The story of Olivia Hope

Tuesday, December 15, 2009

Miracles will happen

We are praying for a miracle. I know you all are praying with us on this. We are also praying for strength, peace and comfort, guidance of course, but wouldn't a miracle be great?! I mentioned this to a group of friends that has been a big encouragement right now and one of them responded back that she would be praying this too and that miracles WILL happen. That was several weeks ago but I keep going back to that when I pray...miracles WILL happen.
We had a children's Christmas program at church on Sunday. They all did such a great job and I kept smiling thinking about when Gwen is that age and she can participate and do all the cute stuff that kids aren't supposed to do during the program. We all know it just makes the programs that much better! Anyway, one of the songs that the kids sang spoke about letting God into your life and watching the miracles begin. (I don't remember the words) There it was again! Miracles will happen.
We do serve a God of miracles. There is no doubt in my mind and that's why I'm praying so deeply for one...a BIG one. I think, though, that I've let myself believe that a miracle is something big, huge, ASTRONOMICAL, something so far out of our reach that we only see it when it's so big it practically hits us in the face. Has anyone else done that?

MIRACLE
1. an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
2. such an effect or event manifesting or considered as a work of God.
3. a wonder; marvel.
4. a wonderful or surpassing example of some quality: a miracle of modern acoustics.

(dictionary.com)

Miracle
an event in the external world brought about by the immediate agency or the simple volition of God, operating without the use of means capable of being discerned by the senses, and designed to authenticate the divine commission of a religious teacher and the truth of his message (John 2:18; Matt. 12:38)....
Thus, being out of the common course of nature and beyond the power of man, they are fitted to convey the impression of the presence and power of God. Where miracles are there certainly God is.

(biblical definition also from dictionary.com)

My thoughts are jumbled but what I'm trying to get at here is that if God promises to bless us when we turn our lives over to Him and He promises to show us many great things....what am I trying to say?! Basically this-Without doing a ton of research on the matter (just my findings on dictionary.com) we see that in both of these definitions, one biblical and one not, does it not specify the "size" of the miracle. Yes it's something beyond our human strength and yes it is something done by the power of God, but it's not always going to be something HUGE! All this confusion to say that I'm really being challenged to see how God is blessing me right now even in the midst of this devastation. I call it that because I AM devastated. I know it is part of God's plan for us and I know that all things work together for good for those that love God, but this
SITUATION is not good and I am devastated. But what miracles is God doing in my life everyday, that maybe aren't so big they're hitting me in the face, but maybe they are just the perfect thing that he's doing in my life today to show me that He is here, He is working, and He is telling me that He is not done yet?
We are still praying for a big miracle. We haven't felt that God is leading is to pray differently at this point. In the meantime I am also praying for the ability to see what He is doing right now that maybe I would otherwise not pay too much attention to, but maybe those are just the things that are getting me through the day. And they are miracles because I could not do it on my own.

(I apologize for my lack of good sentence structure and for the jumbled thoughts!! There are so many things running through my head that I want to share but it doesn't always stay organized!)

Tuesday, December 8, 2009

Heaven's Very Special Child

Just a small example of how people are thinking about us and praying for us is the poem that I am going to share with you all. Most of you know that my dad is a pastor and his congregation has been an amazing support through all this with their prayers and love for us. They have encouraged and blessed us in many ways. I don't know who but someone stopped in to give my dad a copy of this poem to pass on to me. It doesn't exactly fit our situation but it echos many of the ways that people are praying for us. It was written by a lady who is now in her 90's and had a daughter with disabilities. Her daughter is now gone but this woman continues to write poetry mostly for people with disabilities. Watch out, it's a tear jerker!

Heaven's Very Special Child

A meeting was held quite far from Earth; it was time for another birth.
Said the angels to the Lord above: "This special child will need much love.
Her progress will be very slow; accomplishment she will not show.
And she'll require extra care from folks that she will need down there.
She will not run or laugh or play; her thoughts will seem quite far away.
So many times she will be labeled "different", "helpless" and "disabled."
So let's be careful where she's sent - we want this child to be content.
Please, Lord, find some parents who will do a special job for you.
They will not realize right away the leading role they're asked to play.
But with this child sent from above comes stronger faith...and richer love
And soon they'll know the privilege given in caring for their gift from Heaven.
Their precious girl, so meek and mild, is Heaven's very special child."

No new news. Olivia still remains very active in me and we are still taking it one day at a time and praying for her healing and for strength, peace, comfort and also the testimony that we have right now. Thank you all for your love and prayers for us.

Friday, December 4, 2009

Another Day

I had a dr. appointment today. I was totally dreading it. It was my first apt. since CHOP and I didn't know what my dr. would say or want to talk about and I was also worried about my health. I had high blood pressure at the end of my pregnancy with Gwen so I was induced a week early. I had been reminded by Dr. B at CHOP that if that were to happen again I would be induced again and of course the earlier that would have to be done the worse the situation would be. However everything was fine. Well, everything except for the 25 pounds I've gained so far! (believe me I don't know how that is happening!) I saw my dr. that I've been seeing through this pregnancy so far and he was very kind and supportive of not terminating. He said I can continue to plan on delivering locally and we will talk later about what we would like for them to do for Olivia knowing that she may not have long. He also checked her heart rate like usual. He said that most babies with Trisomy 13 or 18 tend to have very inconsistent heart rates. Very up and down and all over the place. Olivia's has seemed to be pretty consistent and good! It doesn't mean anything but it's obviously not a bad thing. I also talked with him about whether or not to get an amnio. I mentioned before the only way to know for sure if it's a chromosome thing or just a developmental thing would be through an amnio. I thought I wanted one because I was also concerned about whether or not this would be a hereditary thing and could happen again. However the more I thought about it the more I realized that it would just add more stress and unnecessary events to our already stressful situation. Knowing doesn't really change anything. The outcome remains the same no matter what they find in an amnio. He agreed with the way I talked about it and assured me that from what they knew already about the situation I shouldn't at all worry that this would be hereditary. Obviously I already have a very healthy little girl and all signs point to this being an isolated event. This was very comforting for me to hear. All in all I guess it was good appointment other than the circumstances.
Please keep praying for everything I have previously mentioned and pray for my health. The high blood pressure really wasn't that big of a deal last time and it was only a week early that they induced. Just pray that I'll stay healthy so I can keep this bun in the oven for as long as possible (full term). I know this alone can't change Olivia's chances but it could help. BTW my due date is March 27th.

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.