"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

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.

1 comment:

Renee said...

Hi Katie,
My name is Renee. I am a friend of Rachel and Steven Traweek. Rachel told me about baby Delilah's condition and since I'm an optometrist wanted if I knew much about the condition. If you ever need someone to break down the medical 'jargon' and help you understand what the doctors say, I would be glad to talk. Rachel can give you my phone number or email address. I wanted to let you know that I and the rest of my small group are praying for your family. God's specialty is in performing miracles and thats what we are praying for.