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.