beating. The man asked me if I'd had caffeine. I confessed to tea at dinner. He said that and the stress could be the cause.  Fortunately, on the way, the little extras dwindled down as I calmed down. The paramedic who rode with me was very comforting- I think he was a believer and he talked about how my baby was a gift from God and how all they wanted to do was make sure the wrapping and all was safe.

When I arrived, they did some tests, but none of them were strange or new or scary. I saw the familiar non-stress-test machine come out. Baby was quiet for a while after the accident but by the time I arrived at the hospital  she was visibly moving beneath my hospital gown.  This was a super great sign! A doctor from OB came down to do a sonogram and check the baby's heart. She also checked me for dilation/effacement. They continued to observe fetal movement and made sure that I was Ok too with some tests on me (but nothing scary!).  It was oddly quiet for a trauma unit. I was the only one there at the moment and things moved along quickly.  It was determined that from a trauma standpoint baby and I were clear. Labor may result in a situation like this, but it would be treated as labor brought on by anything else and I was told to contact my OB to let them know. I am only a little dilated and effaced so I am hoping that if I just chill, she can wait till Wed. when everybody is scheduled to be there to welcome and care for her.

My hubby and mom both arrived after I had been there not too long and just seeing their faces lifted my spirits. I did not know it at the time, but even as I was in the back of the ambulance people had begun to pray. Even as I was praying for Evangeline to move and be OK, people from the SB group on facebook had been alerted to pray. People at my mom and dad in law's church gathered to pray as well. I know that ambulance was surrounded by angels. As frightened as I was, I was being watched over by the Lord in ways I wouldn't understand till later.

A huge saving grace was the fact that the airbag did not deploy!!  That could have resulted in a trauma that would have required an emergency c-section. (At a hospital where her doctor's weren't!) Also, the fact that my vehicle was larger than hers and was very sturdy helped. When we first found out we were pregnant we considered selling the Tundra for a less expensive "family" car.  Now, I'm so glad we kept it.  It made all the difference in the collision... and hubby said Big Red is now  officially a member of the family and we will keep him till at least 500,000 miles!! So many things worked together that I can only say I lived a miracle last night. Head on collisions don't normally end so well for all the people involved.

So as I lay here today, I am extremely thankful.  And extra hopeful too.  Because now I remember that miracles do exist. And a world that has miracles is a much more hopeful and cheerful place than one where we must muddle by on our own. Events like last night really have  away of bringing that fact home.

The lady who hit me could have gone on to kill herself or somebody else. But she didn't. The precious cargo I carried safely all these months could have been broken, but she wasn't. I give God the glory for all of that!  And I hope that lady remembers next time she's having a bad day that alcohol isn't her only option to feel better. She had a miracle last night too and maybe next time instead of reaching for the bottle, she'll reach out to friends, or say a prayer to the God who spared her life.

Again, thank you to all who prayed. May you each be blessed today!

Valuable

With only 4 days to go till I meet my daughter, I suppose it's natural that I have been thinking back on my pregnancy experience. If my pregnancy had a theme song, it would have to be "Roller Coaster of Love" by the Red Hot Chili Peppers. lol.  It was hard at some points, easy in others, and after all is said and done, it was all for her. So, in all my retrospection, I wrote her a letter: something I plan to share with her when she starts nudging near those awkward teenage years...just a little something explaining  what she means to me, what her value really is.

Evangeline:

I am sure baby that you know by now, that daddy and I have taught you, that the best things in life are never free. Things that are easy to come by... are well, cheap at best.  And now that you are older, I want you to understand something about babies. I think any pregnant lady pays a price for the baby in her belly. That's what makes the baby so valuable. When I was pregnant with you, after they told me about your boo-boo (yes, I still call it that!), I would sit and talk with you, rubbing my belly, feeling waves of sorrow and fear for you because there was so much I still did not understand then. But those moments made me realize exactly what you are worth to me!  I paid for you with buckets of tears. I paid in piles of worry. And yes, on ultrasound days, I even paid in smiles, smiles so big they hurt my cheeks! But I want you to understand something very, very important. When I think of what I paid for you, I feel a little guilty. I feel sneaky like I've somehow gotten away with something. I feel like this because well...you are a bargain, my love. I would have paid so very much more! I loved you in my belly. I will love you when I meet you. As you grow, I'll love you when you're naughty. I'll love you when you make the right choices. I will love you to the height and breadth of forever because I know the truth about you. I know who you are. I know your worth. You have great value. To me, to daddy, to Jesus. I hope with all my heart you always know that about yourself. That your value has nothing to do with what you have done in this world, no matter how big or small you may sometimes feel. Your value eclipses such petty things and is rooted in the very nature of who you are. You are my daughter. You are God's child. You are daddy's baby girl. You were created with a purpose and you are greatly loved. In your successes and in your failures, in your triumph and your heartache, you must remember this above all things. You must know your own value. Never give the pearls of your heart to pigs who won't know their worth. Never sell yourself short by sharing your kisses or your body with a boy who doesn't understand the honor you offer him. You are no cheap glass bauble!! You are a diamond. You cannot be tarnished, chipped or broken; your value never diminishes. You are Evangeline Grace Kugler. This you must always remember.

Love,

Mom


"What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? " Romans 8:31-32

Boo-Hoo

This post doesn't have anything to do with spina bifida. It mostly has to do with being pregnant. I have a lot to get done this week both at work and at home before the "big day" next Monday and my strange new mood issue isn't helping me a bit. I've been pretty lucky with this pregnancy. I've had the so called "placenta brain" where I forget random things, but I haven't had the mood swings that a lot of other ladies have to deal with. I've mostly been myself. For the past few days however, I've felt very much NOT like myself. I've felt like a toddler in need of a nap. I've been cranky and whiny and it seems like I'm always perched on the verge of tears.

I'm sane enough to know there is no reason for this...no "real" tangable reason anyway. Yet, I'm letting any little thing get to me way beyond the measure it deserves. I can only assume this has something to do with hormone changes in late pregnancy- maybe some sort of preparation for lactation?  Who can say for sure? But I'm trying to just ignore it and press forward to complete my tasks. Soon, I tell myself, I'll be done with all this and won't have a thought in my head or any issue in front of me but my Evangeline!

But in the meantime, every little ache and pain (and there are a lot of them, lol) makes me want to go "waaaaaaaaa!" and just sit down and refuse to continue.  Especially when it seems like for every issue at work and home that I fix-another one pops up! Maybe if i did do something nutty like that- just give into impulse- people would make a wide path around me and I could just lay back like the queen of Sheba without a worry in the world. Nah! Most likely, they'd all just stare at me and I'd have done nothing but wasted precious energy on tears.


This too shall pass, I'm sure! For now, we march forward to claim the long-awaited prize- my beautiful baby!  I really can't wait to see what she looks like from her hair to her nose to her toes and everything in between.!

That thought is always good for a big old smile!

Long and Lean

Well, went back to the MFM specialist again today. Little girl is growing well. She weighs 5lbs 8oz. She's moved up in overall growth from being two weeks behind to only being one. This is largely because her legs have grown soooo much! Her legs are in the 84th percentile for length. Obviously she's gonna have to hunt for the long inseam pants just like her momma! 

It was much harder to see things on this ultrasound. The doctor said this is normal. By 36 weeks they are taking up so much room, there are shadows everywhere you look. We did see her lesion again. It didn't look as big and scary this time. I said to the ultrasound tech, "I know this might sound weird but can I have a picture of the lesion? Its my way of prepping for what I'll see delivery day." "Yep, that sounds weird alright!" she smiled, but gave me the pic. I guess to somebody who hasn't had to deal with this it would sound a bit macabre, but I make no apology. The pics she gave me were also  shadowy, but I can see its outline and it's not as scary as my fear-drenched memories of the moments I saw it last time. So there's that. We had a different doc this time. He said he *might* see some excess fluid in her third vent, but it was nothing major if it was there. So, the fact that her brain is still hydro free is smile-worthy.

Before the doc came in, I asked the tech to see if she could get a shot of Evangeline's feet. It took some doing because of how she lays. (A creature of habit is my little girl; she has two favorite positions and I can tell when she shifts from one to the other. My whole stomach changes shape, and it makes me laugh when I'm not yelling "ouch!".) So anyway, we saw her legs and feet briefly. I fixated on her ankles hoping to see them tap. You know, for old times sake. ;) They didn't. But the toes on one foot flexed for me.  Bj called it out first. "She curled her toes!" Better than ankle movement really. I wish that I could see it again. I would re-play it a hundred times a day.  Easy.

I know, I know.....things like that in utero don't predict diddly. But I'm at the point where I say, "Let me pretend I don't know that. Let me have that moment!"  And so I'll keep it. Tiny toes of hope.

Turns out they want to see me again before "the big day" too. I asked nicely and they have scheduled me for the same day as my final OB apt. Next Friday. So my day will begin at 8:15 there before traveling down to to see my OB. Then I have some errands to run with Mom and it will be a long day but a satisfying one. A day to put an end to these infernal weekly pilgrimages to the hospital. Now, don't laugh at me when I say that. I am aware that after she's born the pilgrimages will be daily for a while. But like I said before, I'll keep my little victories, and however brief a moment, I will stand on the battlefield glad! But when the time comes to wage war again, I know right where I left my sword.

"For the word of God is quick, and powerful, and sharper than any twoedged sword, piercing even to the dividing asunder of soul and spirit, and of the joints and marrow, and is a discerner of the thoughts and intents of the heart. " Hebrews 4:12

Stoopid

So, you see in all the movies, the women who rush to the hospital with braxton hicks contractions only to find out it's false labor. Well, I didn't rush off to the hospital, but I darn sure called my doctor when I had some mild but frequent contractions beginning Wed evening. By Thursday morning, I couldn't ignore the worry any longer. They were irregular but happening more than 6 times an hour. They were low in my stomach, hurt my back too and while not intense, functioned like the proverbial Chinese water torture...both physically and mentally. As a first time mother, (who has nothing to compare anything to) of a child who would best be served (according to her doctors) with a c-section birth, after a while, I cracked....you know, a little bit. I told myself it was probably nothing since they were irregular, but I called my doc anyway. I came in and they did a Non-Stress test which consisted of hooking me up to this belt that monitored my contractions and baby's heartbeat. They also checked my cervix to see if after my contractions it was still closed. Thank God, it was! I felt like one of those old clunker cars that has all kind of problems until you get it to the garage and then the mechanic finds nothing wrong. "Bring it back when it happens again, Ma'am." Don't get me wrong, I am VERY glad that Evangeline isn't going to be born at 35 weeks! I just wish I had been able to keep waiting to see what transpired...to see if the contractions got regular or not.  Since then, I have had more contractions. Not as frequent yesterday (Saturday), but they sure don't worry me as much now that I know they aren't actually leading anywhere.  I have two appointments next week, my weekly with my OB and my monthly with my MFM. I have to admit, Im going to feel a little stupid going into my OB's office after wasting their time, but at least now I know that no damage is being done from these piddly little contractions. And what did GI Joe always tell me growing up? "Knowing is half the battle!"  I do wish he'd specified what the other half consisted of ......hmmmmm.......

C Section Questions Answered

Well, my Ob appointment today went great! And to think...I only have two more to go (plus 1 more MFM apt.) before "the big day"!  Evangeline is doing super and I got a few questions answered.  My first was about latex precautions. 72% of SB babies develop a latex allergy and the spina bifida association recommends that SB babies be exposed to as little latex as possible. I asked my doctor how I would arrange this at the hospital. Was there some kind of form?  As it turns out, he already does latex free so its just a matter of discussing it with NICU to see what their plan is. So, that's one thing down.

My second big question was would I get to hold her after delivery. Hospitals differ on whether or not they will allow parents to do this before the baby has had surgery to close the opening in the spine. I knew our hospital has a big paranoia about infection in their smallest patients so I wasn't surprised when he told me "no" to holding her.  I then asked if they'd do a "drive by" in her little incubator and push her near me so I could see her, maybe touch her, and take her picture. I just want to put my finger in her palm. Let that infant grabbing reflex do its thing...so she can clutch my finger and know I love her and will see her soon. Its what I've wanted more than anything from the start. As long as I can do that, as long as I know she's in safe hands, I will manage just fine.

The doctor went on to say repeatedly that a c-section is major surgery. It isn't like a cut on your hand. It involves layers of muscle and flesh. He said that the day of surgery I will only be allowed to go to NICU for 30 minutes and then only if a nurse accompanies me. I have to be monitored etc. So, that is good info to know too. I guess I'm trying not to think about any discomfort I'll be in as a result of the c-section....but there it is. Something I'll need to deal with. And I will.

I am so excited, though, that she will be here in only 20 days!!!  The doc did day I could bring my camera into the operating room and do a photo shoot of her to show everybody later. lol. I love her so much!!!! Can't hardly wait.

Mole Crickets of Worry

Well, last week was a rare one.  I didn't have to go see any medical professional for a whole week! Of course, tomorrow (Tuesday) will break my streak when I go in for my OB apt, but still it was nice last week to use my energy on other pursuits. My mom came over Saturday and helped me put all the baby clothes away in the almost-completed nursery.  That was nice.  I've had a little more energy this week compared to the previous two weeks which has ben very nice! I still am limited on what I can do: energy is a resource I don't have much of, but I am managing more time in the office and am able to help BJ out in the evenings when he works all day with the boys.  (for those that don't know, the hubby and I work at a boy's boarding school)

Evangeline is doing well. She likes to hang out on the right side of my belly, curled up and happy. She is still a wiggle worm and I love how she gets the hiccups every evening and morning.  In three weeks I'll get to see her and I am super excited about that.

I wish I could say at this point of eminent arrival that I was immune to nerves and stray worrisome thoughts, but sadly, I haven't entirely gotten the better of them yet. So I catch them one at a time when they spring up, like unwanted mole crickets in an otherwise beautiful lawn, and remind myself of the truth.

You know... like the Good Book says, "take every thought captive".  So I do my best to capture every worry, but it's strange how often those worry thoughts break out of the truth prison I've built, a prison shorn up with both medical facts and spiritual belief, only to go skipping through my waking thoughts and dreams.  I've decided that thoughts really are as tricky as mole crickets.  Have you ever tried to catch a mole cricket? Or stop a mole cricket? or Kill a mole cricket? Definitely only a task for the strong willed and stout hearted. So it has been with my worries. They bury themselves in their little tunnels and if left unchecked will eat away at the roots of the life, love and sanity that I so carefully cultivate. So, despite my frustrations at having to travel down the same mental roads again and again... I do it.  I tell  myself the truth about each worry, reciting scripture or fact or both and stuff the thought back into prison only to have to deal with another shortly after. I yearn for the day that my daughter arrives and the current crop of mole-crickets-of-worry will commit mass suicide in the face of reality and leave me the heck alone.

Right now, I find myself worried about the amnio to check for lung function (oooh, the worry bug whispers, what if it ruptures your membrane and her lungs aren't ready? what if the needle pokes her cause she wiggles?)  I worry about the c-section and the recovery process. I worry about her lesion "bubble" rupturing. I wake up from bad dreams about the size of her lesion (its a long one). I worry about seeing the wires they'll use to monitor her and the possibility she might need a shunt. (nobody wants their baby to have one, now do they?) but then again.... I worry she will need one and somehow no one will notice. I worry that with the lesion running the full length of her sacrum, that she might not have a functional sphincter, to control her pooping or the right muscle tone in her bladder to control her pee-pee. I worry that they don't know if its affecting her lumbar spine and what that might mean for her ability to feel her feet and toes. I wonder how many nerves are involved in the sack. I worry a lot about how I'll know what to do when the time comes to take care of her.

I'm being as real as I can with all this. These thoughts are nasty. They evoke emotions that are vile. I would obliterate them if only I had the arsenal to do so. But alas, in the face of such uncertainty all I have, all I can do, is battle them one at a time. I put each one in its cage, reminding myself that emotions lie. Worries change nothing. Truth and God alone are real. I know that given time, the worries I face will die of natural causes. In the light of holding my child, many will perish and I will laugh, and my baby will smile and we will go on living just fine without them. So I pray. I pray a lot and thank God for what I know He told me "She'll be fine." whatever that means to Him is truth to me. So simple, and yet so profound. I could use a few more prayers though... as time goes on, I am tired of fighting the worry.  I get tired of quoting it scripture and promises only to have to turn around and keep on quoting it!

Thankfully, I have memories of my Nana (my mom's mom) that great and terrible mole-cricket fighter. She used pots of scalding water to dump down their burrows. She put out bait and poison. For each one she destroyed, more returned, leaving little brown lines in her yard where their tunnels ran, but to the end, she did not give up. Every year she fought them with everything she had, and though they came back each year, they did not have an easy life.  I pray I am as stalwart, not giving in these last three weeks, doing all I can to "get my mind right" and ready to love my baby and thankfully greet my miracle.

^"We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ." 2 Corinthians 10:5

Perspective

I was thinking just yesterday about some of my earliest adventures at the beach. They involved  tide pools and  little stick leg birds that roam the shore in flocks. When you are very small, such flocks of birds look both pretty and soft, especially when you watch their feathers blow in the breeze.  And when you are very small, these birds do not see you as much threat, surrounded as they are all summer by people of all shapes and sizes. Walking or running, they will allow a little one to get within a fingertip's touch before they fly up and land again a few feet away.

One of my first very positive opinions of myself was garnered through these birds. I knew I had bad ankles; I had to see the doctor about them. But I also knew that I was a great runner. Fabulous. Super-fast.  I knew this because when I was running after those beach birds, wind blowing my hair, my legs pumping, kicking up sand behind me, I was the essence of speed, because I always ALMOST caught them. As an only child, who did not attend pre-school (pre-k wasn't common way back then), I did not have races with other children, only those birds. And I knew those birds were fast! I had watched many other children try and touch them, only to fail like I did. But oh! How close I got! That must mean I was a natural born runner. Why, I could all but fly myself!

It wasn't until school that my opinion of my own speed changed.  Because it wasn't until then that I raced with other children my age. Imagine my surprise when I found out that I wasn't the fastest at all, in fact, with my flat feet and in-turned ankles, I was just about at the back of the pack! This was a change in perspective.  My running had not changed. I still loved to feel the wind in my face and pump my legs as fast as they would go. It was my scenery that changed; it was the backdrop of my comparison. I'd gone from looking at stick-leg birds at the beach, to classmates to decide how fast I truly was.

I wish I could say that this change of perspective didn't take away the confidence those silly birds had given me, but I was only a child, and it did. As an adult though, I can take that lesson and realize that I now have some choice in my own perspective. I get to choose my measuring stick for my self and my life. I can compare myself to others who have "more" than I do or I can change my perspective to something more positive, like the fact I live so near the beach and will be able to take my little girl to chase the stick legs birds too. It won't matter how fast or slow she walks, runs or crawls at them. They will still let her get just a fingertip away before they fly off and lead her on another merry chase.

Personally, I want that wind-in-my face confidence back that I'm good at what I'm doing, no...even great at living my life! I desire that childish freedom to believe in myself that the world seems so keen to take away with its "facts". I am tired of the doubt, the worry, the fear that slips its way into my adult life as I wonder about money, and appointments and other pointless things that either will or will not work out. I want to once again, believe I can almost fly. And now, with the benefit of adult wisdom, I realize that is all up to me. Its all up to what and who I want to compare myself to, what perspective I want to give my thinking.  Why is it so hard for us humans to believe the best about ourselves? Well, I believe that I can begin the process of changing my perspective one little thought at a time.  My daughter deserves that. She deserves the best me and the best environment I can provide for her.  After a few changes to the calendar, she is scheduled to arrive at noon on August 29th.  That means I have the next 28 days to build more than a pretty nursery for her. I will be building my perspective as well.

"For as [a person] thinks in his heart so is he." Proverbs 23:7

Change of plans...again.

Its been a busy week. Tuesday, I had some contractions that hurt my belly even after they'd ended. Add to that some random nausea and I spent the next two days in bed. Today I went in for my monthly apt with the MFM specialist. Evangeline is doing well. She still shows no hydro. I did not have the pleasure of seeing her feet move because she was taking a rare break. After the contractions started on Tuesday, she went WILD, protesting the constrictions on her space and she clearly needs to have a quiet day today to recoup! But I am not concerned about her reduction of wiggliness. She has turned head down and I feel her feet tickling the top of my tummy often so I am confident they function at the moment. What IS a bit concerning is the fact that we saw her lesion for the first time clearly. Before it looked to me like random open shapes in bone. Now we can see the sac bulging out and the place where the skin/flesh is missing. I didn't care for that. Not a bit. I mean, in my head, I knew it was there, but I will confess that I laughingly keep hoping that each time, it will just randomly disappear. Maybe I was hit hard because I pictured it as smaller or not as wide. Whatever the reason, I found myself suddenly worried for her in a way that I haven't been in months.

Also, we could see the location more clearly and it is apparent that the defect is lumbar-sacral not just sacral. So we're back to the possibilities of greater difficulties in walking. The final "change" this week is a change in delivery date. We were looking at 39 weeks. Now they want to do an amnio at 37 weeks to see  if her lungs are functioning. If they are they will deliver as soon as the week of August 22nd.

I put all this info together on my drive home and reminded myself of some important facts that haven't changed. 1) God is still in charge and it doesn't matter to Him where her lesion is, he will still be her God and take care of her. 2) She is still my pretty baby whom I love. 3) We still have fantastic support all around us. 4) I can be thankful that at least I know ahead of time that my baby will need surgery etc. and so I'm not totally blindsided.

Even though her face is blurred by the umbilical cord laying just beneath her nose, I can see she has her daddy's chin and jawline. I am happy to meet her no matter when and can't wait to hold her.

Holland

Its sort of a right of passage. At some point every new mom and dad whose little one has been diagnosed with some sort of "special needs" condition receives a copy of an essay by Emily Pearl Kingsley entitled Welcome to Holland. If you have never read it, I will quote it below:

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland"

Now for myself, this Holland analogy hasn't taken hold in any real way. Mostly because if parenthood were a journey, I haven't even gotten off the airplane yet.  The landing gear have not deployed. Sure, they told me Mid-flight that I'd be landing in Holland instead of my originally intended destination. But the reality of what it will be like living my parenting years in the land of the Dutch hasn't really "hit" me yet.

Maybe today I got my first taste of it. Just a sample. A tiny forkfull of those famous dutch pancakes if you will.  I don't want to be difficult or belligerent. I don't want to wind up one of those grumpy people wandering around Holland International Airport grousing at everybody because of the flight change. You know the people I mean, the ones you can NEVER say anything right to. The ones its best to just avoid.

But today I had an issue. Today, I wanted to grouse. Basically I had an encounter with somebody who felt compelled to tell me that my baby will have "lots of difficulties" but  she went on to express pleasure at the fact that my family seemed so willing to chip in and help. I wanted to say things. But I didn't. I realize that she was just trying to say what she "knew" and I was being hormonal and taking it personally.

As the mom of a little girl with SB, I  represent the entire spina bifida community. I cannot afford to grouse at people just because I'm pregnant, hormonal and/or impatient with what they do not know.  When people stop me one day to ask me weird questions about my child or when people make assumptions about her, I will have to try doubly hard not to call them to the carpet. I want to change the perceptions about Spina Bifida, and I certainly cannot if I become grumpy about the subject and give snarky answers instead of real ones.  So, for me, the real challenge is not that I've gone to Holland. Its the way I have to represent...be an ambassador for my native country and show people that spina bifida isn't what they think. That kids who have spina bifida are not damaged goods in any way. For even though I never signed up for the job, I'm not just a mom, I'm an ambassador!

Do not repay evil with evil or insult with insult, but with blessing, because to this you were called so that you may inherit a blessing. 1 Peter 3:9 

Shower!!

I just had to post today about all the fun I had yesterday. My mom and several of my close friends collaborated to throw me the most wonderful baby shower ever!  I was so thrilled to spend the day with so many very special people! Evangeline is one lucky little baby with so many who care about her, root for her and who gave so generously to help her Momma get all the million and one things that a first baby needs to be safe and happy. 

I was blessed with so many beautiful things including: a glider, a crib, hand made ruffle socks, a complete travel system, a baby tub, an electric breast pump, a bassinet, tons of outfits and too many other precious little things to name!  I think that my baby is spoiled and she isn't even born yet. She may have spent the first nine months naked, but she certainly has a wardrobe worthy of a tiny fashionista now. I can only hope all this glamour doesn't go to her head.

We had some really great food at the shower as well including the fab spinach dip my bestie makes, my mom's pinwheel sandwiches and of course, the baby buggy watermelon my mom saw instructions for on line and just had to try her hand at making.  (I think it rocked!!) There were also lots of other scrumptious things including cupcakes and cake and meatballs and pasta salad and.... wow. I'm getting hungry just writing this all out.  Lets just cut this part short and just say the food was yummy and plentiful. ;)

There were shower games, of course, planned and executed by another friend who kept everybody laughing and entertained. Plus it was just nice sitting and talking in between to people I care about and don't see nearly often enough since work and pregnancy related sleepiness keep me fairly occupied.

I suppose I wanted to post about something as "ordinary" as a baby shower because I know that for a lot of women who get the news I got all those weeks ago, its a struggle to get back to anything closely resembling ordinary.  You feel out of control, like you are in a dream. Your emotions get jerked around from excited to frightened to angry to numb to deep sadness and back again in no particular order. Its easy to understand why, when you add in typical pregnancy hormones, some women have a hard time pulling themselves out of the roller coaster ride that is a spina bifida diagnosis to find themselves back to that place where they started- excited and eager to meet their baby.  That place where no other emotion exists than the one of bliss when you think of that little person bumping around your belly- that combining of you and your partner's DNA.  I get it. I really do. Bliss free from worry is a rare commodity to come by for any parent- especially for one who has to face the idea that all their ideas about being a parent have suddenly and irrevocably changed.

I want to post this to encourage any other women who walk this road behind me. Your family and friends can be your biggest asset. You can draw encouragement from them just as you draw strength from your faith. It may take a while....but you CAN find that excited feeling again. It might be work to get there. A daily exercise in laying down your fear and picking up your smile...but really...has worry ever helped change anything?  I am learning each day that worry has been an over-rated part of my life. Like an emotional appendix, serving no real purpose.  Our babies are stronger than we know. Our Creator is bigger than we guess. And every fear will eventually be conquered by reality...that basher and smasher of all things rooted in the future. What we fear will likely never be an issue. What we don't know will eventually become clear. I just want to encourage every lady out there that with support, patience and determination you WILL find that excitement again. You will do ordinary pregnant woman things.  All things are possible...even this "small" thing.

As one final illustration of what I mean, I will tell you about the ninja show my husband was watching for a while. It was a televised competition where men tried to complete this course in  the fastest time to win a title. All the competitors were athletes. Not a one was unfit in any way. The course was brutal. But the hardest part was saved for last when the competitors were already tired.  They had to use their finger tips to move along this ledge barely wide enough to grip, then they had to fling their bodies from this tiny ledge to another ledge further up in the air. From that ledge, they had to jump yet again and land between these two walls, throw their bodies straight out and wedge themselves between the walls....since the walls had neither hand nor foot holds.  They then had to spider crawl along between the walls to the finish line.  Many couldn't get to the final challenge. Some that did, fell off the skinny ledge, some couldn't make the jump...but at the halfway mark of the show NONE had successfully made the body fling to stick between those walls.  Finally, this one competitor was interviewed (just as all the others had been)  and he was a wiry, but cocky little guy. "I will finish this course" he said with Japanese subtitles, "I have seen myself do it." and sure enough, this guy climbed like a rehus monkey, jumped like a spider, and stuck the landing perfectly. He made it to the finish. Seeing him do what before was presumed impossible, gave energy to the other contestants. After him, many more made the landing. They all knew it could be done!

 For my situation, that wiry little competitor who helped pave the way for me has been my mom. From the moment we found out, even while my brain was mush and reeling, my mom's excitement to be a grandmother was never diminished. She wasn't worried about the challenges the baby would have. She knew we would meet them. She visualized it in her mind. She showed me it was possible. Even my husband who was just as close to the situation as I and who was just as knocked backwards jumped up before me, ready to put fear aside and take the challenge. I followed after.   But I COULD follow, because I had seen it done.

So, I guess what I'm saying with that is even if nobody else is excited about your situation...if you become excited, you will show everybody else its possible.  Somebody has to be the first one to put down worry and pick up a victorious mental picture of your baby thriving and your family rallying arround to support. Once somebody does. Everybody else then knows how to follow.

 He also said, “This is what the kingdom of God is like. A man scatters seed on the ground. Night and day, whether he sleeps or gets up, the seed sprouts and grows, though he does not know how. Mark 4:26-27

Touring

Some people take childbirth classes and learn to breathe through 16-24 hours of body numbing pain. Me: I take a tour to prepare! Since I will be having a c-section, I will be spared all the pushing and grunting and screaming that typically accompanies labor and delivery. I will however, probably be grunting later when I'm trying to walk with those staples in my belly. But let's not dwell on that!  Lets talk about all I learned on my tour.  :)

For starters, there is a LOT more security in place on the maternity floors than I would have thought. There are cameras and you have to be buzzed in almost anywhere you go. Only certain hospital employees have access to these areas and there is a procedure for almost everything. So, even though it didn't occur to me before, I am very glad to know my baby will be on lock-down 007 level security! lol

Bj, of course, is flying high right now. Turns out that when I'm admitted to the hospital, I will get a bracelet. When Evangeline comes, she will get a bracelet, and yes, HE gets a bracelet. This "bracelet of power" will allow him access to all things Evangeline. He will be the only other human authorized to pick her up etc.  Other visitors can see her, but he has privs. available only to bracelet wearers!

We got to see the NICU before the group tour of delivery rooms, nursery and recovery rooms. The charge nurse was very gracious and answered all our questions.  We got to see the area where you must scrub up for three minutes before entering the NICU and touching the baby. This is to prevent MRSA infection from finding its way to the babies. Then we saw section A, which is where babies start out. Since Evangeline won't be premature, she will get a little warmer vs the big huge plexiglass tank thingie that the teeny tiny babies get. She will stay there till after she is recovered from surgery and doing well. Then she will move to section B, which is the next step before coming home. It's less critical care. Finally, before we take her home, we come to the NICU to spend the night in one of their parenting rooms, just us and her to make sure we know what the H*** we are doing before we bring her home.  If all systems are go, then we bring in her car seat, they put her in and place her in a little red wagon and we pull her to the car and strap the seat in place...AND BRING OUR BABY HOME!!!  Woooo!!! Not sure how long the process will be from start to finish, but 14 days is a reasonable guess. Much will depend on if she needs a shunt after her closure surgery and how she is at feeding etc.

Meanwhile, after I get discharged, I still won't be able to drive so Mom will be supervising me at her house and driving me to make milk deliveries for the baby. They are very receptive to having human milk for the baby vs. formula and have a system all in place for that too...so cool!

So, after the NICU tour, we went back down stairs and had some dinner in the cafe, then joined the big tour group for the next phase of our tour.  For this part of the experience, I was chauffeured. I was waddling along sooooo slowly, and my tummy was hurting so bad (The round ligament pains have been getting worse) that Bj got me a wheel chair to make the travel easier. I was embarrassed by this, but he used his grumpy voice so I went along. And would you know it....it seemed like he was sprinting along the halls! It had taken us so long to walk to the cafe and we got back to the check-in desk so quickly.  "Why are you rushing?" I asked him. "I'm not." he said.  "Um... yes you are!" I accused. "No. I'm not." he said again. I was about to say something else when he told me, "Just look around you. See all these other people? Am I passing them? No. I'm just walking!"  Then it hit me like a ton of bricks. OMG!  A three toed sloth could pass me at my new "normal" walking speed! How did this happen???  It was a very sad moment, and one I shall not dwell on. At least I'm still locomoting, regardless of how slow.  So....lets get back to the tour highlights!!

The first place we went was to the second floor. We saw the room where I will come (and the ladies doing a regular delivery will stay in this room until the baby comes) until they are ready to bring me to the c-section O.R. The maternity/c-section O.R. is right up next to the NICU so it's the perfect set up for me and Evangeline.  After the c-section, I will go to a recovery room across the hall for a few hours then I'll be moved up to the third floor post-partum suite. And let me just say, those suites are SWEET!!! They used to be semi-private rooms that have been renovated into one HUGE room.  They have wi-fi, DVD player and TV.  Add the morphine drip that I'll have for the first two days and I guess it's party in my room.  ;)

All in all, I would say the experience was very positive for me.  It was great getting first hand knowledge of the processes we will be going through and learning hospital policy on this and that.  The staff seemed friendly and overall, I would say we made an excellent choice for our baby on where she will be going. Baptist NICU is a level 3 NICU, which is the neonatal equivalent to a five star hotel. She will get the best care possible. And it isn't long now! On our way out the maternity nurse on the postpartum floor waved and said, "See you again soon!" I just rubbed my belly and smiled cause next time I see her, I will have already seen my treasure!  How exciting a thought!!!!