August 17,2012

I am first going to paste what Gary wrote on our facebook page in case I forget to post anything. Also if anyone wants to look it up it is Our Journey With Noah Alexander

The last 24 hours have been the longest, and most difficult 24 hours of my life. I have been at Cincinnati Children’s Hospital since Wednesday afternoon only walking outside for a half hour to walk with my mom. I have been watching my son fight though so much in less than two days of life, it is amazing how strong he is. The last 24 hour I broke, watching Noah and seeing what he is going through is something I would not wish on my worst enemy. Seeing everything first hand I just kept asking God why can Noah not just catch a break…why does Noah have to have so much going wrong with him??? As the surgery team wheeled Noah into the operating room this morning I found myself questioning is there a God and if so why is he such an ass hole. After 7 ½ hours a surgery I found that there is a God and we work on his time table not ours. I found that things that are horrible are not horrible and are just blessing in disguise…finding out after surgery that a successful cath procedure would have killed Noah and surgery was the best option put everything in prospective…. I remember now that God does test us every day and God does things in the way he wants them done…and I know understand the statement from Angles and Demons “God answers all prayers…sometime the answer is no”. I have also seen the amazing power of prayer and how amazing human beings can be…People I never met or talked to are following our story sending us prays…People have started prayer chains and have had their churches add us to their prayer list. I can say first hand prayer works and I am thankful for each and every one of you all who have said prayers over the last two days….I beg everyone to keep them coming Noah can use all of the prayers he can get…One of the hardest things for a parent in my position to do is letting go understanding that there is nothing I can do…and putting everything in God’s Hands. There is no worst feeling in the world than handing your child over to a group of people who you met for less than ten minutes while they had you sign a consent form…Several times a year we in the Cincinnati area hear how Cincinnati Children’s Medical Center is one of the best hospitals in the world…well that is the biggest understatement in the world…the team of people here at CCMC are the most loving, caring, understanding, and helpful group in the world…from the doctors to the nurses to the housekeepers who know my name and Noah’s name and check in on us every day…they are all amazing and would not ask for another group of people to take care of Noah they truly treat him as their own… Noah is still very critical and has a long road ahead of him…he will have ups and downs but I know he is in the best hands in the world and I literally trust these angles with my sons life…I have been told over the last two days that Noah is strong like his dad…I could only wish I was just a fraction as strong as Noah…last night and this morning I broke…I was ready to give up and at 36 hours old Noah fought and continues to fight…Noah has taught me what it means to fight for something you truly want….He has taught me what strong really is…at two days old my son is my hero…and I know I will never give up on him…I will fight for him until my last breath.

I agree with him that the last 24 hours have been the hardest of my life truly to me the last 60 hours have been the hardest but the past 18 hours have been the most difficult of that. To be away from your baby is hard but to be separated from your sick baby is so hard. I felt bad because I couldn't be here I feel bad because Gary had to be here alone. There is nothing like feeling helpless 5 minuets away from 2 of the people you love most in this world. I never realized that I could miss my husband in a way that I do and did. I miss my other babies and need them as well.....First I want to say that I never realized how for granted I have taken our three healthy children. I realize how truly blessed I am that they are never sick and have no medical problems. Sitting here watching the most adorable 60 hour old boy in the world sleeping fighting for his life is the hardest. I have spent the last 18 weeks praying that we would not be here but we are and I have to look at that God chose us to be his parents for a reason. I do not know that reason and never will until I meet God and can ask him but we are facing the challenge head on and will give Noah every fighting chance period end of story. I will go to the end of the world for him and fight anyone who tries to get in my way. He is the strongest person I have ever met. He is fighting this with more power and strength then I ever knew someone who is 60 hours could. He has already endured more then most adults even begin to think about. He is a survivor. That is why we named him Noah :) 

When Gary called me this morning we had to make the decision to go to surgery at that moment or let God have Noah at that moment. I had no thought but we had to do surgery but there is always that thought in the back of your head that says are you sure you are making the right decision. I have told myself that I will not ask what if if things don't go our way or a procedure doesn't go the way we want it to or thought it should. We are making the best decisions in the world that we can and we don't care if everyone agrees with it or not. We will choose what we feel as his parents is the best course for Noah. I knew from the beginning of this 18 weeks ago that I would fight for my son no matter what. I would have picked up and moved everyone to where ever in this country he can receive the best treatment and care. Thankfully we live less then 15 miles from one of the best Children's hospitals in the world :) and even more thankfully we have one of the worlds top 5 cardiac programs here. We truly are blessed with not only this hospital but with the other ones around it. 

To sum up today Noah had open heart surgery to open what we thought was a pulmonary valve but ended up being an entire pulmonary valve construction, so we are very blessed that the cardiac cath did not work because it would have caused serious injury to him had it. Open heart was a very long 7 hour procedure that went better then expected. They had to start emergently as the were doing CPR with out chest compressions to keep him alive. Once they had is chest open and he was on bypass things went smoothly after that. Very slow but better then expected. He is stable and absolutely adorable :)   He is in very critical condition and the next 72 hours will tell us a lot.

We are climbing a mountain and we have to take this journey one step at a time. I know that there will be set backs along the way but I know that he will fight through it and we will be by his side fighting just as hard. Prayers go a long way. God listens and he answers them. God has awesome plans for this little boy and we have a world to show him. And he has 2 big sisters and a big brother who are ready to spoil him rotten and mommy and daddy of course.

I am going to do my best to write everyday and I know Gary is updating our facebook page daily.
As of this moment life is okay and we are cautiously optimistic about the way things are looking currently. Please continue to pray for him add him to church prayer list tell every stranger you meet that this little boy needs their prayers lol. He is so strong and a fighter. I know he will make it through this it is going to be just one step at a time.