The roller coaster that is Peters Anomaly

Wow. We have been busy. Since my last blog we have had 2 EUAs, 2 office visits, and an almost surgery. After Georgia Kates EUA where her pressures were up she was placed on cosopt BID. It worked but not for long her next EUA her pressures were great. We were pumped. Yay good news! After that EUA we found out that DR Hamill would be out of town for a week and a half. I was petrified. She still had her stitches and they could need toncome out at any point. Well after two visits with his partners for red eye while he was gone the stitches were ready and Praise Jesus he was back to take them out.

The stitches came out great but her pressures were high. Extremely high. 40 in both eyes. Ashton and I were heartbroken. Dr Hamill sent us that day to see Dr Chang who is a Glaucoma specialist. He was super nice and informative. He wanted to place a shunt the next week in the right eye, meanwhile he added another drop to the cosopt to attempt to bring the pressures down before surgery.

The weekend was long and ominous. We new surgery was immenent. We worried about her cornea and pressures and all from a hotel room in Houston. 6 nights is too long to be gone from home. Surgery morning I was sick. They were going to remove her lens and place a shunt. She was in the OR for about 45 minutes when DR Chang came to talk with us. He took us to private room which scared us to death. He started by saying do you want the good news or the best news. WHAT?.... So come to find out her pressures were great. Meds were working. No valve placed and no lens removed. YES!!!! GOD is faithful! So we left Houston relieved. Next on the agenda left transplant and praying for good pressures. Transplant this week!

Glaucoma

Well weve had a rough week but things are getting better. Tuesday Ashton and I noticed her eye was bigger than the other. We took her to see our local eye MD and he checked her pressures in her operated eye. It was high so he and Dr. Hamill decided to place her on drops for glaucoma. Georgia Kate had an awefull reaction that scared us to death. We got to houston for her EUA and Dr. Hamill checked her pressures again and confirmed that yes she does have Glaucoma but the cornea looks good. So good and bad news. He put her on a new drop that so far has not caused any reaction. We are praying that this med will bring her pressures down so we can avoid surgery. We will travel back to houston to Texas Childrens monday for Dr. Hamill to remove her stiches tuesday and to check her pressures again. PRAYING FOR LOWER PRESSURES!!!!!

Back and Forth, Back and Forth

Houston, a four hour drive, one way. UHHHH. But we will be making this drive ALOT. We see Dr. Hamill every week and have EUA's (exams under anesthesia) every other week. So far all have gone well. Pressures have been good and cornea looks great. Her pupil is very large so Dr. Hamill is somewhat concerned of that. We will leave again for Houston on Wed for her EUA. Keep us in your prayers.

Surgery

We left Houston with a plan. We now knew that Georgia would have surgery and when she would have it. I immediately thought, I need pictures. I wanted newborn pictures of my sweet angel before surgery. I wanted pictures of her as God sent her to me. There was a small problem with that. We would only be home two days before heading back to Houston. The only day we could do the pictures would be Sunday. My dear friend Mary was on it. She found a wonderful girl who agreed to come to our house on Sunday morning. Thank you so much Sara, you did a great job! The pictures of Georgia are amazing. (will post soon). While we were in Houston my amazing friends stepped into action. They began the "FIGHT FOR SIGHT GEORGIA KATE" campaign. I can never express how thankful Ashton and I are for every single one of you who have been a soldier in Georgia Kates fight. You are all angels sent from God to help this little one see all that God has blessed us with. WE WILL FOREVER BE GRATEFUL!
Surgery day came around very quickly. I awoke that morning with a heavy sick heart. I was scared to death. My little one was so unaware of what was about to take place which made it even harder. We arrived at TCH at 8 am surgery was to start at 10. We quickly began the preop suffle. Waiting, Waiting, Waiting. Praying that she would sleep through her next feeding. Anesthesia came and explained her procedure which just made everything worse. Dr. Hamill then came for us to sign consents. Told us he would take the cornea and possibly the lens, iris, and if need be the gel behind the iris. WHAT? The IRIS???? What will her eye look like? Ashton quickly reminded me it doesn't matter as long as she can see. The sweet nurses took her out of my arms and I lost it. The surgery would take approx 1.5 hours. Let the count down begin. We had some family and amazing friends with us who took our mind off of the time. When Dr. Hamill came out my heart skipped a beat. I was scared out of my mind. He quickly stated " We got lucky today". With a smile on his face. AMEN!!! He only had to take the Cornea. However I know it wasn't luck, it was answered prayers. I told him I could kiss him which he said "I wish you would". Great sense of humor. So step one down and now the really hard part begins.

Texas Childrens

Ashton and I quickly became frustrated with the waiting game at LSU. Don't get me wrong as a nurse I do feel that LSU is a great medical center. However I wanted to be sure that we found the best that we could for Georgia Kate. After countless hours of research and speaking to as many people as possible we were more confused than when we started. To make matters worse we knew how time sensitive this was and we needed to find a surgeon that we trusted ASAP! Georgia Kate had an appointment with Dr Pace when she was 5 days old. I was still a complete basket case and cried non stop the whole time Dr. Pace was with us. He tried his best to calm me but nothing could help at that point. We were lost. Had no clue where to go and what to do. He suggested TCH (Texas Children's). As soon as we got home from that appointment, bili blanket in hand, I called TCH. I asked to speak with the opthamology department and was transferred to Dr. Yenns office. I explained to the receptionist Georgia Kate's diagnosis and she asked if we could be there in two days. TWO DAYS. LSU didn't want to see us for 6  weeks. So TWO days was awesome. I quickly got our things together and off to Houston we went. Two year old and grandparents in tow. We met with Dr. Yenn who confirmed her diagnosis and referred us to Dr. Hamill who would see us the next day. Dr. Hamill also agreed with the diagnosis and explained that he wanted to operate on Georgia Kate the next week. Next Week? I was shocked. She would only be 1.5 weeks old. He stated he understood that but that if he had an OR and a cornea he would take her back that day. WOW. It quickly set in that I would be forced to hand my 1.5 week old over for anesthesia and surgery. Que the flood gates. Uncontrollable crying started again. We headed back home with a plan. At least we had a plan and were getting started. I didn't know whether that made me feel better of completely freaked out.

Happy Birthday Georgia Kate

June 15, 2011 at 8 pm Ashton and I head to the hospital to be induced with Georgia Kate. This was different than with our first daughter Mary Elizabeth (MEP) who I went into labor on my own with. The hospital that we were delivering at is actually the hospital that I work at and worked on the Labor Unit for 2 years. I was blessed to have my close friends taking care of me that night and next day. Neither of us got much sleep that night and the next day labor really started rocking and rolling. Georgia Kate was born at 1138 am. It was an extremely easy delivery that happened very fast. She weighed in at an estimated 7 lbs 6 oz and 19 inches long. Estimated due to the fact that the scales in the labor unit were not working well. She nursed beautifully immediately after she was born and was as beautiful as I dreamed. Ashton and I were on cloud nine. We now had two healthy girls to complete our family. Cloud nine quickly turned to fear and anxiety. As soon as I saw her eyes I knew something was wrong. The nurses called the neonatologist who came to take a peek. He called my pediatrician and the pediatric opthamologist. We thought it was cataracts but were informed that it was much worse once the opthamologist examined her. All I remember is him walking into my room saying "Its not cataracts, its much worse". "She has Peters Anomaly". "A rare birth anomaly that occurs in 0.04% of births". My thought was what in the world is that. I asked him point blank "Can she see?". His response was a quick NO. At that moment my heart was ripped from me. I began to cry hysterically and heard not much after that. Thankfully our entire family and close friends were there to listen for us. He told us that she would require corneal transplants and that even with that she may still never see. All I could think was will she learn, play, laugh, love, live a life that I had dreamed for her. He instructed us to stay of the Internet and treat her as a normal newborn. REALLY, dude you just told me shes blind and you want me to treat her like a normal newborn. Easier said than done. We did as instructed and stayed off the Internet, but we did however have our family researching for us. The MD told us we would be seen at LSU (our state hospital) that next week and meet with the corneal specialist and he would see us after surgery. All the research that was done showed that for Georgia to have the best chance at sight immediate intervention was needed. So we were extremely anxious to get to LSU and speak with this surgeon. We headed home two days later and had not heard from either the opthamologist or the corneal specialist. We were getting frustrated. To top it off MEP knocked her front tooth out the day we came home. LOVELY!!! At that point in my life I was sure I was an ax murder in a past life and that this was all pay back.

Georgia Kate

First let me start by saying I am not a writer. I can not spell to save my life. I am a mommy, a wife, and a nurse. I am starting this blog to allow people to follow Georgia Kates journey and to hopefully help other families going through similar situations. Georgia Kate Poole was born 6/16/11. She entered the world kicking and screaming, pink as could be. My pregnancy was normal with no complications at all. The moment I held her for the first time I noticed her eyes. They were a cloudy blue. The pedicatrician called the opthamologist who immediatly examed her and diagnosed her with Peters Anomaly. As a nurse I have never heard of this nor had my pediatrician. It is a rare eye condition that will cause Georgia Kate to be blind without treatment. The treatment for this anomaly is Corneal Transplant. To date we have had one Corneal transplant and will have the left eye done in 6 weeks. This is just a short intro to our story. I will post more as I get settled into the "blog" world.