Frustrations

frus·tra·tion Noun/frəˈstrāSHən/1. The feeling of being upset or annoyed, esp. because of inability to change or achieve something.


So we went to the hospital today as planned. I was all psyched up, prayed up and determined to be braver than I felt. The amnio was a bit tougher than I remember. They only had access to one small pocket of fluid. Her umbilical cord was clogging up other places to pull from. I ended up having to get stuck three times, and all three times the needle was pulled in at angles trying to get through to the fluid. Finally we got a sample and we waited patiently. AT 11am, an hour before the scheduled surgery, they phoned to tell me her lung function levels weren't high enough.

You could have kncoked me over with a feather. At 37 weeks, 5 days, we all thought she'd be ready. The doctors are convinced she will be by next week. So convinced that we don't need to have another amnio. (Thank God!!) We go back the 7th of September to have it done. This time there IS no backing out. :)

I want to express my deepest thanks for all the prayers that went out today at noon. They were needed. Believe me, they were needed!  Now, I must go unpack all the things in the hospital bag that can't stay packed and maybe take a nap. May God bless you all!!

Romans 8:24-25 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.

Pre-C-section appointments/Monday Schedule

Well, I've done it. I've gone to my last appointment before baby! woooooo! Before now, I thought the trips back and forth to various physicians would never end. But apparently, for now at least, I have reprieve!

I admit, on the weekend before my birthing experience, and after consulting with my doctors again, I've had a few second thoughts. Ideas of perhaps waiting a week....you know to "give her more time". Truth be told, I've had my doubts a few times about this whole c-section business, but the bottom line is- she's in there and she's gotta come out somehow. Since science has yet to create a pain free way to extract one human being from another, I suppose I better just man up (or woman up, if you will) and simply go through with it on Monday as planned.  Its not like I won't have a solid support system in place.

The plan is prepared. The people are poised and ready.  All systems go...and all that jazz. From what I can tell, Monday will go a little something like this:

1) 8am arrive at MFM office to have amnio to check for fetal lung maturity. They must do this for any baby born before 39 weeks (even though at 37 weeks, 5days she isn't considered premature, its better safe than sorry). I am told that her fluid levels are good. They will have no problems drawing the sample.
2) By 10am-ish, they should have the results back from the amnio. If her lungs show maturity, I will go down to the first floor (where I have already pre-registered) and get admitted to the hospital.
3) They will wheel me to the maternity/NICU floor where I will wait for a bit because waiting is what people do in hospitals.
4) At some point, I will get my epidural. Getting stuck in the back with a long needle and rendered unable to move from the waist down does not equate to a happy moment in my book, but it is necessary, Perhaps, like the amnio needle, the pain will be brief and mild.
5)Assuming that there are no emergencies that take precedence, at noon they will take me to the c-section room that adjoins the NICU. I hope that while I'm laying there I get some feel good medicine in my IV. Otherwise it will be creepy to feel the pressure of what they are doing on the other side of the curtain but have nothing to do but lay there, stare at the ceiling, and try to control my heart rate. But feel good meds or not, it will all be over soon. My doctor will do the c-section procedure and I will hear my baby's voice for the first time.I will see her briefly before they take her to NICU.
6) I will be sewn back up (no staples, just disolvable stitches and some sticky tape stuff) and will be taken to a recovery room until such time as I can move my legs and feet. My prayer is that they feed me that this point. Being pregnant makes a person hungry and I can only imagine that after that long with no food and drink, I'll be jonsing for some jello and water at least. ;)
7) Theoretically during the hours I'm in recovery, the neurosurgeon will have time to go to NICU and evaluate Evangeline. When he does, he will report back to us. I suppose this visit could happen at any time and may not happen till Tuesday, but I find that scenario unlikely as the closure surgery its self will likely take place Tuesday.
8) Once I can wiggle my toes, I will be taken to the post-partum floor and assigned a room. At some point thereafter I will be taken by a nurse to NICU for a 30 minute visit.  At some other point at present yet unknown, I will also be meeting with a lactation consultant as I'll need to begin pumping right away to ensure food for the wee one.
9) Try to mentally keep up with BJ who will doubtless be strutting down the hallways, showing off his hospital security bracelet that ID's him as a dad, and taking pictures of his baby every time she sneezes or poops. I will be so happy to see him like this, but trying to keep up with his rounds will no doubt make me sleepy, which will lead to the last item on my list...
10) Sleep.

Monday promises to be a VERY busy day but one I hope I can handle if I just look at it one step at a time, ignoring all the others while I'm completing the one I'm on at the moment.  When I do the amnio, the amnio will be all I'm there for. When I get the epidural, I'll tell myself all I have to do is be still. When I'm getting the c-section, I tell myself to be quiet, that all I'm doing is listening for the sound of her breath. I hope this technique works for me. Just  existing in the moment. Either way, whether my stress reduction technique works or not, the baby will get here. And all that other stuff will happen, one way or another. By Tuesday/Wed. there should be some sort of update with pics so I can share my excitement with the world about being a mom!!

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