~ WE ARE HOME ~

Thanks everyone for the prayers! They worked and God has shown us so many miracles. He is such a fighter. We went to the step down unit on Thursday Oct 14 around 3 pm, only 8 days after his first major open heart surgery. All of the nurses and doctors would come in and say "he is doing so good and that he has followed all of the rules".


With no sleep at all on Thursday they started coming in our room around 8 am on Friday with more information. At this point we were over loaded and had not set foot out of the hospital in days. My head was killing me but God gave us the strength to keep going. They had talked with us about doing an MRI for a research study and we would get results so I told them we would agree to do it. Since I work in MRI I knew there was no harm so why not. If it would benefit others and us sure we will do it. Little did I know it would break my heart to see my 2 week old child being wheeled away for another procedure. He did great and didn't need any medicine to hold still. We also got good news from the exam. We had to attend more classes and talk with more doctors on Friday in between feeding and seeing about Jordan. The poor fellow didn't get a break at all - they were coming in at all hours of the day and night checking his vital signs and taking blood. I felt so sorry for him. I just wanted to take him away from all of the pain.


Saturday morning things started out kind of slow. Dr Kirshbom's assistant came in and said "well we've done all we could do and he is doing great so we are sending y'all home". You should have seen the look on our faces - our mouths dropped! She said "y'all know what to do if you need us and don't hesitate to call us for any reason". Yes, don't get me wrong we were ready to come home but we've only been taking care of him for a day and a half and he had monitors on him at every second. Now they want us to take him home and know how to do everything. Another doctor came in and wanted to know if we had any questions. We both said "no" but he thought it would be a good idea to tell us that even if we did everything perfect things could still go wrong. I just looked at him and thought your kidding me. Your sending us home and the last thing you say is even if you do everything perfeclty for him, things could still go wrong. That is just something you really don't want to think about. He has a feeding tube so he is on a feeding pump every 3 hours around the clock and it takes an hour to feed him. He has medicines he has to take around the clock every three hours. They gave us more instructions on feeding and giving him his medicines and out the door we went. We put him in his car seat and he started crying. After trying to settle him down for 10 minutes I looked at the nurse and said "what do I do" she said "you'll figure it out". As we are walking out the door the nurse said "do you feel like your taking home a time bomb"? Not exactly something you want to hear as your walking out the door. I was a nervous wreck and I question myself over and over - did I know how to take care of this fragile little guy? We finally got home around 9 pm and the fun began! Not only is is it difficult to bring home a healthy newborn but one that is very sick.... that's a whole new way of life.


We made it through one night at home! Sunday some of the family came over and he was the best baby all day! He never once got mad and he would wake up for a little while then go back to sleep. But around 12 am another child came to life. Screaming crying and NOTHING I did would help him. Finally hours later he settled down and we were able to sleep for about an hour. Then it was time to feed him and give medicine. By now we are walking zombies! I am not sure if I will be able to make it for another hour. But somehow we made it through the day and once again he is an angel during the day. We would have loved to sleep while he was sleeping but the house looked like a tornado had come through it once we unpacked the car. For all of you that know me and my OCD problem - I have had kicked into overdrive. I couldn't take the mess much longer. Thankfully between Mama on Sunday and Rhonda on Monday I was able to at least get the majority of it put up.


We had our first follow up appointment in Atlanta on Tuesday. That was very interesting - packing the car for us and for him. Let's see we had the diaper bag, a cooler with milk, a bag with his feeding pump and supplies and another bag just in case we had to stay overnight. So it looked like we were moving out once again. We had planned on leaving around 9 am and we finally got on the road around 10:30am. Our appointment was at 2 pm but we were told to get there around 1 pm. We didn't make it on time but we tried! His appointment went well. Dr. Kirshbom said his incision looked great and he had gained a couple of ounces. We were excited about him gaining because he had lost almost a pound. Then we had to meet with another doctor about his shunt. I know they try to help us be prepared but I am so over being told that "he will never be cured and that his days are limited". If we've been told that one time we've been told 100 times. I know it's their job but this is our son that has done amazing and God is with him every step of his journey. We are going to love him and take care of him to the best of our ability. Don't get me wrong its very scary to know the reality of the situation but we can't sit and think about the negatives. He needs us to be positive for him and I have no doubt that he continue to be strong everyday.


We have a long journey ahead of us but with God, supportive family and friends and many prayers I know we will get through it. We have doctors appointments in Atlanta every week for several weeks and appointments every week at home. Home healthcare comes to the house once a week for 18 weeks to check his vital signs and weight. We are trying to find a normal life as possible for him. It's so hard when every time you turn around someone is poking and messing with him. Everyone please continue to pray for him. I will continue to post on the blog when we have updates. My computer time seems to be a lot more limited these day! Thanks for all the support!