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!!

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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!

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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! :)

Why does Spina Bifida Awareness matter?

Spina Bifida Awareness Fundraiser!

October is spina bifida awareness month! I cannot even begin to explain to you how much I have learned about it in the past week. I created a t-shirt design to sell to raise money for baby Ezekiel, but most importantly to raise awareness about this birth defect. I want to shout it from the rooftops how strong and beautiful every person born with spina bifida is... because GOD DOESN'T MAKE MISTAKES! It even has a little shout out to Ezekiel on the back. Did you catch it? God Will Strengthen!!!!

Help spread the word like wildfire! :) Campaign ends October 5!

https://www.booster.com/god-doesnt-make-mistakes

Front:

Back:

Never Tell a Secret to a Three Year Old!

Okay, so Keith and I had already decided this pregnancy that we would not find out the sex of the baby. Keith never wanted to find out with any of ours, but I was persistent, and then we came to a compromise. I told him once we had a boy and a girl that we would not find out what the next baby would be. Well, when we found out that this baby had spina bifida, that changed for me. I felt like it would be really helpful for me to go ahead and find out since we would be having so many ultrasounds and so I could better pray for him/her. Keith still wanted to be left in the dark so I found out and he did not. Fast forward to yesterday afternoon. For some brilliant reason, I spilled the beans to our three year old, Elijah. At dinner last night when I was telling Keith that Elijah had prayed for his baby brother/sister and the hole in his/her back, Elijah promptly and very confidently said, "No. Baby _________ (insert sex of the baby)!!!" Keith got a smirk on his face and then admitted that he knew. Apparently he had seen some certain reproductive organs when Dr. Bofill was examining the baby on Thursday. Moral of the story: Never look at the ultrasound and NEVER tell your three year old if you want to keep the sex of your baby a surprise!

If you don't want to be surprised come January, just take a look at this video: BOY or GIRL?

Hey Sweet Baby, It's Your Mom Again:

Guess what? Today I got to see you on TV not once but TWICE! Mommy has been to the doctor three times in the past two days to learn more about you and how you are growing. We found out some more information about you today, but in October we will have more answers. Your doctors are very sound and know what they are talking about. They are going to do an MRI to check you out even more on October 15. I first saw Dr. Perry and then he referred me to Dr. Bofill at UMMC. He took a good look at your brain and noticed that he could not find some parts that should be there. He said you may have a disgenesis of your corpus callosum which could signify that the part of your brain that sends signals from the left to right is missing. We will know more in October when they do the MRI though. He also measured the fluid in your brain and said that it was measuring at 11. He said it should never be over 10 but that as long as it did not get up to 15, we should not be too concerned. This is normal in babies with spina bifida. It just means that you will need to get a shunt put in your brain to drain any excess fluid that collects there. He also measured the opening of your spine and where the neural elements and tissue bulge out. He said it is about 6 vertebrae long and is very low on your back about equal to where your hip bones are. The lower, the better, he says!

I write all this so that I can remember what all went on these past two days and to let you know that you are being taken care of. However, I want to remind you and myself that our hope is not in the hands of these physicians, however skilled and intelligent they may be! Here is mommy's journal entry from September 2, 2015 (God has seriously been speaking to me things prior to when I need them and then bringing them up for me to read days/weeks later. He is so good!):

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2 Chronicles 16:7b-9,12 
"At that time Hanani the seer came to Asa king of Judah and said to him, 'Because you relied on the King of Aram and not on the Lord your God, the army of the King of Aram has escaped from your hand. Were not the Cushites and Libyans a mighty army with great numbers of chariots and horsemen? Yet when you relied on the Lord, He delivered them into your hand. For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to Him. You have done a foolish thing, and from now on you will be at war.' In the thirty-ninth year of his reign Asa was diseased in his feet, and his disease became severe. Yet even in his disease he did not seek the Lord, but sought help from physicians."

Lord, in illness, in peace, in times of hardship, in times of plenty:

MAY I ALWAYS BE FULLY COMMITTED TO YOU. Completely relying on You!

I pray that where this baby in my womb is concerned that I would seek YOUR help and my reliance would not be on physicians. I believe physicians have a place and I praise You for them, but help me not to put them on the pedestal where only You belong. 

Thank You for what You have done for me, God. I know the strength of my enemies and any illness is weakness in light of You being on my side.

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So there you have it, sweet baby. You are in exactly the spot that God created you to be, and as I said in my previous letter, I am HONORED to be your mom! I read today in a news article from the beginning of this year that 68% of babies with spina bifida are aborted my their moms. I feel SO privileged that God has given you to me. You are a special gift with a special calling, and I cannot wait to see you fulfill it!

Honored and humbled beyond measure,

Your Mom


Here are some pictures from today:

21 weeks pregnant!

 

Our first stop was Dr. Perry's office:

 Then daddy got a little sleepy waiting in Dr. Bofill's office:

Here you are, my little  mover and shaker!

To My Sweet Baby:

Today was the day of my ultrasound. Before I share my letter I wrote to my child after my doctor's appointment today, I will share some journal entries I have written in the past couple of weeks about him/her:

September 11, 2015
5 more days until my sonogram.

No matter what the results are, I have to remind myself: GOD LOVES ME. Nothing He does is out of hatred or meanness. EVERYTHING He does is for my ultimate good.

No matter what the results are, the child in my womb is a BLESSING, not a CURSE.

Satan, I will not question God's character: His goodness, love, and faithfulness.
I WILL NOT.

God continually puts on my heart to pray that this baby would be fearless. I know that he/she will be - whatever that means.

Then I wrote the lyrics to this song:

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September 16, 2015 5:30AM

Well, today is the day. Today I get to see my baby and the doctor will diagnose whether or not there is something wrong.... No, it won't be something "wrong" because God is the One forming him/her and HE DOES NOT MAKE MISTAKES. Sure, He never desired defects to exist, but now they do because of sin. However, He allows them and uses them for MY greater good: personal growth and sanctification. I go to this appointment with much anticipation, not fearful anticipation, but EXPECTANT anticipation. I am excited to see what God has in store for us and outr gift that He has given us. 

Do I want Him to give me a healthy baby like the first two? OF COURSE.

Do I believe that He could/would? OF COURSE.

But, ultimately, I surrender myself and my fleshly desires to desire and want what He HAS for me.

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September 16, 2015 6:55PM

My sweet baby, today we saw you on a big TV screen. The nurse began to look at you and when she got to your brain and spine, she called for the doctor. We had been told that some of mommy's hormones were not what they should be and that you may have a neural tube defect. Well, you do. Dr. Wolfe confirmed today that you have spina bifida. Spina bifida means that you have an opening in your spine. Dr. Wolfe said he was very optimistic that with a c-section and surgery you will be just fine! We will get to see you again tomorrow when mommy goes to a special doctor that will help you even more. 

I didn't cry when the doctors told us about your condition, and I still haven't. I feel great peace. I was reminded today of the first gift you received. Your sweet Aunt Anna gave it to me when you had only been in mommy's belly for a few weeks:

You truly are fearfully and wonderfully made! God has made you and He does not make mistakes. I feel honored to be your mom and can't wait to hold you and take care of you. I pray that you stay safe and cozy where you are and that the Holy Spirit ministers to you even while in mommy's tummy.

I found where I had written in my Bible on July 2, 2015 next to Psalm 22:9-11 ... "Prayer for Baby Dalton #3"

Psalm 22:9-11 says "Yet you brought me out of the womb, you made me trust in you even at my mother's breast. From birth I was cast upon you, from my mother's womb you have been my God. Do not be far from me, for trouble is near and there is no one to help."

God has prepared me for you. You are such a gift. See you tomorrow on TV!

-Your mom

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I will update on what our specialist says in the morning. For now, I leave you with one more song that has been in my spirit: