The story of Olivia Hope

Thursday, December 3, 2009

And so it is...

I'll briefly start from the beginning for those who may be out of the loop. About 5 weeks ago I went for my routine 20 week ultrasound. What could go wrong? All I could think about was finding out if I was having a pink baby or a blue one! I was getting pretty nervous when the ultrasound tech spent about half an hour just on the top of the baby's head taking different photographs and labeling them with those abbreviations that you can't understand. She kept right on chatting about this and that and the other so I forced myself to calm down and figured if there was something wrong she would go get the dr. After the ultrasound I waited about 45 minutes for my exam which ended up being the dr. calling me into his office to tell me that the baby's head and face did'nt look quite right. "It's just not the perfect text book picture we would like to see" he said. A trip several days later to a high risk dr. affirmed that yes there was something wrong and it was more than the 'not the perfect text book picture'. The dr. said that our little girl had a very serious looking cleft lip and he was even having problems identifying a good profile of the nose. He said that even more so the anatomy of the brain did not look good and continued with telling us of different chromosome abnormalities that often go hand in hand with facial and brain malformations. He encouraged us to take a trip to CHOP (Childrens Hospital of Philadelphia) to get a second opinion and that's just what we did. Andy just started his new job at Comcast (which is going great by the way!) so he could not go with me. My parents and sister came up from Lancaster to be at my house by 5:30 am and my dad and I were off the Philly while the ladies stayed behind with Gwen.
After a very long day which included an hour long MRI of Olivia's brain, a two hour long level 2 ultrasound and an echocardiogram of her heart showed that our precious baby indeed does have a very severe brain abnormality and the cleft lip. Her condition is called Holoprosencephaly which is when the top half of the brain, the cognitive part, fails to develope into two mirrored halves. Because of her facial malformations this almost definitely points to a chromosome abnormality called Trisomy 13. This diagnosis is based on just physical findings and an official diagnosis would have to come from an amniocentisis. I asked the doctors how sure they were that this was what was going on. Like 90-95% sure? They didn't give me a number but said yes it was pretty high up there. They also told us that because of the extra genetic material Olivia has an extra digit on each hand and foot and her eyes may or may not have formed. Many children born with this condition are blind. Olivia will not live long. Only about half of babies with this even make it to birth so there is a decent chance of her dying in the womb. If she is born alive she could live only minutes, hours, days...we just don't really know how long. The doctors encourage me to terminate including the fact that it would be better for my health. I of course asked why and they explained that any time you carry a pregnancy it's hard on your body and yada yada yada. I asked if this pregnancy would be any harder on me than if the baby was healthy and they said no and kinda backed off. Andy and I had already decided before we new any for sures that no matter what, unless my life was in danger, we would do anything and everything that we could for our child and that it was up to God to take her when He wanted to. He has created her the way He wants her and this has not been an accident or a typo in the blueprints. She is His child, His creation and this is all in His plan for us. No that doesn't make it easy, ok, or good. It's a terrible, devastating situation.
How are we doing? We've had a few weeks to somewhat sort things out. It's taken a lot of prayer for me to feel that I really can do this even though there has been/will be so much hurt. Truth is I'm terrified. Everyday I wake up just waiting for the next kick to know Olivia is still alive. All day I think about what's going to happen when she gets here. How long will she live? Will we have a funeral for her? What will she look like? Will we be bringing a baby home? Andy is taking it in stride. He is sad but it's also hard for him to really connect with the situation because he isn't the pregnant one. He doesn't gain the weight, suffer with the heartburn and feel the baby move. We have a made a commitment to pray together about this every day. We are both praying alot throughout the day but coming together has been a blessing and it is strengthening our general prayer lives, I believe.
There are so many other things that I could share right now but this entry has been long enough and I will leave them for another time. We know there are so many praying for us and our little girl and believe me, we have felt it! How can you pray? Pray that we will continue to feel comfort and peace. Pray that we will remember the testimony we have in this and most of all pray for our darling little girl's healing. Her name is Olivia Hope and we have lots of hope! Hope in Christ that this is part of His perfect plan for us even though we don't see it yet. Hope in Him that He will carry us through it and hope that He IS still a god of miracles and He can heal her! He can and as an act of worship, knowing full well that what I ask for is fully possible with Him and it's how He would want me to pray, I pray for her total healing. I know that many of you are too and isn't it beautiful that we CAN do that?! He is not done yet and we will pray and wait.


  1. The strength He has already given you is unbelievable to me. I shouldn't be surprised though right? He is so much bigger than this and praying for total healing is completely doable. Love ya girl, and I'm praying.

  2. All things work together for good to those who love God and are called according to His purpose. Romans 8:28
    We are praying for strength and comfort as you go through this. We are encouraged that you are taking this to the Lord in prayer each day. Love you all!!

  3. I love you Jen. We'll be praying faithfully for you, Andy, Gwen, and a God who is infinitely more faithful. His plan is perfect. If there is anything I can do for you, let me know!