Every heart has a story...here is Greyson's.

We are glad to be a part of the Every Heart Has a Story event this year.  It is set up by a fellow heart mom Stefanie and you can view it HERE. 

We went in for our 20 week ultra sound excited to find out if we were having another little girl or a little boy. Our ultra sound tech knew we wanted to know and she was pretty quick to let us see the goods. A boy it was. The morning turned out much differently then we had planned when we went to the doctors appointment and were told our baby had a heart defect. We were immediately sent for a more detailed ultra sound and were told our baby had a whole between the chambers of his heart but they couldn't tell us more and in 5 days we could have a fetal echo to tell us exactly what was going on with his heart. We were devestated. We had known we were having a boy for mere hours and had made plans for his life, plans that didn't include a heart defect and the unknowns that came with it. Looking back I am extremely thankful that our ultra sound technician found the holes in his heart. Our lives could have been very different without the prenatal care and time to adjust that she was able to give us.

Our fetal echo showed that our boy had double outlet right ventricle, transposition of the great vessels, and a ventricular septal defect. The surgeon, Dr. Fiore, was pretty certain he could close the VSD and do an arterial switch operation.

The remainder of our pregnancy went relatively normal aside from the weekly biophysical profile's and non stress tests. We had an amniocentesis on October 1st to check lung maturity and found that the lungs weren't fully ready. However baby was ready and 6 days later my water broke, luckily we were already at the hospital because of contractions. We were scheduled for induction on October 8th but clearly baby had other plans.

Greyson Dale Knigge

Greyson Dale was born on October 7th, 2010 at 6:30 am. He weighed 6 lbs 6 oz and 21 1/2" long. He looked very healthy and was later transported over to cardinal Glennon hospital where he had another echo. During this echo they confirmed his VSD, DORV, and TGA. They also found he had pulmonary stenosis, a blockage below his pulmonary artery and that his valves had attached through his VSD. They decided to an balloon septostomy at 10 days old and we were home by the time Greyson was two weeks old.

Hanging out in the NICU

Getting ready to head home!!!

His saturations held in the upper 70's for a while but started to dip and he was put on propranolol to help his pulmonary blockage. This was the only medicine he was on. We scheduled his Glenn for march 3rd. In true Greyson fashion he apparently didn't want to do things according to our schedule. His saturations dropped into the mid to lower 60's and Dr. Fiore decided to do his surgery the next day. We were terrified but somewhat relieved to not have 10 more days to dwell on things. We took Greyson to the OR on February 22nd just two days after his sister's 2nd birthday. His surgery went excellent. He was in the PICU for 3 days and on the floor for 2 days. He did excellent recovering from surgery.He went home on half a baby aspirin a day which he will be on for life. He was a totally new baby.  We didn't realize that we had taken home  a newborn and he had never grown into a 4 1/2 month old boy.  We got our 4 1/2 month old after surgery.  It was a real shock to see how little energy he did have. 

Greyson & Addison playing the night before his Glenn.

Just extubated the day after surgery.

Getting some rest.

The only smile he would let me catch 3 days after surgery.

Playing with the dinosaur sissy got him the day before we went home.

Greyson still has his fontan when he is 30-35 lbs but for now he is doing excellent. His saturations are typically mid 80's but have gotten into the low 90's. He doesn't have any other affects from his heart defect and eats and grows very well. I know we have gotten very lucky and never do I take for granted how well he is doing.

Who knows what our future holds. For now we have our little man with us and we will try to live life day by day and not worry about the upcoming surgery.I know, like most parents, I am terrified that my children will be taken from this earth before me, it makes it even harder when you have to send your child into surgery knowing there is a chance they won't come back alive or that they will come out in pain and wanting comfort that you can't totally give. We would trade places with him in a heart beat if we could but he is such a strong little boy and has taught us so many lessons. He has grown so much in the past 10 months.  Monday the 22nd will be 6 months since his surgery.  I can hardly believe it has been so long and we have come so far.