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

Instincts?

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

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

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

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

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

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

HOME!!!

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

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

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

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

Encamped

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

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

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

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

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

Encamped along the hills of light,

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

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

A strange planet...

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

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

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

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

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

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

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

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.

Popular

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

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

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

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

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

Pre-op and

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

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

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

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

Patience

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

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

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

Graduation

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

 

Mellow

Today was great! Not only am I feeling 100% improved, I got to hold and feed my baby! She is on a schedule down in NICU now and I can go during feeding times anytime I want to hold her, feed her, love on her. I swear she gets more beautiful every time I look at her!She is supposed to eat an ounce and a half every 3 hours and so far she's been keeping up with it. Soon, she won't need her IV fluids any more. When I went in this last time at 8pm, I noticed they had her wearing preemie diapers (??) and the poor thing had red marks on her chubby little leg. Mommy spoke to the nurse and we fixed that right away!!

You may be able to see the IV tube in the top of her head in some of the pics. This looks scary, but is pretty normal for babies to have to get an IV there. Babies don't tend to be able to keep an IV spot for too very long and so periodically they need a new one and the head is a good place to put one since the veins there are a decent size. Still, I will be so glad when they remove it!

Also, she has the most mellow personality.  Seriously. She hardly ever cries. And this was before she was groggy from pain meds. Even the nurses comment on how sweet she is, just relaxin and waitin for her next bottle. She has realized now that when somebody picks her up she will be fed, and she immediately starts to open and close her little mouth to show she wants the bottle. Of course, she then makes you work to actually get the nipple in her mouth, and she will fall asleep while feeding, but she is so cute and happy, keeping her beautiful blues open more and more, watching our faces as we feed her.

Bj has gone twice for me to give her the bottle when I was too exhausted to go. He is such a natural with her. When he's there, I never worry! Such a precious family I have!!!!

As for a medical update, she is still doing awesome. Her feet are still moving after surgery. Her head size is measuring well and no fluid is building up. The special bandage in still on her back and won't be removed for another day or two so I can't see how long the scar is or how its healing, but I hear from the nurses who heard from the surgery team that it looks GREAT!  The geneticist has yet to stop by but is still on her schedule so maybe he'll see her on Monday and I can follow up with anything/testing for us as parents he recommends. Everything from this point is a waiting game till we can bring our baby home. I can't believe I will have to leave her tomorrow when I'm discharged. I know I will still see her every day but it won't be as often. Hopefully, she will eventually be able to be moved out of NICU and into her own room that way I can just stay with her there.

I suppose that my only other spot of sadness on the sheer joy I have as a new mom is that my milk hasn't come in yet. They tell me that its not unusual and that most women start making milk for real on day 3 or 4.  I certainly hope so. A nurse almost walked in on me earlier when I was giving my boobs a pep talk.  Fortunately she didn't realize I was speaking to my mammary glands and I avoided an awkward moment, but still, they need to get busy already!!!  A baby as perfect as Evangeline deserves only the best I can provide, not just some synthetic formula! 

Surgery Day

Well, what a day! I regret that I have been unable to get back individually with everybody who has enquired about the surgery but time factors and my energy levels have simply not allowed me to do that. However, I will endeavor to give the info I do have here in the blog.

To begin with, today has been beyond difficult for me. My incision is larger than average owing to my wonderful doc's desire to keep the pressure off of Evangeline's back during "extraction". It is a decision I wholeheartedly agree with and a price I am more than willing to pay, but paying is what I have been doing. The incision is abt. a foot long and simply standing up is an act unto itself. I have been having issues due to low blood pressure (last reading at 94/56) and so I get really light headed, my vision narrows and without the help of an icy cold cloth, I would probably loose consciousness from a simple walk to the bathroom. I can sit up for limited periods of time and get exhausted just from my attempts to pump milk for the baby. 

I did get to go see Evangeline as they were taking her back to surgery. Bj pushed me in my wheelchair and we followed her to the holding room/ pre-op area and chatted with some of the docs and nurses who would be assisting in her surgery. We said a prayer for her as they wheeled her back.  The surgery went wonderfully according to the neurosurgeon. They were able to sew up many layers and there was plenty of skin to cover the incision without having to resort to a skin graft etc. The muscle layer was not large enough to sew together which is not unusual, but the fascia (connective tissue layer over the muscle) went together beautifully. They found only one nerve on the right side that terminated into a dead end, but there were several on the left side which explains the fact that her right leg seems stronger and her right foot reacted more to my touch. But don't count her left leg out folks!  Its nothing a little PT and determination won't fix.

At the moment she still has no hydro and the surgeon explained his plan for checking daily to ensure nothing develops and escapes our notice. Orthopedics will also be along to check her out and her urodynamics study has been ordered and will be scheduled for when she's recovered. Sometime tomorrow a geneticist will be stopping by. I have no idea what to expect from that consult but it should be interesting. A social worker also stopped by this afternoon. She will help connect Bj and I to services Evangeline must be referred to in order to receive.... like a medicaid program for kids with special needs or local early intervention services to get her PT/OT going after an evaluation. She will also help us file for SSI to see if Evangeline qualifies. Considering the fact I still haven't totally decided on who Evangeline's pediatrician is going to be, obviously I could use all the help I can get.  I am also supposed to be getting in touch with the local SB clinic, but I don't think there is a rush on that.

I am feeling a bit down as I could have breast fed her tonight. It was a wonderful surprise that the doc would let her eat so soon after going under general anesthetic. After hearing the good news, I dashed (well Bj dashed as he pushed me in my chair) from NICU (where we went to see her post-op...she looked so peaceful, just like always) back to my room to put on something button-down and breast-feeding friendly.  Regrettably, when trying to wash up, I almost blacked out again and had to sit down quickly or fall down. BJ put his foot down and insisted that I rest rather than go back downstairs to try feeding her. They only have one small bottle I have managed to pump, which makes me sad, but BJ assures me that she will snack on that and be satisfied until I feel better early tomorrow morning and can go to her at last.

It is sooooo important to me that I be able to go in the morning! I am confident that I will!! The nurse will be in soon to check my vitals and my hope is that my BP will begin a steady climb. Meantime I cannot say enough thank-yous to Bj for being there through everything today- including the removal of that tape/dressing....OUCH! I could not be as comfortable as I am without his constant assistance. Also, for anybody whose proposed visit got rescheduled today- I am sorry, I do still love you and I appreciate your patience during this somewhat overwhelming time. 

Happy Birthday!!!

Well, we arrived at the hospital very early this morning and everything with the epidural and c-section went as planned. Bj was a great support for me and held my hand any time he could. Because the surgical drape was so low, he could see the entire surgery which was a creepy thought for me, but apparently didn't bother him. She came out with one disgruntled cry and promptly peed on the nurse holding her. They didn't put her in the incubator as originally planned to push her by me so I could snap pics, it was more of a "Here's your baby!" blur near my face and then the sound of a closing NICU door. I was disappointed to say the least, but fortunately BJ nabbed plenty of pics and a video for me to ogle just a short time later while I was in recovery.

Every time he visited her he brought back more photos. It held me over till I could see her myself. I was cleared to do so sometime around 9pm!  Wow, was that awesome. :)

All in all, she is doing GREAT! I am so proud of my hark-haired princess. Her legs kick. She has good ankle movement in one direction and "not-so-good" in the other, but hey, its there! She responds when I tickle the bottom of her feet. She's going poo poo and pee pee on her own. I plan to inquire tomorrow (once I finally get a chance to speak with her surgeon) when a urodynamics study will be performed so that we have a clear picture of what is going on with that.  Of course hydrocephalus can occur either in utero or within the weeks, months or even years after closure surgery, requiring the need for a shunt. The greatest risk is within the first month or so after surgery. She had no hydro in utero and we are praying and believing that she will not need a shunt after closure, but that is a process of monitoring (and continually believing for the best!). I also hope to get with the surgeon to discuss his strategy for monitoring the fluids in her vents. There are several methods for doing this and the nurses in NICU give random answers to that question when I ask them, so I can only assume its physician specific as to protocol.

What else? I know they have taken x-rays but am not sure what, if anything, they revealed. I am sure they used the x-rays at least in part to check for hip dysplasa and I'd like to verify that there isn't anything there I need to be concerned about. I have so many questions right now and it seems as if only her surgeon has the answers. Talking to him is HIGH on my list of priorities, but I will wait till after the surgery which is scheduled for 2:15. I know that once I speak to him,  I will feel better informed so that I can verify and follow up with my daughter's care.

Lastly, I am so pleased that she is bigger than they predicted. It does me good to see the chub in her cheeks! I am a very lucky mommy to have been given so perfect a baby to love.  Not only that, but I have amazingly supportive friends and family. I thank you all from the bottom of my heart for all your thoughts, prayers and encouraging words!! May you each be blessed!

Ready, Set, GO!!!

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

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

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

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

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

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

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

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

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

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

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

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