The Up-Side to Our Downs...

It's been a little bit since I have been able to get on and write something. For those of you who don't know our little Claire has been in the hospital. Today will mark the 22nd day we have been here; Clarie got admitted on the 8th of January and it has been a bumpy ride; hopefully we are going forward into a clear path soon.

To fully understand why we are here, I guess it is time to explain why it takes so long for a three month old baby to get over as to what started out as a common cold. Sweet Claire-Bear Wise is such an amazing little fighter and has been since the moment I felt that first little kick in my stomach. At 22 weeks of pregnancy Brad and I found out that Claire has a heart disease called AVSD: Atrioventricular septal defect; which is a defect that involves the whole area of the upper and lower chambers of the heart; where the atria joins the ventricles. There is a large hole between the lower portion of the atria and the upper portion of the ventricles and this is associated with a abnormality of the valves separating the atria from the ventricles. The severity of the defect depends largely on the supporting attachments of the valve to the ventricles. There is an increased flow of blood to the lungs through both the ventricular and atrial components of the defect. In addition, the abnormal atrio-ventricular valve leaks,(our little leaky heart girl) so that when the ventricles contract, blood flows not only forwards to the body and the lungs, but also backwards into the atria. The back-pressure effect on the atria causes congestion of blood in the left atrium in particular, and this in turn causes congestion in the veins draining the lungs. It is found in approximately one-third of babies who have Down syndrome.

**So in English** Claire has Down Syndrome and a heart disease which instead of two ventricles, she has one that makes a large hole in the center of the four chambers of her heart. With the hole that Claire has, it leaks blood into her lungs which makes it extremely hard to get over a respiratory infection. Claire has been diagnosed with a viral pneumonia which is particularly made up of three virus' that she has; they are RSV, Rhino virus, and Inner virus. Claire has finally tested negative now for the RSV which is a small step closer to home. With all the virus' Claire has been trying to fight off she has needed some help breathing and eating. She has now been on a feeding tube which goes straight from her nose into her little belly and she is on oxygen. The doctors have not given us a "go home date" Claire has always marched to her own little beat and only she can tell us when that day will be. All we can do for her is keep her comfortable, help her with feeding and oxygen, give her all the love we can, and PRAY. She is a fighting diva and in that 3 month old 7lbs 8oz little body she has more fight in her than in anyone I have ever met. Claire's heart is suppose to be repaired by open heart surgery when she hits the lucky 10 pounds and when she is in the best health she can be in.

As a parent the last thing you ever want to experience is to see your child struggle; there is no worse feeling than to feel completely helpless and know there is nothing you can do to make that sweet child better. We put it in the hands of God and just have faith. The number one thing that Brad and I have done and will continue to do is see Claire for Claire. We will not compare her to an average baby, a down syndrome baby or to our son Canon. We will fight for her and show her she is her own person and to not hold back in the person she wants to be and the person she will be. There will be no labels on our child; like everyone else she is a child of God. Every day Brad and I push Canon to strive to be the best person he can be, there will be no difference in what we do with Claire. I know there will be struggles a head and I know every day won't be perfect but what I do know is that every day will be faced with an open and optimistic mind set that each day we are given is a new chance for success and an opportunity at a greater life.

I will try and do better on getting on here and giving an update on sweet little Claire Bear and to keep the blogs coming on my journey to becoming a "Super-Mom." Thank you for all the prayers and comments people have sent us on Facebook, they are much appreciated.