One Month Milestone

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

We Are Home

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.

First Surgery Update

Amelia's surgery went very well today.  She is currently back in NICU and already off of the ventilator. We will start her first feeds by g-tube later this evening.  She also had to have another IV line put in today in her head, but no hair had to be shaved, so that is yet another praise!

Amelia's First Surgery

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.

Sharing it All

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