Friday, January 1, 2010

We found out about Greyson's special heart durign our routine 20 week ultrasound.  Boy did we not know what was coming.  We had expected to find out if this baby was a boy or girl and we sure did but we also found out that there was something wrong with the baby's heart. 

Three days later we had our first fetal echo in which we found out that Greyson had Double Outlet Right Ventricle with Transposition of the Great Vessels.  The prognosis was good, they would likely be able to do some surgery to repair his heart and that would likely be a Rastelli procedure.  A few months later we had another fetal echo and meet the heart surgeon Dr. Fiore who is awesome!  He told us that it looked like he would be able to do an arterial switch operation on Greyson a week or so after he was born and we would be able to take him home.  This was exciting news because it would be changing our sons heart back to normal anatomy. 

Greyson decided to come on October 7th, 2010 at 6:30 am. I was to be induced the next day but he apparently didn't like that idea. Luckily I had been having contractions for most of the day and we were at the hospital (2 hours away) when my water broke. I got to hold him for a few minutes before they took him to put his arterial lines in. He was transported to Cardinal Glennon Children's Hospital 15 minutes away and after some batteling I was released to go be with him 12 hours after he was born.
Right after birth

Snuggled in his "Time Capsule" in the NICU

Cuddeling with mommy in the NICU

After he was transfered they did an echo on him to get a better view of the anatomy of his heart. It turned out that he did have to two previously mentioned defects as well as pulmonary stenosis, sub-pulmonic blockage, and his tricuspid and mitral valves attached through his VSD. This took the arterial switch operation off the table. I was in tears when they told us that the new plan was to do an atrial balloon septostomy and send us home. We would then come back for two more surgeries over the next 3-4 years. He was going to have a modified Fontan repair, in which they do not do the Norwood. Greyson spent 2 weeks in the NICU total and went home 4 days after his cath (balloon spetostomy).

He was great and I held him all the time not knowing what this next surgery would hold. The surgery was finally scheduled for March 3rd (my birthday) I had wanted to wait until after his sisters birthday on Feb. 20th because I didn't want her to have to be in the hospital for her birthday (unless necessary of course). I took Greyson in to the pediatrician for his synagis shot and saturation check on Thursday and his sats were in the low 70's. We decided to come back in on Monday (after his sisters big birthday weekend) and recheck his sats. When we came in on Monday Greyson was hanging out in the mid-60's and would only occasionally come back up to 70. I called his cardiologist and he said to take him back in tomorrow to see if things were different. Not 15 minutes later I got a call from the surgeon wanting me to bring him up tonight and do his surgery tomorrow! I was floored but somewhat happy to be getting it out of the way. I still had the feeling of wanting to run away with him and never let anyone hurt him, but I knew in the long run I would be hurting him ;)

I ran home and packed clothes for all of us for at least a week, not knowing how long we would be up there. Greyson had to stay in the hospital the night before his procedure and was the first and only one on the books for the next day. He got to nurse the last time at 3 am and I remember feeling so sad that this might be the very last time he ever nursed.

On February 22, 2011 we walked him down to the operating area, carrying him in my arms. I handed him over to the nurse and he looked up and smiled at me as if to say "don't worry mom, I will be fine, I'll be back in a few hours."

The surgery didn't seem like it took to long and we had plenty of family and out little girl to help distract us. Barb was awesome about updating us every hour, even if there was nothing to tell. We got to see him that afternoon and he looked as I had expected. We spent a total of 5 days in the hospital before we got to go home. His Glenn surgery went off without a hitch, even if he had decided when it needed to be done.

Right after his Glenn Operation

Recovering in the PICU

Sleeping good!

3 days Post-Op.  He was smiling a lot but this is all he would let me get on camera.

Sissy brought him a new dinosaur toy and we just told him we were going home today!!!

One thing we have learned about Greyson is that things will happen on his schedule and no one elses. We still have that Fontan looming over our heads and we know that will happen when Greyson feels it should (the doctors are planning for next summer).

Such a silly boy!

Watching the homecoming parade!

1 year old!

I guess heart surgery makes you grow up really fast, doesn't he look so grown up in this picture?

Below is a more detailed list and pictures of Greyson's heart and the repair he will be having. 

Greyson was born with a Complex CHD which doesn't fit into a set catagory. Here is a normal heart for comparison.

This is the closest to what Greyson's defects are that I can find a picture of.  Below I will explain these defects.

 He has:

Double Outlet Right Ventricle: Both of the hearts outlets (Aorta-going to the body, and Pulmonary Artery-going to the lungs) come off of the Right ventricle.

Transposition of the Great Arteries: The Pulmonary Artery is supposed to come off of the Right Ventricle and the Aorta is supposed to come off of the Left Ventricle.  In Greyson's case both of these come off of the Right Ventricle (the left ventricle has no artery come off of it) but his are switched so the Aorta is further on the right and the pulmonary artery is closer on the left.

Ventricular Septal Defect (VSD): There is a hole in the wall between the two lower (ventricles) chambers of Greyson's heart.

Atrial Septal Defect (ASD): A hole in the wall between the two upper (Atrium) chambers of the heart.  Every single baby is born with an ASD but it closes shortly after birth.  I don't know if Greyson's would have closed on it's own but when he was 10 days old they went in through his umbilical vein and ballooned this so that it would not close.

Pulmonary Stenosis: Greyson has a narrowed Pulmonary Artery with a large peice of muscle blocking the amount of blood that can go to the lungs.  This is why he had to be on Propranolol (a muscle relaxer) before his open heart surgery.

Valve Issues: In Greyson's case his Mitral & Tricuspid Valves (the valves between the atrium and ventricles) attached through his VSD. 

Because of these last two issues they couldn't do a repair that would allow his heart to still have 4 chambers.  They were going to close the VSD, leave the ASD, and switch the two main arteries (aorta & Pulmonary Artery) and he would essentially have a normal heart.  Instead Greyson will have a Fontan Repair. 

Greyson had his Bi-Directional Glenn Open Heart Surgery on February 22, 2010.  During this procedure they detached his Superior Vena Cava (the vein bringing blood back from his upper body) from his heart and attached it directly to his pulomnary arteries, and detached the pulmonary artery from his heart.  The picture shows a shunt removal, Greyson didn't have this shunt removal because he didn't have to have the shunt put in that some babies do have to.  It also shows no right ventricle but Greyson does have a right ventricle and his Aorta comes off his right ventricle.

When Greyson is 30-35 lbs he will have the completion called the Fontan.  In this repair they will attach his Inferior Vena Cava (the vein that brings the blood from his lower body back to his heart) to his pulmonary arteries. The picture shows an artificial wall to make a chamber, since Greyson already has a right ventricle he will not have this wall, but will have an artificial tube connecting the inferior vena cava to the pulmonary artery. This will mean that his heart will only pump blood to his body and the blood returning to his heart will "drain" directly to his lungs.  He is and will always be on aspirin to thin his blood making it easier for the blood to return to his lungs.

About Us

Welcome to Greyson's Blog.  This is Greyson's Blog but also a blog about our entire family. 

I am 26 years old.  I married my wonderful husband, Nate on September 16, 2006 in Las Vegas, NV.  We wanted a wedding and honeymoon all in one without the hassle of planning everything so we had a beautiful outdoor wedding.  After a VERY quick engagement, we had been together   I text Nate one day in August and asked him if he wanted to go to Vegas next month and get married.  I was super surprised when he text me back and said sure.  And it happend quickly after that. 

We waited a year after our wedding to try getting pregnant.  It took us 10 months to get pregnant and in February of 2009 we welcomed our sweet daughter Addison Lynn.  She spent her first christmas in the hospital with a very bad UTI.  She is now on Antibiotics daily with the hopes that she will grow out of it.  When all this happened we thought it was the worst thing ever, little did we know.

Shortly before Addison's first birthday we learned we were pregnant again.  In May 2010 we found out we were having a boy, we also found out our son had a Congenital Heart Defect.  You can read his full story HERE.  We welcomed Greyson Dale on October 7, 2010.  We have been on quiet a journey with both of our children and have a long way to go.  We are so proud of both of them and wouldn't trade them or their "defects" for the world.