His Mercies are New Every Morning

SO much has happened since my last blog post. Baby Ezekiel was born via c-section (and I survived it without having a panic attack in the OR!), he had two surgeries in the first two weeks of his life, spent 4 weeks in the NICU, and has been growing, growing, growing! He currently weighs 12.5 lbs and is 22 inches long (and has a FULL head of hair if you haven't noticed!)

God has taught me so much in Ezekiel's short life. Spending a month in the NICU was tough, but it is amazing how God's mercies were new every morning (Lamentations 3:22-23). He gave me the strength I needed for each day. Many times the past month that I have had Ezekiel home, I will have moments when I begin to relive what all I experienced with Ezekiel that first month. I didn't get to have him in the hospital room with me after birth, I could not hold him until he was 4 weeks old, I had to leave my baby in the hands of physicians and see him come back with 3 different incisions on his tiny body, I had to leave my baby in the hospital after I was discharged, I had to exclusively pump because I was not allowed to breastfeed him until I could hold him.... the list can go on and on. Many things will trigger all the emotions surrounding the events of Ezekiel's life. One of them happened today. Yesterday, my sweet nephew, Caleb, was born and the kids and I went up to the hospital to meet him. While holding that sweet, new baby I almost burst into tears. I was reminded that I never had the chance to hold Ezekiel when he was that little. 

Then I had an epiphany.

I realized that when I begin to relive all these events and emotions, I am reliving them without the grace and mercy God had given me the day it happened. I realized just how much God had strengthened me in the moment and how detrimental my mindset would've been had He not supplied His goodness in my time of need. He is so, so good.

Hebrews 4:16 says "Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need."

In our time of need, He is there to give us mercy and grace. Great is our God and worthy of worship!

So now, when anything triggers my mind to look back on the events of Ezekiel's first couple of weeks of life (or any traumatic event for that matter) -- instead of dwelling on the emotions that surface as a result, I fix my eyes on Jesus and thank Him for the mercy and grace He gave me during those times... looking to the future knowing that no matter what hardships come my way, He will always be there with His supply of grace and mercy to meet my needs for that specific time.

And God's people said: AMEN!

A Letter to My Son on His "Birth" Day

I'm pretty sure it is literally an impossibility to get a good night's rest the night before you have a scheduled delivery. So, so, so many emotions and scenarios play tricks with your mind as adrenaline pumps through your body! With that being said, I have woken up every hour tonight thinking about what tomorrow will be like. I have to be at the hospital at 6AM. Right now it is currently 3:47AM so time is ticking away! 

I decided to share a letter I wrote to Ezekiel. I wrote the majority of it back in October, but added some things to it this morning. Here it goes:

__________________________________________________________________

My precious Ezekiel,

This is what Romans 9:20 says: "But who are you, mere human being, to talk back to God? Shall what is formed say to the One who formed it, 'Why did you make me like this?'"

PLEASE don't ever question God. I pray that you would be filled with gratitude every day of your life simply because God formed you, and He has an amazing plan and purpose for the way He has formed you. I know that it will be difficult being different, but I am praying even while you are in my womb that you always revere God as a Good & Perfect Creator - one who DOES NOT MAKE MISTAKES. I pray that these Truths resonate deep within your soul from birth... And that you let NOTHING shake you. Many, many people are praying and believing that today, to the doctor's amazement, you will be completely healed without any sign of spina bifida ever defecting your small frame. We know and believe that God is the Great Physician and this is not beyond His power or ability, BUT instead of seeking only your healing, we choose to seek God's Will. For we know that it is not just in healing that God's power is put on display, but that any kind of weakness or disability we have can be used as a tool to show how POWERFUL our God truly is! Ezekiel, it is when we boast in our infirmities and weaknesses that God's strength rests upon us for the world to see! So again, I pray that you are filled with confidence from the moment you exit my womb today: A confidence found only in the Truth of God's Word. A confidence that cannot be cut down by other people's words, actions, or the schemes of the devil. A confidence that CANNOT be shaken. 

See you in a few hours!

-Mom

The Most Comprehensive C-Section Hospital Bag Blog Post EVER.

Okay, ladies. This is a BIG one and such a relief that I have my bags packed! Only three more weeks until my scheduled c-section, and I feel like the most unprepared (yet overly-prepared) woman at the same time! After scouring Google, Pinterest, and getting advice from Facebook friends and other mamas who have been there, I finally completed packing my bag for the hospital. PLEASE tell me if you think I am missing something! ;) We moms gotta help each other out!

These are not in any kind of number order, and you may notice that some of the items in my bag are different than what other mamas are packing. I will explain in further detail why I incorporated some of my items. So, here goes nothing:

1. Photo ID, Insurance cards, small stack of cash (for vending machines/parking), gum, and a planner - Why the planner? When I met with the neonatologist (hope I'm spelling that right!), she said that bringing a planner is a very good idea for mamas with babies who will be in the NICU. This way I can easily document what happens on what days with all of his surgeries and development. AND it's super cute!

2. Phone (of which I was using to take the picture at the time), IPAD, and all necessary chargers.

3. Travel-size toiletries, chapstick (apparently it's real dry in the hospital), facial wipes, bobbie pins, ponytail holders (which were more necessary when I had my luscious long locks yesterday.. but I digress), and a stylin' headband of course!

4. This is definitely my husband's favorite part of my hospital bag. Oreos (because what mama who just birthed a baby doesn't deserve oreos?!), fruit leather, Kind fruit/nut bars, honey roasted peanuts, and a HUGE water bottle. I made sure to choose some snacks that were high in fiber to help with getting everything moving again post-surgery. I also wanted to make sure I forced myself to drink water like it was going out of style to help in recovery.

5. Because Ezekiel has an open lesion on his back, he will have to remain on his tummy until after he recovers from his back repair surgery. Needless to say, this breastfeeding mama will be pumping for that first week or so! I was gifted by my mama with a speCtra breast pump, and I am super PUMPED (heh, get it?) about using it! I also have a nursing cover, breast pads, nipple cream, storage bags, and an Itz Been timer so I can remember which side I last pumped and how long it has been since my last session.

6. Here I have a polka dot night gown with buttons for easy pumping access, a nursing tank and comfy pajama pants, a robe from Pink Blush Maternity, nursing bras, and an abdominal binder. I would not have even worried about bringing my own gowns/tanks and pants, but I will not be staying in my hospital room with my baby like most mamas. I will be frequenting the NICU (as soon as my legs can walk again!) and would rather look at least somewhat human. :)

7. Flip flops for showering, comfy slip-on slippers to walk to and from the NICU, and fuzzy socks because they are soft and comfy.

8. My own pillow that is thicker than one centimeter and a blanket that I made on Shutterfly to remind me that God will strengthen my baby!

9. (This one is a doozy. The aftermath of childbirth ain't pretty, people!) Depends Silhouette -- yes, adult diapers -- because I will be walking to and from the NICU and heard RAVE REVIEWS about these from mamas who have been there-done that, some super large granny panties, and stool softener.

10. A diffuser and essential oils because they are essential to healing and to making the hospital room I will be living in for a few days not smell so hospital-y.

11. A Christian coloring book for adults (I'm super excited about it!) and my ESV journaling Bible with markers.

12. I know most mamas are packing a separate bag for their babies, but the only thing I am bringing for Ezekiel is this book that my sweet friend bought for him. He will be staying in the NICU longer than I will be in the hospital so all of his needs will be taken care of (minus the nourishment my breastmilk will provide!) I look forward to being able to read this to him while he lays there all sweet and cute.


Yep. So that's it, folks! It's all getting so real now. I am exactly three weeks out until I get to meet the most anticipated baby of my life thus far! Whom, as of today, weighs approximately 5lb 9oz.

COME ON, JANUARY!!!

Not Your Typical Wedding Anniversary Letter

Today marks Keith's and my (mine and Keith's? Grammatical accuracy is currently not computing in my brain at the moment) 5th year wedding anniversary. 5 years. That's crazy. That means I've been married to him for 157,785,000 seconds just so you know.


Anyways, I typically will write him a letter for our anniversary and do a little craft of some sort. I wanted to make this letter public because I feel it's something more women should be saying to their husbands. Many people will think this is totally weird and out-of-the-ordinary, but I believe that's how we as Christians should live our lives. Strange and set apart for Jesus!

Here it goes:

_________________________________________________

My dearest husband,

Wow. Five years! Four kids! And more good times, hardships, and growth than I can count. You are one of the greatest blessings in my life, and I cannot imagine my life with anyone else. We have grown so much in our relationships with God since we were married - it really astounds me! He continues to be so faithful in sanctifying us- ALL glory to Him! With that said, I know we can be growing and doing so much more! Compared to most other husbands, you outshine them all when it comes to spiritually leading our family but I WANT MORE. I don't say this to demean you, I say it as ENCOURAGEMENT! I want you to know that I AM READY for you to take the leadership role of our family to the next level! I know that it will take a lot of support on my part and a lot of work on your part, but it will be SO WORTH IT! I also know the only way this will work is if we are both constantly immersing ourselves in the Word of God. I want you to make changes that you see necessary. If you want to go preaching every night for 3 hours with/without us - It's a DONE DEAL. If you want us to start honoring the Sabbath - It's a DONE DEAL. If you want to smash our television - It's a DONE DEAL. The thing I DO NOT WANT is for you to feel conviction on something and just talk about it. We both need the daily reminder of our purpose in this short life, and we need to instill this within our children starting NOW - no matter what "inconveniences" must happen as a result. Let's face it: A life not COMPLETELY surrendered to the LORD is miserable at best. Let's not feed our laziness anymore. PLEASE lead me out of this lazy and lukewarm lifestyle. Wake me up at 5AM to read and pray. I NEED YOU TO LEAD ME. Take up your rightful position as head over me and our family, and I will be sure to give you the respect and support you SO MUCH DESERVE!

I can't wait to see what God has in store for our family as we surrender to Him!
The best is yet to come!

Thanks for a wonderful 5 YEARS!

Love,
Amber

________________________________________________

There you have it. Ladies, give your husbands their rightful positions in your family. Encourage them, support them, and respect them as they begin to lead. It's amazing the freedom that comes in surrender!

The number 5 depicting some of the most memorable times of our lives :)

My Son Has a Neurosurgeon.

My son has a neurosurgeon.

That is a possibility that never, ever entered my mind. I had a miscarriage in November, but other than that, I have two extremely healthy kids. I can literally count on one hand the number of times I  have had to take either of them to the doctor (one being when we rushed Elijah to the ER only to find out all he had was a crick in his neck.. but that's a story for another day!)

God has been so gracious to me this entire pregnancy by preparing me for each step right before I need to take it. I knew from the beginning that this baby would be different in some way. I figured maybe he/she would have autism or some kind of learning disorder, but I never in a million years thought it would be something that would require him/her to have a neurosurgeon.  It is still really crazy to wrap my mind around.

With that being said, Keith and I met Ezekiel's neurosurgeon today. He was super nice and down to earth. We both like him a lot! He could not give us a whole lot of new information just because a lot of the differences/difficulties that come with Spina Bifida are so varied depending on the child. He did say he is pretty sure that Ezekiel will need to have a VP shunt put in (which is basically a catheter that runs from his brain down into his abdomen to drain spinal fluid) because his ventricles are measuring larger than normal. He reassured us that the level of his lesion is in the low lumbar/sacral region which means that his mobility should be pretty good. He said that they will do the closure surgery on his back 48-72 hours after he is born and may do the shunt at the same time if one is necessary. He was able to show us some of the MRI images and those are amazing! I have attached a few to show where his lesion is (I outlined it to make it easier to see) and also to show how his brain extends back into his neck which is called a Chiari II malformation. Dr. Shiflett said this usually does not cause problems in children, but it could cause seizures. Basically, it is all a waiting game until January when he gets here!

Dr. Shiflett noticed in the MRI (and we have seen in the ultrasounds as well) that Ezekiel constantly has his hand on his lesion. I guess he think it's some kind of play-toy or he uses it as his security blanket. I asked Dr. Shiflett if this could make his lesion worse and he said very sweetly: "Well, I don't know, but there's nothing we can do about it!" :) Good point! 

So... a few days ago, God had me read Philippians 4:12-13:

"I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through Him who gives me strength."

I absolutely love how LIVING and ACTIVE the Word of God is. I cannot tell you how many times I have read Philippians 4:13 and have had it memorized since I was a kid in VBS, but reading it in context the other day was a game-changer for me. Most of the time you see this verse on Cross Country shirts or as some kind of athletic department slogan, but what Paul is really talking about is CONTENTMENT. God has shown me that I have a major lacking in this area. Whether it be grumbling about our A/C being out for the third time this year, or standing in front of my mirror depressed because none of my clothes seem to make my big, pregnant body look attractive, or being perplexed that my unborn son has a neurosurgeon... the lesson for me to learn and that God is so sweetly and gently showing me is this:

I CAN BE CONTENT IN THE MOST MUNDANE OR DIFFICULT SITUATIONS BECAUSE I CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS ME.

When the A/C is out and it is 81 degrees in our normally 69 degrees house (don't judge!) - I CAN be content because I can do ALL things through Christ who strengthens me!

When I feel like a beached whale and none of my clothes fit like I want them to - I CAN be content because I can do ALL things through Christ who strengthens me!

and

When my unborn son is diagnosed with the most common permanently-disabling birth defect and has his own neurosurgeon - I CAN be content because I can do ALL things through Christ who strengthens me!


Whatever may be plaguing you today, whether big or small, just continue to speak this Truth to yourself: You CAN be content because you can do ALL things through Christ who strengthens you!

Nesting, Test Results, and a Family Photoshoot

My rainy today consisted of cleaning up pee all over the kitchen floor and carpets (I have 10 weeks to potty train Abigail. Yikes.) and nesting in the form of moving the crib out of Abigail's room and into our room. I can't believe I'll be full-term in 10 weeks. 10 WEEKS!!

____________________________

So.. I received an email this weekend that a new test result had shown up in my UMMC chart online. I quickly checked to see and it was, in fact, my MRI test results! I opened up the results to see nothing but a whole bunch of medical jargon that meant absolutely nothing to me. There were literally like 2-3 words that I understood: such as cleft palate. I think I will mention to the hospital that they should have a TRANSLATE button at the bottom of all medical test results/diagnosis in order for this important information to be quickly and easily translated into terms we lay-people can understand. :) 

Let's see how your medical jargon translator works:

"There is a mild prominence of the supratentorial ventricular system with trans-atrial measurement on left side measuring 1.3 cm and on the right side measuring 1.2 cm. No transpendymal flow of CSF is noted. There appears to be dysgenesis of corpus callosum with evidence of colpocephaly. Posterior fossa is seen with evidence of warp around cerebellum. There is herniation of the cerebellar tonsils through the foramen magnum. There is no evidence of intracranial hemorrhage. No acute infarct is seen. No encephaloceles are noted. Nuchal fold thickness is unremarkable. Globes are intact with normally located senses. No cleft palate/cleft lip is seen with normal appearing bilateral nostrils. There is a large spinal dysraphic defect involving lower lumbar and upper sacral spine with defect measuring 21.3 mm in craniocaudad dimension and 11.7-mm in maxium transverse dimension. Well-circumscribed T2 hyperintense collection is seen overlying the spinal dysraphic defect with linear soft tissue density likely representing a nerve root noted along the superior aspect of the defect. Conus medullaris appears to be normal. IMPRESSION: Mild ventriculomegaly with dysgensis of corpus callosum and small posterior fossa with herniation of the cerebellar tonsils. Spinal dysraphic defect involving lower lumbar and upper sacral spine with evidence of meningomyeloele which measures 2.1 cm in carniocaudad dimension. Findings are consistent with diagnosis of Arnold-Chiari II malformation."

I've learned pretty quickly in having a child with a medical defect that GOOGLE IS YOUR WORST ENEMY but online community groups, specifically for mothers of children with a certain disability or medical issue, are INVALUABLE. So I copied and pasted the jargon on a few social media sites and within minutes I received feedback like: 

"In my opinion, it says all normal for a baby with SB!! Big takeaways: lower lumbar/sacral lesion (this is good!). slight signs of hydro (normal for SB). Arnold-Chiari II malformation (normal for SB)"

"A very typical case of Spina bifida with nothing at all alarming or out of the ordinary."

"Sound pretty normal and actually pretty good for SB."

My Maternal/Fetal Medicine doctor had mentioned during the ultrasounds that he could not find the corpus callosum (part of the brain that sends signals from left to right). They agreed in the MRI that Ezekiel is missing all or some parts of this part of his brain. I have heard from other parents of children with SB that this could be completely asymptomatic or could cause problems with vision, hearing, motor skills, swallowing, gaining weight, etc. That is what is so crazy about Spina bifida... no two children (even with the exact same diagnosis) have the same outward symptoms when born! Hence why they call SB the "Snowflake Defect." ... And hence why I have never felt SO KNOWLEDGEABLE yet SO UNPREPARED for something in my entire life!
But my feeling of unpreparedness is actually a blessing because it reminds me that everything is out of my control. It helps me surrender EVERYTHING about this child to God! Ezekiel is HIS CHILD anyway!

______________________

We went to Texas this weekend and had a family photo shoot in our "God Doesn't Make Mistakes" shirts. I feel so blessed to have such a supportive and encouraging family and group of friends in all of this! Don't know what I would do without any of you!

Shirts are still available to order through November 8th! www.booster.com/Goddoesntmakemistakes

MRI apparently stands for "Miserable, Restrictive, and Irritating"

As many of you know Ezekiel had his fetal MRI yesterday, which means this mama was stuck in the science fiction-like human scanner for 25 minutes. If you've never had an MRI, especially having an MRI while 25 weeks pregnant, you're probably thinking: "25 minutes. That's not a big deal. Come on, Amber. Stop exaggerating with the whole 'Miserable, Restrictive, and Irritating' title."

No, I am for real.

Miserable - The small cot that they slide you into the white tube on had about an inch worth of padding, which would've been fine but......
If you've never been pregnant, let me fill you in on a little something: LAYING ON YOUR BACK IS THE MOST UNCOMFORTABLE POSITION EVER (well, I suppose flat on your stomach could be worse... so maybe I should look at the bright side!)

Restrictive - They literally strap you to the cot! I could not move my arms at all, and was kind of scared to move anything really. Before you have the MRI, you have to sign this super long sheet of paper that asks whether or not you've ever had any type of metal in your body (from eye penile--whatever THAT is-- to tattooed eye make-up). I was literally praying while in the machine that I did not have some foreign metal in my body that I was unaware of. I could just picture something ripping out of my body mid-MRI and magnetizing to the inside of the tube. Over-dramatic much?

Irritating - I was very thankful they gave me earphones because that machine sounds like it's about to take off or blow up. Not only that, but there is nothing to look at while inside. I saw where someone or something scraped the paint off on the inside and kept staring at it for 25 minutes thinking... "Surely, it's been at least 5 minutes right?" I think I will invent some sort of plastic television screen that wouldn't interfere with the scan to place on the inside or some kind of TV goggles to let people watch a movie while they are laying their restricted and bored for half an hour.

Okay, so that was really over-dramatic. I have my moments. It really wasn't that bad. I had a few moments where my anxiety was about to get the best of me, but I just started quoting Scripture and breathing deep. God was good to me. We will find out the results of the MRI in the next week or so. I will meet with the neurosurgeon, Dr. Shiflett, on November 9th.

I met with the doctor at the Maternal/Fetal Medicine department at UMMC before going over to have my MRI. They did another sonogram to check him out and said he is developing perfectly. He weighs approximately 1lb 15oz so far and right on track. They mentioned that he was breech but I'm pretty sure after that MRI he had flipped because he was moving like a mad man in that machine! (Hopefully the technicians were able to get the images they need with a squirm-er like him!)

I guess an upside to having a baby with a medical defect is you get lots and lots of pictures! :)