After going to Atlanta and having our appointment with Dr. Lee, whom Aaron and I LOVE, I want a miracle. No more than I did before, but now with more HOPE that the possibility is still there! All I want for Christmas is for Lilah's corneas to heal and for her to see. Not much, just a mother's hope, prayer, wish and need for her child.
A little bit of information from our visit:
First and Foremost, thank you for your prayers. Dr. Lee is a very young, compassionate, encouraging, hopeful, smart, intelligent man. (ANSWERED PRAYER) I know that the Lord answered our prayer because I prayed for a Godly man and asked the holy spirit to be in Dr. Lee when we met him. He and all of his staff were very nice and welcoming. He listened to us and heard our concerns and did some new tests.Lilah has been diagnosed with Peters Anomaly.(See link below) She has very thick Corneas. On a positive note, her corneas are not completely opaque. Dr. Lee was happy that he could see some iris and some pupil. He was also happy that her right eye, like I have noticed, is less cloudy than the left. I told Dr. Lee that I believe that her eyes are less cloudy than they were at birth. He prescribed some steroid drops that may help with the scarring of the cornea.He said he has had an infant patient, with the same condition and level of cloudiness, that used the drops and never had surgery. The patient is now five years old and can see. I am praying that these drops are our miracle.PLEASE pray that the Lord will use these drops to heal her eyes without surgery. Dr. Lee wants to see us again on 12/31/08 at 10:30am to see if the drops are making any improvement.We are already on the list for a donor because the infants eyes are more tricky and need to be transplanted very quickly.
Aaron and I are asking for very specific prayers. Please pray that the steroid drops will help improve the cloudiness of her corneas. Please pray that Dr. Lee will notice a positive change when we return in 6 days. Please pray that this is our miracle. Our Christmas miracle. If the drops are not the method that the Lord has planned to heal Lilah, we pray that there will be a donor very quickly and Lilah will not reject the tissue. We are asking that this miracle will happen so Lilah will not feel pain.
We thank you for your love, support, and prayers.Here is a link to some information on her condition and surgery success,etc (this is not her doctor, but I wanted to give some insight to her condition, treatments, etc)
http://www.wrighteyecare.com/Peters_Anomaly.html
I believe that the Lord will heal Lilah. I know that she was given to us for a reason. We could not explain how she was conceived, but I have known all along that she was going to do something major with her life. I have to believe and trust that the Lord knows the plans for Lilah. The bible says,Jeremiah 29:11 "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."
I know she will see. I believe it.
I want a miracle!!! I pray that these drops help clear her corneas and that Lilah will require no surgery. I am praying for this miracle. I am living on HOPE and trust. I am also very aware that the Lord may have plans to heal her through surgery. I have to trust in HIS plans for her. I know we have a long road ahead of us. Have faith in Lilah. Have faith in the Lord. Have faith in miracles. Doctors know so much, but the Lord knows more. Someone will come to know Christ through this. Maybe many. Lilah was given to us to help heal the world. I believe that the Lord knew exactly what she would do and how many she would reach for him. I know that the power of prayer really works and that the Lord wants us to call on him. He wants to know we trust him. Ask specifically. He already knows what is in your heart. Don't be ashamed to ask it. Please ask that she be healed!
"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."
~Romans 15:13
~Romans 15:13
Thursday, December 25, 2008
Saturday, December 20, 2008
Brandon Heath ~ "Give me your Eyes"
"'Give me your eyes' is a song about my own convictions for wanting to see the world with compassionate eyes" ~ Brandon Heath
Questions from the kids
How do you explain to a six year old and a three and a half year old that their new baby sister cannot see?
Alex said, "But, she opened her eyes." and Sammie said, "Look Mommy her eyes are open so she can see."
(Eli is only 19 months so he doesn't get any of it, but he LOVES to kiss his new baby sister)
So, I explain to them that Lilah was born not being able to see. I continue to tell them how we cannot see her pupil through her very cloudy corneas....in Mommy's best version of speech they can understand...."Go look in the mirror. You see the black spot in your eye? Well, we can't see Lilah's black spot."
Sammie said, "Mommy, it looks like she has plastic over eyes."
Alex said, "If she is blind then why don't her eyes have X's on them like the books do?"
Once again, I try to explain her condition. I explain, as best I can, that Lilah needs new corneas, new windows for her eyes. The girls have been told that Mommy and Daddy have to take Lilah to a special doctor in Atlanta who will be doing surgery on Lilah's eyes. Sammie, ever ready to do something, wants to go..... while Alex, a Mommy's girl, doesn't want us to make the trip.
They understand so much to be so young. They pray for Lilah daily. Sammie's prayer, "Dear God, help her eyes for the Lord, Amen." So cute, so right. Alex is my worrier and thinker who doesn't vocalize her prayers as often.
The questions from Alex and Sammie make me so emotional. I am an adult and I have a hard time with all of this. I can only imagine what is going on in their minds. But, no matter what, the kids love Lilah. Eli points to her and says, "baby"and "Lilah" and rubs her head and kisses her. Sammie kisses her every minute, begs to hold her, and is so glad to be a big sister again. Alex loves Lilah. Tonight she held her, kissed her, and rocked her in our bed for the longest time. The whole time she held her, she kept telling Lilah, "You are so pretty." Then Alex looked at me and said, "She's so pretty."
Yep, My six year old summed it up. She is so pretty.
We are so blessed. God has given us four beautiful children. The last one is changing the world!!
Alex said, "But, she opened her eyes." and Sammie said, "Look Mommy her eyes are open so she can see."
(Eli is only 19 months so he doesn't get any of it, but he LOVES to kiss his new baby sister)
So, I explain to them that Lilah was born not being able to see. I continue to tell them how we cannot see her pupil through her very cloudy corneas....in Mommy's best version of speech they can understand...."Go look in the mirror. You see the black spot in your eye? Well, we can't see Lilah's black spot."
Sammie said, "Mommy, it looks like she has plastic over eyes."
Alex said, "If she is blind then why don't her eyes have X's on them like the books do?"
Once again, I try to explain her condition. I explain, as best I can, that Lilah needs new corneas, new windows for her eyes. The girls have been told that Mommy and Daddy have to take Lilah to a special doctor in Atlanta who will be doing surgery on Lilah's eyes. Sammie, ever ready to do something, wants to go..... while Alex, a Mommy's girl, doesn't want us to make the trip.
They understand so much to be so young. They pray for Lilah daily. Sammie's prayer, "Dear God, help her eyes for the Lord, Amen." So cute, so right. Alex is my worrier and thinker who doesn't vocalize her prayers as often.
The questions from Alex and Sammie make me so emotional. I am an adult and I have a hard time with all of this. I can only imagine what is going on in their minds. But, no matter what, the kids love Lilah. Eli points to her and says, "baby"and "Lilah" and rubs her head and kisses her. Sammie kisses her every minute, begs to hold her, and is so glad to be a big sister again. Alex loves Lilah. Tonight she held her, kissed her, and rocked her in our bed for the longest time. The whole time she held her, she kept telling Lilah, "You are so pretty." Then Alex looked at me and said, "She's so pretty."
Yep, My six year old summed it up. She is so pretty.
We are so blessed. God has given us four beautiful children. The last one is changing the world!!
Sunday, December 7, 2008
Anointing 12/7/08
Hi there all. Today at church the Elders prayed over Lilah and anointed her with oil. Aaron and I are really blessed to be a part of such a great church family. The Elders asked the Lord for exactly what we pray for each day. Rick, my old young life leader and long time family friend, knows my heart and asked the Lord to bring us another miracle. Jim, who baptized Aaron, was so gracious and told us how much he appreciated our faithfulness and knew that the Lord would bless us for asking for the prayers and anointing. Dennis, our friend and counselor, is such a calming soul who speaks from his heart in such a peaceful way. Aaron and I trust fully that the Lord will give Lilah sight some day. We trust in the Lord's plan. We admit to being very human and wanting her to be healed today, but we trust that Lilah will see. We are amazed at how God has already used Lilah to heal broken relationships. We are grateful for our amazingly precious baby girl. We are in love with her.
Saturday, December 6, 2008
The beginning 11/25/08
Our daughter, Delilah Hope Sharp, was born 11/25/08 at 7:39pm. She weighed 7lbs 13.4 oz. She was 20.5 inches long.
Aaron and I didn't know whether we were having a boy or a girl, so when Lilah came out we had the best surprise of our lives. She was beautiful, tiny, and so sweet. She was struggling to breathe, so I didn't get a chance to hold her for a long time. Her breathing finally improved and they let me hold her. The first thing I noticed besides how small she was, was her eyes. Lilah's eyes are a beautiful blue, but they were really cloudy. They kept telling me that it was the "goop" that they put in her eyes. Well, it wasn't just the "goop." Lilah's breathing was still erratic, so I forgot about her eyes and paid more attention to her breathing. Two hours later she was doing better and they moved us into the Mother/Baby room. We had a long first night of trying to nurse and learn to adjust to her outside of the womb.
The next morning our pediatrician came in to do her exam. He is normally very talkative, informative, and overly friendly.(We have 3 older children, Lilah is our miracle 4Th) When he saw her eyes he said he wanted to get a Pediatric Ophthalmologist consult. He said her "eyes weren't reflexing well. Other than that, she looks great." Our pediatrician didn't say much more. I knew, instinctively,that this wasn't good. I have been taking my children to this awesome man for almost 6 years. He was different.
The Pediatric ophthalmologist came in later that day. He had a very dry, matter of fact way about him. The nurse asked him if they should take Lilah out and he said, "No , we'll just do it right here." He proceeded to do the procedure on Lilah on my bed in the post-partum room, in between my legs. (Our pediatrician warned me not to watch what he did.) I held Lilah's hands and kept her still while she screamed bloody murder. He checked her eye pressures and used utensils on her eyes that looked like what the dentist uses to scrape plaque off of your teeth. My husband and brother-in-law watched as Lilah's eyes were poked, prodded, and rolled around. The entire time he is working on her, she is screaming and I am praying and crying hysterically. I was begging God to keep her safe and not let anything be wrong with her. The doctor said, "I'm almost done." Then he stood up and said, "I don't have good news."
He then told us that Lilah has Congenital Cornea Opacities. Lilah's corneas are blurry. She needs double Corneal transplants in the next 6 weeks. All I heard was WORD VOMIT. But I did hear that she may never see. At best we can hope for one eye. My baby that was 18 hours old has to have surgery. I was sick to my stomach. I cried hysterically. I wanted to wake up from this horrible nightmare.
My daughter may never see. How do you deal with that news? The truth is, my faith is what has held me up. I trust fully that the Lord has a plan for Lilah and that she WILL see some day.
My amazing, beautiful, petite, precious, little Lilah. My prayers have always been to have healthy, abnormality-free children. I have been so, very, very blessed. Lilah is perfect, in every way...she just needs two good eyes.
Lilah's first consultation is December 23 at Emory in Atlanta. We pray that this specialist is the person God will use to heal her. We pray many times daily that a miracle will occur. I pray that Lilah does not have the beginning stages of glaucoma. Glaucoma is the main side effect of the transplant surgery. We pray that her eye pressures stay low. We pray that she will accept the donor transplant and not reject it. We pray that the first surgery goes fantastic.(They will do one eye at a time.)
So, we are taking life one day at a time. We are praying for strength, wisdom, guidance, encouragement, and peace. We trust that the Lord has a plan and we await the miracles HE has in store for our family. Please pray for her. We know that the power of prayer really works.
Aaron and I didn't know whether we were having a boy or a girl, so when Lilah came out we had the best surprise of our lives. She was beautiful, tiny, and so sweet. She was struggling to breathe, so I didn't get a chance to hold her for a long time. Her breathing finally improved and they let me hold her. The first thing I noticed besides how small she was, was her eyes. Lilah's eyes are a beautiful blue, but they were really cloudy. They kept telling me that it was the "goop" that they put in her eyes. Well, it wasn't just the "goop." Lilah's breathing was still erratic, so I forgot about her eyes and paid more attention to her breathing. Two hours later she was doing better and they moved us into the Mother/Baby room. We had a long first night of trying to nurse and learn to adjust to her outside of the womb.
The next morning our pediatrician came in to do her exam. He is normally very talkative, informative, and overly friendly.(We have 3 older children, Lilah is our miracle 4Th) When he saw her eyes he said he wanted to get a Pediatric Ophthalmologist consult. He said her "eyes weren't reflexing well. Other than that, she looks great." Our pediatrician didn't say much more. I knew, instinctively,that this wasn't good. I have been taking my children to this awesome man for almost 6 years. He was different.
The Pediatric ophthalmologist came in later that day. He had a very dry, matter of fact way about him. The nurse asked him if they should take Lilah out and he said, "No , we'll just do it right here." He proceeded to do the procedure on Lilah on my bed in the post-partum room, in between my legs. (Our pediatrician warned me not to watch what he did.) I held Lilah's hands and kept her still while she screamed bloody murder. He checked her eye pressures and used utensils on her eyes that looked like what the dentist uses to scrape plaque off of your teeth. My husband and brother-in-law watched as Lilah's eyes were poked, prodded, and rolled around. The entire time he is working on her, she is screaming and I am praying and crying hysterically. I was begging God to keep her safe and not let anything be wrong with her. The doctor said, "I'm almost done." Then he stood up and said, "I don't have good news."
He then told us that Lilah has Congenital Cornea Opacities. Lilah's corneas are blurry. She needs double Corneal transplants in the next 6 weeks. All I heard was WORD VOMIT. But I did hear that she may never see. At best we can hope for one eye. My baby that was 18 hours old has to have surgery. I was sick to my stomach. I cried hysterically. I wanted to wake up from this horrible nightmare.
My daughter may never see. How do you deal with that news? The truth is, my faith is what has held me up. I trust fully that the Lord has a plan for Lilah and that she WILL see some day.
My amazing, beautiful, petite, precious, little Lilah. My prayers have always been to have healthy, abnormality-free children. I have been so, very, very blessed. Lilah is perfect, in every way...she just needs two good eyes.
Lilah's first consultation is December 23 at Emory in Atlanta. We pray that this specialist is the person God will use to heal her. We pray many times daily that a miracle will occur. I pray that Lilah does not have the beginning stages of glaucoma. Glaucoma is the main side effect of the transplant surgery. We pray that her eye pressures stay low. We pray that she will accept the donor transplant and not reject it. We pray that the first surgery goes fantastic.(They will do one eye at a time.)
So, we are taking life one day at a time. We are praying for strength, wisdom, guidance, encouragement, and peace. We trust that the Lord has a plan and we await the miracles HE has in store for our family. Please pray for her. We know that the power of prayer really works.
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