Tuesday, March 16, 2010

The Beginning of Our Journey

I know the last few posts haven't been very informational, but I do intend to make this a place where you can find out the latest on our little one. However, I have a feeling I will also use this as a place to share my emotions, so I'll try and label future baby updates clearly in case you want to skip all the mushy stuff! ;)

I realize some of you might not actually know what is truly going on with our baby, so I will start at the beginning and do my best to be concise. As you can imagine, I could write 100 posts on the last 13 days, but I'll stick to the key points this time. Thoughts and reflections will come later...trust me, they are brewing.

Almost 2 weeks ago, we went for our routine 18-20 week ultrasound. We decided to find out the sex of the baby for the first time (I finally gave in), so we decided to bring Emma, our 4 year old daughter, with us (more on that later).

However, the sex of the baby became secondary once we learned that our baby has Myelomeningocele, the most severe form of Spina Bifida. Basically, during the early stages of development, our baby's spinal cord did not form correctly and actually failed to properly close. This means part of her spinal cord is literally sticking out of her back, leaving nerves exposed. Although this doesn't always lead to permanent nerve damage, it looks like it has in our baby's case.

The doctor was unable to visualize any movement in either of our baby's legs from the knee down. In other words, she wasn't kicking, and we couldn't get her to change position during the ultrasound. In fact, we have a photo of her with her leg sticking straight up in front of her...an image forever planted in my heart. This may indicate some level of permanent paralysis in her legs. Both of her feet are also clubbed, a secondary effect from the Spina Bifida.

Because she only weighed 7 ounces during the ultrasound and wouldn't change position, the doctor was unable to see just how much of her spinal cord has been affected. This is something we hope to find out at our next ultrasound, which is scheduled for the beginning of April.

The most concerning information was that our baby also has mild Hydrocephalus, which is unwanted fluid in her brain. This is the result of her exposed spinal cord pulling down on her brain (called Arnold-Chiari Malformation) and obstructing the correct flow of brain fluid. This is very common in Spina Bifida. However, as the spinal cord continues to pull, there is a chance that this fluid can continue to build up and put pressure on her brain. If that happens, there is the risk of mental challenges as well as physical challenges. Right now, our baby's fluid levels aren't overly concerning, but the next ultrasound will tell us if it is stable or if it is increasing.

So what does all of this mean? Well, it means that our baby will need surgery after she is born to cover her spinal cord. She may also need to have a shunt placed in her head to drain out the excess fluid. These are often permanent. She will also require surgery at some point to correct her clubbed feet.

As far as what it means long term, we just don't know. There is a chance more nerve damage will occur as our baby grows these next 19 weeks, but we are hopeful that God will prevent that from happening. We do not know if our baby will walk on her own some day, but, again, we our trusting God's plan for her life and will patiently see what He decides.

All of this was totally unexpected. Both of Emma and Kendall are active, healthy little girls. This does not run in our family. Only 1 in 1000 babies are born with this condition...1 in 1000. That number still blows my mind.

None of this is easy. Writing this isn't easy, but God is putting it my heart to share our baby's story so that people will pray for her...and boy are they praying! We have been overwhelmed at the amount of support and love we have received these last few weeks. God is so good! I can't tell you what an honor it is to carry a life in my womb that is already glorifying the Lord so much. Although I would never choose this for our baby or our family, in many ways, I actually feel blessed. I can't wait to see what God has in store for our precious angel. We are celebrating her life, and I am falling more and more in love with her every day.

Yes, the journey ahead is a long one. We will have many big decisions to make and a whole lot of learning to do. But I know now more than ever that God is with us every step of the way. Some days He will guide us, while others He will carry us. But He is there and always will be. We can feel it.


Terri said...

Lisa, you are the most faithful person I know and I am inspired by you. Thank you for being brave enough to share this journey with all of us.

Jen said...

Thanks so much for the update! Please know she's in our prayers~now more specifically. Now get on to naming her so we can pray for her by name ;-)

grandma/mom said...

Celebrating with you, my love. Can't wait to meet our little doll ;-) Know that we are here, but most importantly remember His promises...
Deuteronomy 31:8
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

Anonymous said...

I have read your blog since you were pregnant with Kendall, I think I may have left a comment before, but I am not sure.

I just wanted to say congratulations, and stay strong.

Judith, Edinburgh Scotland


Kelly James-Enger said...

Beautiful blog, Lisa. I've been praying for "Baby B" every day and you and your family are in my thoughts.

Take good care,

Deanne said...

Jeff and Lisa, Your words are so inspiring and beautiful. We love you guys and your family, we are praying and know that Our amazing Father is holding your little girl in the palm of His Hand. The amount of people praying for your precious daughter is a testimony to how many people love you guys, love all three of your darling little girls and how many lives you and Jeff have impacted!

Stephanie said...

You have such a beautiful heart!

I just sent up a prayer for you and your family.


Sarah said...

thank you so much for sharing your experience with SB...our little boy was just diagnosed in utero a few weeks ago and it has all left us terribly shaken. It's comforting to read your blog and know that there is hope for a good outcome!