Tuesday, August 25, 2009

Lydia Update #1

This first entry was posted to facebook August 21, one day after Lydia was born.

Sorry that we’re lame and are going to do this via facebook instead of calling all of you wonderful, kind people who have been praying for us and our sweet little girl. It’s a bit much to think about trying to get in touch with everyone and telling this several times over. Lame or not, this is what we’re doing. We’ve not been trying to keep things a secret we just haven’t had time or brain power to get anything out to you. Feel free to tell anyone else you might know who would want to know.

Obviously you know that Lydia is here and many of you know that before she was born she was diagnosed with agenesis of the corpus collosum. DO NOT look this up on the internet. It will make you unhappy. We promise. We were told that the outcomes of what she has would be possible developmental problems later in her life and this is what we told many of you. We were not expecting problems with her delivery or anything else for many years to come. Things did not turn out this way.

When Lydia was born, they had pediatric doctors on call. They saw some concerning things in her including lethargic behavior and what looked like seizure activity. They took her away after we held her for a minute or two.

Initial reports the next morning were not good. We met with a neo-natalogist who was less than positive about what the future would hold for our little girl. Seizure activity seemed to indicate there was a bigger problem in her brain than was originally seen or anticipated. The doctors ordered an EEC (to monitor her brain function) and an MRI to get a better image of her brain. We spent much of yesterday in speculation and conversations with the doctors, waiting to hear the reports back from the pediatric neurologists.

We met with the neurologist this morning at 7:00am. Thankfully, there seems to be no other problem any where in brain and the seizure activity has stopped due to medication they currently have her on. These were all great things to hear because we now seem to at least have a cause for her seizures and lethargic behavior, as well as a growing plan on how to help her.

The rest of today was incredibly encouraging as well. In addition to having a ton of visitors (who graciously came and visited with US and not an adorable little baby) Lydia spent a good portion of today with her eyes open. She opened them and looked right at Micah for the first time! She also has been downgraded to a simpler and less involved machine to help her breathe. She can breathe on her own, she just needs a little stimulation. She also ate from a bottle for the first time today! She has had to have a feeding tube up until now.

I know this is a ton of information to digest, and I count you an incredible reader and friend if you’ve made it this far. We are encouraged every day to see her progress and are hoping for a little more each day. We greatly covet your prayers for our sweet little girl and for ourselves as well. One of the sweetest moments came when a social worker asked us if we had a good support system. “YOU DON’T EVEN KNOW!” we told her and went on to describe our own church family at Apostles and the Chapel and the church families of our parents at Calvary and Beacon Hill, as well as the family we have at CHS, in addition to all of you other wonderful people who just love us. We told her how deeply loved and prayed for our girl has been since long before her arrival and we’re so thankful for the testimony of what the Body of Christ can do.

Please don’t stop praying. We know that all the improvement we have seen has been because of the prayers happening on her behalf already, and can only imagine how much she will improve as she is continually lifted up. Though she is still in the NICU, we are hopeful to have her home early next week.

We are so thankful for our girl and for all that God is doing and teaching us in this time. We continue to seek His face, knowing that He will be glorified in all things in Lydia’s life, starting now.

We love you all and are so thankful for you. We might not answer right away, but we appreciate calls, texts or messages here. Your encouragement is such a blessing to us!

Thanks for reading!
Enjoy pictures!

Please feel free to let anyone who might be interested in updates know about the blog. The more people we have praying the better!

1 comment:

  1. I went right to the beginning to read about you. I am praying for you. Reading your story is like History repeating of my own story.

    It is early days for you, continue to cry, cry for the healthy baby you lost, cry for the baby who was afflicted with such a terrible syndrome.
    Cry for yourself for your empty arms.

    I love you.