Category: arthrogryposis

by jaimelbrown ♥ 0 Leave a Comment

One of our long term goals was to get Amelia comfortably on her back. It doesn’t sound like much, but for Amelia, it is a huge feat. The doctors thought this would be possible in several months, hopefully by her 6 month birthday.

She did it today, on her one month birthday. Amelia Jane is as happy as can be laying on her back looking up to the heavens for the first time.
Oh, my sweet, amazing, miracle baby girl, how far the Lord has brought us in one month.
 
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3:20-21
by jaimelbrown ♥ 0 Leave a Comment

Our miracle girl continues to amaze us all and on Thursday, we were discharged from the hospital! We are thrilled to be home and doing life with all four of our sweet girls.

I will admit, there were days early in this journey that I dreaded coming home. The day the NICU nurses broke both of her arms within 6 hours, I vowed to never leave the confines of the hospital.  If they broke her twice in the safest part of one of the best children’s hospitals in the world within a day, how could I ever take her home and live a normal life?  I decided though my tears and heartbreak that day that we would just live in our little cubical of the NICU forever. We would have to change the curtains, obviously, but I would love her with my whole heart and take care of her from there during the day and let the night nurses take a shift while I slept a few hours each night.

We juggled our family between home and Levine Children’s Hospital for 24 days, which seemed like a long time to us, but it is truly a miracle that it was only that long. Many, many families, spend much longer, with much worse outcomes there. Nate and I took turns between the hospital and home so we were each spending time with the big girls and our new tiny. We had incredible help from family and friends.  Averie, Austin Kate and Atalie were amazingly resilient and understanding.

Eventually, it became overwhelmingly exhausting and I realized I was ready to move out of our NICU cubical and bring her home right around the same time the doctors were wrapping up all they needed to do with her in the hospital. All of her therapies can be done in home and her follow-ups can be done in office. God was preparing my heart for the transition of bringing her home.

Amelia is a very healthy baby except for her arthrogryposis and she did remarkably well recovering from her G-tube surgery. She is taking her day feeds about half by bottle and what she doesn’t finish, we tube and then she is on continuous G-tube drip overnight.  So once she had been cleared by the surgeon, and neonatologists, we scheduled all of her in-home therapies and her absurd amount of follow-up appointments with all of her specialists, we were discharged!

Honestly, it was very bittersweet when we pulled away from the hospital. I basically lived there for a month.  In a way, I felt like I was on a mission trip there for almost 4 weeks since we were telling our story and sharing the Gospel with anyone that would listen. They gave my baby a future, they gave us hope. We made amazing friends there, that we will stay in touch with forever. I learned so much from the nurses, that I feel like I am halfway to my nursing degree! We were so excited to be bringing our Amelia home that we were giggling as we were walking in that morning, but I also cried as I hugged all of my nurse and doctor friends goodbye.

The hardest part of leaving was actually getting her in the car.  Sweet Amelia Jane is so unique that she had to have a very special car bed made for her called the Hope Car Bed. The hospital staff worked tirelessly to have the cost of it covered completely by grants, praise the Lord! Even though it is the most custom made car bed on the market for special needs children, Amelia is so special that it still almost didn’t work for her. It took 6 adults about an hour and lots of tears on her part and mine to figure out how to get her safely and comfortably in the car bed. Please pray that the car bed situation grows easier each time we travel.

Now we have started settling into life at home and it is wonderful. She has several in home therapies each week as well as many doctors appointments this week and in the coming weeks.  Her sisters are totally in love with her and we are showering her with an abundance of love and snuggles which is the best medicine.

We are simply taking one day at a time, loving Amelia with our whole hearts, trusting God for her future, and thanking Him for trusting us with her.

by jaimelbrown ♥ 0 Leave a Comment

Amelia’s first surgery is scheduled for early tomorrow morning.  I am not looking forward to sending my baby back into an operating room, but I know it will make her better.

Her little body is working so hard to get better and straighter that she is too exhausted to eat enough at feedings. Those sweet cheeks look chubby, but she is only 6lbs 3oz, still not back up to birth weight at 16 days and she needs lots of calories for her brave little body to do all we are asking it to do.

They will go in tomorrow and insert a gastric feeding tube so that whatever nutrition she doesn’t take by bottle at feedings can be given in her tube and then she will also have constant feedings during the night.

Please pray specifically for her positioning for surgery as they need to get her as close to on her back as possible to safely intubate her. Remember simply lifting her arm to take her temperature, broke it, so this is complicated.

Pray that the tube goes in well and that she transitions to her new way of getting nutrition easily so she can thrive and continue to amaze us.

As always, pray that God is glorified in this.

Today has been really hard as we listened to the possible complications. Tomorrow will be even harder.

She’s God’s first. I can’t go in the operating room with her tomorrow, but He can and He will.

by jaimelbrown ♥ 0 Leave a Comment
I’m sure you’ve noticed that we haven’t posted a full body picture of our precious Amelia Jane publicly yet. We have shared these pictures with close friends and family and obviously those who have met her in person have seen all of her complexity.

I haven’t been ready to share these pictures before now because I want to protect her. I want to protect her with everything in me from becoming a spectacle.

We knew before she was born that she would have many anomalies. We were called late Monday the 16th, and simply told that she had been born, was stable and they had taken her to x-ray. We had the most restless night of our lives until the next morning when we could finally meet her. No one prepared us for what we were about to see.

Before I became a mom 14 years ago, I wondered what emotions I would feel when I met my baby for the first time. I loved her from the moment I knew she was growing inside of me, but when the doctor placed a crying, red-headed Averie Elizabeth into my scared, unsure arms, instant, pure, unexpected, life changing love happened. It happened again with Austin Kathleen 3 years after that and with Atalie Layton 7 years after that.

The exact same instant, pure, unexpected, life changing love happened on Tuesday the 17th when I laid  my eyes on Amelia Jane even though she did not grow inside my womb and even though she looked nothing like I expected.

I knew she would be beautiful. I knew I would love her. I did not expect her legs to be wrapped around the back of her body and touching her head. But she was still beautiful and I still loved her and I was still thrilled about the opportunity to raise her.

Her sisters and grandparents and aunts and uncles and our friends all wanted to see pictures.

So I sent them pictures of her precious and perfect face and gorgeous hair.

I sent them the pretty.  I needed to process the rest.

The doctors had never seen anything like her. I couldn’t fathom how her little body could even grow in the shape that was before my eyes. I was scared of what people would say about her, think about her. Would they love her like I love her?

One by one they started seeing her in person, grandparents, sisters, aunts, uncles, closest friends, and they each fell instantly in love with her too. They stood by her crib, took a moment to understand the complexity of her nature and adored her. I was both ashamed for doubting that they would do anything less and more assured of our future together in raising her with each visitor.

Our precious, brave, sweet, Amelia Jane has come so incredibly far since the day we met her two weeks ago. I have realized that by keeping these first pictures of her to ourselves we are keeping one of the most beautiful and most important parts of her story, the proof of God’s healing power to ourselves. The power of prayer is real. You have earnestly prayed for her healing, so as hard as it is for me to post these, you deserve to see the proof of those prayers.

This is Amelia on 9/18 the day we arrived in Charlotte.
This is Amelia on 9/23 at one week old.
And this is Amelia yesterday, 9/30 at two weeks old.

God is good. So immeasurably good. At birth, I was convinced that they would have to remove her tiny legs from her body for her to grow. I didn’t think she could be as straightened out at one year as she was at one week and at two weeks she is even more impressively straight.

Faith, Jaime. God hasn’t brought us this far to leave us now.

The road ahead seems very long and narrow at times.

Then I look at that first picture. Faith.

He can do anything.

He may heal her completely. He has already done so much in two weeks.  If he does, I will praise His Holy name. The doctors tell us there is no chance of that. They say she won’t ever stand, walk or use her arms or hands. They also are shocked every time they pull back her blankets and see how far she has come from the day before, so I remind them who the Ultimate Healer is. We have shared the Gospel with more people in two weeks than we ever have in our whole lives and we are in ministry, so if the Lord needs to leave her broken for His Kingdom purpose, I will still praise His Holy name because I have seen what a magnificent testimony my tiny broken vessel is for Him.

Thank you for praying. Thank you for loving. Thank you for sharing this story for Christ’s glory.  God has orchestrated each detail of it so beautifully that even the parts that hurt are worth it. We are excited about how far He has brought us and excited about where He is taking us, wherever that may be.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

by jaimelbrown ♥ 0 Leave a Comment

You have joined us from near and far on this journey to give Amelia the life she deserves and been faithful to pray and love us well, so I’ve wanted to update on how she is doing and how you can specifically pray for her, but there just hasn’t been much new information.

It has been a slow process of the doctors getting to know her and figure out her extreme specialness and come up with a good plan. We are still waiting on some tests and evaluations but so far it seems to everyone like she has extreme Amyoplasia, the most common form of Arthogyposis.  As simply as I can explain her diagnosis and prognosis, her arms and legs have very little to no muscle in them at all so they have never moved in or outside the womb and as a result both arms and both legs are constricted and extremely displaced. The doctors do not believe that she will ever be able to move any of her four extremities but are hopeful that with extensive physical therapy and possible eventual surgery, that she will be able to comfortably sit in a wheelchair and enjoy a happy life. She is a perfectly healthy baby except for her 4 limbs and the doctors have no reason to think that will change. She is cognitively normal, her organs and stats are perfect, her 4 limbs are just very abnormal.

The scariest issue for us is her fragility.  We were prepared to deal with her precious and unusual frame, but Friday we learned that she is also incredibly fragile when one of her baby arms was broken during a simple procedure to put a new IV in her arm and then her other arm was broken later that day by a nurse simply lifting her arm to take her temperature.

They are starting to talk about sending us home because she is so healthy and I am basically here 14 hours a day totally taking care of her without help from the nurses. So we are trying to prepare for life at home with a baby with limbs as fragile as glass, who can not wear clothes or be strapped into a traditional carseat because the bones in her arms and legs are the thickness of toothpicks and so deformed. It’s honestly not as overwhelming as you would think. If you told me 3 weeks ago that this would be my life today, I would hyperventilate, but a funny thing happens when God holds you in the palm of His hand. When He calls you to it, He takes care of it. You know that peace that passes all understanding? It’s a real thing.

Don’t get me wrong. I’ve had some freak out moments. I’m human. I want to make sure that I am not going to ruin Averie, Austin Kate and Atalie’s life. I want to make sure that Amelia isn’t going to freeze to death since no one can tell me how to put clothes on her. I don’t know how her car bed is going to fit into our car that wasn’t even manufactured in this century. But those brief moments of fear pass when I think about the thousands of tiny miracles that have brought us to this place. God is in the details. He’s already there. He’s got it all worked out.

I prayed boldly before for her birth for her to be healed from all of the things that make her less than whole medically. I prayed that she would come out kicking and screaming, thrashing around with both arms and legs and that we would bring her home the next day. I promised that we would praise God’s marvelous name for miraculous healing. But I knew in my heart of discernment that His healing wasn’t coming.  I knew in my soul that my Amelia was going to be more useful to God and His Kingdom like this, and I’m ok with that. It’s a hard place to be as a Mommy, to say “OK God. I know she’s yours first and you know what’s best so if you need to leave my baby broken to use her and to use us, let’s do it. You’re just gonna have to carry me through it.”

If God had healed her, like I begged Him to, we would have praised Him and brought her home and gone back to our easy lives.

But this is so much better.

Instead, she is our rubber cement to God for the rest of our lives! I will never, ever be able to get far from His mercy and grace and guidance because I can not get through a day or an hour without Him.

This hard stuff, this messy stuff, this scary stuff, it’s good.

A lot of people don’t understand it. Some people think we are crazy. A few people have said hurtful things. We are tired, my house is a mess, we don’t know how we are going to pay for all of it and we don’t know what the future holds. That’s fine. We have an audience of One and He holds the future and we know we are doing what He has called us to do. We have shared Amelia’s story, our story and most importantly the GOSPEL – because, please, I never want anyone to think this is about us or even really about Amelia, this is all about CHRIST –  with more people over the last 2 weeks than we ever have. We will never know the number of people who have been brought to Jesus or closer to Jesus because of this amazing baby girl and God’s sweet mercy and amazing grace until we get to heaven and Jesus shows us Himself. That makes falling into bed exhausted every night for the rest of my life and this hard stuff worth it.

As I look over into her crib at this little pink bundle of love that by the world’s standards is broken, and I think about the journey to get her here, I know that she is beyond perfect. This is perfect. She is exactly what we needed.  I think she is exactly what we all needed and God knew that. His ways are not our ways. They are SO much better.

by jaimelbrown ♥ 0 Leave a Comment

Thank you for the outpouring of love, prayers and support you have all shown us this week as we have become a family of six!

Amelia Jane was born Monday evening weighing 6 lbs 4oz (although 6 lbs 10oz was mistakingly first reported). She is a beautiful South Korean and Columbian mix with a head full of black hair and beautiful skin.
She has changed our life in the most special way. None of us will ever be the same.
She was born in Raleigh and on Wednesday they airlifted us by jet to Levine Children’s Hospital because she is a medical marvel and they are better able to treat her here.
Before her birth, the ultrasounds led the doctors the think that Amelia may be missing part of one of her legs but she is much more special than that. She has the most unique bone structure the doctors at either hospital have ever seen.
The doctors are currently running every test imaginable to get to know her amazing little body well and determine the best way to treat her and give her the highest quality of life possible.
It has already been a beautiful journey. We have seen God’s goodness, grace, mercy, and attention to detail every step of the way.
Our life is so different now. The things of this world are strangely dim compared to how they looked this time last week.
Some of my biggest dreams and greatest fears have become a reality all at once. We have opened our hearts and lives to a child who desperately needed a home and I know that the missing puzzle piece of our family is here, tucked into my heart. But I typed this with hands cracked dry from countless washings from scrubbing in to visit my baby with the scary sounding diagnosis in the NICU.
Amelia has multiple physical anomalies but when we look at her we see God’s grace and her beautiful eyes and dimples.  She will probably never walk or feed herself because of arthrogyposis and her other disabilities but in the 24 hours we have been at Levine, she has already come so far, that we are amazed.
There is NO telling what God has planned for her.
If you told me one week ago that we would have a severely handicapped newborn daughter today, I don’t know that I could have believed how happy and blessed it has made me.
We are tired and it has not been easy.  Nate passed out a little bit when he first saw her and he has had to carry me out of the NICU in hysterics but this is our new life and God has given us exactly what we need exactly when we have needed it. We have never doubted for a second that this was the right thing to do or regretted doing it. She is our daughter and we are immeasurably thankful for the opportunity to love her.
Averie, Austin Kate and Atalie are doing marvelously well!  They have gotten to meet her and are totally smitten.  They think she is adorable and are planning a lifetime of sister adventures with her. We are thankful for Aunt Buttercup and Grammy and Granddaddy moving in and taking over the day to day life with them so we can spend a lot of time at the hospital with tiny Amelia until we get everything totally sorted out.  It’s such a blessing to all be in Charlotte together so we can see each other everyday.
There is so much more I could write and I will, but for now, just keep praying for our amazing, precious baby girl. Our prayer is that when people look at her for the rest of her life, they simply see Jesus.