Monday, September 8, 2008

Monday Update

"Lift your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one, and calls them each by name. Because of his great power and mighty strength, not one of them is missing. Why do you say, O Jacob, and complain, O Israel, "My way is hidden from the Lord; my cause is disregarded by my God"? Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isaiah 40:26-31

Paul and Gina wanted me to start with these verses because everything they believe begins with this promise. With that said, Lilah is a little better this morning. They have talked with the cardiologist again and are a bit more encouraged. Lilah's chest xray and echo looked better this morning, her lungs were clearer and her heart did not look as enlarged. This means that she is responding to the medicines they are giving her for the heart failure. They talked to the cardiologist a long time about what these defects mean for Lilah in the long run--specifically the noncompacted left ventricular cardiomyopathy. How can she live with them? Will she have limitations or not? Will her cardiac output be adequate or get worse as she grows? Basically, the lining of her left ventricle is very uneven, causing the beating not to be uniform. Paul said it is too early to know the answers to these questiions at this point. It is kind of "wait and see" for now, however it is good that Lilah's body is responding to the medications so positively.

The neurologist came also. He thinks that Lilah looks "okay." He is maybe a bit concerned about the weakness of her cry, but it doesn't necessarily mean anything in and of itself. All of her cranial nerves are intact and she tracks well. He would like to do an EMG. This is a test that will evaluate her muscles and give them a guide as to what to look for in genetic testing. It could potentially tell them if Lilah's illness falls under any type of "dystrophy." This test is painful and they cannot sedate Lilah because they will need her to respond. Paul and Gina have asked for this maybe to be done on Thursday, just to give her a break for a few days. They would like the information that this test would provide to guide the physicians in their care for Lilah, but it is hard to think about knowingly putting her through this pain. All in all, they were glad that the neurologist did not identify any definite abnormalities and will be awaiting further testing in this area.
As far as endocrinology goes, things seem to be fine also. Lilah's PKU at birth was normal and they have not detected any other metabolic disorders from the blood drawn at the hospital. So they have essentially ruled out abnormalities in this area.

They have not been able to hold Lilah for the past 24 hours. This morning they got to hold her and Gina was nursing her while we talked. She was thankful for this. Paul said they talked about how they felt that God, in His sovereignty, had prepared them for this in the past few weeks. They had both been reading about whether God is sovereign only in good things or in all things. They both know that God is sovereign over all things, good and bad. They know that He is sovereign over Lilah and her sickness. They are comforted in this, and even though they don't understand, they believe that God is good. They were definitely thankful this morning for better news, and it was so great to just hold her and feed her. Lilah seems to feel better, they feel like she knows they are there, and they are doing as well as they could be doing. They feel very tangibly loved by the Lord...they are surrounded by believers at the hospital. The staff at the hospital has been great...so enouraging and hopeful as they walk alongside Paul and Gina through this...this has been such a huge blessing. Gina said she can't imagine how it would be to be in a dark, hopeless environment. The people they are surrounded by at Children's know miracles happen and are a light through this dark time.

They wanted to thank everyone for all the calls, texts, emails, and gifts. They are overwhelmed by the support and feel lifted up in prayer. At this point, the goal is to see Lilah improve enough to be able to take her medications orally and be able to go home and see where things go from there. We'll continue to update as we know more.

22 comments:

Rachel Sara said...

Still praying!!! What an amazing example your family is during such a hard time...I pray God gives you strength every second of every day! Love you!

Teal and Rich Fulford said...

Paul, this is Teal Fulford. I was so sad to hear about your little girl. Rich and I would love to help in anyway. I have worked for several years as a pediatric Physical Therapist and am willing to help you with anything that I can. We are praying for you all. Our home# is 288-3132. We just moved back to Knoxville last year so would also love so see you and offer any support we can. God's grace is sufficient.
Blessings, Teal and Rich Fulford

Anonymous said...

God's grace is so evident in your attitude through all of this. I give Him praise for the small improvements you are seeing and pray that good reports will continue. Please let us know if there is anything we can do at all. We love you guys and are continually praying for you.
~April Grimsley

daisyeyes said...

Amazed by the Spirit of Christ so evident in you as you struggle though this. Continue prayer and thanksgiving for the little bit of good news.

Elizabeth Browning said...

Gina, Paul and Garrett, Lou and I keeping you in constant prayer. We were so sad to hear this news but know God has sent his angels to watch over your family. Please let us know if we can do anything.

tom said...

Ashley forwarded this on to us and of course we will be praying for Lilah and the Burch family...we love you guys ...Patti Bounds

J. K. Jones said...

Please let everyone know that our church in West Tennessee is praying for the Burch family.

I wish I could be there to help.

I may get a chance to this next week.

Concerned Uncle-in-law,

JK

Wright Family said...

Paul and Gina,
We're praying for Lilah and that God will give your family peace and strength.
-Nathaniel and Rebekah Wright

Elizabeth Myatt said...

Lifting up Lilah again tonight. You are truly on my mind constantly. Lilah and Garrett are so blessed to have you as parents...so wise, calm, confident. April said that many people met and prayed for you tonight, what a gift. Wish I could have been there with them. Will talk to you in the morning. Night night.

Anonymous said...

Hi Paul, This is Rusty and I got your message. I will pray and cry out to God with you for lilah.
In Christ,
Rusty

Anonymous said...

Hi, my name is Shannon Schupp and my daughter Maeve is in the Mon-Wed young 2's class at St Marks. We heard about sweet Lilah and I just wanted to let you know we are praying hard and strong for her! Our thoughts and prayers are with you.

Johnson Party of seven! said...

Hi Gina and Paul-
You don't know me. Lyn Collier (a neighbor of yours) gave me your blog so I could be praying for your sweet baby. I went to Bearden with a Paul Burch but I am not sure if its the same Paul. ( my madien name was JIll Jeffers). ANYWAY... I have a daughter who will be one on Thursday who has a couple of the same defects that your daughter has. VSD and cardiomyopothy. It has been a very LONG year but by the grace of God, we will be celebrating her first year of life this week! We are patients of Dr. Bremer and Dr. Jennings and his wife Marianne are friends of ours. The cardiologists here are so great.
I am so sorry that you have to go through this but SOMEHOW it is part of God's perfect plan. I will join the many others in praying for Lilah. I can see that you have many friends who will be helping out but if there is ANYTHING we can do, I hope you will contact us.
God Bless,
David and Jill Johnson
www.caringbridge.org/visit/huttonjohnson

notes from em said...

Because the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:22-23
we love you all sweet friends, and you are constantly on our hearts, in our prayers and in our thoughts.

Anonymous said...

Praise God that he gave Lilah and Garrett such wonderful parents on Earth to watch over His babies!Paul and Gina, your strong faith will carry you through this difficult time. It is obvious that He is walking with you.

Praying for healing and strength,
Beth and Sam

Laura Jones said...

Dear Gina, Paul, and Garrett - just wanted to let you know that I'm praying for Lilah and for your whole family- that you will know His peace and and feel his loving arms around you.

Love in Christ,

Laura Jones

Anonymous said...

Paul and Gina...The Pegrams are praying for sweet Lilah..we thank God for His presence and care and nearness to you during this time..look forward to seeing God's hand in all the details...We serve a mighty God!

Rachel Sara said...

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."

Isaiah 41:10

Praying for you all constantly!

Beth Hamilton said...

Paul and Gina,
We continue to carry you, Lilah, Garrett, your extended family and your doctors before the throne of grace. It is EVIDENT that Jesus is drawing you close to Himself and I am so thankful for that! He will NOT leave you or forsake you! We will wait expectantly for good news!

Love,
Beth and Mike (Hamilton)

Amy said...

The Myers Family and the Park Hill Church in TX continue to pray for all of you, especially Lilah.

Thank you for your willingness to share your journey. You have no idea how many people this could touch and what an example of a family of faith you guys are for even complete strangers who stumble upon this blog. Praise God for all the ways I know He will use this for good!

Anonymous said...

Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress. I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. Psalm 62:5-8

Praying that God would continue to sustain and draw near to you; Praying for His comfort, mercy, great power and for him to heal Lilah.

We love you! Jill & Steve

The Leonards said...

we are continually praying to our mighty God for sweet Lilah and for your whole family. we love you friends,
frank, laura and sam

Anonymous said...

Paul and Gina, We are all praying for you and Lilah. You have a very strong little angel and God is with you. If you need help Gina in any way, I will fly out anytime. Just say the word. We love you. Aunt Sheila, Uncle Larry, Ashley and Amanda