Cincinnati

Oh what a day! Yesterday we were taking Kallan to Cincinnati Children's Hospital to meet with the best TSC doctor in the nation. They have an amazing TSC Clinic at Cincinnati Children's and even though Kallan is doing so well, we wanted to go ahead and meet with the doctor to see if he could give us any more information and to already be established there, so if things to get bad the doctor will be familiar with us.

So, as always I caused us to be rushing to the airport because I am habitually late, Kallan cried the entire way to the airport and we were both starving. Fun times for the Windhams! We get to the airport, rush to check our bags and we see the flight has been delayed from 2 to 4 due to mechanical issues. That was fine with us. We just took our time getting through security got to our gate and decided to go have a glass of wine. (yes with our newborn, I know) Kallan was sound asleep after wearing herself out crying for so long, so things were going well. Until then our flight was delayed until 5.....ok another glass of wine....then it was delayed until 6.......no more wine, but getting really irritated. So, we decided that if it got delayed again we were going to call it a day and cancel. A newborn had no business being in the airport all day and weather was rolling into Cincinnati, so the longer it got delayed the more likely we were going to get bad weather delays as well. It got delayed until 7. So, we canceled our flight and got our money back. Canceled our hotel, rental car and doctor's appointment. Ben was supposed to leave from Cincinnati to go to DC, so he had to buy a new ticket. We could not get our bags because supposedly they went to Cincinnati on a different flight. Of course, right as we were getting home they called to say oops they were there and we could come pick them up. I just love Delta! (that was very sarcastic!) What a long day! We were so disappointed we did not get to meet with the TSC doctor, but we are rescheduling for March. I will keep you posted! Until then we are just praying Kallan keeps doing well and trying to start raising money.

My amazing husband

My husband who has never been afraid of anything, or anybody continually amazes me. He has never let anyone tell him he can't do something and he can do anything when he makes up his mind to do it. He has done many things that have made me so proud since we have met, but he has really stepped up and has been the most amazing father and husband since we found out Kallan's diagnosis.

The first thing he did was as he was sitting in a doctors office reading a magazine, he came across an article about the new Harrison Ford movie called Extraordinary Measures. The movie is a true life story about a father who's children were diagnosed with a very rare and fatal genetic disorder. He quit his job as an attorney and set out to find a cure for his children. He worked day and night and never gave up and he raised over $100 million and found a treatment for his children's disease. He saved their lives and the lives of many other children. It is such an amazing story. Ben was so moved by the article he read and he went right out and bought the two books about this man named John Crowley. He read the first book in a day. As soon as he finished the book he started working on a letter to him. I mentioned before that we are so focused on fundraising and raising money for TSC. Ben really wanted to talk to John Crowley and find out how he raised so much money so quickly. He finished the letter and Fed Exed it to him his first day back at work. We never intended to hear back from him knowing that he is probably being bombarded with letters just like ours and knowing he is now CEO of a major biomedical company AND just had a movie come out about him the day after Kallan was born. We had just planned to mail him a letter every week until we got his attention and got him to respond. Well, we were wrong. A week after sending the letter Ben got a phone call from John Crowley's secretary and John wanted her to schedule a call with Ben for March 2nd!!!! How freaking exciting is that!!! Think how many people would want to talk to this man, but would not have a clue to go about it. Ben never thought twice about it. He knew he would talk to him. He just didn't know when. I could not be more proud of him! I can't wait to hear how their conversation goes. Ben is so nervous about the call. He does not want to sound like an idiot, so he is preparing lot's of questions and doing a ton of research. I have no doubt that he will impress the heck out of Mr. Crowley!

Ben also got our first donation to the TSC Alliance last week! We were so excited! He had to take Kallan to her cardiologist appointment without me because I had the stomach bug that was going around and had to go to the doctor. It killed me not to be there, but he did great without me and so did Kallan. When he was in the waiting room, in typical Ben fashion, he started chatting with a lady there and told her our whole Kallan story. Ben has so much passion for finding a cure/treatment for TSC and making Kallan a success story that you can see right away when talking to him. He had the lady in tears right there in the waiting room. The next thing he knew the lady came and found him while Kallan was being looked at and gave him a check made out to the National TSC Alliance. In the Memo line it said "your beautiful baby". She told Ben that if he takes that beautiful baby with him everywhere he goes and tells the story just like he had to her - then he will raise that money. Ben and I were both so touched by this woman and she gave us so much hope that people will be touched by our story and want to give. They are so close to a treatment, so every dollar goes a long way when going towards TSC research.

As I write this post Ben is in Washington DC after being invited to the annual board meeting of the National TSC Alliance by the CEO of the Alliance. He called her up to let him know about his fundraising intentions and wanted to get any marketing material they had. I think the lady was blown away by his ambition and realized quickly that this guy is going to be a major asset to the Alliance. During their first conversation she asked him to be on a fundraising committee. I am so excited to have him at that meeting because I feel like we will get all the latest research information first hand. Ben spends SO much time on the internet researching TSC, so maybe this will give us some good information. We hope!

Most importantly Ben has been an incredible husband to me and daddy to our girls. He has really stepped up to the plate with this second baby. He helps me so much. He takes night feedings on the weekends, always gives Kensley her bath and has really become my teammate (cheesy I know!). Kallan LOVES to sleep in his arms, so every morning when she wakes up around 5 I feed her and then give her to him. She will sleep for 4 hours and sometimes more in his arms! I am so against kids sleeping in the bed with us, but I figure if the sun is up it does not count! I can justify anything for sleep. :)

When you marry someone you just never know how that person will act when faced with true adversity until it hits. You can be blown away by the way the handle it or really disappointed by it. I am so happy to say that I have been blown away by how Ben has handled it. He has truly been amazing in every way. Going through this has brought us even closer together. I am so thankful for him and all he does for us.

The first weeks home

It was so great to be home with our baby! She is such a good baby and so loving. She wants to be held and snuggled all day long, which can be good and bad! We figure she deserves to be spoiled for all she is going to have to go through, so we definitely spoil her and give her lot's of love. We will eventually have to teach her there are times where she just can't be held all day, but we will cross that bridge when we come to it. She sleeps great. At night she wakes up to eat every 2.5 to 3 hours and goes right back to sleep. I am pretty sleep deprived, but that is normal. Lately, my mom has been helping me get more sleep. She takes the late night feeding and I go to bed. Then I get up with her the rest of the night and morning. It definitely helps to be able to get 4 hours straight. I can't imagine how I would make it without my parents. They have been helping me so much. They even got Kensley potty trained while we were in the hospital!!! It means the world to me that they love my kids as much as they do. They would do anything in the world for them and I know that. We are very lucky to have them and have them so close!

Kensley is adjusting really well to not being the only princess. She even offered to share all her princess stuff with Kallan, which is huge for her. She loves on her all the time and is a great helper. I really thought she would be more jealous, but so far she is not much at all. She has had a few minor moments, but nothing major. I guess I under estimated her - she is the happiest child ever, so I should have known better. I think Kallan really likes her too. She never cries when Kensley is all over her "giving her love" and always responds to her voice. I hope they will be best friends.

We are in the easy time with Kallan right now and we know that. She is doing so well and we are so thankful for that, but the down side is that we are just waiting for the bottom to fall out. We don't know when or if she will have seizures, but we keep waiting for it. It is so hard because newborns make jerky movements all the time and do things that freak you out with a healthy baby. Every time she sneezes, gasps, breathes funny, moves suddenly, chokes etc we worry that it is a seizure. Seizures are very hard to identify in babies. They are called infantile spasms and they can be something as simple as raising her arms at the same time repeatedly, or a head nod. I finally went online and did some extensive research on infantile spasms and watched videos of kids having them, so I feel pretty confident I will know it if Kallan has one.

She had a great 1 week and 1 month check up. She has gained almost 3 pounds! We also went to the new TSC Clinic that just opened in January in Atlanta and met with the neurologist, Dr. Flamini, there. It is so great that they have a clinic in Atlanta now! They help me coordinate all her doctors appointments and keep track of all of Kallan's medical records. He was not able to tell us anything new. He confirmed she has one large tumor on her brain called a Sega and probably some of the small ones, but he could not tell us for sure because of the type of MRI they did in the hospital. She has another MRI scheduled for April, so we will know more then. She will need to have surgery to remove the Sega at some point, but we are just watching it for now. A lot of times they do not grow quickly, or at all. We hope she is that lucky. We also went to the cardiologist and her heart is doing fine. The tumors are not obstructing the integrity of the heart at all. We just have to have them checked every 3 months. In the meantime, we are just watching her every move and hoping that she continues to do well and trying to enjoy every minute of the easy times and prepare for the hard.

Labor & Delivery

My doctors all wanted me to have a scheduled induction so that I did not risk going into labor in the middle of the night and not having all my doctors there when I delivered. And when they found out we were driving from Eatonton to Northside, and hour and a half drive, they did not want to risk having me get stuck in Friday traffic and having my baby on I-20!

So, we scheduled it for January 21st when my favorite midwife was going to be on call. We were going in on the 20th to get things started so I could deliver on the 21st. When the 20th came I freaked out and wanted to back out and wait another week. I wanted to hold on to hope for one more week that it might not be TSC. I was just not ready to face it. But, my dad who rarely speaks his mind told me it would be foolish to wait and I needed to get my butt in there and have the baby. He knew I would not be any more ready a week from then. So, we went. Also, not by chance I believe, a girl in the Atlanta area who had a little 10 month old boy with TSC that was born at Northside called us that day. She wanted to tell us about her son who was told had the worst case of TSC they had seen at Northside. He came out having seizures and had to have a surgery on his brain at 3 weeks old. She told Ben that her son was now with medication seizure free and was doing great. She assured us that he was the greatest gift and such a blessing. Hearing what she had to say and hearing that Kallan could live a somewhat normal life with early intervention gave me some hope and the strength I needed to get to the hospital.

Aimee and Jim were at my parents house in Atlanta and they made a nice big dinner for us before we left. I said goodbye to Kensley, which was so hard. I cried the whole way to the hospital knowing that my sweet Kensley's world as she knew it was going to change and she was going to have to share me. She is my best buddy and I was so worried about her feelings. But, I should have known that she is a lot tougher than I gave her credit for and she handled it all better than I did! She LOVES her baby sister so much! That is such a huge relief to me!

Ok, so we get to the hospital and spent the first night there just preparing for the big day. My nerves went away once I got there. Ben and I just hung out and enjoyed our time together. Until we went to sleep and Ben snored like a mad man all night! Even the nurses were laughing at him! The next morning we got up, I took a shower and they started the pitosin. We were on our way.......we thought. It took me forever to dialate! Aimee (my sister) came to hang out with us and my mom came rushing to the hospital at noon freaking out that she was going to miss it, but little did we know we had all day. We started the induction at 7AM and by 5 PM when my midwife came in to check me I was only 2.5cm. We were starting to get nervous I was going to have to have a c-section. So, thinking we had a lot of time Aimee went to Brian and Laura's to hang out and Ben went to get something to eat. Of course, that is when all the sudden I felt like the baby was coming. The midwife came in and sure enough I was! We were frantic calling Ben and Aimee to tell them they better hurry because I was about to start pushing! They both made it back just and time. It was so special that Aimee got to be there for her birth. She is such an amazing aunt!

Just like with Kensley Ben was in full panic mode. He gets so emotional and nervous! This time was different though. It was not a normal delivery. We had NO idea what to expect when she came out. Would she be having seizures or go into heart failure?? They were both very real possibilities. All of the sudden as I was pushing I had a feeling of calmness and peace come over me. I felt like God was with us in the room that day and I could tell just by looking at Ben he felt it too. We did not even have to say anything to each other. I looked at him and he looked at me and we knew we would be ok no matter what. It was such a spiritual moment for both of us. I pushed for about 30 minutes and then she was here! They handed her to me and I just cried. She was the most beautiful baby I had ever seen. I know all moms feel that way, but she really was beautiful!!! And she just looked at me with the sweetest eyes and I fell in love immediately. She was my angel and she is going to be tougher than any of us and teach us all to be better, stronger and more faithful people. I just knew it.

They took her away to clean her up and start doing some tests. Her color was perfect, she was not having any seizures or showing any signs of distress. She was perfect! The NICU doctor told us they were going to take her to Transition in the NICU just to be cautious, but they thought she was doing so great she should be able to spend the night in the room with us. We were so excited! And that was exactly what happened. They did all the basic testing on her and she was doing great. So, a few hours after getting to my room they brought her to me to stay with me that night. They were going to wait until the morning to start all the major testing. It was such a great night! We just stared at her all night and marveled over all beautiful and sweet she was. She was so alert and just stared at us. Early that morning our pediatrician came in to talk to us after looking at her for the first time. He detected a very slight heart murmur, which we knew about but he said she looks great other than that. He seemed to think that if they CAT Scan came back normal then it was probably just an isolated tumor on her heart and it would go away over time and she would be fine. Hearing this got us so excited and totally got our hopes up. We knew better than to get our hopes up, but we did. All our months of worry was gone for the moment and we were enjoying our baby. It was so nice!!

That morning a nurse came and took Kallan away to start her testing. In between tests they would bring her back to us. Around noon my mom called and she was at the hospital with Kensley and on their way up. We were so excited for Kensley to meet Kallan and see how she would react to her. We took Kallan to the nurses and were going to have them bring Kallan in after Kensley spent a few minutes with us. When Ben was taking Kallan to the nurse our phone rang and I answered it. It was Dr. Weiss, the pediatrician, called and this was the moment all started....they had found tumors on her brain in the CAT Scan and needed to do and MRI to learn more. She was going to need to be admitted to the NICU right away and a nurse would be by shortly to get her. I hung up the phone and burst into tears. I had been so strong throughout my pregnancy and held it together, but in this moment I lost it. As soon as Ben walked in he knew what had happened and tried his hardest to console me and help me get it together before Kensley walked in. It was too late, just then Kensley walked in wearing her "big sister" hat and saw me bawling. She immediately started to try to take care of me. It was so incredibly sweet. She kept telling me to lay down and brought me my water. Of course, this made me cry even harder! Then Ben went to get Kallan and brought her in. Kensley loved her from the first moment she laid eyes on her. She jumped up in my lap and hugged her and kissed her. She wanted me to sing to her, but of course I couldn't because I was crying so hard, so she sang to her for me. She sang "Hush Little Baby". We got it on video. I will try to post it. It was the sweetest moment ever. Kensley got to see Kallan for about 5 minutes before a nurse came in to take Kallan away. She told us she would call us when we could go see her again, but it would be a few hours. My mom took Kensley to play with her cousins, so I knew she was happy and did not have to worry about her. That gave me and Ben some time to start processing everything. It was all happening so fast. One minute they said she was going to be fine and then the next she has tumors all over her brain and the TSC diagnosis is confirmed. It was a lot to take in. Over the next week Ben and I went through so many emotions and had a lot of meltdowns. Luckily never at the same time. When he was down I was strong and when I was down he was. It worked out well.

We finally got to go see her in the NICU and she had monitors hooked up to her, so it was hard to hold her. We got to stay there with her and hold and feed her until it was time for her MRI. Then we had to help the nurses hold her down so they could stick a tube down her throat to get a sedative in her. It was awful. After the MRI she had an echocardiogram and an renal ultrasound. Her kidneys are fine and they confirmed she had multiple tumors on her heart. In her first 24 hours of life she had a CAT Scan, MRI, Renal Ultrasound, Cardiogram and two major blood tests. She was so strong though. She never cried and throughout it all had the most peaceful look on her face. That night Ben and I did not get any sleep, so we were going on over 48 hours with no sleep and getting really tired, which did not help our emotional situation at all. Our last day in the hospital they told us we could stay until 11:59 PM. Kallan had to have her EEG that day to test for seizures. It is a 24 hour test and they were having a hard time getting the people there to do the test. Finally they got there and hooked what seemed like hundreds of wires up to her head and then wrapped them in a bandage. It was so hard to watch. All that day we could not hold or feed her. She had to just lay there for 24 hours. She still never cried. Finally at around 10:30 we were beyond tired and becoming emotional basket cases, so we decided to go home and get some sleep. Leaving the hospital without our baby was so hard. They wheeled me down and all the other moms were sitting there holding their babies looking so happy. My arms were empty and my heart was broken.

We got home and Kensley greeting us with a much needed hug and a kiss. She was so excited to have us home. She was so funny because when I was pumping she wanted to help, so she held them on my breast for me. Then she decided she wanted to make some milk for Kallan too, so I pulled the cords out of the pump and let her have a turn! The pictures are great! When we did bring Kallan home the first thing she did was run to the fridge to get Kallan the milk she had made her. Thank God for Kensley to make us laugh and smile during these hard times! It is hard to be sad when she is around.

Ben and I both got some much needed rest that night and woke up feeling refreshed and strong. We both decided we were going to do everything we could to give Kallan the best life possible and no matter what happened we would always have each other and our family. We went to the hospital and got some good news. Kallan was not having any seizures and not even having any electrical impulses that could suggest a seizure could be coming. And she was ready to go home! That was great news! Although we know seizures will probably start eventually we decided to celebrate the little piece of good news we got and enjoy our baby. So, that is what we did!

From the beginning

Ok, so I am finally breaking down and doing a blog. I realize now I should have started this a while ago. I put it off because of the time it takes and I am just not the best writer, especially with the distractions of a crying newborn, a two year old that requires constant attention and talks non-stop :), lack of sleep etc... But I am going to give it a go.



So, it all started when Ben and I went in when I was 30 weeks to get a 3-D Ultrasound just for fun. We had come across the pictures from when we had it done with Kensley and realized we would regret it if we did not do it with this baby. We went in the Tuesday before Thanksgiving and Kensley came with us. We did not have a name for her yet. She was beautiful! She had chubby cheeks and nice plump lips. Kensley loved hearing her heartbeat. We thought the lady was just being sweet to Kensley because she kept going back to look at the heart and let her listen to the heartbeat again. I remember thinking for a minute that it was strange that she kept looking at the heart when we were only there to see what she looked like, but when she didn't say anything I just forgot about it. We left there more excited than ever about our sweet baby girl. The next day we had gone to my parents house in Snellville to get ready for Thanksgiving when I got a phone call from my OBGYN. They called to tell me that the lady who had done our 3-D Ultrasound had called them because she had seen a "mass on her heart". When I heard this all I felt was pure shock. I had been told all along that I had a perfectly normal healthy baby. I thought it had to be a mistake and the lady did not know what she was doing. When I asked the nurse at my OB what it could be she just said they had not seen the ultrasound and there were a million different things it could be. She set up an appointment for Monday with a Perinatal Specialist and told me to try to enjoy my holiday. That was on Wednesday....I had to go all the way to Monday knowing nothing and worrying about all the what ifs. It was not a fun Thanksgiving! I just kept busy and did lot's of cooking and Christmas shopping with my mom. By Monday we had convinced ourselves that it was nothing.

Monday morning finally came. This is when we finally decided on Kallans name. After the ultrasound we were sitting there waiting on the doctor to come tell us what it was if anything. I really wanted the name Annabelle and Ben wanted Kallan. Kallan is Gaelic for "powerful in battle". I looked at Ben and said "if it is nothing her name is Annabelle, if it is something it will be Kallan. She will need a strong name". Well, her name is Kallan. It was something. The doctor came in and told us our baby had 3 tumors on her heart and there was an 80% chance our daughter has a rare genetic disease called Tuberous Sclerosis Complex. We had no idea what he was talking about. We had obviously never heard of TSC. He went on to give us very non-specific information about the disease and then rushed us on to meet with a genetic counselor. I'm sorry if anyone reading this is a genetic counselor, but that was the biggest waste of our time ever. She knew nothing about TSC other than what she had read on an article she had just printed of the internet for us. We left the doctor having no clue what we were dealing with. It was the worst feeling. I remember Ben and I going to lunch afterwards and just sitting there staring at each other. Neither one of us knew what to say or think. The next week was all just a blur. We went back to my parents and Ben immediately went online to learn more. I was scared to learn more. I did not want to know. I heard that we could be dealing with learning disabilities, mental retardation and autism and that was as far as I could get. I did not want to know how bad it could be. The genetic counselor had told us she knew of one girl who had TSC that was an attorney now and lived a completely normal life. I just focused on that. I wanted to focus on the best case scenario and convinced myself that would be us. Ben on the other hand wanted to know it all. The good, bad and ugly. He stayed on the computer 24/7 and learned everything there was to learn. Watched videos and reached out to others with TSC. He was really good at realizing what I could and could not handle and only gave me little bits of information at a time. He continued to do this throughout the rest of my pregnancy and just let me come to terms with the diagnosis on my own.

We were told it was TSC on Monday. We had to meet with the cardiologist on Thursday. We went into the cardiologist expecting to just learn how many tumors there were on her heart and whether or not she is having heart failure. I laid there for over 2 hours while the doctor examined the heart. Finally, he was ready to tell us his opinion. He told us he only saw one tumor on her heart. Two of them were actually connected and the third on was just "feedback" from the ultrasound. This meant that instead of there being an 80% chance she had TSC there was more like a 30-50% chance she has TSC. He thought it was just a single tumor that would have to be removed sometime after birth. We thought this was the best news we had heard all week. We actually thought it was a "miracle"! We were so happy that we had a chance for it not to be TSC. We went home feeling so relieved and basically celebrated the fact that she had just one massive tumor on her hear and not three. It was a good two weeks, but in the back of my mind somehow I just knew that the celebration was going to be short lived. I think I knew all along it was TSC. I just did not want to face it yet.

So, two weeks later when I was 33 weeks we went to the cardiologist for a follow up appointment. We had to see a different cardiologist because we missed our original appointment because I was in the ER with dehydration from food poisoning. We went in hoping and praying it was still just one tumor. No such luck. The doctor came in and basically said there was another tumor there, she had Tuberous Sclerosis Complex, Merry Christmas. He could see the devestation in our faces and did not understand it. He said "What, it's a better diagnosis. She is going to live". We did not see it that way. We saw it as we had faith that our baby could survive a one time surgery. We did not want her to have to face a lifetime of struggles. To be honest we felt sorry for ourselves as well for having to deal with the struggles that this disease was going to cause. We felt like life as we know it is over. Now I feel so selfish for feeling that way, but you can't control your emotions. You just never think something like this will happen to you.

From that point on my life consisted of many doctors appointments. I had to drive to Atlanta twice a week every week for Perinatal appointments to check her heart for more tumors and heart failure. Plus I had my regular OB appointments. I went into complete denial that it was TSC. I was convinced that the cardiologist was wrong and if he was not wrong and it was TSC it was going to be the most mild case of TSC ever. Ben was the exact opposite. He was reading horror stories online and believed that Kallan was going to be living with us until we die. I guess this is just the difference in how men and women handle things.

What is TSC?

To begin my blog I think it is best to know what TSC (Tuberous Sclerosis Complex) is and how is it going to effect Kallan's life. TSC is a rare genetic disease that effects 50,000 people in the United States and 1 million worldwide.. TSC is caused by spontaneous mutations in 60% of all new cases meaning it is not passed on from Ben or me. TSC is a disease that causes benign tumors to form and grow and all the major organs of the body over the lifespan; heart, brain, kidneys, eyes, lungs and skin. Kallan was born with 4 tumors on her heart that does not effect its integrity and should go away over time. She was also born with several tumors on her brain. These will cause seizures and possibly cognitive delays in the future. Many children with TSC face mulitple brain surgeries to try to combat the problems cause by the brain tumors. Kallan has one large tumor on her brain that will have to be removed at some point. There is a broad scale of severity with TSC. While some children have minimal setbacks and can cognitively develop with medical care, some of them do not and cannot live independaently. Most fall in somewhere in the middle.

Is there a cure??? No there is not, but researchers are closer than ever to finding a treatment for TSC with an anti rejection drug commonly used in transplant patients that shrinks the tumors and allows more cognitive development in children. To us, this is a cure. The problem is, the timeline and intensity of this research is not as focused as research on other more well known diseases due to lack of funding and TSC's relative obscurity. The National TSC Alliance puts forth a valid effort and raised $3 million last year, but congress only gave $6 million to TSC. As you can imagine, it takes hundreds of millions of dollars to fund biomedical research and testing in genetic diseases. Ben and I are on a mission to work with the National TSC Alliance to raise money for a cure and raise awareness of this devestating disorder that effects so many children.

www.tscalliance.org