Kip, Angie, Noah and Lily

Thursday, February 25, 2010

Extensive Care

hogan Name Meaning and History

Irish: Anglicized form of Gaelic Ó hÓgáin ‘descendant of Ógán’, a personal name from a diminutive of óg‘young’, also ‘young warrior’.

Hogan is a young warrior! He continues to fight for life and to be with us.

Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do and he will direct thy paths. Proverbs 3:5,6 NLT

These verses are ones that provide strength. These verses are ones that provide hope. We continue to try and focus on the "point" as we get closer to the due date for Hogan. The day that we have been praying for is now getting close!

Although we are trusting God, as the days pass the stress and anxiety seem to be mounting. I think after the initial shock and heartbreak of hearing of Hogan's condition of Trisomy 18 in November, we have been in a holding pattern. What I mean by that is we have been thankful for every day that passes that Hogan is still alive and safe inside of Angie's womb while hoping that April will get here and that we will be able to meet Hogan with a live birth. Hogan is kicking often now and I can even see and feel the kicks on Angie's belly!

This afternoon was the "big meeting" with the doctors, nurses and hospice representatives at St. Mary's Hospital in Athens. It was a strange feeling walking back into the place where we brought Noah and Lily into this world knowing that in a few weeks we might be back awaiting Hogan's birth. There were 7 people who attended the meeting other than Angie and myself. These were 7 people that were working past "normal office hours" in order to take the time to make sure we got any questions that we had answered and to make sure that we felt comfortable with what we might be facing in a few weeks. Dr. Rosemond, Dr. Lohman, Dr. Morales, Kemberly Mixon, Tanya Adcock, Teresa Scoggins and Karen Joyce were the ones that sacrificed their time to see us. It was a meeting for us to ask questions and for them to tell us what we could expect during and after the birth. Dr. Rosemond started the meeting by catching everyone up on our journey with Hogan. He went through everything that I have mentioned in previous blogs and it was tough for Angie. It was difficult meeting because we had to talk about things that broke our hearts but it was a meeting that we will never forget. It was a meeting that we will never forget not only because of the information we received, although it was very informative, but it was amazing to me how much care everyone had for us and Hogan. I am not trying to be a commercial for St. Mary's or any of these individuals and I am sure many hospitals are filled with caring people but we are very thankful that God has allowed us these individuals to be with us during this time.

If Hogan doesn't turn in the next month it looks like it is pretty certain that we will have a scheduled cesarean birth. It is also a good probability that we will have the baby in the first part of April if things keep going the way they look now on the ultrasound. We are praying that Hogan's heart will work as good as the pediatric heart specialist Dr. "V" told us a couple of weeks ago and we are also praying that Hogan's lungs will work well. It is also pretty normal for Trisomy babies to have eating problems so it would be incredible if Hogan could at least take a bottle. It was a also a neat meeting because it was mainly about what would happen after the birth. It gives me chills and brought tears to my eyes during the meeting when it hit me. We are now actually preparing for the live birth that was never thought possible in November!! We are getting close to meeting Hogan. It is a strange feeling because I get so excited thinking about the moment we will see him and then I try not to get my hopes up in case at this late stage that something bad happens. I know it is in God's hands and that we will give glory to Him regardless but the thought of being able to hold this baby that has beaten so many odds already is incredible to me. The meeting helped put our mind at ease because now we know how things will be handled after Hogan's birth. The NICU is where he will probably spend most of his time after birth so it was good to tour part of that area and to meet the people that will be caring for Hogan.

I know I mention this is every blog but it is important. Angie and I are so very thankful for everyone that has called, emailed, sent cards, spoken words of love and prayed for us. I don't think a day goes by now that I don't hear from someone that is letting me know that they are praying for us and baby Hogan. We are overwhelmed and blessed. I know that the power of prayer has given us strength and given Hogan strength. I continue to ask for your prayers as the due date draws closer. If you are reading this blog then you are someone I would like to thank. I can't wait for you to meet Hogan!

You can ask for anything in my name, and I will do it, because the work of the Son brings glory to the Father. Yes, ask for anything in my name and I will do it! John 14:13,14 NLT

For God hath given not us a spirit of fear and timidity, but of power, love and self discipline. 2 Timothy 1:7 NLT

Wednesday, February 10, 2010

Hogan's Heart

Noah and I made this incredible sun catcher today for Angie. It was "day with dad" day at his preschool. I don't think I could be more proud of my little man. We went by Fox's pizza on the way back home to get the "Noah Special". That is a bambino pizza with extra meat and no cheese. Noah can't have normal cheese pizza because of his allergies so we have to get his own personal pizza. I think Noah likes it because he gets his own pizza box!

This is the week that many celebrate Valentine's Day. It is the holiday that you see hearts everywhere. Noah made his sun catcher heart. He also made a heart card for his mommy and there are candy heart boxes everywhere. It is ironic on the week that we celebrate hearts so much that we have been dealing with Hogan's heart this week.

Dear Friends, let us continue to love one another, for love comes from God. Anyone who loves is a child of God. But anyone who does not love does not know God, for God is love. God showed how much he loved us by sending his one Son into the world so that we might have eternal life through him. 1 John 4:7-9 NLT

This verse was on the craft that Noah and I finished today at "Day with Dad" at his preschool. The craft was made for Angie and of course, she loved it! I also love the 9th verse because it showed us just how much that God loves us. God sent his son to die for us. He sacrificed his Son that we might all have eternal life. I was talking to a friend of mine this morning over breakfast and we were talking about Heaven and just how our minds can't really comprehend what Heaven is going to be like. Isn't is amazing?

I wanted to catch everyone up on a couple of things I mentioned in my last blog. I know many of you have been praying. Angie got a call yesterday afternoon from the doctor in Lawrenceville letting us know that everything was benign with her thyroid! That is one thing that we don't have to worry about having to address soon after Hogan is born. We are so thankful! I am so glad the doctor wanted to go ahead with the biopsy last week.

The other big event this week was the meeting with Dr. Rosemond and Dr. "V" the cardiac specialist today about Hogan's heart problems. I can't express the gratitude we have for the doctors that we have had the blessing of being with through this pregnancy. I have heard so many stories from friends about doctors not caring or not having good bedside manner but our doctors have all gone above and beyond to take time with us. Dr. V's real name is Dr. Videlefsky. Dr. Rosemond and Dr. Videlefsky spent over and hour with us looking at Hogan's heart and talking to us about his condition. They gave us the good news. It looks like Hogan's heart is not in good shape but not in horrible shape. That means that he could live for a little while!! We have gone from basically being told there is almost no chance for a live birth in November to a decent chance for a live birth last month to a chance we might could take Hogan home with us from the hospital if everything stays as good as the ultrasound looks right now! We will probably have to have a feeding tube for Hogan and maybe oxygen but he might be able to come home with us!! We have been praying for a live birth and continue to ask for those prayers. Angie and I both almost started crying today when they told us his heart could work for a while in the condition it was in today. We are so thankful for the hope that we have been given! Thank you for your continued prayers.

Saturday, February 6, 2010

Why God? Why?

We are getting closer and closer to the due date and I can feel the tightness in my chest. Although I am trusting God and trying to focus on him and trying to get mentally prepared for what we are going to face and knowing there is really no way to prepare for the emotions.

I am amazed at the strength of my wife. She is being so strong. We continue to be overwhelmed with the thoughts and prayers and well wishes from everyone. There are so many people that have been so thoughtful and nice to us and sympathetic to Hogan's situation that I can't even start to name anyone for fear of leaving someone out. Just know that if you are reading this post you are someone I want to thank! I know I mention how thankful we are in every post and its because it means more than I can explain! I know that God has given us strength through those prayers and I know that Hogan is feeling the prayers too!

I continue to ask God Why!? Why did I get blessed with such an incredible wife that I don't deserve? Why have we been blessed with 2 beautiful children so far and one on the way? I know there are so many people that can't have children. Why has God blessed our family so much with wonderful friends that care so much about us? Why are strangers praying for us? That is so incredible to me. Why are so many people being so kind and thoughtful? Why are you allowing us to experience the birth of such a special child that has overcome so many odds already? I may not know answers to all of these things but I do know that if I died tonight I would have died a blessed father and husband.

Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will direct your paths. Proverbs 3:5-6 NLT

Those verses seem to be the "point" that we are focusing on through this journey with Hogan. This week was quite a stressful one for me because we were going to see an endocrinologist about Angie's thyroid and yesterday we were going to see Hogan through an ultrasound at Dr. Rosemond's office again and these ultrasounds would be the ones that would help give us a closer look at the problems that Hogan is facing that are created by the Trisomy 18 condition.

The doctors appointments outcomes were both different than we had expected. We had thought that endocrinologist would just talk to us and tell us to come back to see him after Hogan was born because that was the recommendation that we had gotten from a couple of doctors here in Athens. It wasn't the case. We went to the appointment thinking it was just a consultation and left with Angie having an ultrasound on her thyroid, a biopsy and blood work done. This was a surprise because it seemed to me all along that the doctors wanted to wait until the baby was born because if this was cancer that there was nothing that could be done until Hogan was born. This whole thing is ironic because Angie had an appointment set up to get her thyroid checked the day after we found out we were expecting Hogan so they didn't want to do the normal tests because she was expecting. We have had it measured and blood work checked since then and were sent to Lawrenceville this week to see a specialist. This doctor wanted to go ahead and get it checked because it was half solid and half liquid. I am actually relieved that we will know the results before Hogan is born so that we will know how aggressive we need to be after he is born. This again is another example of how incredible of a wife I have! I asked her about it before we found out Hogan's condition and she told me that she would not do anything different if it was cancer. Angie gave radiation treatments to cancer patients as her profession until we had Noah. She told me that the cancer is usually slow growing in that area even if it was cancer. She wasn't too concerned. She wasn't but I was really concerned. That has probably been a little part of the "fragile" feeling too. In the back of my mind I can't help but think what if Angie has cancer along with everything else. The growth had grown about 25% more since 5 months ago so I am praying that the results will come back benign in 10 days.

Friday we went to see Dr. Rosemond again to get the ultrasound on Hogan. It was the usually appointment with him. We were greeted by the nicest sonographer we could have ever asked for at his office. She has been so kind to us through all of this. She did her initial measurements before Dr. Rosemond came into the room and looked at Hogan. He looked for a while studying the things that he has been watching since the November 18th visit. It always brings back bad memories when we are in his office now but he has been great to us. He has taken extra time with us and answered every question we have ever asked. When he was done taking his look, he told us what he saw. He still saw the heart problems but there were a couple of other things that he saw that weren't "normal". It was a good "not normal" for a Trisomy baby! Hogan was 3 weeks behind in development at our last visit. This is normal for Trisomy babies. They usually slow down and don't develop normally after 20 weeks. The unusual thing was that Hogan was only a couple of weeks now! He is growing better than most with his condition. There was one other thing that was a miracle to me. Dr. Rosemond had told us of a problem that hurt me to think about for Hogan that I couldn't really get out of my mind over the past couple of months along with others but he didn't mention it this time so I specifically asked him about it. He told us that it actually looked better now... he said it looked pretty normal now! That was not the only thing that he told us. He told us that not only did he think that our chance was pretty good for a live birth but that he thinks that Hogan might live for a few days!! He did obviously say that he can't guarantee anything for sure but that from what he saw on his ultrasound that he was optimistic! Angie and I both had tears of joy in our eyes when he told us all of these things. We are so thankful. I am almost nervous to get excited about it because I fear it won't turn out the way he thinks but... praise God for the hope!

We have gone from almost no hope in November of a live birth to a chance for a live birth in January. We are now hearing that we have a chance that we might be able to bring Hogan home with us. WOW! He did tell us that with Trisomy 18 we will not know a lot until Hogan enters the world but we continue to hope and pray that he enters the world alive and that we have a chance to spend some time with him. We will be so thankful for every moment. Isn't it interesting that we feel this way about Hogan. Isn't this the way we should feel about every relationship we have in this world? I know I will soak up every moment with Hogan. I am so thankful for everyday on this earth. I am overwhelmed that God has blessed us so much!

Funny thing today...I was about to take a shower mid morning when I cranked up my "tennis mix" on my ipod. I know thinking about me dancing before I take a shower isn't a pretty mental image but at least I did have my clothes on at the time! If you know anything about my music taste then you know it is anything and everything! I picked up my little princess Lily and started dancing to the song "Brickhouse". It wasn't long before Noah came running into the bathroom to see what the fuss was all about and joined us dancing. Of course, playing basketball years ago at Dublin High, I have a love for "black music". One of my sister's majored in piano performance at UGA so I like that music too. I also lived most of my life in middle Georgia so I have to like Country! So we went from Soulja Boy, Wild Cherry and the Stones to Darius Rucker's song "Alright". I was singing his song "Alright" beautifully while dancing with Noah and Lily when I realized that not only do I like the flow of the song but I love the words to that song too. It basically talks about being "Alright" with simple blessings and not having to have the finest or best. When I hear the song and its words my mind thinks about the fact that if you are a christian that you will be "Alright" no matter what happens in life. You can have family tragedy, you can lose your job, you can lose your car, you can lose all worldly things but if you are a believer you can't have your faith taken from you. If you have a chance to listen to it check it out, you will know what I mean and if not, just ask me and I will sing it for you! We have so much to be thankful! Life could be so much worse. We are so excited that we have been given hope of spending time with Hogan!

Monday, February 1, 2010

FRAGILE - Handle with Care!

Angie went to the doctor on Friday and got to hear Hogan's heartbeat again! Noah and Lily were there too! I could listen to Hogan's heartbeat all day. We are going to get another ultrasound on Friday of this week. The images and measurements from this ultrasound used for the meeting with our doctors in a couple of weeks. Dr. Rosemond wants us to plan out everything so that when this time comes we will not have to make quick decisions that haven't been thought through ahead of time. I am thankful that they are taking the time to do this. I am also so thankful that so many people are praying for Hogan and our family. I know it is the reason that I can put words down on this computer. It is amazing the peace and the strength that God has given us because of those prayers and words of encouragement. If you are reading this blog you have probably already been praying for Hogan, thank you.

There is one thing that really changed about the way I view life because of Hogan's condition and that is just how fragile life is to me right now.

For your life is like the morning fog- it's here a little while, then it's gone. James 4:14

I did my share of crying and crying out to God the week of Hogan's test result in private but I never really let Angie see me break down until the Friday night when we got back to Athens after Thanksgiving.

It is something that I know and have known all of my life. I have read about it and heard it preached many times but the fact that life is so precious and it can be gone in an instant had never really impacted me like it does right now. It is hard to explain but my biggest fear now if God doesn't provide Hogan with the miracle of life is that I will lose someone else. It is almost like ok God, if you are going to take Hogan into Heaven now, then please don't take anyone else right now! It makes Angie's, Noah's and Lily's life seem more fragile than ever to me. It is amazing that just in the past 9 weeks since finding out about Hogan's condition that we have had a couple of scares with both of our children and now Angie is going to see a specialist next week to see about a health issue that continues to bother me.

One evening in December I got home from the office to find Noah not feeling well. He just didn't act like he usually does. I asked him if he was ok and he told me that his head hurt. Then a few minutes later it was his back, then his legs etc. etc. It wasn't long before I realized that he was having an allergic reaction to something as his eyes began to swell. We already knew he was allergic to eggs, milk, cheese, nuts, chocolate etc. but this time we weren't sure what has caused this to happen. When we checked Noah into the emergency room at St. Mary's he was having trouble breathing and was breaking out all over. We got him back to an ER room and the Dr's and nurses and myself couldn't hold him down for the IV so they had to get a board to strap him down so that he would be still enough for the needle. If you are a parent then you know the feeling when your child is screaming for you to help him and you can't. I had to watch him scream your name asking for help with tears pouring down his face and get so upset that he was sick. I know Noah was wondering why I had to let him out of my arms so that these strangers dressed in all white would strap him down and put a needle into his arm that caused pain. It hurt me so bad to hear Noah cry out my name in need of help knowing that I could do nothing but pray for him and trust the doctors that had been given a gift. I knew that the doctors had to give him the medicine to heal him and make him better but Noah didn't understand. I think that we are going through a similar time in our life. We don't understand why we are hurting or why this is happening but we know that God is good and that God will take care of us. He is the great physician. He can heal all pain.

It was only a few weeks later that Noah was running around having fun at his "grandma's" (my mothers) house. We were about to leave to go home when Noah came running out of my mother's bedroom full speed and accidentally ran over Lily. All Angie and I heard was a big BAM and then screaming followed. Lily had been knocked backwards and hit her head on the wood floor. I got Lily out of my mothers arms to comfort her but it wasn't but a second when I realized she wasn't crying anymore. I pulled her off of my chest to look at her and her head fell forward. She was out! She was not moving at all. I gave her to Angie and we both began to run toward the door to leave for the hospital. It was probably only 4 or 5 seconds but it felt like eternity before she regained consciousness. We called our pediatrician and did the necessary checks and before long Lily was back to her normal self! Again, reminding me that life is fragile and that we can never take anything for granted or any time with family and friends.

If I had a dollar for every time that I kissed my son or daughter on the cheek I could have retired yesterday! Although I know that life is really no more fragile today than it was on November 18th but it just feels that way to me right now.