Story

Let's start at the very beginning, a very good place to start...

This blog would simply not be complete without a full background of our little family, and specifically our Amelia bug. She's our little anomaly, hence the title of this blog, and I will be sharing frequent updates on what's going on with her, a few tidbits on the most creative 4 year old in existence (in my humble opinion), and how we are trusting in Jesus as our strength to make it through the roller coaster that is special needs parenting.

So, first off, here's my little family:

Aren't they just precious? Am I biased??? Probably. And rightly so!

Natalie is the little pink princess who loves all things pink. And princess. Seriously, her alter ego is a made up character called Princess Leed. She dresses as her on a regular basis and do not even try to call her Natalie if she is in a Princess Leed dress. She must be called by her proper name. 

Matt is my guitar loving, worship leading, engineer minded husband who is a selfless servant to his family on a daily basis. Seriously. We could not do this without him. God blessed me greatly when he gave me Matt.

Amelia is the cutie in the glasses very unsure of why mama is taking the millionth picture in a row (I mean, can we ever get a good picture of kids on the FIRST try??). She's a take-it-at-her-own-pace, easy laid-back, and joyful little girl. God has blessed us through this little girl more than we ever thought possible.

Okay, so there's the fam! Now onto the background:

Pregnancy and labor/delivery:

     My pregnancy was completely normal with Amelia. She had a perfect 20 week ultrasound where the tech told us she was probably a girl. Matt dubbed her Amelia right then and there while I was a bit more tentative, wondering the likelihood that a little boy was hanging out in there (when she was born the first thing I did was clarify, "SHE'S A GIRL RIGHT??"). Really nothing notable at all about the pregnancy. 

Labor and delivery was something that made me quite nervous. Natalie's birth wasn't the best experience in the world (to put it mildly). 28 hours of labor, 3 hours of pushing, a vacuum to her head to get her out, an OR trip for me to stop a major bleed, a broken tailbone, and a blood transfusion. Sounds fun? Why did I sign up for that again?? By all intents and purposes, Natalie actually had more risk factors for Amelia's symptoms then Amelia did! Labor with Amelia was not short (20 hours) but SHORTER than Natalie's THANK.THE.LORD. And I only had to push for about 45 minutes before she came out, screaming her head off. And then she proceeded to scream for 3 months. HA! 

Newborn Stage:

Children's Hospital Stay #1: In reality she did scream for the first day and a half after she was born but she was sleeping peacefully by the time we took her home on Thanksgiving. She was doing great, eating well (or so we thought), and sleeping A LOT. Natalie also slept a lot as a newborn (but that may have been the painkillers fault now that I look in hindsight.....) so we weren't too concerned. By the time she was 4 days old we noticed that the amount of diapers she was producing had diminished, she was getting harder to wake up for feedings, and we were starting to get nervous. We took her in for her already scheduled doctor's appt and started to get more alarmed when the nurse confirmed our fears that the amount of diapers she'd had was not sufficient. Panic started to take root when the nurse took her temp, looked at the thermometer, made a face, and took it again. Matt and I glanced at each other. "Is something wrong?" I asked. The nurse told me there must be something wrong with the thermometer. She went to go get another. Matt and I sat in silence. She came back and took her temp with a different thermometer. Once again she paused looking at the screen. She told us she needed to go get the doctor because Amelia's temperature was only 96 degrees. Being the well-researched mama I am (for better or worse 😂) I knew that if a baby's temp dipped below 97.4 in the first 3 months of life they were usually sent to the hospital. Matt and I both knew it. We were going straight to the emergency department. We called my family and told them what was going on, I sobbed the whole way there. 2 hours later we were pacing the hallway outside a room in the ED where our 4 day old was getting a lumbar puncture. She'd already had blood and urine taken. We'd been told she would definitely be admitted, given broad spectrum antibiotics and anti-virals, and be observed for the next 48 hours while waiting for various tests to come back and tell us what crazy illness had ravaged our poor newborn. (Well, that's what my thought was anyway). After 48 hours, many tears, tests that all came back clear (thank you God!), and an Amelia who was eating much better and perking up, we went home with a diagnosis of hypothermia and hypoglycemia of an unknown cause. We were slightly more traumatized then when we'd gone in but had learned how to trust in God's goodness and supernatural peace in times of trial. We rested on Psalm 27:14  in a way we had never done before- Wait for the LORD; be strong, and let your heart take courage; wait for the LORD! I had been holding onto that verse before Amelia was born (did I mention she was 8 days late??)  so I had it memorized. As terrified as I was in that hospital room, not knowing what was wrong with my child and therefore not knowing what would happen to her  (would she perk up? would she go further down into illness?) I was comforted by God's goodness, His presence, His sovereignty, and His comfort for those who are hurting. It was the first of MANY times I would have to allow Him to comfort me because I was unable to get comfort anywhere else. A lesson I NEEDED to learn.

Noticing things:

   I should mention now that one of the first things Matt and I noticed about Amelia when she was born was that her eyes rolled around in their sockets like a whirligig. She was not able to focus on anything for longer than a second and she was not making any eye contact at all. We thought it was just a weird newborn quirk, in fact the crying is what brought to my mind the possibility that something wasn't right when she was first born. But after her hospital stay, we brought her back to her pediatrician for a weight check and she noticed that Amelia was constantly turning her head to the same side. She sent us for an x-ray (which was clear) and then to physical therapy. Having ruled out anything skeletal, her first visit to a physical therapist was when she was 3 weeks old. The physical therapist told me she had a condition called Torticollis, that it's pretty common, and it would take months to heal but it would almost definitely get better eventually with lots of therapy. Then she brought up the eyes. And my heart dropped. Someone else noticed what I had started to worry about. When she was 5 weeks old we brought her to see an ophthalmologist who reassured us it was just delayed vision, "don't worry, it'll probably be fixed by the time she's 3 months old, come back then." I wasn't completely reassured, though I tried to tell myself I was. In the back of my mind, I knew. We had a complex little child. She was NOTHING like her big sister.  She wasn't tolerating tummy time, wasn't holding up her head, wasn't gaining any kind of control, and was spitting up CONSTANTLY. 

Children's Hospital Stay #2: When Amelia was 6 weeks old, the week of New Years, I was holding Amelia and she started twitching, her arms and legs started shaking and her head jerked back. I thought for sure it was a seizure. It was 6 pm so I called the on call and we were sent right back to the Emergency Department. We were whisked in past the waiting room, me with some major panic associated with our previous stay. It was January so the ER was FULL. I mean, the waiting room bursting to the seams, FULL. The actual hospital having no beds, FULL. I spent the night in the ER with my 6 week old and countless other kids with RSV and stomach bugs. The lady taking care of her dehydrated grandson next to us pooed all over the floor around 4 am at which point I requested a switch. By God's grace they had a clean solitary bay available. I was sure my 6 week old, who I was now certain was NOT having seizures, was going to catch something else from this horrible experience. We were admitted, given the first available bed on one of the pediatric neurology floors, and she was observed and tested once again. This time my parents were not able to babysit Natalie so I stayed at the hospital alone as Matt had to be home with Natalie. We had some good friends from our church babysit the first evening in the ED and the second day in the hospital so Matt could be with me as much as possible but he was gone more than he was with me. This was another time where I had to rely solely on God and know that HIS comfort is better and more sufficient than any other comfort. I was carried through that hospital stay with a peace I can only give credit to God for. I took care of Amelia through both nights and through the waiting of her first MRI with God's grace and His peace. We were sent home with a clear MRI (praise the LORD!) and a diagnosis of Sandifer's Syndrome/Acid Reflux. Yup. The twitching was the little stinker's way of getting out a burp. This whole kerfuffle was due to gas. 😅

Sidenote: Prior to this hospital stay I had been falling down into a tunnel of postpartum depression. Worrying incessantly about Amelia, going to the worst case scenario (she's special needs, she'll never walk, never talk, might die young, etc.) and I just WISHED I could find out more, have someone reassure me of SOMETHING. Both hospital stays had been God's way of giving peace to my heart. The MRI and testing of a whole host of illnesses gave me reassurance about what Amelia did NOT have and got me through those first few months of uncertainty. The second hospital stay even reassured my fears that the first hospital stay hadn't caused the problems. (Did I freeze her to the point of brain damage? Was she so hungry it caused brain damage?) The clear MRI and negative test results for illnesses were reassurance that what was going on with Amelia was not due to any error on my part, and most likely wasn't even due to any prenatal illnesses! God is good even when immediate circumstances seem hopeless, confusing, and terrifying (as both hospital stays had been). The bible verse that has been close to my heart through all of this is Philippians 4:6-7 - Do not be anxious about anything, but in everything, by prayer and supplication, with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.

What We've Discovered Since: I will go into much less detail from here on out, I will just give an overview (thank goodness right?? She's finally almost done with this long-winded intro!!!) Since then, Amelia has presented with low muscle tone, still not sitting independently at 19 months old, her eyes did not straighten out as the first ophthalmologist suspected. We are not certain of what she can see and process just that we know she sees like a newborn. She struggles with the torticollis but it has gotten much better. She gets 3 physical therapy sessions, occupational therapy, vision therapy, special instruction (special education teacher), every week and just qualified for speech/feeding therapy. She has had another clear MRI, a clean chromosomal microarray (meaning all her chromosomes are present and not duplicated), a normal Electroretinagram (checked her retinas to make sure they were functioning normally), and a clear Whole Exome Sequencing test (meaning no known genes have a mutation). She has been seen by a neurologist, a neurogeneticist, a regular geneticist, and a gastrointestinal specialist. She is being sent BACK to GI for continued spitting up/constipation issues and is also being regularly followed by ophthalmology. Lastly, she will be starting with a developmental pediatrician in October (it seriously takes forever to get into specialist's offices). And no one has a clue what's causing any of it. 

EXCEPT GOD. 

One of my biggest comforts in all of this (besides my assurance of an eternity with God in heaven through Christ) comes from the fact that God knows. He created her, He formed her in my womb, He knows, of course He knows! And in His time and if it's His will He will tell us what's going on. In the meantime, this is the biggest object lesson for trusting when we can't see the way that Matt and I have ever had to endure. We trust Him that HE IS ABLE and that His plans might be so beyond what we can fathom and imagine so we just need to trust Him that He is good. Whatever He does with Amelia, whether He heals her physically or not, it's for His glory and to show His goodness. Our song through all of this is Mercy Me's Even If : 

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, and I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

You've been faithful, 

You've been good

All of my days

Jesus, I will cling to You

Come what may

‘Cause I know You're able

I know You can

I have sobbed to this song, rejoiced to this song, screamed at God through this song because it speaks to the fact that even though we are Christians and have placed our faith and trust solely in Christ, it does not mean God will take away every hardship. The false gospel being preached in many churches today is that if you believe enough and you hope enough then God will pave a perfect, successful life for you. But that's simply not the case. (John 16:33 - In this world you will have trouble, but take heart! I have overcome the world.) He promises eternity in heaven with him for those who trust Jesus, and He promises His blessing and His grace as we follow Him along the way. Romans 8:28 - And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

IN ALL THINGS. Even if Amelia were to never walk, never talk, and die young (as my worst case scenario brain plagued over for weeks on end when she was a newborn) God WILL work it out for our good and His glory. We trust that. And we have peace that overcomes the fear that still grips me when worry takes over my thoughts. 

2 Corinthians 1: 3-4 : Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God