Well I know it has been almost a month since I have blogged and I apologize. Ever since we got home from the hospital it has been a full time job taking care of Dylan and making sure his recovery goes very well. Greg and I were sitting on the couch last night saying to each other " We cannot believe it has almost been months since Dylan's surgery"!! How time flys.

Dylan is doing amazing and his recovery has been a pretty smooth ride! The first week he was up 3 times during the night since he was used to being woken up in the hospital a bunch of times to do test, blood work, echo's whatever they needed. The doctor said this is normal and would take a few weeks for him to get back on schedule. We had our follow up appointment with the cardiologist and he is doing awesome! His heart looks great and we were able to get him off of some of his medications. We still have a follow up appointment with the surgeon next week but I am sure everything will look great. He will check his scar and make sure everything is healing correctly. Dylan will have what's called a synergies shot once a month from the month's of November to March every year until he is 3 years old. It is not a vaccine it is just an immunity shot to help boost his little system in the case he gets in contact with anyone that is sick or has the RSV cold. We DO-NOT want him back in the hospital!

This surgery was not an easy thing for Greg and I to go through nor Dylan. As parents you never want to see your children suffer or hurt in anyway. Like I said I always wanted to just take his pain away for him. The best part is we got through it! With all the the prayers and support from family and friends we made it. God got us through it! It is so crazy to think that he had open heart surgery almost a month ago and he is back to his normal self, like nothing happened! We are so proud of Dylan and his strength we cannot wait to watch him grow in the near future and we are so lucky to be this little man's mommy and daddy. We love you Dylan!

Life Is Hard So You Can Grow

“Take on an entirely new way of life — a God-fashioned life, a life renewed from the inside and working itself into your conduct as God accurately reproduces his character in you.” (Ephesians 4:22-24 MSG)


Many religions and New Age philosophies promote the old lie that we are divine or can become gods. Let me be absolutely clear: You will never become God or even a god.

That prideful lie is Satan’s oldest temptation. Satan promised Adam and Eve that if they followed his advice, “you shall be as gods” (Genesis 3:5 KJV).

This desire to be a god shows up every time we try to control our circumstances, our future, and people around us. But as creatures, we will never be the Creator. God doesn’t want you to become a god; he wants you to become godly, taking on his values, attitudes, and character. We are meant to “take on an entirely new way of life — a God-fashioned life, a life renewed from the inside and working itself into your conduct as God accurately reproduces his character in you” (Ephesians 4:22-24 MSG).

God’s ultimate goal for your life on Earth is not comfort but character development. He wants you to grow up spiritually and become like Christ. Becoming like Christ does not mean losing your personality or becoming a mindless clone. God created your uniqueness, so he certainly doesn’t want to destroy it. Christ-likeness is all about transforming your character, not your personality.

God wants you to develop the kind of character described in the Beatitudes of Jesus, the fruit of the Spirit, Paul’s great chapter on love, and Peter’s list of the characteristics of an effective and productive life (Matthew 5:1-12; Galatians 5:22-23; 1 Corinthians 13; 2 Peter 1:5-8).

Every time you forget that character is one of God’s purposes for your life, you will become frustrated by your circumstances. You’ll wonder, “Why is this happening to me? Why am I having such a difficult time?” One answer is that life is supposed to be difficult! It’s what enables us to grow. Remember: Earth is not Heaven!

Many Christians misinterpret Jesus’ promise of the “abundant life” (John 10:10) to mean perfect health, a comfortable lifestyle, constant happiness, full realization of your dreams, and instant relief from problems through faith and prayer.

In a word, they expect the Christian life to be easy. They expect Heaven on Earth.

This self-absorbed perspective treats God as a genie who simply exists to serve you in your selfish pursuit of personal fulfillment. But God is not your servant, and if you fall for the idea that life is supposed to be easy, either you will become severely disillusioned or you will live in denial of reality.

Never forget that life is not about you! You exist for God’s purposes, not vice versa. Why would God provide Heaven on Earth when he’s planned the real thing for you in eternity? God gives us our time on Earth to build and strengthen our character for Heaven.

Dear Dylan::5 Months Old

Our beautiful Dylan! I am a day short on writing my post, but I cannot believe our baby is  5 months old already. Where does the time go? The joy and love that Dylan gives to Greg and I is probably all we need for the rest of our lives. He is so special and one of the bravest little boys we know. Dylan we love you so much! Happy 5 month Birthday!

Home Sweet Home

Can you believe it? We are actually home, and I have never been more excited in my entire life!! Not only was Dylan's surgery very hard and stressful but being cooped up in a hospital for almost a week was not very fun.

Day 7 was a very exciting day for us. The doctors came in the morning to do a last echo on Dylan, and they were very pleased with him, and they told us we were going to go home! The word home never sounded so good in my entire life. By 10:00am we were packing our things, and we finally left the hospital. It definitely was a bitter sweet moment for me. We met so many people and made new friends throughout  the week. I was also a little nervous over coming home and to be home alone with Dylan. I mean we have had nurses, doctors, family and so many other people helping care for Dylan this last week that now it's just back to our little family again.

When we got home on Monday, I told my mom that I would like her to make us a home-cooked meal for our celebration in bringing Dylan home. Throughout  our week at the hospital, Greg and I ate at a resturant everyday  breakfast, lunch and dinner. I mean I love going out but not that much. I never want to see another restaurant for about a month. My mom came over later that night and made us the most amazing chicken and potato dinner. Thank you mom, we love you very much!!

We are now on day 2 of being home, and Dylan is doing great! His schedule is a little off just because while we were in the hospital, they were waking him up to all the time for blood test, ex-rays, echo, medicine, etc. The poor little guy I think forgot how to sleep. So he has been waking up maybe two times through the night. His eating has sky rocketed, and he is eating like a champ. Before surgery, it was hard for Dylan to eat large amounts of his bottle only because his heart was working so fast to try and keep it down. However, now that his little heart is fixed it is much easier for him to breathe and eat. I am so thankful for that!

The last four months have been pretty painful for Greg and I. Ever since Dylan was born, and our world was rocked to the core when we found out about his heart condition and down syndrome our life has been on over drive. I think Greg, and I have lost about 20 years of our lives in the last 4 months, or at least we feel that way. Nevertheless, the last four months have also been the most amazing four months of our lives, and we have never been stronger in our faith and our marriage. God brought Dylan into our lives for a reason. He has taught us so much already, and he is only four months old. He has given us strength, courage, love, security, and to always trust in god no matter what. We will never understand why things happen in life or why we are given the challenges that we take at hand, but god will always provide for us and be right there with us. We are so thankful for the doctor's and nurses at Choc. They fixed Dylan's little heart, and he will now have a brighter future because of them!  Whether you have gone through something like this, are going through something right now, or you may never have to, but I cannot explain how hard it is to see your child have to go through something like this. However, remember you have to be strong for them and let them know it will be ok. I am so glad this part in our lives is over, and Dylan has a stronger heart. We look forward to the future with him as his mommy and daddy and pray for his strength and growth throughout  his life. Thank you to everyone for all your prayers, messages and phone calls through this time. God truly has answered our prayers!!

Dylan Surgery-Day 6

Well if you have been following my blog through this last week you probably have noticed that I write my post in the morning from the previous days. The nights our very exhausting for me and when my head hits that pillow I am pretty much sound asleep within 10 minutes.

Yesterday was another great day for Dylan! The last couple of days they have been trying slowly to take Dylan off of his oxygen and he was still hanging on to that last little bit. After a heart surgery it usually takes a little bit of time to almost learn how to breathe on there own again. Finally around 8:15am they took it off and he was doing great! His levels were doing awesome and he did not need it anymore. Another goal down. Dylan was smiling so much almost more then he was even before surgery. All the nurses were coming in to hang out with him and  to see that sweet little smile of his, in my opinion he was being a little flirt. I think Dylan had more girlfriends this week then he will in a lifetime...Ha!

Yesterday Greg and I also decided to go home for a bit and grab some mail, do some laundry and I actually went for a run. 6 days of being the hospital can make you go a little crazy!

When we got back to the hospital Dylan was awake and still doing great! He finally had his first bath and of course loved it! We had a few visitors and went to dinner. Greg decided to go home and sleep in his own bed ( I don't blame him) since he had to go to work for a little in the morning. Another great recovery day!

Dylan's Surgery-Day 5

Yeah for Dylan!!!! Yesterday was a big day for Dylan, Mommy and Daddy. As I explained in my post before after Dylan's heart surgery they had to keep drains in his chest. These tubes are what drains the blood and any fluid after surgery. This is the most painful part for the babies post surgery and in order to remove them they have to have minimal output from the drains. Yesterday they finally removed these from his chest. We were so excited and excited for Dylan!!! He was going to be a whole new little boy.

In order to remove them they had to give him morphine and sedate him a little. It is pretty painful for them but only takes about 10 minutes. Greg walked out of the room because he did not want to watch them. I stayed in the room with Dylan. The doctor told us he would probably cry a little. Well guess what happened?? Our little man did not make a peep. Can you believe it? The doctors could not even believe it. They asked us, does Dylan ever cry? We told them not very much. He is the most calm little boy. All of the nurses can not believe how strong our little Dylan is. I new he would be a fighter. He is doing amazing and much more playful now that the drains our out. We hope to be going home soon. We will keep everyone posted.

Dylan Surgery-Day 4

Not much has changed for Dylan since yesterday's post on surgery updates. Dylan is still holding strong and just sleeping as much as he can. Thank you to his pain medicine it is helping him stay comfortable until the tubes come out of his chest.

Yesterday they took another chest ex-ray and there was a little bit of fluid on the chest but nothing they were concerned about and it is a common thing that can happen after surgery. The nurses have still been trying to get him off of his oxygen but every time they do his levels go up just a little bit, so he is still hanging onto that little bit. We hope that after the drains come out he will be able to breathe a little bit better which will help him to get off of the oxygen. It is still so hard for me to see him in his little bed having to go through this but I just keep reminding myself that this surgery has made his future a brighter place.

Greg and I have been going a little stir crazy. We have been getting out to have lunches and dinner's but sitting in a hospital all day is not the most enjoyable thing in the world. I cannot wait to have a home cooked meal when we get home, eating out everyday is actually not that fun. I told Greg that I don't want to see another restaurant for about a month after we get home with Dylan. The doctor's told us if the tube's come out soon we will most likely be home Sunday afternoon. So we pray for that, but again it is all on Dylan's time and I want him to be 100% before we get in that car. We will still have a little road ahead of us as far as caring for Dylan when we get home. We will want to make sure we keep him away from anyone that is sick and any sick kids. This is cold and flu season and if Dylan gets sick for any reason he will be right back in the hospital. Now we can't keep him in a bubble but at least 6 weeks post surgery. We will also only be able to lift Dylan by his neck and bottom. They DO-NOT want us lifting by his arms. The sternum needs to heal and get back to normal. He will be on Tylenol and Lasiks when we get home also. The Tylenol is to manage his pain that he will still have and the Lasiks is to help with his blood pressure, any fluid that is built up in the heart and also to help his weak heart get better. So even though we are home it will still be a recovery time and keeping him safe and sound.

Greg and I could not be happier with how things are going. Dylan's is doing amazing with his recovery and the whole staff here at the hospital has been nothing but amazing! They have become our second family. I still cannot believe our little man went through a major heart surgery. They literally stopped his heart, put him on bypass, fixed his heart and started it up again like nothing ever happened. I am so thankful for our modern medicine today and all the amazing surgeons out there. I don't know where we would have been or how Dylan could of survived with out this amazing procedure.

Our Family Bond Through God's Love

Trusting God in hard times. It may be disastrous not to. Whatever happens, refuse to fear, don't panic, but first seek God's counsel. If it is unclear at the time, seek the counsel of proven Christian people. God can speak through them, too. No matter what is going on, remember what Jesus said. “The things which are impossible with men are possible with God.” (Luke 18:27)

Dylan Surgery-Day 3

Well yesterday was another good day for Dylan! Everyday he is getting stronger and stronger. They took Dylan off of his heart medication that was helping his heart function post surgery. This was a huge step in that his heart is working very well on its own. We were so excited! They are still keeping him on Versed and Morphine since the tube drains have still not come out. One side is clearing up but the other one let a little more out over night.

Yesterday I think was the biggest day for Greg and I. We finally got to hold our little guy after 48 hours of only being able to touch him. I don't know about anyone else but those were the longest and darkest hours of my life. I hated that I could not hold him. I wanted to just snuggle him up. When he got into my arms something never felt so good in my entire life. I cried lots of joyful tears. The nurses were even crying they were so excited! I think I almost held him for 2 hours. The nurses and doctors continue to be amazing and so informative and supportive through all of this. They keep asking Greg and I if Dylan ever cries? We told them no. This is his personality and just who he is. They just cannot believe with how big of a surgery he has had that he has not really cried once. He is just such a good boy!

For the most part Dylan continues to be the same. He is eating almost 4 ounces at every feeding still and sucks that bottle down. Before Dylan's surgery and his heart being fixed it would usually take me about an hour to feed him 4 ounces and sometimes he would only eat 2 to 3 ounces. When your heart is pumping as fast as his was its really hard to eat it is like a full time job for him. Now that his heart is fixed and the valves are all back together he is eating 4 ounces in about 15 to 20 minutes. This is awesome!! Another day of awesomeness for our little man. We are so proud of him and when we get out of the hospital he can have anything he wants!!!!

Dylan Surgery-Day 2

As you can see I have been writing these post a day late. I have been telling myself that I would write them at the end of everyday, but unfortunately my eyes cannot stay open one second longer by time we are ready to settle down and get some sleep.

Yesterday they took Dylan off of his breathing tube around 12:00pm. In the morning they were lowering the oxygen levels so by time they took it out he was pretty much breathing on his own. They also took him off of his sleeping medication so he could be a little more awake and aware of everything that was going on. They are still giving him pain medication as he still has the drains in from surgery. These are the drains that have been draining the fluid from his heart. Hopefully tomorrow he will get them removed. But one day at a time for this little guy. The doctors say that the drains are what causes them most of them pain so once those are out he will start to feel a whole lot better. Once they take the breathing tube out Dylan was not able to eat for 8 hours, I know it seems like a very long time but it actually went pretty quick. By 7:00 we were able to feed him a little bit of formula. We all thought he was not going to take much since he was still a little out of it but he sucked that bottle down. Again we could only give him about 2 ounces. We did not want to overwhelm his little belly and get sick.

So through out the night he ate every 4 hours and at every feeding he ate a little bit more and a little bit more. He slept pretty good through the night and mommy and daddy slept pretty good also. Of course you never really get great sleep in hospitals but we make do. Greg and I are actually sharing a little couch bed in his room, but neither of us want to leave his side. Dylan is making an AMAZING recovery so far and getting stronger everyday. With this surgery it is one day at a time. We hope that we will be home soon but again it is all up to him and how he feels. The doctors and nurses have been awesome and we could not ask for a better team! Hope everyone is having a great week and will update more on Dylan's recovery later!

Dylan's Surgery-Day 1

Well I think Greg and I actually got through one of the hardest days of our lives. Yesterday Dylan went in for open heart surgery to repair 2 holes in his heart that he was born with. If you have been following my blog you will know that his two holes were something that were never going to fix themselves so he had to undergo a major surgery to repair them.

Dylan has what's called an Atrioventricular septal defects (AVSD) are a relatively common family of congenital heart defects. Also known as atrioventricular canal defects or endocardial cushion defects, they account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome. (About 15 percent to 20 percent of newborns with Down syndrome have an atrioventricular septal defects). The primary defect is the failure of formation of the part of the heart that arises from an embryonic structure called the endocardial cushions. The endocardial cushions are responsible for separating the central parts of the heart near the tricuspid and mitral valves (AV valves), which separate the atria from the ventricles. The structures that develop from the endocardial cushions include the lower part of the atrial septum (wall that divides the right atrium from the left atrium) and the ventricular septum (wall that divides the right ventricle from the left ventricle) just below the tricuspid and mitral valves. The endocardial cushions also complete the separation of the mitral and tricuspid valves by dividing the single valve between the embryonic atria and ventricles. An atrioventricular septal defect may involve failure of formation of any or all of these structures.

Greg and I have known that he will have this surgery since the day he was born, but the reality of it finally set in this week. We were so nervous for Dylan to have to go through this and my heart hurt so bad for him. I wish as a mother I could have the surgery for him. Dylan is our little fighter and no matter what we new he would do awesome! Yesterday we checked into the hospital at 6:00am and we waited in the short stay unit till the nurses and doctors were ready for his surgery. It was a long hour waiting up for that surgery because we were not aloud to feed Dylan 6 hours before his surgery so he was a little fussy but finally passed out and took a little nap. When the OR nurse came to get us to walk us to the surgery room my heart honestly dropped and for one minute I thought I was going to pass out. As we walked down that hall way I held Dylan tighter and tighter, I new in just a few short minutes he would be undergoing one of the biggest surgeries he will ever have to experience. As we entered the room and the nurse said " I need to take Dylan now" my body shook so bad and Greg and I cried like we never cried before. We hugged and hugged him and I could not let go of him. Finally the nurse took him and said " we will take care of him"! In my head I knew that but the reality sunk in and all these over whelming thoughts started to run through my head. The thoughts that I have tried so hard not to think about but they finally came out. That thought of never holding my son again, never kissing those lips and never smelling his skin and never holding his little hands in my hands again the thoughts of something going very wrong, yes I thought of everything!!!! Greg and I our very strong in our faith and we knew God would be watching over him, but honestly no matter how strong you are I think with something so big you can always question, right?? As I am writing about this my stomach still turns into knots.

After we handed Dylan over we walked over to the waiting room where the next 3 hours would be the longest 3 hours of our lives. Our whole family was there to keep Greg and I company so that was nice to keep our mind off of everything. I could not eat, I could not focus on anything but the fact of waiting for the doctor to come out and tell us that everything went great! Well finally after 3 hours our doctor came out to tell us that everything went great and Dylan did awesome. This was the best news ever!!! Once we talked to the doctor we headed up to his room where they would be bringing him over and would stay the remaining of the week.

I know the doctors prepared us for what we would see when they brought him in and let me tell you it was not easy seeing your baby have all these wires hooked up to him. The next 24 hours Dylan would be pretty out of it and on a breathing tube to help him breathe. He looked so helpless and so little, but his surgery was a success and his heart will be strong and his future will be a brighter and better place.

Day one was a very long and draining day. I stayed in the room with Dylan and Greg went to stay in a hotel to try and get some rest. For the most part I slept. Dylan did great through the night. They had to give him some blood pressure medication because it was a little high but that is normal for just coming out of surgery. Other then that they kept him pretty out of it and comfortable. I am sorry if this post is a little all over the place, but I am on little sleep and I think my brain is maxed from all the anxiety and stress leading up to this surgery.



Dylan pre surgey. Waiting for the doctors and nurses



Dylan after surgery

Dylan and Daddy

Heart Of Gold

Well it is less then 11 hours till Dylan will go in for his Open Heart surgery to repair the 2 holes in his heart. As I rocked him to sleep tonight I could not get the strength to put him to bed. I wanted to fall asleep with him and never let him go. My heart aches for him so bad! I cried so hard tonight knowing that I will not be able to hold him for a few days and let alone be away from him for 4 hours while he is in surgery. This will be the longest day of our lives. We have known that Dylan will have this surgery since he was born but now that it is here it is all so real. Dylan is a fighter and will do amazing! Greg and I know we have to be strong for him and we will, but I have never felt so sad and scared for someone in my whole life. I never thought being a parent would be one of the hardest things to do. To be strong for someone else when you are feeling sad and overwhelmed is a hard thing to accomplish, but we will for our little guy.

Today we had Dylan's pre-op appointment to get him ready for surgery tomorrow. Tonight we will have to wake him up around midnight to feed him so he is not so hungry in the morning and since he cannot eat 6 hours before surgery!!! Once we arrive at the hospital at 6am they will start to prep him with IV's and start to sedate him to calm his little nerves. After he is ready Greg and I will be able to walk him to the OR and then at that point I have to hand him off to the hands of the Surgeons and pray for his strength. Dylan will be in surgery for 4 hours from start to finish. Once he is done they will bring him into the recovery room where we will most likely be for the next 7 days.

Greg and I pray for Dylan's strength and courage during his surgery. I pray for Greg and I to have strength through all of this, that God will have his hands on our family and keep us strong. I think when we are all faced with big challenges in life we tend to dwell on why is this happening and this is going to be so hard, instead of thinking that there is a reason and that Dylan's heart will be that much stronger after this is all over with. His little heart will be stronger then ever!! I will keep everyone posted through out the surgery and recovery. Please pray for some sleep tonight for Greg and I. Speaking of I probably did not write everything that I wanted to because my eyes are barley open and all I want to do is to be next to my little man. So in saying that, good night!!

Halloween Adventures

Once again we had another fun Halloween with the family. Every year we all get together at my sister's house for a Chili dinner and some trick or treating with the kids. This year was extra special being we had Dylan and it was his first Halloween. Even though he is not yet big enough to trick or treat it was still fun to dress him up! Hope everyone had a wonderful Halloween and can't wait for the next 2 Holidays!!