Saturday, October 29, 2011

Just thought you might want to know...

The juice worked like a charm!!! We take 1oz of juice mixed with 1oz of water in the morning before we have our regular baa. Then we have probiotics at night and we get regular poos that are not like clay. Hurray! I can now back down on the Karo and am still experimenting with how much of that is needed in how many bottles.

Also, Evangeline has been featured in Cassie's "Beyond Measure" blog during her "Faces of Spina Bifida" feature in October!

And the letter to the editor I created for SB awareness was published in the Newsleader!

Tuesday, October 25, 2011

Short medical update

So things have been going pretty well with the baby. I have had few appointments this month, but November will be slammin'. We have urology apts, genetics apts,, MRI apts and NS (neurosurgery) appointments. I am actually very optimistic about the MRI and NS apts. I have been praying and believing and many of you have been believing with me that Evangeline will be among the 10% of babies with lumbar lesions that don't need a shunt. All signs at the moment (at least to my untrained eye) tell me that she will win those odds.

As you may remember our last NS apt showed mild hydrocephalus and enlarged vents. Her soft spots were soft, but very large as the plates in her head (one running around the front and one going down the middle) had separated. Those gaps are now NOTICEABLY smaller.  I don't think bone grows that quickly so I can only assume that it means the fluid is decreasing allowing the plates to fall back in place. I am actually looking forward to seeing the next MRI as I think it will be cause for a celebration. And believe me, I am already planning one in my head. Invites will be sent and wine bottles opened, and tears will be flowing down over big old smiles.  So stay tuned for that report mid November. I am already thanking God for it before I even see the MRI.  Those of you who are waiting with me for miracles may soon have one more to add to the growing list.

The only cloud in our sunny life lately has been poo.  Evangeline is getting all backed up and it takes Karo syrup in every baa (bottle) to just keep the works any fashion whatsoever.  Bless her, she has been so uncomfortable. She strains and grunts in her sleep and her little face turns red and she doesn't want to eat as much because her tummy is full.  So, I call her pediatrician yesterday and end up speaking to the PA.  The conversation goes something like this:

Me: I have been putting Karo in every bottle and she's not going very much and what she is doing is like clay and she's uncomfortable. What more can I do?
PA: Well, she has spina bifida. The nerves aren't enervating her stomach properly.
Me: Yes ma'am, but how can I help her? I have actually ordered some probiotics for babies that I plan to try but I want to know what else I can do.
PA: You can try the probiotics but they probably won't do anything.
Me: They won't?
PA: No she has spina bifida and she lacks the proper connections in her bowels.
Me: Ok then, but how can I HELP her?
PA: Well, you can try giving her some juice. Mix apple and white grape juice and give it to her warm.
Me: Is that safe for a 7 week old baby?
PA: Yes, but it probably won't help.
Me: So, juice and probiotics won't help.... what will?
At this point she launches into the whole SB blah blah blah nerves blah blah nothing you can do blah bla bla. And I'm all thinking seriously? This is how you want me to help my child? By assuming that she's stuck being uncomfortable? 

Suddenly I took a little mental vacation. Right there on the phone with her while she spoke. Those of you that know me well, know I always relate things to other things (usually some cartoon or random song but this time it was with a country...why, who knows.... I'm just saying this is what I was thinking when she was talking....) I imagined her voice taking on a thick Russian accent as I hearkened back to the days when the USSR was a power to be reckoned with and all the people there just had to "learn to live with it".

"Leave fighting to Bolshavics." I could hear her say, "Save your energy. Life is life and ve must learn to live vith it. Come, I tell you joke to cheer you up....

"One day inspector left from St. Petersburg to check on farmers in outlying area. First farm he came to he valked up to farmer and asked, "You grow potatos here, do you not?"
"Oh yes," replies farmer, "Ve grow potatoes."
"Show me your crop" says inspector.
"Certainly" says farmer, "I take you to cellar right avay, but as ve valk, I vill tell you about my potatoes.  Ve grow many potatoes this season! Big potatoes. Fat potatoes.  So many potatoes that if you stack them up in little narrow pile they vill touch the feet of God!"
"That is impressive," says inspector, "but you are forgetting one thing, comrade. In mother Russia, ve are enlightened men. There is no God."
"Then ve understand each other," says farmer, "There are no potatoes either!"

 I remembered this old joke as she was going on about appreciating the fact Evangeline was pooping at all, and it reminded me of something important. In my world there is a God. And because of that, I can believe for the unbelievable. Because of God, I already have a harvest of miracles and I choose to keep believing for more. Not out of greed, but because God is who God is... and he keeps His promises. I can trust in that. In the meantime, I wait for the probiotics to come in the mail and will be giving her some juice. I will report back here as soon as Evangeline's poo changes consistency and frequency. I will likely title the post "She was wrong. It did help."  lol  Hope and God still live here and always will.

Thursday, October 20, 2011

Who you are....

Hello my brilliant girl!  I am sure one day you will wonder what you were like as a baby, what kinds of things you did, what filled your days.... and all that other neat stuff that will make for great stories later on in life. Well, I am going to tell you what you are like as a newborn.  Think all babies are created equal?  Think again! Babies can be very different from one another, and as I have always suspected, you are a very special baby. (I knew it first when I saw that ultrasound picture of you at 5 weeks gestation. You were the cutest embryo I had ever seen.  And so perfectly round. Not lumpy like all those other pictures of early-stage embryos I'd seen.... But I digress, we are talking about your first 6 weeks of life outside the womb, not your time inside it...)

Anyway, you are very laid back. You eat well, sleep well and hardly ever cry. You eat lots- about 5-6 oz a feeding and you feed every 4-5 hours or so. When you are awake, you love looking at things- just looking. You have a favorite toy on your bouncy seat that you can stare at for an hour. A few times you have reached out for it. This is very advanced of you.  ;) This toy was the very first thing I ever noticed you smiling at. From there, you smiled at sun-lit windows and once you grinned like the mad hatter at a checkered flag.  Finally, one bright morning, right before you turned 6 weeks old, you smiled at me. I was very flattered to be considered as interesting as a bright window or a monochromatic flag. 

You are a great communicator despite your lack of mastery in the English language. When you are hungry, you don't cry right away. First you open and close your mouth and make smacking sounds with your lips. You also suck on your arms or hands.  This is a pretty clear clue that you want your "baa" (what I call your bottle). If I'm asleep, and miss these signals, you begin to fuss and grunt. Since I am a pretty good communicator myself and can pick up on your signals, you hardly ever get to the crying stage before you are fed. You have maybe cried 5 times for a bottle in your whole life. Mostly you make this little eh-ehe-ehe-ehehehe sound to complain about things.

Sometimes you make sad little quiet cries when you are lonely and as soon as somebody comes and picks you up, you are happy. You love to be with your family. Me, Daddy, Grammie and Grandpa, Nana and Papa. (Especially me right now. You love to be where you can see and hear me). Lucky for you, everybody loves to  hold you as much as you love to be held. Some family members have speculated that this may mean we are spoiling you.  But nobody actually does anything about it; we don't really care because we are all so happy with you getting your way.

The only other thing that makes you cry right now is spitting up. You hate it. Sometimes it comes out your nose. That would make me cry too. But if you are laying down and you spit up, as soon as I come to get you and clean you up, you stop crying and snuggle into my chest.  See what a good baby you are?? 

You sleep at a cradle at the foot of our bed. We like to have you close to us. You would prefer to sleep on a person, but you think the cradle is nice especially if I am in your sight, rocking it for you. During the day, you come into the office with me when I go to work. You are such a well-mannered baby that I have never had any trouble. As long as I am prepared to take a break around time for your baa, I can have a normal day in the office. You even came to a staff meeting with me once. Only one time did you have a comment. You grunted rather loudly. Everybody stopped and said "ahhhh!"

Lots of people think you are cute. I never really liked attention. But for some reason, I don't mind when perfect strangers stop me because they see you and want to get a closer look. In fact, when you out-grow this stage, I might actually miss it.  I am starting to like showing you off.  I especially like showing you off to people who don't know you were born with spina bifida. They just think you are an extraordinarily cute baby girl. It makes me smile extra inside when I see you waive your arms and kick your legs cutely. They have no idea they've just witnessed the closest thing to magic this world has to offer.  It feels like a beautiful secret between me, you and God.

You know, you are big for a 6 week old. You are already wearing 0-3 month clothes and starting to out grow some of the smaller ones in this size.

You have lots of doctors appointments. Everybody wants to check you out and see how you are doing since your surgery. Of course, you are doing fine. But adults worry and must check and re-check.  You are a regular little wiggle worm which surprises some people who think they know about spina bifida. They didn't know that a baby who was born with open spina bifida would be able move so well. But you show them. And you make me smile every day when I change your diaper and you wiggle around so much.  Speaking of diapers, you make all kinds of loud, odd noises when you poo. Your daddy likes to cheer you on when you are doing this. He says things like "That's right! You go baby! You show that poo whose boss!" All he needs is pom-poms. I think he will cheer you on in anything you do in your whole life.

You love getting a bath and having lotion put on your plump little legs. Some babies cry during a bath. Not you. You make happy faces and get really relaxed. I wonder if this means you will like water when you grow up? You also don't mind getting dressed in the mornings. You don't fuss or fight me. The only thing you don't like is if I take too long getting the outfit over your head. Then you grunt loudly at me. But the rest of the time, you act like you enjoy it. And that makes our time in the morning extra special. I take my time getting us ready for work just so we can be together a while longer.  Then after you're all dressed and looking like a porcelain baby doll, I just sit there admiring you, holding your little hand in mine, talking to you about nothing till I have to gather up the diaper bag and dash us both out the door.

Even as a baby you show personality, intelligence, emotion and spunk. Your whole family feels blessed that God sent you to us. I love you very much and can't wait to continue to get to know who you are.... my little Evangeline!!!!!

Friday, October 14, 2011


I've never been particularly graceful. Some might call me clumsy- and they'd be well within their rights to do so. I have been known to trip over those tricky patches of extra chunky air when I'm walking. Physical balance has never been one of my great strengths. I don't win games of twister. But up to recently I have always been pretty good at striking what is called the "work/life" balance.

In a service occupation, you have to learn to take time for yourself. I learned early on to put on a smile when working with kids and families, do my job to the best of my ability, but always make time afterwards to recharge so I would have something to give away again the next week. When I got married to a man who also worked in a similar field, we found little ways to not only take time for ourselves but to incorporate date nights and together time to keep our communication open and our marriage strong. It seems motherhood may challenge my balancing skills as it is shaping up to be the greatest balancing act I have ever undertaken. When I'm with her, I only have thoughts of her. It seems unthinkable to me that I should be able to tackle the problems at work. But much to my eternal shame, when she and my hubby (who just broke his elbow) went to my moms for a few days so I could cover hubby's shifts at our mutual workplace without any additional worries, all I thought about was work. I missed her. I missed him. But my thoughts were how to solve work problems.

Now both are back home. Hubby cannot help with the baby because he cannot safely lift her. I have the privilege to be able to take her with me into the office.....but that is not as easy a thing as I first imagined. So, here I am, trying to give my best to my job which is really a lifestyle and a ministry, trying to find time to be with my husband in positive ways and trying to care for a baby round the clock. Lack of sleep and the ensuing diminished mental faculties make the simple things seem tougher than they really are. It makes me grouchier than I've ever been at my spouse who really doesn't deserve the tone of voice I've used on him with ever-increasing frequency.

And then there are appointments like today that I'm not even sure how to file on my overcrowded mental shelves. On one hand I could just drop it into the "good news" pile and/or the "no longer need to think about it pile" but on the other I've been instructed to file it under the "watch for this" section in the "call for help immediately if you see the following" drawer.

I am blessed beyond measure that my daughter didn't need a shunt put in immediately after her closure surgery. On the other hand, she has shown an increase in fluid that the doctor calls "mildly abnormal". He showed us the MRI pictures and as usual, I wish I never set eyes upon those medical black-and-whites. Some things that you see, you just cant un-see. And the fluid pockets must have quadrupled in size. I made a face like a guppy right there in the NS office, just open-mouthed trying to decide how to formulate "gahwhabigwhy?" into a series of coherent questions for the doctor. I think I succeeded, but his answers out of necessity were just as vague as my questions.

So its great news that there is no shunt at the moment but it all comes down to the fact that not even the doctor can predict what will happen next with ANY certainty whatsoever. We are in uncharted waters and here there be monsters. Her fluid could stay on the same curve and everything'd be fine. It could decrease and allow the plates in her skull to go back together, and we'd be awesome. It could continue to steadily increase and any number of things may or may not happen clinically that may or may not give us warning that a shunt is warranted. We go back in three weeks for another MRI and another follow-up.

I wish in all my "advanced" education I learned a psychological trick to help put all these divergent thoughts of mine into some semblance of order- to help me strike a balance between being mom, wife, employee, and medical helper-monkey but alas, they never had a chapter on this in the books I read. So, I'm on my own to muddle through. The simplest solution is to once again shove everything I can't mentally deal with at the foot of the cross, give the Lord an embarrassed smile because of the mess and just say "Here Lord! Just like you asked me to..." and walk away leaving it there. As for work, home and family life, I think they may all suffer a bit while I formulate some kind of routine. I'll try harder to keep the low growl out of my voice when I'm communicating with my husband (who really is a great guy) and I'll give it my best when I'm in the office to maintain a level of quality in my performance that I can be proud of. I'll try not to fall asleep or drool on the baby in the middle of the night while feeding her. I'll keep the house, if not clean, then at least sanitary enough to avoid a fine by the EPA. And when I fall short in one area, there will be nothing to do but try again. After all, this isn't a juggling act. Its my life. And one additional thing I must balance in is enjoyment. I can't wait for things to settle down before I enjoy living. I have to work to find a way to enjoy everything that's happening now chaos and all...or I'll wake up and find that my life just went by in some kind of uber-busy blur. And that would be the greatest tragedy. So in the midst of it all I have to find the time to experience and savor the moments that make me smile. Like taking the time to put a bow in her hair or laughing at the face she makes just before falling asleep. Or sharing a joke with my husband about something that broke and letting myself giggle about it even before we figure out how to fix it. Or spending some quiet time with God, just letting him soothe me like I soothe my baby. These moments cannot afford to be sacrificed.

The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life. John 10:10

Monday, October 10, 2011


I know that some people say that talking to God is fine- Its when He starts talking back that you need to schedule a cat scan. Personally, I do believe God speaks to us. In all kinds of ways.  For me, one of those ways is what I call "God thoughts". They are random ideas that pop into my head when I am doing/thinking about other things. Sometimes its when I'm in the shower rushing to get ready for work or on auto-pilot driving down a familiar stretch of highway. Last week it was at 3am while I was half-conscious feeding baby girl. I was practically drooling on myself for lack of sleep, just staring at her bottle, watching the formula move down the side as she drank... when I had one of those thoughts that seem to come from nowhere.

You need to start looking at her like she's a regular little girl..not like she's a time bomb.

Whatever else it did- it woke me up.  What? Where did that come from? Sure, I had been worried about all the various aspects of hydrocephalus and had questions aplenty about her upcoming urinary analysis appointment, but a time bomb? Really? Was that how I was seeing  her?  I stared down into her half shut eyes, all drowsy with a full belly, and realized that yes, indeed, I was waiting on the next scary thing to happen and kick up mushroom clouds all around her. At the same moment, I felt a wave of peace sweep over me that maybe somehow, she was just a regular little girl. That it was safe to expect a life full of and focused on ordinary but precious moments like this where we just stare at each other, fighting sleep and feeling the love. If only I would choose to see it that way.

Ok. So, God is smart. I finished feeding her, burped her, put her back to bed and made a decision. No more waiting on the "to shunt or not to shunt" question to resolve its self. I wanted to schedule my daughter's baby dedication. So I did. Without any answers on the shunt issue- and it turned out ok. No time bomb boom. Just a pretty little girl in a white dedication dress. I have learned a valuable mommy lesson. She IS just a regular little girl. I can't let myself be blinded by all the "extras" that questions, appointments, and waiting brings. I can't constantly keep treating her like something drastically awful is going to happen to her the moment my back is turned. If I treat her like she's just my little girl, we will both be better off for it. I will have more peace and she won't have an example of fear to learn from.
I have to let God have the worries. I mean, that's a good deal, right? He gets the worries, I get the baby! Not too shabby an arrangement at all!

And besides, she is doing GREAT! Her orthopedic appointment was all aces. They don't want to see her for another 6 months. She doesn't need braces of any kind and he thinks she will likely not need them to walk in the future. He is pleased with her bones and muscle tone. I think that's just awesome. I continue to be amazed by what she can do. By what God has helped her be able to do. Those big hands of His protected her back, just like He said they would. She is and will forever be my little "good news" baby!