Tuesday, September 9, 2008

Tuesday

"I wait for the LORD, my soul waits, and in his word I put my hope. My soul waits for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning. O Israel, put your hope in the LORD, for with the LORD is unfailing love and with him is full redemption."
Psalm 130:5-7

Not much change to report today. Lilah continues to improve and respond to the medicines. The ICU Dr. that checked them in saw them this morning and said he was very surprised at how well she is doing...really better than he ever imagined. He truly seemed shocked and said she has done the very best he could have hoped for. They were all quite thankful to her this. Lilah is nursing great now, another huge praise. There are no tests scheduled for today, chest x-ray and echo will be done tomorrow and EMG (electromyography) on Friday. They are asking that we all pray specifically that the EMG is "negative" and that this is not any sort of dystrophy (degeneration of muscles) or myopathy (muscle disease where the muscle fibers do not function resulting in muscular weakness). Her condition will be more complicated if this is the case, rather than just isolated cardiac defects. If the EMG is positive, they will dig deeper to find out more. Again, this test will be hard for Lilah, so pray that the Lord will comfort her throughout it.

A more exact term for her heart defect that is most concerning is "dilated cardiomyopathy with left ventricular noncompaction." Again, this in in addition to the ASD and VSD. Home health is coming to their house tomorrow to start to get things in place for Lilah to come home...monitors, medicines, etc. They are looking toward letting them go home Friday afternoon, this could certainly change...but, is somewhat of the goal for now. They will be glad to be home, but a bit apprehensive as well. They feel very "safe" at the hospital, and just want to be able to care for her well at home.

Paul and Gina continue to remain steadfast in the Lord, they are "believing" and praying that the Lord will "help their unbelief" Mark 9:24. They say they are doing "leaps and bounds better than any human could do on his own, and that truly they have been given grace they did not have before." They are continually giving Lilah back to the Lord, knowing full well that she is His...as are they. They are encouraged that at only 7 weeks, God has seen fit to use Lilah in such a mighty way. The solidity of their faith through this is amazing. They said they have always known that Garrett is such a sweet and caring little boy, and though this is certainly not what they had in mind for him as a baby sister, they know that he will love her fully, he is the perfect big brother for Lilah, and this is exactly what the Lord has for Garrett. Gina said, "I am not saying that this is what we want...I would love to give it back, but we feel prepared as a family." Oh sweet Gina.

A group of girls met last night to pray for them. This was greatly appreciated and felt by them. They are still feeling very tangibly loved and interceded for. They again say thank you for all the comments, cards, calls, etc...they are getting them all and it is very uplifting. Will continue to post as things change.

15 comments:

Anonymous said...

God is good! We will all continue to pray for more good news every day. love, The Hughes

daisyeyes said...

Continuously amazed at how the Lord is moving so greatly in your lives as you struggle through this, but so thankful to the Lord that He is holding Lilah so safely in his arms.

Anonymous said...

What a blessing that Lilah is responding to the medicine so well and is getting stronger. We are praying for you.
God Bless You,
Eric and Cara Hickle

The Henleys said...

We are still praying . . . Love you guys. Simon & Martha

Jessica said...
This comment has been removed by the author.
Jessica said...

thank you for the update. We are praying for the Burch family and hope for more good news about Lilah's recovery. Much love,
Jessica Mason

amy said...

Hi, Gina and Paul,

You may not recognize our names, but I am writing for the Porters - Amy, Russ, Chloe, Kaelin and Fiona, from Redeemer, - to say how much we feel for you, and are praying for you all and Lilah.
Being so close to a new birth in our family, I especially empathize with the desire to keep your newborn "safe," and to know you are able to care well for her at all times. What a blessing that she can nurse well now; I can only imagine what a comfort this is for both Mama and daughter. I will pray for Lilah especially as she undergoes this week's tests. May God give her strength and resilience, and you as parents even more of His overwhelming peace
("that surpasses all understanding...")and meet all of your needs day by day.
We are lifting you up, and praying for a good report, for mercy, miracles, and more healing!
love, Amy Porter

Anonymous said...

Hey Gina. It's Erin Lilly. My mom works in the NICU & will try to make it over to see you- she is quite familiar with the proceedures and such. She said that the test/proceedure that will be done on Friday is not that painful for her & not to worry. She will do just fine. I am praying in faith that God will touch & heal her body. Everything will work out for good- 'for those who love God and are called according to His purpose.' (and I know you are)

Anonymous said...

I try to sleep but wake up every hour since she has been in ICU. I pray seriously more now than anytime in my life without ceasing. I understand that term more than EVER!~I love little Lilah so much-i know the Lord loves her more than anyone on this earth could. Paul&Gina you have taught us so much about trusting the Lord and How to be amazing parents that put the Lord first even when it is hard!!!!!
love, anut liz&uncle seth

Elizabeth Myatt said...

"I know what is is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength." Philippians 4:12-13

Praying tonight for His strength to be sufficient. Loving you and missing you.
Lizzy

The Leonards said...

Woke up this morning with Lilah on my mind. Hope she had a restful night (and mama too:) last night. She is such a little fighter. Praying the Lord's peace and grace fill you to overflowing throughout this new day.
"Satisfy us in the morning with your unfailing love..."
Ps. 90:14

Anonymous said...

Paul & Gina,
We are praying daily for Lilah and for continued strength for you and your family.
Rob & Stacy Williams

Anonymous said...

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will. Romans 8:26-27

Praying both day and night for you. Praising God for Lilah's improvements. Love you! Jill & Steve

Rachel Sara said...

Praying for a restful day for you all!

"I sing for joy at the works of your hand...forever I'll love you, forever I'll stand...NOTHING compares to the promise I have in you!"

Love Love!!

Anonymous said...

your dear family is on our hearts and in our prayers morning, noon and night. praying for you and the doctors as they further evaluate Lilah, and as they/you consider transitioning out of icu and hospital.

"Be still, my soul: the Lord is on your side;
bear patiently the cross of grief or pain;
leave to your God to order and provide;
in every change he faithful will remain.
Be still, my soul: your best, your heavenly Friend
through thorny ways leads to a joyful end."
-Katharina von Schlegel, 1752

we love you!!
emily harriman