A Visual

This picture was taken a few weeks ago but I wanted to show a visual of what Lark's leg difference looks like.

Tiny Femur

Last week Lark had her first x-ray. The discrepancy of her femur is larger than we had thought from the ultrasound images while she was in utero. It's crazy to actually have an image of what everything looks like inside of her body.

We also had a meeting with Scottish Rite Hospital. Very neat faculty with an awesome staff. More to come on that later though.

Birth

Hands down one of the most nerve racking moments of my life were the short moments before Lark was born. The fear of the unknown was about to become reality. Answers to questions we had had for months were fixing to be answered. We had so many months to prepare for her and what PFFD would bring to our lives but in that moment a flood of emotions hit me ... I was straight up scared!

I will never forget the look of relief on everyone's faces when she came out. I too felt like I could breathe again. She was here and that was all that mattered! My doctor studied her very carefully before laying her down on me. There is no moment in life like the moment new life is laid upon your chest. I think it's one of the most beautiful moments between a husband and a wife and a mother and a child. The joy and love is overwhelming. 

Because we knew a head of time that Lark had PFFD there was an extra team of nurses in the room to examine her. They quickly took her and began their evaluation. A good team of doctors can make a world of difference when going through anything medically. My OB and the other doctors within the group are amazing. She is amazing! I will forever be thankful for her attentiveness and kindness throughout my pregnancy with Lark.

Before the nurses brought Lark back to me my doctor simply said "just hold her for now, don't look at her leg, just hold her." Now of course you know all I wanted to do was remove that tightly swaddled blanket and check out the situation but I didn't and I'm glad that I didn't. After all the nurses and doctors had left the room I finally did look. With my mom and mother-in-law next to me I unwrapped  my sweet baby girl. Looking at her, her leg and hip looked like I guess I had imagined it would but it was a tough moment for me. Nothing can truly prepare you for the reality of your child having a disability of some sort. Yes there are worse things out there, way worse but any type of disability is hard and it's ok to be sad that your child will face things you wished they never would. It didn't take long for all of us to wipe our eyes and move along because how can you do anything but smile when you are looking at this loveable face.

Consuming

It is safe to say that the weeks following Lark's diagnosis I completely consumed myself with spending any and all extra time I had on the computer researching PFFD. There are still days where I let myself be consumed by it and I'm sure there will be many, many more to come. I am thankful that we learned about Lark's PFFD while she was still in utero. I think it would have been very hard to not be prepared for it though at the same time it gave us months to think about it. At times I think the fear of the unknown took over the excitement of being pregnant. I found and still find so much comfort in other people's blogs. To see completely normal, happy and beautiful children thriving with this difference makes things so much easier. Plus the strength of the parents is inspiring. From other's stories we can kind of get an idea of what Lark's path might look like though there are several ways it might go. Hopefully over time that path will become clear to us.

Finding Out

Like most 20 week ultrasounds the day of is filled with such excitement and nervousness. This is true whether it is the first baby or your third. Lark just happened to be our third! 

The appointment started out just like all of them do. Which to this day I think sonograms are so cool and the technicians are awesome to know all that they do. Plus our tech is the best, she's so sweet. My husband, the tech and myself were in full chatty mode, laughing a lot and trying to figure out if baby was a boy or a girl. Of course they always leave that to the last thing they do.  All of a sudden she got very quiet and we quickly noticed that something wasn't right. The tech was measuring the baby's legs over and over again. She very calmly informed us that her measurements weren't matching up when comparing the baby's legs but then very quickly said it could just be an error on her part and would have the doctor check it out. She then informed us that we were having a girl! 

As the tech left the room we laughed about the fact that we were having a girl. Our first daughter! Oh the craziness that her and her brothers would bring!  Then I quickly looked at my husband with a "but what the hell is up with her leg" look. It was a mix of joy and freaking out all at the same time! 

The doctor came in and rechecked everything. He then confirmed that baby girl's left femur was indeed measuring smaller. It was 1/2 the size of her right. It was also very obvious to us once he pointed it out. He then also informed us that he had no clue why it was that way. He had never seen something like this before. Everything was perfect outside of one bone. He sent us out the door with a lot of unanswered questions but I think we left him feeling the same way as well. 

Two very long days later we were told that baby had PFFD and so the journey began.

Above is one of the first ultrasound images of Lark's leg difference.

What is PFFD?

The short version:

Proximal femoral focal deficiency (PFFD) is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.  (Thank you Wikipedia) 

In Lark's case the PFFD effects her left femur and hip.