Monday, September 29, 2008
My biggest baby turned 2 on Sunday! I love this age... truly straddling the gap between baby and little boy. He is just the most precious thing... beautiful, brilliant, funny, tenderhearted, and kind (mostly). We love him fiercely and are so thankful to be his parents!
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Thursday, September 25, 2008
his faithfulness continues through all generations"
Monday, September 22, 2008
Sunday, September 21, 2008
Saturday, September 20, 2008
Thursday, September 18, 2008
Tuesday, September 16, 2008
The joy of my heart, and the boast of my tongue
thy free grace alone from the first to the last
has won my affection and bound my soul fast
Without thy sweet mercy, I could not live here...
sin would reduce to utter despair
but through thy free goodness my spirts revived
and He who first made me, still keeps me alive
I have listened to this song a thousand times in the last 10 days...begging for His goodness and mercy. The Lord has heard our cries and answered our prayers. Lilah sleeps peacefully as I write. She is beautiful and her life is more precious and fragile than I could have ever imagined. We have been dealt some terrible news over the course of this nightmare, and we are brokenhearted. We have wept until the tears dried up and wept again. My darkest fears for my children never came close to this. I could write forever, using every synonym for pain and sadness....and yet, there is incredible hope.
God has filled our hearts with promises from His word and we claim those for Lilah. We do not know what the future holds medically. But we do know that she is a child of God, He loves her deeply (far beyond we ever could), and He holds her tightly in the palm of His hand. Lilah is a good and perfect gift and we are honored to be chosen as her parents. We know the Lord has plans for her life, however long it is, and has already used such a tiny baby to change hearts.
There will absolutely never be enough words to thank every single one of you for your commitment to pray for our daughter. Lilah's life, and our life, has been changed by it's power. We have experienced His love through you, the Body of Christ, in such real, tangible ways. We have felt His spirit in the room with us during even the darkest hours. God has taught us that He is good, loving, and full of mercy. And, He is continuing to teach us about trusting Him and finding peace.
Disolved by thy goodness I fall to the ground
and weep for the praise of the mercy I've found
Monday, September 15, 2008
Saturday, September 13, 2008
Friday, September 12, 2008
Thursday, September 11, 2008
"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 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.
Tuesday, September 9, 2008
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
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
Saturday, September 6, 2008
this is the hot toy right now....the duck sings "if you're happy and you know it". garrett is dancing with his constant companion "monk".
lilah is getting bigger...smiling, getting rolls of chub, looking at toys, and fighting through her first cold:(
Thursday, September 4, 2008
here are some pics of the first day of mothers day out. this was the best i could do:) i tried to get garrett to hold his backpack, but b/c paul wore it to demonstrate he says its "dadda's paapaa". we have had a few tears, but overall i think he likes it. it is great for me to have a few hours to do some chores (grocery, cleaning) and eventually maybe some fun things:) and , it's really good for garrett to get out of the house and play with some other kids. i love to hear new things come out of his mouth....other than a few things he learns from my parents, most everything out of his mouth, until this point, is something i (or paul) taught him. it's sweet to hear some (very broken) recount of his time there and try to piece together what they must have done.