A picture of Lilah taken today by her Aunt Liz.
Friday, September 12, 2008
Test Results
The EMG was negative. Thankfully also, it was not too bad for Lilah. They could tell it hurt her...she got wide-eyed during the first needle stick and grimaced at times, but was actually able to sleep on and off through some of it. Obviously, they are glad this test was negative.
The other new development is that Lilah began having seizures in the night. Lilah had a few events yesterday that in retrospect may have been small seizures, but she had two full blown seizures last night. The first around 4am and the second an hour or so later. She has already had an ultrasound of her brain to evaluate due to the seizures and her brain is normal. She has also had an EEG to evaluate, they do not have the results of this yet, but she did not have any seizure activity during the test. They have also done bloodwork to try to find the cause of the seizures and it was all normal; furthermore, they do not feel that it is the cause of any of her medications.
After these 2 big seizures, it was hard for Gina to sleep...she just wants to sit and "monitor" her. Will post more as things develop.
**Update - The Neurologist just saw Lilah and said that he is not "convinced" that what she had was a seizure. It could have potentially been some type of "convulsion". Since the EEG did not show any seizure activity, he feels the need to "prove" that it was a seizure. So, Lilah will have a CAT scan to evaluate further. They do not know for sure, but can't imagine they will leave the hospital today. They say they feel completely covered in prayer and continue to say thank you.
Thursday, September 11, 2008
Good days and Bad days...
"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior..." Isaiah 43:2-3
There is not much change to report today. Lilah did have a Pulmonologist see her this morning. He said things were ok and felt that the current Dr's were managing everything fine. Though there is not any "bad news" per se, Lilah does not seem as well as she did yesterday. Her color is not as good, her heart rate has been increased intermittently and she has been sweaty at times. Paul says they can look at her eyes and just tell she is "sick" today. She is still "stable" and though she did not have any tests today (x-ray or echo), her Dr's do not anticipate that any of them would be much different than yesterday. This is just a "bad day." In light of this, they may decide to keep her at the hospital longer. She has been off of the oxygen for a while and is doing ok without it.
Paul kept saying that they love Lilah so much and that they feel so blessed to have her. Paul said he knows that Lilah will have good days and bad days...they are just coming to an awareness of what she has...and they are sad. He said that he and Gina have had different emotions at different times...that one will be up when the other is down and vice versa. They have been glad to carry one another through their "down" days. Gina did get to see Garrett yesterday and was thankful. They remain encouraged by scripture and say that they are constantly reading the words everyone is sending and reading them to Lilah as well. Paul kept saying how kind everyone has been from his work... that they have really given him the freedom to just take care of Lilah. He said this has really taken a burden off of him. Finally, Lilah's EMG is tomorrow from 8-9am. They will be able to be with her and are glad. They again ask for your prayers for that test specifically, as well as the results. Will update as we hear news.
Wednesday, September 10, 2008
Good News
"Because of 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
Good news to report, Lilah's chest x-ray and echo were much improved this morning. Her lungs look clearer and her heart is not as large. The echo showed that her heart is stronger and pumping "more efficiently" than when this began. The Cardiologist was very pleased and excited to deliver the good news. They are planning on moving Lilah out of the ICU today to a regular room and are working on weaning her off the oxygen.
The plan, at this point, is still to go home Friday after the EMG. Lilah will wear a heart monitor at home that will record her heart rhythms. She has not had any irregular rhythms thus far, and they are thankful for that. Since Lilah has responded to the treatment so well, the cardiologist's plan is to treat her condition at home with medicines for now. She was able to take all her medicines by mouth last night (as opposed to IV).
They are weary today. Paul said this good news has brought with it somewhat of a sense of relief... and for the first time, they feel like they can "let their guard down" a bit. He went on to say, that as they are able to begin to relax...they are exhausted. Gina said yesterday that she couldn't decide if time was moving fast or slow. She has not left the hospital yet, but was going to try to see Garrett today and was excited about that. Paul continues to speak of how the Lord had prepared them for this and he wanted to share something they had read in the weeks before Lilah's diagnosis. It is August 5th's morning devotional from Spurgeon's Morning and Evening. They are both constantly saying "thank you" for the love, concern, prayers, scripture, etc...they feel the support. Will continue to update.
Good news to report, Lilah's chest x-ray and echo were much improved this morning. Her lungs look clearer and her heart is not as large. The echo showed that her heart is stronger and pumping "more efficiently" than when this began. The Cardiologist was very pleased and excited to deliver the good news. They are planning on moving Lilah out of the ICU today to a regular room and are working on weaning her off the oxygen.
The plan, at this point, is still to go home Friday after the EMG. Lilah will wear a heart monitor at home that will record her heart rhythms. She has not had any irregular rhythms thus far, and they are thankful for that. Since Lilah has responded to the treatment so well, the cardiologist's plan is to treat her condition at home with medicines for now. She was able to take all her medicines by mouth last night (as opposed to IV).
They are weary today. Paul said this good news has brought with it somewhat of a sense of relief... and for the first time, they feel like they can "let their guard down" a bit. He went on to say, that as they are able to begin to relax...they are exhausted. Gina said yesterday that she couldn't decide if time was moving fast or slow. She has not left the hospital yet, but was going to try to see Garrett today and was excited about that. Paul continues to speak of how the Lord had prepared them for this and he wanted to share something they had read in the weeks before Lilah's diagnosis. It is August 5th's morning devotional from Spurgeon's Morning and Evening. They are both constantly saying "thank you" for the love, concern, prayers, scripture, etc...they feel the support. Will continue to update.
Here are a few picts Paul sent last night...
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.
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.
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.
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.
Sunday, September 7, 2008
Pray for Lilah
This is Elizabeth Myatt posting...a good friend of Paul and Gina's. They wanted to let all of you know what's going on with them. Lilah is in the ICU at Children's Hospital with what started last week as a cold and turned into a respiratory infection requiring IV antibiotics. After they were admitted to the hospital yesterday, they did a chest x-ray where it was found that Lilah's heart was enlarged. They then did an echo (ultrasound of the heart) yesterday evening and Lilah has been diagnosed with several cardiac defects. She has a ventricular septal defect (VSD - a hole between the ventricles), an atrial septal defect (ASD - a hole between the atriums) and Left Ventricular Non-Compaction (where the heart muscle is not "compact" and has many holes in it). The last defect is the most serious. Lilah is in congestive heart failure because of these defects and they are giving her medicines to manage the heart failure. They are going to start a central line (IV right to her heart) tonight, so they will be able to give her medicines and draw blood easily. They have had a very hard time starting IV's and drawing blood since they have been there, and it has been hard for Paul and Gina to watch Lilah be "poked" so many times, so hopefully this will be helpful.
Also, the Doctors feel like that there may be a "bigger picture" to all of this. They are consulting with Neurology and Endocrinology to run more tests and see what else may be going on. As far as treatment, right now they are working to stabilize her heart with medication and continue to run tests for more information.
When I talked to Gina, she said, "I just wanted you to know that I am ok," oddly enough...I believe her. She had a strength in her voice that a determined mother has. She said that of course, they are scared and she is working to not feel hopeless already. I think this has all just come as such a shock. She said that it is hard to not "roll the tape forward" and wonder what the future will be for her, Lilah, Paul and Garrett. She said also, that she is so thankful for Lilah and who she is, and that she knows that God is good. Finally, she said she knows that Lilah is God's child first, but of course this is not what she had in mind for her.
They are able to stay with Lilah in the ICU and are thankful for that. Gina's mom got into town this afternoon and of course Paul's family is there. They are all taking care of Garrett. If you would like to visit, you can call Paul first and see if it's a good time. (If you do not have his number, leave your e-mail address in a comment and I will send it to you.) You will not be able to see Lilah since she is in the ICU, but you can stop by the waiting room and visit with Paul, Gina and the family. They will be honest if they are busy and it is not a good time to visit, but the few visitors that they have had have been encouraging...it's always good to see a friendly face. Gina told me several times that she felt sorry for people, because she knew no one knew what to say and she didn't either. It's not about having the perfect words to say to them, I think just the physical support of seeing people they love will really lift their spirits. I think it will also be very encouraging if you leave them comments on here.
They are going to send updates so I can post and keep everyone updated until they can take it over. I will let you all know of things as soon as I know. Please pray for Lilah and her sweet family.
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