Friday, December 30, 2011

There is no crack in heaven.

"Do you suppose God ever snorts an 8 ball? or maybe takes a hit of some mind altering substance right before he makes an important decision about my life?" 

This was said to me in a rather deep discussion I had about God earlier this week. Somebody I know is struggling with how God can be good and still "let" stuff go wrong in our lives. I had to laugh when my friend said it.  I assured him that, as far as I understand it, there is no cocaine in heaven. God isn't toking the ganja.... And God doesn't make bad things happen. 

I have a pretty thorough answer for the "why does bad stuff happen question" as I asked it myself back when I was a teenager. To find the answer, I read books on religion- all sorts of religions. I looked into apologetics and read books by people with old-school, Roman-sounding names. I never found the complete answer in any of those books though they did help me formulate my own philosophy on the subject. What really helped me understand was having talks with God. Rants about all the stuff that pissed me off. Long talks about what made me sad. It was feeling Him inside the peace that would suddenly flood over me in a crisis. It was getting an answer, not the one I expected, but one that showed up just in the nick of time....over and over again!It was learning I could count on Him. It was getting to know who He was to me. Because of the personal nature of the answers I found, I could never hope to convey them on a public blog- so I won't even try.  Discussions like that flow better in natural conversation where the individuals involved can learn from one another and bounce thoughts off other thoughts- things that the written word cannot accommodate.

But one part of my theology about "bad things" I will share here, because its relevant to my situation right now. And that is the absolute relativity of the term "bad".  You see, we found out today that Evangeline will need her shunt after all.  Four months ago, at her birth I would have plopped the idea of a shunt directly in the "bad" category. No questions asked. In fact, I may have shoved the "bad" box into a larger one labeled "horrendous", then stuffed that one down into yet another one  labeled, "life altering".  Now, not so much.  I've labeled it instead as "inconvenient".  Why the change?  Well, because life IS change.  What seems like a bad idea one day, can seem good the next. That is because human emotion plays HEAVILY in how we label things. I am not implying that emotions are bad things. Or even that we can control them completely if we try (sometimes no matter what we try, emotion beats logic as surely as a straight beats a pair).  What I am saying is that "bad" changes and God does not. 

Let me try and illustrate... when I was 16, with parental permission, one warm day in May I checked myself out of school early to go to a dentist appointment. My dad had called shortly before I left and asked me to wake him from his nap when I got home- he wasn't feeling too great and thought he'd take a snooze. So, I left campus as planned; I got my cavities filled and drove home. Once there, I dropped my book bag in a pile on the couch, grabbed a soda from the fridge and went back to my parent's bedroom to wake my dad.  I immediately noticed that he was laying across the bed rather than just on his side of it.  Upon approach, I realized that was not the only unusual thing... something just seemed off about him. After trying in vain to wake him by tapping, shaking and shouting, I finally realized that what seemed so odd was the absent, rhythmic rise and fall of his chest.   I ran to the phone and called 911.  In the distance I could hear screaming. I wished whoever it was would shut up so that I could focus on my phone call.  My dad needed help!  I was halfway through the call before I realized that the annoying person screaming in the background was me and all I needed to do was take a deep breath and shut my mouth to get it to stop.  That day for me was "bad".  But yet, after all the questions I asked and all the knowledge I sought as a result of that "bad" day, God helped me understand that "good" (another very relative term) came out of my dad's passing too.  As a two pack a day smoker since he was 12, my dad had developed some polyps on his lung. The doctor wanted to do a biopsy to check to see if they were cancer. Dad died before they got the chance- but if he could have chosen....what would he have picked? To die instantly at home in bed (The medical examiner hypothesized that he sat down on the edge of the bed, made the call to me requesting a wake-up and then promptly fell backward and expired, resulting in his position crossways where I found him. He also said that my dad's lung definitely looked cancerous...) or would he have chosen a slow death by lung cancer? I know my dad pretty well and I have to say, he probably didn't consider that day "bad" at all. For him it was a good deal.  He skipped a lot of hospital time and got to have a welcome home party in Heaven.   Should God have spared me a "bad" day and robbed my dad of his "good" one? God isn't like that. He gives us each free will. He was the very first proponent of first amendment rights. He lets people say what they want and do what they want even if it freaks Him the hell out. (This is where most religious people could take a lesson from Him). God never stopped my dad from smoking all those ciggs.  My dad was gonna die.... but this was was more ...well, it was more his style.  Shock and awe.  This death at home was the better alternative. 

All these other things that seem beyond tragic in our it even possible that there is a WORSE alternative out there? One we never got to know because thankfully it never happened?  I think even in the "bad" "good" lives on.  Especially if you let God help you find it and make the most of it. 

So, I guess that's whats on my mind as we head to Wed Jan. 4th.  The alternative the shunt is saving us from. In that light it actually seems kinda friendly. Dare I say it? Kinda good.

" Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them. " Psalm 126:5-6

Sunday, December 18, 2011


I gave up caffeine once. I lasted for MONTHS without the stuff and felt pretty proud. Then one long, thirsty August day, I took a tiny little sip of an icy cold Pepsi....and after that, I wasn't without a soda in my hand for over a week. I never fully kicked the habit again. I had, ehem...fallen off the wagon so to speak with no inclination to ever climb back aboard.

Recently, I've had a relapse of another sort. I've caught myself asking a "forbidden" question for the past couple of days.  I've had it banished from my life almost a year now. For the last 10 months or so, I just haven't allowed myself to ask "why". I mean, what difference does "why" really make anyway? The answer never changes the facts, assists you in coping with reality or makes you feel better. Not really. Ultimately, it just makes you dissatisfied, forcing you to re-think on situations better left to wander the darker, quieter regions of your mind... alone where they can't bother anybody, least of all you! And, yet, this week I've gone and done it. I've fallen off the "why" wagon. And let me tell you, it was a bumpy landing.

Maybe this has been a long time coming. Maybe I will just throw a few minor fits with a possible prolonged pout included for good measure, dust myself off and climb back aboard the "get-it-done-and-don't-complain-about-it-express".  At least that's my plan.  A short layover for some whine-and-cheese then back to life. But right now, I'm feeling pretty bruised up.

As this year draws to a close I can look back and think on what has happened:
1) In January I found out the unexpected but happy surprise that I was going to be a mommy
2) In April I had the heartache of a diagnosis for my baby that I didn't understand
3) I rode the pregnancy roller-coaster of changing prognosis and fluctuating hope for months
4) In September I was literally hit head on by a drunk driver and frightened out of the few wits I had left
5) Also in September, I had a c-section and recovered (mostly. There is still a band on my tummy that has no feeling on the surface)
6) I became the mommy to the BESTEST baby ever. (the highlight of my life- not just my year)
7) In November we were laid off from our jobs
8) Because we lived where we worked we had to move (Since no one will rent to people with no income, my Mom was good enough to let us all pile in at her place for the time being)
9) Because small companies in Florida are not required to report employee quarterly earnings, we have to prove income before we can receive unemployment.  As of yet, we still have not received any paydays, although we have been continuing to claim weeks and have (i hope) submitted everything they need.
10) Up to now, I haven't been able to tell anybody that we were laid off. My boss requested that I tell people we "left for personal reasons" because she didn't want parents or kids to know the school was in a financially hard place. To save their reputation, I let mine be tarnished. Even our co-workers though we just "up and left". I am only saying something now, because, like I mentioned before, I've finally popped a cog. This post right here will probably cost me a good reference in a bad economy but I refuse to live my life in that fear of what my former employer will say or do any longer. Its one little "why do I have to do this?" that I am dropping from my life.

I feel angry. I feel sad. I feel frustrated. I feel numb. The good news is, that through all the challenges I've faced, I didn't loose anybody. We all came through in one piece.  Evangeline is healthy, happy and flourishing. Frankly she loves the fact that we are staying with her grammy. Its one more person to adore her.  We were blessed with enough finances to meet all the minimums on things and we are afloat. I feel like 2011 has been one long storm and our proverbial little boat has miraculously made it out unsunk, unharmed, and just a little shaken. I wish I knew "Why" all these things happened. I wish I knew what next year was going to bring us.  But I don't. I'll just have to redouble my efforts to stay focused on my miracles (which are abundant and amazing) while forgetting all the crud and dismissing any pointless "why"s.  I know things will get better. We all just have to keep moving forward.

 The Old Testament prophet Isaiah spoke of a day when the world would find a light in dark places. He was talking about a baby born in a manger on a Bethlehem night.  I am so thankful that He came to give me hope in my dark times.

Isaiah 9:2
The people walking in darkness have seen a great light; on those living in the land of deep darkness a light has dawned.

Thursday, December 8, 2011

December Update

I fear my wee one may think a head rub is a form of greeting in our family.  Everybody pretty much rubs her head whenever they see her...checking her soft spot...which, by the way, is still soft. Hurray! Her next MRI is on the 28th and she goes back to see Dr. Aldana for the results on the 30th.

She is growing well.  She has strong core muscles, but still isn't holding her head steady.  We are working on it with extra tummy time. She smiles all the time and is growing more vocal every day. 

Prune juice has finally proven to be a reliable answer to the perpetual poo problem.  The apple juice kept things softer, but she reuqired something else to get things moving. Either Miralax to make things even softer or liquid glycerine babylax, which we alternated ever day or so. The prune juice we give every day now with two parts baby apple juice and we get consistant results. Still we have an apt. with the GI clinic at Nemours on the 12th to get her in with them before the "spinal defects clinic" in Feburary.

Our family has gone through some pretty big changes lately: A move and the need to find new jobs.  Some things have happened that we wouldn't have chosen, but I'm not as stressed about those changes as I might otherwise be.  I am just glad that the family is together, safe and healthy. 

The hubby and I have weathered so many storms in the past few years, we've become experts at battening down the hatches.  I have real peace that the storm will pass and the sun will shine on us all again soon. Until that time, there is something good to be found in the rain.

Friday, November 18, 2011

Thank You Rocks

Since about two weeks after we got baby girl's diagnosis, I have had a small grey rock sitting on my nightstand. Several times, as my husband was helping me clean our bedroom, he would pick up the rock and ask me, "Can I get rid of this?" or "This isn't important, is it?"

He knew the answers to those questions were, "no you can't" and "yes it is" respectively, but he was hoping that with the forgetfulness of pregnancy, those same hormones that made me try to use a can opener on a pot and set an unopened can on the hot burner, would wipe from my memory what I intended for that little stone. He never got that lucky. 

That rock, at least in my mind, was very significant. It's destiny was to adorn the pinnacle of my "thank you" rock pile. Humor me please, while I give you the back story.

Once upon a time, when the people of the desert wanted to create a memory, they would stack up rocks into tall piles. That way whenever anybody passed by they'd be all like "why are those rocks stacked up like that?". Then somebody would say, "oh, that's because King so-and-so won a great battle here" and they would tell the story. And the story would pass down for generations and be remembered.  From a cognitive psychological point of view it was (and still is) a brilliant mnemonic strategy.

Well, anyway, one day as I was thinking of my baby and her future, I looked down and saw this rock. I picked it up, put it in my pocket and kept on walking. (I should probably take this opportunity to apologize here to my mother who found all sorts of strange things in my pockets over the years. Sorry, ma!) Anyway, I played with the rock, turning it over in my hand as I walked and I thought of those ancient rock piles. I thought, "you know, I may just need one of those!"  Something to make people ask me why rocks are stacked up on my lawn. And I can tell them, "Oh! Those rocks are there because a miracle happened in our family!" Following up with details about how God gave us a whole series of victories. And Evangeline would one day tell her own children. And so on.  It would be my thank you memorial to God for helping me through. Anyway, I admit to being emotional during my pregnancy. And forgetful. And yes, passionate about this new little person growing inside me. At any rate, that rock came to represent my hope for her.  So it sat there, a promise of a rock pile, a splinter of a miracle.

Now my tiny rock has a bigger friend. When Bj realized that even after her birth, I had no intention of ridding myself of my newly acquired pet rock, he asked me if I still intended to build a thank you pile.

"Sure!" I said, "It will go in our yard one day. In the garden."
"So, we've got time then to gather the rocks. You know, since we don't have a house or a yard or a garden."
"Yup. Plenty of time to find rocks to stack!" That's really why I've been in no rush.
"Still, we should get started."
I agreed with his assessment. And I genuinely love how he supports me in whatever quirky thing I'm currently trying to accomplish.  He's game for anything, my husband is! So, this is how we have both begun looking for rocks.

Just recently, I spotted a whole area full of them outside Baptist hospital. After pointing them out to hubby, he agreed that for symbolic purposes we surely needed one from that place where she was born.  I'm not really sure if those rocks were part of the landscaping or were just there randomly, but either way, I have just appropriated one for my collection. Its actually a thrill to have  the beginnings of my future rock tower bumping around in the back of our truck!

Over the next year or so, I hope to find more smooth, flat rocks for stacking. So, you know, this season where everybody is being thankful, if you see a suitable "thank you" rock, think of me! And then call me and tell me where you saw it- my rocks need more friends!!!

Tuesday, November 15, 2011

You keep using that word.....

I do not thin' it means what you thin' in means....

So we avoided the shunt for another 6 weeks.  We go back then for a follow up and another MRI. Basically the doctor said that the last MRI did show mild to moderately enlarged vents and that going by the MRI picture alone a shunt may be warranted. However, the clinical picture she presents is a whole other sort of Rembrandt. Her fonts (soft spots) have sunk back in. He was pleased that the spaces between her skull plates are closer together. All in all, he says she looks good. 

Inconceivable!!!  lol

Its been a roller coaster.  It really has.  But thank God, she is doing well without surgical intervention needed to relieve inter-cranial pressure!!!

Tuesday, November 8, 2011

The call....

So last week was busy.  We had our urodynamics test and follow up appointment.  Turns out she has normal bladder pressure (a good thing) but she doesn't void completely (not so good). However, right now there is no indication that we need to use a catheter to help her go pee-pee.

She went to the pediatrician and got her two months shots.  She's 23 inches and 13lbs now.  Her head circumference went down from the 75th percentile to the 68th, something I took to mean that perhaps her vents weren't continuing to enlarge with fluid. (well, that, along with the fact that the plates that had separated in her skull were not so far apart anymore)

Then, Friday after office hours came the call. I had the baby in my hands and a baa in the bottle warmer when I scrambled over to answer a number I didn't recognize. It was Dr. Aldana, her neurosurgeon. As soon as I heard his voice it was all I could do to keep from saying "Oh, crap!" I mean, its not like he'd call just to say hello or to tell me good news. Good news can always wait.

Turns out he had just finished reading the results from her latest MRI (something else we got done last week) and he didn't like what he saw. Her vents were slightly larger.  He said it was time we considered treating the problem; he wanted to chat more fully when he saw me at her next appointment.  I hung up the phone and remained pretty calm. There was a time when "shunt" was a bigger swear word than the one that started with F that my mom assured me was the worst possible word you could say and I should never, never, repeat it regardless of the frequency with with the neighbor boy sang it out while playing in his yard. But Friday "shunt" didn't hit me with the smack it usually did.  Why? because I'd been reading about the work Dr. Warf had been doing with a procedure called ETV/CPC.  In infants under a year old with spina bifida, ETV/CPC is 75% effective in treating hydrocephalus.  A shunt is 100% effective, but depending on how you look at it, it also has a 100% failure rate. They all stop working sooner or later. Such is the nature of a mechanical device.

I have been working pretty steadily to get Evangeline seen at Miami Children's by a doctor there who does the ETV/CPC procedure. I hope to hear back from them by tomorrow. I also want Dr. Aldana's opinion on the matter. I have been reading research and praying like crazy, wracking my brains trying to figure out how to make the best decision for her.

Then tonight it hit me. I just don't want to deal with this. Its a pretty natural feeling I think. Natural to look at the options for treating hydrocephalus, finding slight flaws with all of them, and thinking how much better it would be if she didn't need either option. Can't we just return this whole hydrocephalus package to whatever store it came from? How about trying to give back spina bifida while we're at it?  It doesn't fit. Its the wrong size. Its the wrong style. It has a broken zipper. Whatever they need to hear is what we will say if only they will let us send it back.

But things don't  work that way and I am happy to know that given the severity of what could happen without treatment, I do have options to choose for her. The alternative is too frightening to contemplate. But tonight please excuse me if I pray, pray like the night I found out about her diagnosis, pray until I feel God soothe me to sleep, pray until I know he's heard clearly exactly how much I don't want Evangeline to have hydrocephalus. Then, you will have to excuse me again for believing right up to the last minute that He will intervene and we won't need either option. The vents will go back down. The fluid will begin to reabsorb.

I remember thinking that it would be a long shot if we made it out of the hospital without a shunt because of the leak in her back. (That whole situation started with a call too...) I prayed and praise God, we made it out. With everything else I've done these past few days to try and find her treatment- looking in every medical journal abstract- calling my insurance company to get waivers to see another doctor who does another procedure- how can I forget the most important thing?  This whole weekend, how could I have forgotten to pray? Its a situation I must remedy. How God will answer me I cannot say. I only know that he answers every time. And from the beginning, he has told me that she is going to be fine.

I will close by remembering a story from my childhood when I went to Sunday school and the teacher told us Bible stories with little illustrated people she stuck to a flannel board. One of my favorite stories was  of Rack, Shack and Benny (found in Daniel chapter 3). I loved to hear about how, when the three of them displeased the king, they were sentenced to be thrown into the firey furnace. When their sentence was carried out, instead of just the three of them in the fire, onlookers could see a fourth man walking around in the flames. God had joined them and He protected them. They walked out unscathed.  I guess SB is kinda like our fiery furnace. No, I know SB won't kill anybody like white hot flames will. But it can sure seem scary to stare it in the face.  Rack Shack and Benny weren't sure what was going to happen to them either. They prayed. Then they waited. Maybe they hoped somehow the ropes would miraculously  fall off their hands and they could karate chop the guards and make a break for it. Maybe they hoped God would douse the fire with some holy water before they got too close. I bet they hoped for anything but actually getting tossed in. Most people would say that before you get thrown in, you can expect a miracle. But expecting to be delivered after you've gotten tossed in...well, not only are you crispy, you're also crazy! 

In spite of that, those three friends told the king, "Your threat means nothing to us. If you throw us in the fire, the God we serve can rescue us from your roaring furnace and anything else you might cook up, O king. But even if he doesn't, it wouldn't make a bit of difference, O king. We still wouldn't serve your gods or worship the gold statue you set up." (Daniel 3:16-18 MSG) 

Like Rack, Shack and Benny, I know God may not rescue us from the situation I currently fear (the hydrocephalus) the way I hope he will... but I do know he will walk through it will us. He will forever be that fourth man in the fire. The one who seems to show up late, but somehow gets there just in time. So, based on that, I reserve the right to believe that anything could happen between now and surgery day.

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!

Tuesday, September 27, 2011

First Pediatrician Visit

Is it possible to be proud of a doctor's visit? Pride should come from something you do, not something you have. But I happen to have a great little girl who makes me float on air; I'm so pleased to be her mother that I can't help but let it go to my head when people complement her. I didn't do anything really, but sometimes I let myself steal credit. Why yes, she is beautiful, thank you very much! I chose those eyes especially because they go perfectly with her lips. Seriously though, somebody should get the credit and for me it all goes to God. I wish sometimes that I could hug Him. Because I would.

Today God especially gets the credit because her pediatrician was so pleased with her. First off, let me say we have a GREAT pediatrician. He is well versed with spina bifida as he has other SB babies currently in his care and has seen many more than that during the length of his practice. He is in practice by himself with just his nurse practitioners etc and so he takes time to get to know every patient. Love him! and think he's the perfect choice for my darling. The fact that he's like 15 minutes away is just a super nice bonus!

Well, why was her pedi so pleased you ask?  Well, let me count the ways. He was pleased to begin with by her head control for her age. He was pleased by her strength in her legs. He stood her up to see how she put weight on her legs and she was strong for a baby without SB. She showed off later for him and pointed her toes. When he asked if she peed or just dribbled/leaked all day I told him she peed just fine. To prove my point, when he was examining her, her diaper fell down and she peed a puddle for him on the table. Take That! I think I heard her say.

She was born 7lbs 1oz and in her 20 days of life has grown to a whopping 9lbs. Wow. Yes, she does have dimples on her elbows and fat rolls on her fat rolls.  I loves me some baby chub! We are trying a new formula that the doctor recommended. Its Enfamil AR, that has rice added in to thicken the formula in the baby's stomach  to help prevent spit up. (she had lots of spit up with her old formula!) There is always a chance she just cant break down the milk, so we may try soy next if this one is a bust. He said with some babies its all trial and error.

All in all, I am so exited by how she is doing. And so very, very thankful for all of it.  As an added bonus, I asked the doctor today about her poop. She used to go All. The. Time. Every diaper change had poop in it. Now she skips some. The doctor said this is normal. Normal! And since she grunts when she goes she must be able to feel something. Yay for sensation! 

Finally, after being weighed, examined and oohed and ahhed over, princess was ready to GO!  She was fussy the rest of the afternoon because her sleep pattern had been interrupted.  That's the price you pay, I suppose,  for superstardom. That and paparazzi. And tons of kisses from mommy. <3

Saturday, September 24, 2011


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

Thursday, September 22, 2011


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!

Wednesday, September 21, 2011


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!

Saturday, September 17, 2011

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 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?"

Friday, September 16, 2011

Bump in the road

You know it's shit like this that has caused me to leave mascara and eye liner off my morning makeup routine for the last several months. Its precisely just this sort of occurrence that, after I've had a cry, makes my temper rise and the blood rush to my face until I feel like saying swear words (just like the one I used above, only more of them...and strung together in creative ways that allow me to insult multiple generations of people at once).

The devil is a liar. A stupid, toothless liar. But he can roar. Oh, he can roar! And this morning, as I was getting ready for my daily pilgrimage to NICU, he called me on my cell. Well, Ok, so it wasn't exactly him. It was my day nurse in the NICU. She told me that in the short time since I'd last seen my daughter 1) They were having to cath her every 8 hours and 2) Her incision site has swollen to the point that they needed to monitor it because it might mean she needs a shunt.

Now, I knew that if her vents filled with spinal fluid, she'd need a shunt. But apparently, if the closure site swells with spinal fluid, she will ALSO need a shunt. Geez, like I really wanted to get a call about brain surgery today.

So, I had a short cry and wiped my face. Thankfully, there were no tell-tale streaks left behind since, as I mentioned earlier, I have modified my makeup routine to account for such outbursts. Then I got mad. I got really mad. And I prayed. And I called my husband and he prayed. And I posted on facebook to let all my friends know to pray. And now I wait. I wait for God to show up and give me strength (real strength, what I'm feeling now is just strength stolen from anger, but It'll do in a pinch). I wait for God to show up and reveal his plan for getting us out of this mess. And by this mess I mean, get us out of the hospital and home with no cathing and no shunt. Its a lot to ask, but He's a big God.

As a bright spot, they have put in a call about getting us a room where we can room-in with her and take over her care full time! That is very exciting. Hubby is leaving work early to help me pack in preparation for this wonderful possibility.

I have a lot to be thankful for. But that thankfulness doesn't make me any more willing to accept something just because the devil is waiving around a pair of dentures, yelling that he knows how to use them. Put 'em back in the cup by your bed, you (insert those creative expletives here), and go back home before God gets here. Yeah. I can use the phone too. I called. He's on his way.

Thursday, September 15, 2011


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?

Tuesday, September 13, 2011


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. ;)

Sunday, September 11, 2011


Wow!  Graduating at only 4 days old! She sure knows how to make a mommy proud.  Our NICU has two levels of care, and our little Evangeline is graduating today to the less intense level.  She'll be on NICU side B!  So far she is eating 3 oz. per feeding and has been taken off all IV fluids and the yucky old IV in her scalp has been removed. She is regulating her own temperature. When I go in tomorrow I will be able to bring her hats, socks and shirts as well as blankets to wrap her in that look more befitting of a princess than the hospital blue and white ones. So far she's only been in soft, homey blankets when I go to feed her; they haven't allowed them in her bed.
As for other info, there is still a lot we don't know. That's all typical, I suppose, for life in the NICU.  Uncertainty and lots of scrubbing are the only guarantees. lol.
For instance, we have noticed when changing her that she doesn't have what's called an "anal wink". That is a term used to describe an automatic tightening of the sphincter muscle when something brushes up near it. This lack of response would indicate problems with bowels, but for more information I will need to speak with neurosurgery. Now, her other bottom regions do show sensation since she wiggles away from the wet wipe; I think that's a positive sign. The soft spot on her head is still soft, which it would NOT be if there were fluids building in her brain so that bit of news indicates a continued lack of hydrocephalus.  :) Still no word from genetics, orthopedics or urology. Hopefully sometime this coming week I'll have an opportunity to find out when we are supposed to meet with them and who else may have been called in on consult.

As for me, I've certainly done better physically but I am blessed to be going along as well as I am. Lots of prayers have helped. So has the fact that I'm so motivated to get down to NICU to see my baby. As any mom can tell you, personal comfort or discomfort is no longer a deciding factor in how we live our lives.
As of tonight though, our little family of three is sleeping under three different roofs and that is hard for me... just as hard if not harder than the physical challenge. I am staying at my Mom's house (That's her in the above picture) because after the c-section I cannot climb the steps to get to our place (we live on a boat at the harbor where we work- Both Bj and I work at a Maritime Academy/High School). Also, I cannot drive, so she will be helping me make the 1 hour trip from her place to the Hospital. Bj is sleeping aboard our beloved LaSalona (our boat/home-sweet-home). And Evangeline, of course, is resting happily in NICU.  I know its only a matter of time before we are all together at last, but right now I'm sad.  I won't really be seeing hubby again till the weekend. (Thankfully he has this coming weekend off!) We will both be taking 4 hour shifts at Baptist so that our lovey one gets plenty of holding and affection. I'll be there for the 11am and 2pm feedings. Bj will attend the 5pm and 8pm ones.  For now its the best we can do. Fortunately, I am believing that her NICU stay will not be prolonged so this physically and emotionally challenging time has an end in sight.

Right now, I am asking for prayer for some very specific things. 
1) That she continues to show lack of hydrocephalus and does not require a shunt. This prayer will be on-going as she must be monitored daily. As I mentioned before the greatest risk is the first month (though it can happen later on). 
2) That despite her current lack of reflex, she has full control of her bowels and bladder by time for potty training. (if not sooner!)
3) That all the doctors I need to meet in order to make the proper connections for her care fall into place for me. The process of being referred, doing evaluations, getting more referrals etc can be agonizingly slow and confusing. I need God to give me wisdom and strength as well as favor with the right people who can help me and answer my questions.

I just want to say thanks again to everybody for their continued support and prayer. God does miracles everyday. I'm in the middle of my miracle!  Which, when you think about it, is probably the wackiest, messiest place you could ever hope to be. I mean, I wonder what Moses thought as he was walking through the Red Sea with water piled on both sides, just teetering there unnaturally and ominously as he hurried  on as fast as he could to the other side... bet it wasn't "Hey! Cool! A miracle is happening!"  It was probably more like "Holy $#@! what have I got myself into?" Personally, I don't want to miss a moment of my miracle...because in retrospect this time, (even though I can't always see it clearly now)  will make an awesome story of the power, love and grace of God.

Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever He promises. Romans 4:20-21