Wednesday, January 22, 2014

The journey begins...

Amelia's journey begins...  The journey began for us when we found out we were pregnant with our 3rd child.  We were so excited!  We knew right away that we wanted to find out what we were having.  So, at 20 weeks, with our other 2 children in tow, we couldn't wait for the ultrasound tech to tell us.  For our close friends and family, the following will be a re-cap, but for those of you that don't know, I want to start from the beginning.

During the ultrasound, we found out it was a girl!  We explained to the kids that they were going to have a little sister!  At the time, I was worried about Sam, because he wanted a brother so bad.  But, that quickly became the least of my worries.  The excitement in the room changed quickly when the ultrasound tech noticed some concerns with our daughter.  She suspected some clubbed feet and clenched fists.  After the ultrasound, we saw my OB who went over the ultrasound with us.  She was not concerned since in most cases, clubbed feet does not require extensive treatment.  As far as the "clenched fists," her impression at the time was that we'll just have another ultrasound at 24 weeks and she was probably just holding her hands that way at that particular time.  We walked away with heavy hearts not because of the physical disabilities that could hopefully be easily corrected, but with what was causing this. After a lot of prayer, we decided that by trusting my OB's opinion of the ultrasound, we were trusting our God, who created our baby girl before she even came to be (Psalm 139:16). 

At 24 weeks, they were already prepared to bring in the high risk OB to do the ultrasound.  He confirmed that she did have clubbed feet.  As we held our breath about the hands, he said that the right hand and wrist were deformed.  The fact that it didn't appear clenched and affected only one of the hands were good signs.  Therefore, he comforted us in that he was fairly certain this did not involve the brain, but we wouldn't know for sure until she was born.  The good news was that she was growing at a healthy rate with the brain and other organs measuring well.  Psalm 139 was our source of comfort.  God was knitting together this sweet baby "fearfully and wonderfully" (vs. 13-16).  Her days were already planned for her!  We had to believe this awesome Truth for our daughter and for us, chosen by God to be her parents.

Fast forward to her birth...  Amelia was breached, so during my C-section, the first thing my husband saw was her clubbed feet...that was tough.  Because I couldn't see from behind the curtain, I was holding out for that first cry...it was music to my ears!  As I prepared for what I might see, I looked over at her lying on the table with the nurses cleaning her off; I first saw the clubbed feet, and then not only one hand, but 2 deformed hands and the words of my doctor were going through my mind, "because it's only one hand, that is a good sign."  During this celebration of new life, Satan was already at work trying to take me down.  My heart started to race...I just wanted to so badly hold her and look in her eyes and know everything was going to be okay.  Unfortunately, with a C-section, that doesn't happen right away and being sick from the anesthesia, that wasn't happening for a while.  When I finally got to do that, I fell in love right away...but, deep down, I wanted to know right then and there if everything was really okay.  I just wanted her to be okay.   



The days in the hospital went by quickly.  At first everything seemed to be "fine."  The clubbed feet and deformed hands seemed to be the only concerns with a good prognosis.  She was also eating really well, so that was great!  On Monday, I was discharged very early in the morning but, we didn't leave the hospital until later that night.  The pediatrician that saw Amelia on Monday noticed some additional concerns that she wanted to address before we left. 

Amelia had a heart murmur that she was quite certain was a PDA.  Babies receive their oxygen from the mother's umbilical cord in the womb, but shortly after birth, that opening in the heart closes because the baby is now receiving oxygen on their own.  Apparently, it is not uncommon for this process to take a little longer in some babies, but they still had to do an echo cardiogram to be sure this is what it was.  We were able to go over the results with the cardiologist soon after the test.  He explained that this is nothing to worry about, but wanted to see Amelia in 2 weeks for a follow-up.  

The pediatrician also pointed out that Amelia's legs did not extend all the way.  I was surprised no one picked this up before, but she was swaddled quite a bit of the time.  She wanted to consult with a genetics doctor because she felt it was important to rule out an underlying syndrome responsible for these "multiple contractures."  We were not able to see this doctor in the hospital, but we were able to get an appointment with him the next week. 

Finally, we got the green light!  Nels and I were very excited to bring our new baby girl home and be together as a family of 5! 

The next week we saw the genetics doctor.  He was very nice and personable with Amelia, that meant a lot to me!  After looking her over, literally from head to toe, he found a few more things about Amelia that gave him a better idea about what was going on.  He wanted to run it by his colleagues in Seattle, Washington and get back to us.  He used the word "arthrogryposis."  There are many different forms of arthrogryposis, so be aware of what you might find if you google this...  We found out more about it than we ever cared to know and unfortunately, it has now become a familiar word to us.  We also learned that time will play a big factor in determining what Amelia's limitations will be.  

 
Last week Amelia had an appointment with her orthopedic surgeon and she was casted up to her little buns with only her toes sticking out.  In fact, with this first cast, her feet are casted upside down; this is the first step in pulling her feet away from her legs.  There were definitely tears, but in the end it went better than expected (for Amelia and mom and dad).  The initial plan includes casting each week for 10 weeks and then they will re-evaluate further treatment.  Elsie and Sam had fun decorating her casts and Amelia didn't seem to mind either!  Although, anytime her brother and sister are around, she's a happy girl! 




In the afternoon Amelia had an appointment with her cardiologist. At that appointment, they did another echo.  We were excited to see a familiar face perform that test for us.  Thanks Lindsey!  :)  Amelia did awesome too!!  We then sat waiting for the doctor to come in and go over the results with us.  We assumed everything would be fine and we could write this one off...but, we were wrong.  The PDA had started to close, but he saw something else; something he has only seen a handful of times in his 30 year career, he told us.  Amelia has an enlarged aorta and ampulla in her heart...I wish that I could give you more details, but it was a lot of information to piece together.  There is a chance that because no one could really get a true height on Amelia (because of her legs), that this could have something to do with it, but it could also be connected to everything else going on.  So, at this point, we have to wait a couple months and they will do another echo when Amelia is 3 months old. 

The very next morning, I received a call from the genetics doctor and he had talked to the cardiologist.  He went on to further explain to me that there is a connective tissue disorder that involves the heart and stiffness of the joints (multiple contractures).  So, he is going to wait on testing Amelia for arthrogryposis and see what the cardiologist comes up with in the next couple months.  The good news is that whether Amelia has one of these conditions or not, it does not affect treatment of her feet, legs and hands at this point. 

The next morning was tough for me; I know things could be so much worse, but not knowing exactly what we're dealing with was weighing heavy on me as I looked at my little Amelia sleeping in my arms.  Not to mention, she was very fussy that day, which the orthopedic surgeon told us to expect because of the casts.  Of course, without realizing it, God was going to intervene shortly...  A dear friend made a surprise visit.  She had something for us along with a letter explaining that what she had for me had nothing to do with her and all the credit was to go to God.  She had taken Amelia's name and took each letter to begin verses from Psalm 139 that I leaned on when we initially found out about Amelia before she was born.  It was beautiful!  She told us she even tried different names and Amelia was about the only one that worked.  All I could do was cry because God was without a doubt reminding me that Amelia's life was not by accident and He had and still has every single detail planned for her.  I may never understand why, but I have to trust Him.  That same day, our church family dropped off a "prayer pager."  Every time someone says a prayer for us, the pager goes off.  Again a reminder that God was taking care of us!  I take it with me wherever we go.  The rest of the weekend I felt really good and I know it's because of the power of prayer, I have no doubt about that!! 

Monday Amelia started occupational therapy on her hands.  She did awesome!  We will now start doing some stretches with her at home and go back to therapy once a week.  Today Amelia had an appointment to get her casts changed.  It was tough on her because they have to stretch her feet a little bit further every time...heartbreaking for this mommy, and daddy too.  The doctor also said that her feet are going to be more sensitive each time the casts come off.  One down, 9 to go!

I named this post "Amazing Amelia;" my sister gave her this name shortly after she was born and we believe that regardless of what the future holds, Amelia will be amazing and overcome whatever is in front of her!  Thank you for all the prayers being said for our little Amelia and also Nels and I and the kids.  We're trying to just deal with what's at hand right now and most importantly, enjoy our newest addition!

"Trust in the Lord with all your heart and lean not on your own understanding."  Proverbs 3:5

7 comments:

TigerAL said...

Julie and Nels: thanks for your heartfelt sharing about your Amazing Amelia! You are all an inspiring example of faith and love. In prayer, Alan and Ruth

TheMom said...
This comment has been removed by the author.
Ps19 said...

Nels and Julie, Thank you so much for sharing your journey with us. Amazing Amelia could only be brought into an Amazing Family. Love to you all.
Rick and Jaci

Kelli Oosting said...

1) We continue to pray for Ms. Amelia everyday!! My new personal prayer is that you find the blog to be an amazing blessing. It will be therapeutic for you (I know this for a fact!) and good for Amelia someday to see how far she has come!!
2) Lindsey is the greatest!! And we liked Season too - if you ever have her!! But what a God thing you got Linds!!
3) We knew these girls were destined to be friends... Little did we know they would be heart buddies too!! Who is your cardiologist!? We've met them all!!
4) Amelia is absolutely precious in those casts. They are so tiny!!
5) Keep the faith and continuing being the amazing mom that you are!!

Unknown said...

Wonderful blog Julie. I'm so glad to get an update on her. Know that we are praying continually for all of you. Can't wait to meet her in person.
As I heard tonight at Ladies' Bible study- God sees each and every one of us. He knew us before time began and already knows what each one of us will face. He loves us like His FAVORITE child. Such a blessing to know that HE already knows the outcome of Amelia's story.
Love you guys so much!
Ruth

O Mom said...

I have a blog myself but have not blogged in a long time, and I just knew this community of bloggers was a place I needed to go for answers, prayers and comfort. My grand daughter was born 3 weeks ago with Arthrogryposis. She got her first cast on last week and will start physical therapy this next week. My daughter is scared and sometimes so am i, but like you we know God has a plan for our little miracle. I'll be praying for your girl when I pray for mine. Thank you for sharing your story.

julesann m said...

Thank you for your prayers!! How is your granddaughter doing?