Thursday, August 16, 2012

Our world spinning

Life isn’t always sunshine and roses I know that, but when you are pregnant it is all supposed to be roses.  Well that is after the first trimester of morning sickness.  I made it to the second trimester and feeling good, feeling the baby kick, and was excited about our future as a family of four.  We had our 20 week ultrasound last week and was so excited about seeing the baby move, roll away from the technician and play with its feet.  We varied quite a bit on whether we would find out this pregnancy if it was a boy or a girl and in the decided to be surprised.  Instead I focused on the heart and making sure all was okay there.  We left the appt, happy to finally get a glimpse of that little bundle of joy. 
            All was going well until my OB walked into my office on Thursday to talk about the ultrasound.  I immediately knew something was wrong.  He said that the femurs were measuring short and he was referring me down to the specialists in Grand Rapids.  He said to expect a call from them today or tomorrow.  Immediately my heart sank and it was all I could do to call Chuck and let him know.  Well we got an appt the next day and made the trek down to GR.   When we first went back we had to meet with the genetics counselor, in my head I thought this really couldn’t be good.  I knew from some reading that it could possibly be down’s so I preparing for that.  After taking our history and her explaining a few of the possibilities she said we would have a more in depth ultrasound.
Back in the room, grasping tightly to Chuck’s hand I studied each measurement that the technician took.  She said that the femurs are bowed on both sides, also that the chin looked a little small. 
            The doctor came in and redid some measurements and discussed the findings.  He was very straightforward and honest.  But I distinctly remember him saying “at this time we do not think this condition is lethal”.  What??  I knew it wasn’t good but didn’t think it was that bad.  He said right know he thinks the condition is osteogenesis imperfecta, a type of skeletal dysplasia.  It is also known as brittle bone disease.  Their bones are extremely fragile and can break under the slightest of circumstances.   I then had an amniocentesis and we left GR under a complete daze/fog/despair for the weekend.  We drove home in tears and I threw up multiple times.  How could this be? Why us?
            The weekend was nothing but a blur to me, I could barely breath. We could barely function; Mallory went to Grandma’s so she wouldn’t have to see us cry anymore.  I told her baby had a boo-boo and she kissed my belly and put her doggie gel pack on my belly to make it better.  Oh honey, I wish it was that easy. 
On Monday we got some early results and the baby doesn’t have Down’s or Trisomy 18 and they reanalyzed the ultrasound and think her femurs are broken.  And it was confirmed that we are having a girl.  We named her Paige Elizabeth over the weekend.  Our little sweet PEA.  We are currently left waiting on more results this coming Monday from the amniocentesis, but have been told this condition doesn’t show up and it is up to the insurance company to test for this condition.  I can at least hold my baby close, but Chuck can’t get that attachment to her, he is still unable to feel her kicks.  We are left wondering if each kick is breaking another bone.  I am left wondering if this will be the last kick I feel. We are left wondering why and at times screaming in anger towards God.  I feel as though I am walking under a huge black rain cloud just over our heads.  I keep trying to find the rainbow (God’s answer) but have yet to see it.  We are left wondering if our child is suffering or in pain and we can’t protect her.  So many questions without answers.  All I can do is ask for help in prayers and provide support for us. Although we feel alone and lost, I know there is support out there from family and friends.  We appreciate it.

13 comments:

Sarah said...

My heart and thoughts are with you all. I'm so sorry to hear, and so sorry to see you in pain. -Sarah

Sarah said...

My heart and thoughts are with you all. I'm so sorry to hear, and so sorry to see you in pain. -Sarah

Kate said...

Praying for you and Paige.

Lindsay Miller said...

Oh Jen, my heart breaks for you. It may not seem apparent now, but there is a plan. Paige will be a world changer, whether its with those immediately within her grasp or once she roams this world! I pray for peace in your heart and the courage to be strong for yourself, your husband and Mallory.

Anonymous said...

I am going to keep all of you in my prayers. You will find strength you don't know you have to make it! Keep your chin up, keep loving that Sweet Pea.

Jami said...

Jen, I can't begin to imagine the anguish you are experiencing. My husband and I will keep you, Chuck, and little miracle pea in our prayers. Although sometimes we may never know his reasoning God does have one for everything he does.

Jami said...

Jen, I can't begin to imagine the anguish you are experiencing. My husband and I will keep you, Chuck, and little miracle pea in our prayers. Although sometimes we may never know his reasoning God does have one for everything he does.

Jami said...

Jen, I can't begin to imagine the anguish you are experiencing. My husband and I will keep you, Chuck, and little miracle pea in our prayers. Although sometimes we may never know his reasoning God does have one for everything he does.

Unknown said...

I'll be keeping all of you in my prayers

Jennifer said...

Jenn - My heart aches. I am so terribly sorry you are going through this. It is horrible to feel that you can not protect your child. I am sending love and prayers your way. If you ever need a sympathetic ear - give me a call. I know NOTHING I can say will make you feel any better. But hope you can feel that you are not alone - your family and friends hurt with you! Hugs, hugs and more hugs from Wyoming.

Aunt Debbie said...

Oh Chuck and Jenn, please know that you and little Paige are being lifted in prayer. It is so hard to understand why things like this happen. One thing I do KNOW is that our God is a God of miracles, please don't give up and that He never gives us more than we can handle. Check out a story on 9&10 news tonight (online) about the young lady with brittle bones and the experimental drug that is working....maybe its the start of a miracle. Please feel our hugs and love. Prayers are being lifted! Much love, Uncle Mike and Aunt Debbie

Judy said...

Jen and Chuck, Kristin sent me the link to your blog. As I read it, I felt as if you were speaking right to us with your heart and soul. Please know that I will keep you in my prayers. I also believe that each child is a wonderful miracle. You will always have the strength you need. You are not alone. Judy (Kristin's Mom)

Anonymous said...

Jen, so sorry to hear about your baby girl. I know you are in pain about unanswered questions now, but just try to take it day to day. She needs you still so take care of yourself. ***hugs***