Morgan's Birth

Morgan William Nessler was born on March 27, 2009 at 9:39 am and weighed 9 lbs 13 oz. Shortly after being born his blood sugar level dropped very low, as Tiffany was diabetic during her pregnancy. Morgan immediately had to be put on an IV of sugar water to help regulate his levels. He also had to have his blood sugar tested every hour by pricking his feet and getting his blood tested. He did pretty well with this, although his poor little feet had little holes and dried blood all over them. Shortly after, Morgan developed some breathing problems. He would breathe quite rapidly. Not really like he was out of breath, just short, fast breaths. After more tests they found that Morgan had a heart murmur and a small hole in his heart. The doctors told us not to worry, that most of the time these things will heal themselves(which it eventually did), but at that point I don't think anything could be scarier than finding out your new born child has a hole in his heart. Morgan ended up spending 5 days in the NICU. We also spent those 5 days in the hospital with him. We weren't about to go home without Morgan! Every day the doctors would tell us that "maybe tomorrow" he could sleep in our room with us, or possibly go home, and every day that would turn into another "maybe tomorrow." I realize that 5 days isn't that long of a time, but to us it felt like an eternity. Eventually that 5th day came and we were able to take Morgan home. He was doing quite well at home and his doctor appointments showed improvements in his breathing and his heart, and his blood levels were right where they should be. Then on May 6th we received a call that Morgan had tested positive for Cystic Fibrosis. Wisconsin is one of the only states that does screening for CF at birth, THANK GOD! We were confused and scared. We had heard of CF before, but didn't know the first thing about it. In a nutshell it's a respiratory disease that mainly affects the lungs. The body creates too much mucus and there's no way to get rid of it, especially in babies. It can cause infections and other serious problems. Through treatments and medications it is treatable, but not curable, and can be fatal. We had a TON of questions. We met with his team of doctors at Children's Hospital to go over the plan. Let me just say that his team is absolutely incredible! We are so blessed to have each and every one of them helping our son stay healthy. The day we met with them was a very long and emotional day, but we walked out of there with a little more confidence and understanding about CF. We said to each other, "We can do this. We HAVE to do this." His life is in our hands. Treatments and medications began right away. We never thought that we wouldn't be able to do this, but at times I think any normal person will think "HOW" are we gonna be able to do this? We do it like anything else. One day at a time! As I said, there is no cure for CF. Life expectancy right now is 37 years, and that's in the best case scenario. However, advancements and research are extending that number all the time. We can't allow ourselves to look too far into the future. We can't allow ourselves to think "what if." We have to live for today and celebrate Morgan's life today. We can worry about tomorrow when tomorrow comes. Research is improving all the time, medications are improving all the time. We have all the confidence in the world that there will be a cure for CF in Morgan's lifetime. There's no choice but to believe that. Today Morgan is a normal, healthy boy. His checkups are spotless, he is right on track with his weight, and he is having no side effects because of his CF. There is no reason that he won't grow up to be a normal kid just like any other child. He can do whatever he wants to do. CF does not define him. Sure there will be challenges and difficulties along the way, but we'll worry about those when we get there.....