Saturday, April 20, 2013

2 years Post Fetal Surgery

If you are new to my blog, then you may not know that two years ago, 2011, was the year that about killed us...quite literally!  In March of 2011, we found out at 16 weeks that our fourth baby had spina bifida.  Shocked and devastated...hardly seem like strong enough words to describe those early days following the diagnosis.  Even more devastating since five years prior we'd had a seemingly similar horrible day when we learned that our first sweet baby boy had a fatal, rare kidney problem.  We'd been told that the chances of something like that happening again would be the same odds as getting struck by lightening twice on the same day.

Spina bifida was something I knew nothing about except that I was super religious in taking my prenatal vitamins.  I really only knew that they helped to prevent neural tube defects and for someone who had faced such a hard and difficult loss I couldn't for the life of me understand why any woman wouldn't take a silly pill if it would prevent a birth defect!!!!!  I did...for five years and I had a baby with spina bifida. Go figure!!

After finding out that our baby had spina bifida it was mentioned to us that there may be the option of fetal surgery.  It seemed like such a long shot.  At the time there were three hospitals in the US who did the surgery.  We would have to travel.  We would have to qualify (amnio, ultrasounds, medical files, etc.).  It would have to be done in a few short week(from 20-25 weeks).  It was super, mega, expensive and at that time insurances were just beginning to cover some cases.  It would mean I would be on bed rest for the remainder of the pregnancy.  It all seemed impossible and overwhelming.

Two Days before Surgery! My biggest worry was how this all would effect our girls!
Kevin made the first call to Vanderbilt and began to gather information for us.  The ball got rolling and we prayed.  We prayed for wisdom and peace.  We prayed that God would open and close doors and that we'd keep walking through them as He opened them.  The weeks went quick and to make a long story short, on April 19, 2011, little, teeny, tiny 1lb 14 oz. Eli Matthew and his scared to death mommy went into surgery together. 

I can't believe I am posting this one!  It was not a pretty day for me!
 Honestly, I have never been more scared in my life.  On the morning of surgery, I remember being anxious and really tired.  I hadn't slept well in a while.  After all the consents were signed I requested something to help me relax and that is about all I remember, except laughing as they put the epidural in (those were some good meds)!  I was completely out for surgery and it lasted about four hours. 

The surgery team...beginning! We were blessed to have this unique look into this day via the nurse coordinator taking pictures.  If you are squeemish...you may want to stop reading here!
Opening mama!
That my friends is my pregnant 22 week uterus outside of my stomach and flipped over.
Opening the uterus! Can you believe this works?  So thankful for the mamy moms who participated in the MOMS Trial and pathed the way and the brave doctors who pioneered it!
They opened me up and took my uterus out and flipped it.  Found Eli's back via ultrasound and opened my uterus.  The neurosurgeon repaired Eli's open back and then they put him back in me and closed me back up.  Sounds pretty simple huh!  It is a very delicate surgery and there have been babies that haven't made it through.  I realize that so much more two years later how blessed we were. 

Eli's very 1st Neurosurgeon watching and waiting for his turn!
I was under a very deep anesthesia...enough for me and Eli yet ,they still gave him local anesthesia too!  His first  shot!
Just for a moment ...that must tell you that unborn babies MUST feel pain!!!! 
And this is his precious little opened spine.  The source of many tears and concern and the reason for all of this!
Closing Eli's back and then they closed me! 
So thankful for this special team of doctors and nurses at Vanderbilt! 


As I was waking up I remember being dazed and confused and Kev kept telling me that all went well and that Eli's little heart remained stable and strong through the whole thing.  Recovery was a rough ride, but everyday got a little better. 

Feeling a little crazy.  Kevin said I was saying that it had been three days since I'd been able to eat.
Clearly this was the exciting moment of the day!
The two best vistors ever.  So thankful that they got to be with us in Nashville!
First airplane ride home almost two weeks later!
Mama in the wheelchair. Truely everyone should have to use one for an extended season and it will foster a new level of gratefulness and compassion for those that use them daily! 
Two years post surgery I have a beautiful, smart and healthy little boy.  I was so thankful when he was born at 34 weeks, that his little back was closed with just a small scar on his lower back.  Fetal surgery does not take away spina bifida, but I feel like it benefited our little boy in many ways. 

This was Eli's back on the day that he was born. 
My first time holding Eli in the NICU!

None of this would have been possible without the best husband and daddy around who did more than his load that spring and summer! 
I am so thankful to all who were there for us during this crazy time in our lives.  I still remember so many little acts of kindness and care that carried us through some long days.  So, two years past and I am so thankful that we did it, that God carried us through and that we have an awesome little boy that fills our hearts with so much joy every single day!!!

If  you want to read all the details...our spina bifda journey begins in March 2011 in the archives.  :)



4 comments:

Heather said...

God is so good! I remember standing in our music room as Whit told me about you, and I began praying for your surgery and for Eli. I am so excited to see what God is going to do with his life in the future and love seeing his accomplishments!

Miranda said...

Thank you so much for sharing this and I LOVED seeing the pictures of your uterus and Eli's back- so awesome!! God is AWESOME :)

Tasha Via said...

What a beautiful, beautiful story! Thank you for sharing...

What a sweet miracle you now possess!

Casie Parrott Tyson said...

Julie,

I absolutely love reading your blog and your sweet, sweet words and testimonies!