An Update on Miss BeDelia...

Today was our big day. And it was crazy HOT! We ended the day with the whole fam swimming in our pool - such a sweet relief after the stress of the day and the HEAT! And then Miss BeDelia let us know that she had HAD it, so off to bed. Did I mention she woke up the minute we snuck out of bed at 5:30? We left her bedroom door open to keep air moving (no central air here!) so she heard the first whisper this morning and JUMPED up. And off we went.
The morning went well. After dropping off Eden And Josiah with my sister (thanks!), we listened to Delia's angry hunger screams most of the trip. The girl likes her food! We got to the hospital and up to her room and it turns out the lovely nurse we first met knew Steve's relatives out west. That was an odd coincidence ;) And then came the ugly gown and booties. And then - the hospital crib and that blasted monitor. It kind of comes rushing back. The nurse did her best to rush through that part, bless her for that ;) Delia was a riot. She wanted to make a jungle gym out of this crib. So we took her down to the play room and she was just in lala land. She loved it! It was so great to have her to laugh at to keep us distracted :)
I brought her in to the MRI room because they wanted her to see one of us as she went to sleep. She didn't really care. She was so exhausted (likely from being so hungry), she passed right out. The anesthetists were hilarious, and it was great to have them be so light-hearted. They saw my knee-brace and offered to have me do a ride along MRI. Awesome. Turns out that that was a joke ;) They couldn't find a vein in her chubby hands, so they couldn't administer the hard-core anesthesia meds - and luckily they didn't need contrast for the pictures. They were kind enough to stop after three tries! Because of this, they just kept the mask magic going and she woke up much faster, so things moved much more quickly than anticipated with no 'recovery' period or whatever. It was literally like 45 minutes instead of 2 hours.
She came up Miss Crankypants! Totally thirsty and hungry. The amazing CRNA carried her all the way up to her room because she didn't want to lay on the bed they thought they were going to wheel her back on! What a guy! They gave us the okay to give her crackers and juice, and she angrily chowed away. She was groggy, but fine.
We left after a couple more checks of her vitals and got some lunch - then back to see the neurosurgeon and check out the pictures of her brain. Let me just say its kind of odd looking at your child's brain on a screen! Anyway- first they measured her head circumference and found that it has, in fact, grown since her 9mo check up which was in early June. Her line on the growth chart is not a curve, but its starting to make a straight line almost - going up, not over so much. Then the doc came in and showed us her scans. He said that her three ventricles are all larger than "normal", with her third ventricle being the puffiest of the three. These ventricles are filled with spinal fluid, and he gave us all kinds of details I won't bore you with here. At any rate, He showed us that her brain is clear of tumors or cysts - so that is not what is causing this fluid build up - Thank God! He said that the size of the ventricles is currently right on the border of being cause for surgery - so he is comfortable with us waiting to see her pediatrician at her 12 month check up in August since it is so soon. If her head circumference increases or plateaus only slightly, he would do the surgery. If it happened to go down toward the "normal" curve (back toward everyone elses head size), he said it would be something we would leave alone and just monitor for awhile since we do have this in our family history, we won't just ignore its presence.
THEN - there are two options he mentioned as far as procedures. One is a shunt - he would go in and put in a shunt which would create a path for this fluid to drain into her stomach and then it would get absorbed by her bloodstream. The problems he mentioned with this procedure are that kids can grow out of shunts - meaning more surgeries to put in bigger ones - and also they can get blocked or infected, meaning more surgeries to put in new ones or treat infections, etc. However, this procedure is the commonplace thing, standard option, etc. The second option has a really long name he breezed over, but basically it would be a procedure which would create a larger opening for the ventricle in question so that it could flow more on its own. This is a one-time fix and she would never have to worry about this issue again. The downfall is that based on her size, she would have to be "accepted" as a candidate. I like this option because its a one time thing - but it is more risky, according to this guy. He also openly said he doesn't do the procedure and we would have to go to a younger, newer doc to have it done. Well, then I would go to a younger, newer doc either way?? Yikes. But he actually would send us to a pediatric neurosurgeon for that procedure which they don't have in Fargo, so then I could go back to my comfort zone anyway.
He said that he would send his notes to our pediatrician by the end of today so she could call us and discuss that or set up an appointment to review it. I am SO blessed to have been referred to a great pediatrician - I know she will call me personally ;) (Thanks Gretchen!)
I don't know. On one hand, I am SO, SO, SOOO thankful. I am praising God that there are no tumors in this sweet baby's head! No major cysts or blockages to be found. The test went amazingly well! No complications with anesthesia! Oh my goodness somanythings to be thankful for!
On the other hand I have so many questions still without answers and I just hate limbo! This diagnosis has made me doubt myself so much as a mother - how many signs have I missed because I stopped looking for milestones??, etc.. And I just was going into today needing a PLAN. Not a wait-til-August-and-repeat-this-day-plan. But a solid its-here-or-its-not-and-we'll-do-this-tomorrow-or-not-at-all plan. On paper. That I could put on my fridge. Bleh. Now what? Shall I carry a tape measure in my pocket to check my sweet baby's head every day just in case? Check her pulse through her soft spot to make sure the pressure hasn't gotten more intense on her fragile brain? silly, I know… but spewing…. plus the air conditioner wasn't working in the van, so I'll just throw that in there too ;)
All of this to say, the good definitely outweighed the bad - BY FAR - today. Oh man, did it ever. But in the end, we are still in a place of LIMBO. Please keep Miss beDelia in your prayers. Perhaps God will surprise everyone and her peers will catch up with her head size by the time she turns one.
"I see that the Lord is always with me. I will not be shaken, for he is right beside me. No wonder my heart is glad, and my tongue sings his praises! My body rests in hope." Acts 2:25-26

If this is what it takes to praise You, Jesus bring the rain..

I sing those words. I cry through the song. I cry out that I will "praise you through the storm"… but will I? Do I? Oh, Lord knows there is a storm rocking my boat this very moment. Truth be told, I sat with Steve this afternoon and we both finally admitted our 'secret' frustrations that it seems as though the storms haven't stopped coming - we haven't seen peaceful waters in who knows how long (in our hurting hearts opinions).

Crazy hair Bedelia

On Tuesday, Steve and I took Delia to Fargo so her and I could both see the doctor - me to see if we could get a decent idea as to what was wrong with my knee, and Delia because her pediatrician wanted to have an ultrasound of her head because it continues to measure SO far off the chart. We went into this thinking my appointment was going to be the kicker, considering that the doc from the ER had told me his best guess was that I had sprained my knee and tore my ACL on Friday. SO, when the orthopedic doc told me he thought that I had popped my knee cap (he had a fancy term for it) after a very thorough exam which had me drumming the exam table and doing the labor breathing I had never used!!!,  things weren't all that bad. A little confusing - it didn't seem like that should be so painful, but whatever. I got a new brace, Delia went for her ultrasound and we headed for home. I didn't praise immediately, even then. I should have - I may not need surgery after all - but I still don't have a definite answer to this issue and that stinks. The praise came, but should have come sooner….
When her pediatrician called me personally the next day to tell me that she and the radiologist had reviewed the ultrasound and had determined that Delia in fact had mild hydrocephalus and that she would need a fairly urgent MRI and appointment with a neurosurgeon?!?! panic set in. Did I praise? Absolutely not. I wept. And then I swept it under the rug as my son walked in from his day at VBS. And I put a smile on my face and wiped my tears and couldn't crack though my husband could read my eyes, so I avoided eye contact until I made up an excuse to send Josiah up to brush his teeth in the middle of the day. He's a smart kid, so this was difficult. And I wept some more. Did I praise then? Nope. Sorry, not then either if I'm being honest. And then he came charging down the stairs and out came the happy facade again. And then I sent out text messages. My dear friends know me well - I cannot call in states of emergency because I am a weepy mess when things get raw and I refuse to be a blubbery blub on the phone. So they have to love me even though I sent out this via text. (thank you)
Not long after they called to say they fit her in for an MRI on June 30. My mind starts racing - is it so soon because of the urgency? Or they happened to have an opening? Ugh. I hate how the mind races. And they have us scheduled with the neurosurgeon that same afternoon. The MRI will be 2 hours long - she will be under full anesthesia for the procedure - which I understand, its far too long for her to hold still, but SO scary for me to have my babe go through that, even though we've been down that road with Eden before. Barring no complications she will be released later that same day, and then the neurosurgeon will look at the images and will be able to give us an idea of the plan of attack. BLEH. Doesn't that sound like barf? I didn't feel like praising after than phone call either.
I woke up this morning and it hit me like a ton of bricks, a thought that hadn't dawned on me until now and I have no idea why: my oldest sister Laura was stillborn due to hydrocephalus. Of course that had been the thought on my whole family's mind yesterday upon my breaking the news, but for some reason I hadn't put two and two together. A whole new wave washed over me today.
I know that we were told this is "mild". I know that Laura likely did not have a mild case. However, as a mother, there is nothing mild about having something done to your child's brain. When the pediatrician tells you that the way to fix this is most likely putting a shunt in to drain the fluid - that is a procedure, an operation on her brain. That isn't a tea party. That isn't anything mild. Its petrifying.
Sometimes its ridiculously hard to want to praise when the storm is raging. Especially when the storms keep coming, and doubly especially (doubly especially?!? ha!) when the storms deal with your babes. How can one be expected to praise God when there is a storm raging with my child and all I want to do is hop over on my crutches and hold her instead? And yet? We are supposed to? And yet…. we need to.
"Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain"  (MercyMe - Bring the Rain)