Kip, Angie, Noah and Lily

Tuesday, January 26, 2010

looking through a different lense

I purchased our lots in the Oconee Hill Cemetary today. Of course, the main reason for purchasing now was so that we would have this decision behind us if Hogan doesn't live long. It is something that has been a very important decision for me. I wanted the place that my little boy might be put to rest to be special. It doesn't really matter about where I will be buried but this is my son. If you are reading this and have gone through something like this you probably know how I feel, especially if you are a dad. I know that I probably won't be able to buy my son a train set or a puzzle to play with or take him to a ballgame. I feel the only thing I can do on this earth is to make his resting place as honorable and peaceful as can be. I know his soul will not be there. It is important to me because his life, no matter how long is just as important as any other life to me. He has already been such a blessing to our family. I have been over to the cemetary at least a dozen times in the past month trying to find the right area. It was a blessing that a new part of Oconee Hill had just opening up. We got to pick one of the first few lots in this area which is a small section and surrounded by beautiful old hardwoods. I can't explain my emotions but the fact that this decision is over helped to let me realize just how serious this little life is to me. The closer we get to April more excited I am getting at the thought of getting to meet Hogan. This was the case with Noah and Lily but this time I know this is our last pregnancy, so it makes it even more special. I was really looking forward to this third child because I thought God was allowing me to really enjoy the birth of Hogan because I didn't get to enjoy Lily's quite as much because my dad was passing away about the same time she was born in 2008. The irony is that I will cherish this birth and enjoy every second because of having the knowlege of Hogan's condition. I pray that God will allow us to the chance to meet him with a live birth. We are very thankful for another week with Hogan alive in Angie.

There are so many images that I will already never forget and there are many ways that we have been able to see God working through the past couple of months. This is one of them...

When Angie and I had a little time to soak in what the doctor had told us that Monday in November we both knew that no matter when and no matter what the condition, we wanted to make sure we captured Hogan with picture images. It was a hard thing to plan because the doctor told us that our child could pass away any day up until delivery and that many babies with Trisomy 18 didn't make it full term. Angie's baby doctor told us that the way we would find out that he was no longer with us was if Angie didn't feel that baby kick for a few hours. I honestly wish I hadn't heard her say that because now, I always wonder when the last time Hogan kicked!? It is something Angie can feel but I have to wonder about until she mentions him kicking or I just come out and ask her! just needed to come get checked for a heart beat if Hogan didn't kick for a few hours and then if there was no heartbeat then she would send us to St. Mary's. Well, how do you schedule a photographer to be "on call" when you have no idea when the birth is going to take place over a 5 month span? Also, if you did happen to get a photographer to volunteer to take the pictures, would the photographer be comfortable taking pictures if Hogan was no longer physically alive? I knew that I had to find someone or at least have a plan. If you have ever been anywhere with me or spent much time with me at all then you know there has to be a plan!

I knew a good friend of mine in middle georgia that I hoped would agree to take the pictures. He has always been a great friend and is a great photographer. I told him about the situation and he said "whatever you need me to do, I will do it". That was such a relief to find a friend that would be there if needed to take the pictures of Hogan and the moment. My only concern about this was that he would have to drive a long time to get here and if something happened quickly he might not get here in time or just in case he was out of town or unable to make it for some reason when the time came. So, I wanted to have "plan B"! I wanted someone that lived in Athens or really close to Athens. Angie and I talked about it and we thought of a friend that might be willing to do this for us. I emailed her to see if she would be willing to take pictures for us at the hospital. I hated to put her in an awkward postion because I knew this was a very different situation.

After I sent the email off I noticed some similarities in a few of the pictures and videos that I had seen online while reading about Trisomy 18. The letters NILMDTS were on a couple of the photos and a video that I had watched. I googled NILMDTS to see if I could find some information. I found out that NILMDTS stands for an organization called "Now I lay me down to sleep". I read about what this ministry was all about and it sounded like it might be just what we were wanting! I emailed a representative in Atlanta and told him about Hogan and asked if he could take pictures of Hogan when the time came. It wasn't long before I got an email back saying that he couldn't do it but there was a local person here in Athens that might could help. He gave me her contact number and within and hour I had talked to her and she basically said she was sorry about what we were going through but that she would be there for us to take the pictures when we needed her! She went into detail about how she would handle the things. What a blessing! She was just what we wanted! She is trained to do this type of thing. She is a part time nurse at St. Mary's where we will have our baby and also an incredible baby photographer. How amazing is that?! She gave me her cell phone and told me to call her on the way to the hospital. I pray that we make a happy call to her in mid April!

I would have never known about an incredible group like NILMDTS. There are so many good people in our world with amazing talents and amazing hearts! Hopefully we will get lots of other pictures later in Hogan's life but if a miracle doesn't happen it is such a blessing to have photographers that donate there time and talent to do this because these images may be the only visual images here on earth that we will have.

This is a video that was put together for Trisomy 13 and Trisomy 18 families. It was this video that led me to Teresa, our local NILMDTS volunteer. This video is filled with images of Trisomy 13 and Trisomy 18 babies. These two conditions have a similar fate but a few different characterstics.

Tuesday, January 19, 2010

how 20 minutes can change your life...

I have copied, pasted and edited this from "our story" on our probably should have been my first blog because this was the start of our journey...

I don't know why I am putting down some of my thoughts and experiences through this journey with Hogan on this blog but like I put in my first post, if this blog can help me, or my wife and kids. If this blog can somehow help somebody that has dealt with Trisomy or something different or if this changes one person's life then it was worth it.

It was the 18th of November, this day would be the day we would find out if we were having a boy or a girl! This was our third time going through this procedure and each time there is a nervous anticipation of finding out the sex of your child. We had been blessed with a little boy Noah, born on August 12th of 2006. We had also been blessed with a little girl two years later Lily was born on August 16th of 2008. This third child was unexpected and unplanned but we knew that God was at work and the thoughts of 3 stair steps in height and three children growing up close in age would be a great thing. We had originally scheduled the doctors appointment on November 16th but because of a meeting that I couldn't miss in Atlanta, Angie changed the appointment to the 18th. As I look back now, I am so thankful that my wife didn't go to that appointment without me.

It was just like our first two visits, the waiting room was full of pregnant women waiting to go back and see their future addition on a screen or maybe to find out the sex of their child like us! I remember Angie's nurse call out"Angela", it was that time! It wouldn't be long before we found out what we were going to have! The nurse walked us back to the last room on the right side of the hall. This room will be stuck in my mind forever. The nurse came in and did her normal checks of our baby with ultrasound. After a few minutes, she asked us if we wanted to find out what the sex of our child would be and of course, we told her YES!!! She asked us how many children we had and realized that this baby would determine who ruled our house, guys or girls! It was only a few seconds until the nurse said "it's a boy!". Angie and I both smiled at each other and said "Hogan" as the nurse quickly typed "it's a boy" on the ultrasound images and printed them off for us to keep. She told us that doctor Rosemond would be in shortly. Hogan was the name we had already chosen if we were going to have a boy, while Kaytie would have been the girl's name. We had chosen these first names and the middle name "Sayer" to honor both of our mothers. Hogan was my mother's maiden name while Sayer was Angie's mother's maiden name.

We were both excited about having another boy and I started thinking about Hogan and Noah hanging out, I was daydreaming about how neat it would be for just "us guys" to take in some games together and do "guy stuff together". I would have been just as happy to have a girl, trust me, but having another boy had just been declared so my mind took off in that direction! I even sent a message to a friend of mine while waiting on the doctor that we had another "draft pick" coming. We were both so excited to have another little boy that would introduce himself to us in April of 2010. Dr. Rosemond walked in and said his normal hello's to us and quickly got to work on his measurements and analysis of Hogan. After a few minutes, I started thinking it was taking longer than normal but sat quietly letting the doctor do his thing. Dr. Rosemond did make the statement that he was concentrating and that was why he wasn't talking to us. I thought that was strange but just assumed it was a good thing and it was just normal for him, I was supposed to play tennis later that afternoon and was looking at my watch thinking about how I would have to hurry to get ready before my match. It was also about the time that I later found out Angie knew something might be wrong, with her medical background she knew that the doctor was focusing on Hogan's heart and his brain. It was about 20 minutes into the ultrasound that Dr. Rosemond stood up and said "there are some things that I need to tell you". I will never, ever forget that feeling, the moment or the visual. My heart dropped to my ankles and a cold sweat hit me. I looked at Angie and tears were streaming down her face. It was strange, but at that moment I didn't see my wife at her current age, I saw her as a little girl that was hurting, I remember sitting there looking at her laying on that table and thinking that Angie didn't deserve this. I jumped up to hold her arm to hear what the doctor had to say next. Dr. Rosemond went on to say that our baby had shown many things that concerned him. He went through the different characteristics of cysts on the brain, a hole in his heart to other abnormalities that he was able to see on the ultrasound. We were both in shock. He requested that Angie have an amniocentesis done on her to see if Hogan had downs syndrome and he also mentioned a couple of other things but I only heard downs because that is what he focused our conversation around. I asked him what was the percentage chance that he thought we had of having a son with downs with what he was able to see on the ultrasound and he said "60%". Dr. Rosemond told us that he wished he would get the results sooner but that since it was a Thursday afternoon, that it would be Monday before he got the results. He told us that it would probably be the longest weekend of our lives.

It was a long weekend but we prayed and tried to get our minds around the fact that our baby had a good chance of having downs syndrome. Of course, we knew downs syndrome wasn't the worst thing by far that our child could have but as all parents do when they become pregnant, we wanted a healthy baby. I think we both did our own independent studies on downs all weekend and by Monday morning we were almost ready to get the news. We both knew that God wasn't going to give us more than we could handle and that Noah and Lily would be the most incredible big brother and big sister to Hogan if Dr. Rosemond's assumption was correct.

Monday morning finally came and we both tried to keep everything normal so Angie took Noah to school while I waited in case the doctor called with the results. Angie got back and was able to get Lily to sleep for her nap just in time before the phone started to ring. It was 9:50 and I saw "Athens Maternal" on our phone. My heart started racing and we both looked at each other to see who would answer. Angie told me to get it and she came and sat beside me on the sofa in the living room. He paused for a moment and said "we did get the results back from the amnio and I was surprised to find out that the test showed your baby has a condition called Trisomy 18". I honestly had no idea what this was and wasn't familiar at all with it but knew that the 2 "other things" that the amnio tested, were not good. Angie had read a little about it but stopped reading over the previous weekend because she didn't want to think about it. The doctor told me that this meant our baby would have major health issues that were incompatible with life and that the life expectancy with Trisomy 18 was one year at best and that most lives were much shorter and that if the baby survived birth he would have issues that would keep him in and out of the hospital. Needless to say, we had somewhat prepared for downs syndrome in our minds but this was totally a shock again. I asked Dr. Rosemond what our options were and if there was anything we could do. He told me that we basically had two choices. One would be to abort and the other would be to continue down that road as a normal birth and see what happens. He also told us that there was a chance that the baby would have "Mosaic" Trisomy 18 which would might have given us a better chance to be with Hogan longer. We found out a week later that it was not Mosaic but that it was full blown Trisomy 18. Hogan was one of the "1's" in those statistics.

Angie and I both were thankful that Noah had a Thanksgiving lunch at his preschool so that we could get out and take our minds off of the news we had just received. It was a long day and a longer night as we drove down to Dublin. It was on that drive that we both cried and talked and tried to make some kind of sense out of things. We both had some of the same thoughts though. Why? Why God? Why me? Why us? Why not some crackhead downtown? Why didn't this happen to someone that would abuse the child? Why not to someone that didn't take care of themselves during pregnancy? Why God, Why!? Why out of all of the people that come through his office did we have to be the ones? Why did you do this to my wife? The real question is.. Why not me? Why not us? We are no more important than anyone and no less important. It was a long week of reflecting, crying and praying. We are so thankful that these doctors took the time to talk to us, but they all had one similar message for us; it isn't good and that they were sorry.

I remember having breakfast with a friend of mine that Wednesday morning and after hearing what we learned on Monday, he told me I needed to find a point and focus on it to get me through this situation, I told Angie about it later. Those words stuck with me all day. It was later that night that it hit me! The point I needed to focus on was GOD! That seems so simple but is so hard to do sometimes! If we were going to get through the next few months we had to focus on him and trust in him, he is our point. It wasn't long before something else became clear, this wasn't something that happened randomly. The test results that had knocked us to our knees wasn't a fluke thing. It wasn't a fluke that we were were a "1", this journey is ours because God chose us. We were chosen for this, Hogan is the 1 in 8000 the doctor told us. We believe that Hogan is truly special just like the other "1's" in statistics, he is special just like the other 7999 babies. We are honored to be parents of Hogan, just like Noah and Lily. Hogan is with us forever and will forever be part of our family.

We pray that God will perform a miracle and that our next ultrasound will show miraculously that Hogan's heart would be better and that the other problems would be no longer there. We pray that if God chooses not to perform a miracle that God would for sure use Hogan to touch the lives of others. He has already touched the lives of at least 4 people, our family!

Monday, January 18, 2010

rookie blogger

Yes, this is my first ever post on a blog site. If this blog can either help me, my wife or my children, or if another Trisomy family can find peace or strength through our situation or if there is a chance that someone might find God because of our journey then I know the blog was worth it.

This blog is a continuation of a website that I am starting called "Hogan's Heroes" it's motto is "remembering the ones". This motto "remembering the ones" is referring to the statistical numbers that parents are given during the pregnancy journey. There are numbers like your chance of "X" is 1 in 150, or "Y" is 1 in 1000 or "Z" is 1 in 8000 and I am sure there are more statistics out there than I would ever want to know but the point is that the 1 in all of these scenerios is probably never remembered. I know I didn't think too much about some of these numbers in our first pregnancy because everything went pretty smooth. We are now about to have a child that is a "1" in 8000. Hogan has a disorder called Trisomy 18 that makes his body imcompatible with life. He is facing many health issues, his heart has a hole in it along with many other problems.

I can't begin to thank all of the people that have emailed, called and written us to let us know that they are praying for us and Hogan. I am so thankful for supportive friends and family. I am also so thankful for an amazing wife that is carrying a baby that is facing death and knowing it ahead of time while still looking after our 3 year old son Noah and our 1 year old daughter Lily. Angie is a special person and if you have ever met her then you know how sweet and thoughtful my best friend is and has always been. I don't deserve all of these blessings but I am so thankful.

I have realized through the past couple of months that there is NO good death and especially NO good child or infant death. This isn't the way it is supposed to be, I am not supposed to be buying a place for my child to be buried in a cemetary, I am not supposed to be talking to the funeral home about how these things are handled. Why God? Why us? Why now? Why did you do this to us? Well, I we might not know why yet or may never know but we will be seeking God and searching for the answers.

We had an ultrasound a couple of weeks ago, which was the first ultrasound since November. It showed that Hogan still has many problems that go along with Trisomy 18 and that there were a few more problems that we didn't know about in November but there was one glimmer of hope for us. The Doctor told us that he felt our chance for a live birth were decent. That may not sound like much but considering the enormous amount of bad news we have had recently about Hogan it was incredible. The thought that we might get to hold our little boy before God takes him into heaven is something that we continue to pray that we get to do. We are going to have a meeting with multiple doctors next month to plan the pregnancy. We were told this birth would be handled much differently than the previous two. I was thankful that our doctors want to make sure that they do exactly what we want if Hogan enters this world alive, but no matter what happens Hogan will always be alive in us. I have never been so ready to go to Heaven as I am right now. I don't want to go anytime soon but this puts an entirely different picture on Heaven for me.

Heaven isn't just a place that I want to go instead of Hell but its a place I have got to go! I can't not be there, I have to see Hogan if this goes the way all of the doctors tell us that it is going to go. I am trying to focus on Jesus through this and ask for whoever might stumble onto this blog to pray for me. Pray for our family and pray that God will use this situation so that He will be glorified. We are trusting God because that is all we can do!