Thursday, August 30, 2012

Quick Update and Some Pretty Adorable Pics

Just wanted to update you all on where we stand as of today.

I got a call from the dermatologist yesterday morning saying that we could start the oral antibiotics for Emri's hemangioma. I'll start that tomorrow morning. I pray, pray, pray it works!!! The topical medicine I've been putting on the spot seems to be working! Maybe the two combined (along with lots of prayer(: ) will knock it out pretty quickly.

Today Em had her bladder test and
PRAISE THE LORD
her bladder functions as it should!!! 
What a relief!!!
He said, though, that 20-30% of patients who have tethered cord surgery have difficulty emptying their bladders, so if that happens with Em I will have to put a catheter in to help her empty her bladder out. He said it's very unlikely for that to become permanent, but it could happen.

Let's just go ahead and rebuke that right now!
:)

Here's a couple pics of her during the ultrasound:

She did so good! Just laid there the whole time!

Here's one of her and daddy before the actual procedure. 
I love how much she loves him!!

So, the next steps are just follow-up appointments. September 17 we have a follow up with the dermatologist to check the progress of the hemangioma removal. At this visit she will tell us if she thinks we need to do the laser removal. September 18 we have a follow-up with Dr. Oakes. I'm hoping this appointment will be to schedule the actual surgery.

I'm really, really still praying for that little miracle. How amazing would it be to go in for a visit and the doctor tell us she doesn't need surgery?! While I'm on this, a friend of mine posted something a few days ago that I've saved to my phone and read it all the time. This is what it says:

"Don't be afraid to ask for a miracle. But at the same time pray for the strength to accept God's will."

That's some good stuff right there! Like I said in my last post, I know that Emri will be healed..it just may not be the way we want it to happen! God's way is the perfect way. Even though I think the best way is for him to just miraculously heal her, that may not be his plan. 

And I have to be okay with that.

So keep the prayers flowing. We got a great report today! Let's keep that trending! :)

Alright, enough of the medical stuff!! Let's see some cute pictures, shall we?!
Matt and I had a little photo shoot with Em for her two month pics. Let the adorableness ensue: 








She's so cute I can barely stand it! She's so much fun now. She's starting to be more responsive- for example, when I wake her up from a nap she will look at me and smile real big..
Melt. My. Heart.
So precious!!

She's a tough little girl. She's already been through a lot for only being 8 weeks old. If I could take it from her I would. 
Keep praying for her and for continued good reports at each visit, and for the hemangioma to shrink substantially or go away completely. Knowing how many people are praying for us and for her totally blows me away. We can feel your prayers and we thank you all so, so much!!

I'll leave you with this little nugget that the same friend mentioned above posted, as well:

"Adversity is the testing ground of our faith. God has to risk losing you forever to your anger and bitterness in order to have you for His true son.  Anyone can believe and sing praises on the Temple Mount when the sun is shining, but true praise is sung in the darkest valley when the Accuser tells you to curse God for making you suffer so much pain. If you can still praise your Father's goodness, even in the darkness, then you are His son indeed."

xoxo


Tuesday, August 28, 2012

"This Child Has a Problem..."

"This child has a problem...and we need to fix it."

Those words, spoken by Emri's neurosurgeon, run through my head all day everyday. 
As we sat there in a room at Children's Hospital with Dr. Oakes, he rambled medical jargon that I didn't care a thing about for what felt like 30 minutes...and then he said what I had been praying NOT to hear...

"This child has a problem...and we need to fix it."

I felt like I was in a fog the rest of the time. I'm very thankful for my very attentive husband! 
Through all of this, I NEVER remember what the doctors say. 
He's amazing...and not just because he listens well :)

The emotions and thoughts I had after getting the news of Emri needing surgery I'm not too proud of. I was am very angry and hurt. I have to work through it constantly every day! I don't understand the way God works, and I don't understand healing, but I DO understand that He loves Emri more than I ever could. He IS going to heal her...it just may not be the way we want it to happen.

Every time a thought crosses my mind, I have to remind myself of the kids who have it much worse than Emri. In the words of Dr. Oakes, "this isn't the end of the world," but if you're a parent you can understand how it could feel that way. 

BUT

Emri wasn't given a death sentence. She is perfectly healthy.
We know the problem.
We know how to fix it.
And we have the best neurosurgeon around to fix it.

I could ramble on and on about how I feel and how we are dealing, but I don't want this to be a doom and gloom blog. This is just a little bump in the road of an otherwise perfect little girl.

So, to update you all on where we are with everything:
Yesterday, we met with a dermatologist to look at the hemangioma on Emri's back
...
Well, let me catch everyone up who may not know what's going on:
Emri was born with a dimple on her back, which we now know is a tethered spinal cord. Because her cord is fused with the skin on her back, there's a collection of blood vessels around the dimple called "hemangioma." 
That's puts everyone up to speed-ish..

So, yesterday, we met with the dermatologist to look at the hemangioma. We had to do this because Dr. Oakes cannot make an incision through the hemangioma because that skin doesn't heal well. So we have to put a topical antibiotic on the spot itself, and we will have to give her an oral antibiotic once we are approved to give it to her (they had to do an EKG and glucose test on her to be sure it's safe for her to take- it's a medicine for high blood pressure that seems to work on clearing hemangioma). We may also do some laser treatments to make the spots go away quickly. If these things don't work with Dr. Oakes timeline, we will have to do a plastic surgery procedure where they will insert a balloon under her skin to stretch/grow enough skin to remove the hemangioma then do a skin graft, let that completely heal, then do the surgery. 
I wanted to post a picture of this..mainly because I want all of you reading this to say a prayer that this goes away quickly.


A little scary looking, huh?

Thursday of this week, we have to take Em to the urology clinic at Children's to do a bladder test. The first thing that a tethered cord will start to affect is bladder and bowel control. So they will put a catheter in and test Em's bladder control to make sure there hasn't already been some nerve damage.
This I am not excited about.
They won't numb anything for the catheter...so she will feel everything.

I won't be in the room with her for that. That's too much.

Once we test the bladder, we will meet back with Dr. Oakes to talk the actual spinal surgery. What he will have to do is go in and separate the spinal cord from where it is attached to her back, and put it back into her spinal column. 
It all sounds very scary..
AND IT IS..
But he assured us that he has done many of these surgeries. He actually did two of the same the week before we met with him.
The timeline he has given us is 1-2 months, pending the removal of the hemangioma. 
Here is a picture of her spine from the MRI:

The arrow points to where the tethering is.

So...

We have a bit of a journey ahead of us. 
I'm scared. I'm nervous.
I'm anxious.

But I trust God to take care of my little girl.

I've been clinging to this verse since Em has been born:
"For I am the Lord your God who takes hold of your right hand and says to you, 
Do not fear
 I will help you."
Isaiah 41:13

"I will take your hand...and I will help you"

What a sweet promise from our Lord. 

Keep praying for our sweet girl. For this Thursday's test, pray that her bladder is functioning as it should. That there be no nerve damage. Pray that the hemangioma goes away quickly without the laser procedure or plastic surgery option. 
Also, we are having some difficulties getting Em on an insurance because she has a "preexisting condition." The fact that we are even having a problem with this is A B S O L U T E L Y ridiculous....but I'll save my opinions on that. Just pray that we can get this worked out before she has to have surgery.

I love you all! All of the texts, calls, tweets, posts, messages, etc. mean so much to us. We could never thank you all enough for all of the encouragement! 

xoxo






Saturday, August 4, 2012

Dancing, Birthing and Occult Spinal Dysraphism from Momma's Perspective


I’ve been wanting to blog/journal/whatever since we’ve been home from the hospital, but just didn’t have the time or really know what to say. But I figured I would give a “momma’s perspective” on everything that has happened. Man, what a crazy 5 weeks (today!) it’s been. 
I really don’t know where to start, so I’ll just dive right in:

I’ll never forget the day and night that my water broke. 
The whole day before, I got to spend it with my best friend/sister-I’ve-always-wanted, the beautiful Ashley Dorough. We went to the pool, went to get our nails done (I just had to get “It’s a Girl” polish on my fingers!), then we grilled and had a dance party! 
I meant that I was getting that baby out that night!! We played the game “Dance Central” on Kinect, 
but that didn’t seem like enough! So we did some squats together and I ran around the house. I’m a nut! 
BUT!!...It worked
At 1:00 am, I was sound asleep and I felt it! MY WATER HAD BROKEN! I quickly rolled 
out of bed (much like a walrus...I was huge!) and woke Matt up. 
He shot up out of bed and asked, “Are you sure?!”

…………….

Uh yeah! I was sure!! 

There was a moment where we just stood on either side of our bed just staring at each other in silence. I think we were in shock! I’ll never forget that feeling, and I could never put it into words. So many emotions flooded my head: excitement (more like elation!), nervousness, joy, anticipation, etc.

We get to the hospital about an hour later. I couldn’t believe it was finally the time to meet my sweet Emri Kate!! But I would have to wait a little bit longer, for dearest Emri was STUBBORN!! It took me a very long time to progress. We checked into the hospital around 2 am, I got the Pitocin around 8-9 am (still at only, like, 1.5 cm), and I think I didn’t get the epidural until that afternoon (shortly after lunch). I had very painful contractions for a LONG time before I was able to get temporarily paralyzed from the waist down…and praise the Lord for that temporary paralysis!! BUT it still wasn’t time. Emri didn’t arrive on the scene until 8:55 pm. So, yes, that’s right…..all in all I was in labor for almost 20 hours! Oh how it was worth every second!
I really wish I could put into words what it felt like to hear and see her for the first time. 
Relief. 
Sheer JOY. 
Peace. 
Excitement. 
I’ll never forget it for the rest of my life! The nurse said, “Mom, look at your baby girl!” I looked down at her, threw my head back on the pillow and sobbed uncontrollably. I’m convinced there’s not a moment in your life to compare to that one second of seeing your child for the first time! The moments after that are kind of a blur. We did the normal just-had-a-baby stuff, and then I heard the nurse say, “Is that a dimple?” Of course, at the time I had no idea what she meant. I thought, "Oh..she has dimples?! Cute!" But as we all know, that’s not what she meant. After a brief explanation from the nurse of what that “dimple” was, a visit from the pediatrician and more in depth explanation from her, in comes the doctor from the NICU. After this, my memory is kind of blank.

I look back on our time in the hospital and I almost have this bitterness when thinking about it- just being really transparent. After preparing 9 months for your baby’s arrival and having so many expectations of how everything will go once she arrives, having to surrender your baby to the Neonatal Intensive Care Unit minutes after giving birth sucks (for lack of a better term)!!! I remember after one of our many visits down to the NICU for her to eat, we were back on our floor about to be in our room when I saw them wheel a new mom 
with her new baby in her arms
 into her normal-filled hospital room.

 I lost it after that. 

I got in my bed, my mom sat beside me, and I just wept. I remember saying “I don’t understand this. It’s not fair”…two sentences I will end up saying many times in the coming weeks.

I didn’t get to change my baby’s first diaper. 
I didn’t get to be there when she had her first bath. 
I didn’t get to experience the “stare at your baby all night to make sure she is breathing” the first night with her. 
I wasn’t able to be there when they stuck her a million times trying to get her IV in, leaving a million stick marks and bruises in her arms, hands and feet. 
And I wasn’t there when they decided to put the IV in her head. 

It’s very easy for me to look back on these days in the hospital and be bitter and angry, and some days I am….but then I’m reminded of all the good. Yes, Emri had to spend her firsts days in the NICU with needles and wires all over her, but Emri was perfectly healthy! We saw some very sick babies during our time in the NICU, which put things into perspective for us. She was fine…this was just a small bump in the road. 

After all, if she is here...she is perfect!

We finally got word the she could come home with us, and we were home on Tuesday night. The following days/weeks were intense to say the least. Emri cried a lot because she was so hungry (yay for nursing *sarcasm*) and I was exhausted...among other things. Things got better and I eventually started enjoying being a mom (no…I didn’t like it for a few days).

Then came our visit to Dr. Oakes at Children’s Hospital. I had been dreading this day since the appointment was made.  The appointment went well, and I made it through the whole thing with only crying once!
.....
until I got home. 
It ALL hit me at once. Since we found out Emri had this “problem,” I kind of made myself numb to all feelings surrounding it. Yes, it worried and bothered me at times, but then I would push the thoughts out of my head. Well, this day, all numbness wore off. 
I broke. 
Everything came barreling down on me in a second. I never thought about the future complications this thing could cause Emri until seeing some of the kids in the waiting room. Thinking of her possibly not being able to walk, or needing assistance with walking, broke me and I lost it. For the first time in my life, I was kind of upset with God. I sat there on my couch, face in my hands, and told God aloud that I didn’t understand…It wasn’t fair…Why us? Why, when so many of my friends just had perfectly healthy babies, why would we have to carry this burden?!

Then I got it...

It wasn’t ours to carry. That’s what He is for! He gladly carries our burdens for us. 
I just had/have to give it to him to carry for me.
If you know me, then you know I’m a bit of a control freak, so NOT controlling something, obviously, freaks me out. Being a mom in general has totally flipped my world upside down in this aspect, but throw in a spinal defect on your newborn little girl, and…well…you can imagine.

I know God is using this situation to bring Glory to his name. He’s already gotten so much!! In that moment of my breakdown, I told God: I don’t know what you’re doing, and to be honest I don’t like it. But if it brings one ounce of Glory to You…then tally-ho!

I DON’T know what he’s doing, and I DON’T understand why, but isn’t that faith? 
Though I have no idea what the heck is going on, nor do I know what the future holds for my sweet Emri, I DO have faith in my sweet Jesus. I do have my moments…I’m human. A prayer that I have to repeat continually is Mark 9:24 
“…I do believe; help me overcome my unbelief.” 
I trust God with everything I have in me to take care of our little girl, but because I’m human I have doubts…but Praise God there’s Grace!!

The future for Em is still unknown. We have an MRI scheduled for August 21. We will then know the next steps needed, if any. Lord willing, there will be no next steps! I’m believing and claiming complete healing over her Occult Spinal Dysraphism. While this is a scary situation, we do know that it could be much, much worse. And we're thankful for that.

Just a side note to end with, I could not even being to express the gratitude I have for every single one of you who have been standing beside us praying through this situation. Not a day goes by that I don’t think about you and thank God for you. All of you have made this so much easier for Matt and me.

And to all that brought us food…THANK YOU!! Cooking was the LAST thing I wanted to do the first few weeks! You all are amazing!

And finally, all of you precious, precious friends who blessed us with a crazy amount of money to help with hospital bills and such….wow….”thank you” doesn’t even scratch the surface!! Just know that every single one of you will be blessed ten-fold what you gave us!

I love you all!!! Keep praying for my beautiful, Emri Kate. She’s a fighter! What an amazing testimony she’s going to have!!