Tuesday, August 25, 2009

Update - August 25

The past two days have been filled with ups and downs. Yesterday (Monday) they were able to take Lydia off the CPAP and put her back on the nasal canula (the smaller machine to help with her breathing). She slept much of the afternoon that we spent with her, including straight through her EEG. Emotionally, it was a rough afternoon. When she spends all her time sleeping, she won't try to eat and that's very frustrating for us. It's the one thing she seems to not quite get a handle on, so it was a little discouraging.

Then in the evening, our amazing God did what He so often does - He gave us something good in the midst of our difficulty. Babies are supposed to eat about 60ml per feeding and Lydia typically will take 2-3ml per feeding from a bottle. Last night, she took 8ml! She worked so hard and was exhausted after, but we were so proud of her. It was a wonderful way to end a difficult day.

Speaking of difficult days, today was also not so great. It was more an emotional day because the reality of what could be hit us pretty hard. The results of her EEG showed no more seizure activity (PRAISE THE LORD) so that means the medication is working. They tested her blood and her level of medication is a little high, so they're attempting to back off a little and we're praying that will make her a little more alert. The EEG showed what the doctors called "not normal background activity" which no one seems to be able to explain to us, because they're not really sure exactly what it means. It's obvious there's something abnormal going on, they're just not sure why or what's causing it.

We tried to feed her again today and she barely took anything (less than 2ml) and the doctor is starting to prepare us for what might happen should she not be able to figure out how to eat on her own. This was probably the most difficult thing to hear today and like I said, made things a lot more real for us. The afternoon for us at home was difficult, but God gave us some encouragement from Jeremiah 17:7-8: ""But blessed is the man who trusts in the LORD,
whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." In the midst of our uncertainty that we can handle this, we know He will give us all we need not only to survive, but to thrive as we seek Him.

Again, after a horrible day, God gave us mercy and grace tonight. When we arrived at the hospital, Lydia was off the nasal canula AND WAS BREATHING WITHOUT HELP! We FINALLY get to see her beautiful face without anything in her nose! She woke up a little and tried to eat - she ate about 3ml, but they gave her her medication before we tried to feed her and that always tires her out. We got to do Kangaroo Care, which allows us to snuggle skin to skin, so she can build up her antibodies and be comforted by being close to me. It's amazing, but when we're snuggled up, her breathing calms down and she moves around so much more than usual. She also woke up and stared up at me for a long time. When it was time to put her back in her crib, she cried! She pretty much never cries because she's so drugged up, so when she does use her little lungs, we get really excited.

So, there you go. A lot of crazy ups and downs these past couple of days and I'm sure that won't stop. What we really need prayer for now is for her to learn how to eat. She needs to be able to take the bottle or they will eventually need to put in a feeding tube before we can take her home. We're watching as our amazing God is performing miracles for her - she's breathing on her own - and we know that's due to so many people praying for her. Please don't stop! We love you all and are so thankful for you.

Thank you again for taking time to read.


  1. Really appreciate this guys. We are praying and can't wait to meet your little girl!

  2. Jen & Micah - We love the 3 of you and have been praying. Thanks for the pictures. Thanks also for blogging, as we have not yet joined the Facebook world.
    -Peter & Denise

  3. My mom wanted me to pass this along:

    "I am honored to have been told about your precious daughter...What a gift she has been in a very short amount of time...I will hold her up in prayer with confidence that Christ will perform miracles in her life...God Bless you and your family as you walk this new journey of faith called Lydia"

    -Aimee (Ambers friend)