The Numbers Game

I started writing this post last night, but the words and will to write failed me.  Yesterday was another tough day.  I had an appointment at Duke to meet with a genetic counselor and have my routine OB visit and ultrasound to check on Will.  We also had some additional images to gather for the Cedar Sinai skeletal dysplasia research so my appointment was nearly three hours long.  To say that I was tired and ready to not think about it would have been an understatement for how I felt last night.

I don't really know how to start this post, so I'll begin with a look back.  So often throughout our journey with Will it seems we have been playing a numbers game.

• 176 days ago we found out we were expecting baby #2
• 167 days ago our pregnancy complications began with bleeding
• 122 days ago severe bleeding took us to the ER; we miraculously learned Will was still alive
• 76 days ago we learned that Will had short, bowed femurs at our 18 week anatomy scan
• Less than 24 hours ago the doctor gave me a sad nod and said that Will's chest to abdomen ratio was 0.45

Before I go on, let me explain a little more about that last number.  From all the research I have done the last few months, I learned that most lethal skeletal dysplasias are said to have a chest to abdomen ratio less than 0.6.  For those of us that do better with a picture illustration, here's what I'm talking about.  

Source:  Jeanty, Philippe and Gloria Valero.  "The assessment of the fetus with a skeletal dysplasia."  Women's Health Alliance 

As the sonographer was measuring Will yesterday, it became apparent to even my untrained eye that the measurements were really off.  I had noticed it before and the doctor had pointed it out before, too, but I had never seen a view of his body that literally put one circle around the outside of his chest and then another around his heart.  It was beyond obvious that his heart takes up way more than 50% of his chest; 0.45 to be more exact.

After the sonographer finished and left the room, I had about twenty minutes to lay there in the quiet darkness on the exam table waiting for the doctor.  My thoughts were swirling, but oddly enough I was calm.  I knew what was coming.  I felt prepared.  I thought about what I would do if I got upset when the doctor actually told me his thoughts and I prayed.  I prayed for strength and for comfort, but mainly I prayed for Will.  I prayed that the Lord just look after him and do whatever is best for our sweet boy that we both love so much.  I felt so much comfort and peace with everything.  I know God has a plan and He is in control.  I cannot change the numbers or Will's chest or whether he will live or die; God is in control of everything.  I just have to make myself open to this journey and ready to receive the blessing of this child.  

I held it together with the doctor but a few tears did slip out as he asked how I was handling everything.  Why does that question get me every single time?  He asked if I was sleeping..if I was eating..if I was a basket case.  I tried explaining to him how I felt about everything, but my words failed me.  I am sleeping, I am eating, and I was a basket case long before any of this ever started.  :)  All joking aside, though, I think we're handling it pretty well.  It is comforting knowing that we can't control or fix it.  I can't imagine the frustration I would feel if there was something more that I thought we could be doing for Will, but there's not.  We are powerless.  His sweet body is in the hands of the Lord and we have to trust that His will be done.  Does it mean that I'm going to stop praying for a miracle?  No.  Does it mean that I'm giving up hope?  Absolutely not.  Does it mean that I'm not going to prepare our family to welcome Will home?  No.  

Thankfully, I don't know what the future holds.  I do know there are kids alive today that were given a lethal diagnosis in utero.  If you want to read about one of those special little kids, meet Brennan.    I also know that we have only 77 days before Will is due!!  There's a chance I may have a c-section which would likely be scheduled around May 2, so our time may be even shorter.  We need to get busy!!

For all of the awesome people that have reached out to our family, thank you.  Your emails, messages, cards and prayers sustain us each day.  It is so easy to feel alone at times and knowing we have such a strong support system behind us means the world.  Even though I can't seem to get myself together enough to send thank you notes to everyone for their support, please know that we appreciate everything far, far more than we could ever adequately express.

Please continue to pray for us in the days ahead.

• Pray for Will that his body grows strong; also pray that he will know how much he's loved and wanted by our family even before he's born
• Pray that Carlton (yes, that's Mr. Man's name) and I find the guidance and strength we need to have the difficult talks that are potentially coming in the days ahead; please also pray that our minds and hearts are open to following God's plan for our family
• Pray that Emme (yes, that's The Babe's name) continues thriving and does not suffer from the 'different' type of life we're all leading right now
• Pray that our fears can be quieted and that His peace can wash over us and help us continue to focus on His plan for our child
• Pray that our minds and hearts be open to the journey we're on; that we may find the reason behind all of this and use it to glorify Him

I don't know what else to pray for...  It seems like I find myself uttering small prayers pretty much 24 hours a day now.  If the dog pukes, I pray.  If I burn the chicken nuggets, I pray.  I think I'm turning into Annelle from Steel Magnolias. :) Remember, Truvy's line about Annelle saying how she prays all the time and maybe she's praying because she shot the elastic in her pantyhose?  Yep, that's me these days..except I'm not wearing hose.  Ahhh, nothing like ending on a serious note, huh?  :)  

Source

PS - As more people become aware of our story, I feel myself becoming a bit more filtered.  There are so many different experiences we all go through with our families.  Whether it is difficulty conceiving or losing a child, we all have stories and I want to be respectful of that.  I know there are also families out there that have dealt with an OI diagnosis before and there are also those that have dealt with a lethal OI diagnosis.  I know that doctors and measurements can be wrong.  I just want to say again that I'm not giving up hope and I don't think Will's outcome is definite.  This is just where we stand today.  The future and our sweet boy are in the hands of God and for that I am very thankful.  I also just wanted to say that I'm blogging about all of this because I know there are other women out there going through something similar today and there will be others in the future.  If anything I say can help them, it's worth it.  It's also therapeutic for me to write it all out.  Maybe there's even another reason for me to share all of this?!  I just don't know yet and I guess that's part of the journey.