I had the worst night's sleep on Tuesday night. I tossed and turned all night long. I guess I was more anxious about this appointment than I was willing to let on.

Since Jason was unable to take the day off from work my Daddy came with me to my appointment in Tampa. Dr. Huhta goes between All Children's Hospital in St. Petersburg and St. Joseph's Women's Hospital in Tampa. This day he was in Tampa so at 8:30 in the morning we started our 3 plus hour drive.

It was fun having Daddy drive me down. We talked and had biscuits from Hardees. Drank lots of water but didn't need to pee surprisingly enough. We made great time. So great in fact we had 2 hours to waste before the appointment. So we called Mom and she set us off on a mission. She needed Flutterbyes for my nieces for Christmas. We found a Toys R Us and even though they had them I knew most places had them cheaper. By almost 10 bucks! So we left there and found a BJs. They had them. We bought them. Mission accomplished! We wondered around for a little bit and then decided to get going.

We drove to the hospital and almost didn't make the appointment. We got lost and no one could tell us where we needed to go. It was frustrating. They couldn't even find Dr. Huhta in the directory. I was getting very annoyed. I didn't just drive all this way for nothing! Finally I called the St. Petersburg office and they told us where to go. As soon as we got back to where we started (the same place the first person told us we were in the wrong place) my dad went straight up to the girl and got on to her about wasting our time. She was apologetic and got us signed in immediately. It was then I realized just how nervous my dad was too. He is usually so easy going and level headed.

Lori the ultrasound tech came and got us and we got down to business. I'm a talker so I was making small talk and then the door opened. It was the infamous Dr. Huhta.

When we would go see Dr. Lacey the tech would perform the sonogram and when done would upload the pictures to Dr. Lacey where she sat in an office and reviewed them and made measurements and notes and then would come in and talk to us.

So, here's Dr. Huhta in the room with us looking over the shoulder of the tech asking questions, looking at the scan as it's happening and you can see his mind working. All the things Dr. Lacey does in her office with the help of pencils and paper and calculators Dr. Huhta is doing in his head. Then he asks "And the atrial septum?" So Lori scans over it again and, under her breath, says "looks OK to me". My dad and I both gasped! I begged my dad to just sit tight and we would talk about it when the sonogram was done. I just knew they were going to look at it from another angle and we would hear "Ahhh, now I see" or something to that affect. And just as soon as it started the sonogram was done. Dr. Huhta (who had introduced himself as soon as he walked in) told us he would meet us in the conference room as soon as I was cleaned up and ready.

The very short walk to the conference room, which was just simply around the corner from the sonogram room, seemed like the longest walk of my life. What was he going to tell me? We sat down at the round table and he began to talk. The room started to spin. I couldn't believe what I was hearing.

"No need for atrial intervention" (translation - he doesn't see a need for an atrial septostomy)

"Mild atrial restriction"

"I like to see a mild restriction in Hypoplastic Left Heart babies."

And the one that had me in tears.....

"3 out of 4 chance of seeing your son playing in Kindergarten!"

So because of one simple phone call my son's chances at life have gone from 10% (or worse) to 75%. I still can't believe what I heard.

Dr. Huhta explained our son has a mildly restrictive atrial septum. In his mind and experience it is not severally restrictive. He said he actually prefers a mild restriction because in an HLHS baby the atrial septum being completely open would allow blood to over flow the lungs once born and that is worse for our little guy. A mild restriction prevents a blood overflow into the lungs. Our baby was showing him all positive things. As positive as it can be for an HLHS baby.

He went on to explain they perform the Sano Modification to the Norwood procedure which gives babies a 15% mortality rate instead of 20% with the regular Norwood. Their mortality rates on the second and third procedures (the Biodirectional Glen and the Fontan) are in the single digits. More specifically 1-2%.

There were so many other things said in that meeting that I will have to have another post just to further explain everything. Bottom line was ~ Our baby has a chance! Prayers, fasting, Priesthood power! It all works. Miracles can happen! Our baby might just survive this.

In case you were wondering what the questions and answers were I am posting them. More for myself in case I lose my notebook but here they are nonetheless.

How is his growth? the ROC says he's 58% for weight. A good size.

What about his aorta? Has it grown? I didn't measure his aorta yet today. It was 2.6 mm in diameter last visit. I will be measuring it later. We don't expect it to grow as HLHS babies' aortas don't typically grow since their growth is dependent on the left ventricle also growing.

Is the size of his aorta important? I was under the impression it was since you measured it last time but my husband seemed to think it wasn't as important as other things. The aorta size is a very big deal. When doing the surgeries we go in through the aorta so the larger it is the better the chances. Basically, Aorta size equals mortality rate. We are excited to have anything greater than 2 mm. Your baby has 2.6 mm. That will serve him well for surgery.

How often does Wolfson's perform HLHS surgery? I can find that out.

How often does the surgeon perform HLHS surgeries? Our cardiology team performs approx. 12-15 HLHS surgeries a year.

How often does the surgeon team perform heart surgeries, not specifically HLHS, yearly? At Wolfson's we perform approx. 300 plus heart surgeries a year. In Gainesville we perform more than that. So it is safe to say over 600-700 heart surgeries a year on babies/children.

How much time will we have with Baby Brother before they whisk him off to the NICU? We leave that up to the NICU team who will be present at the delivery. They are constantly observing him for any signs of distress. If everything seems ok and he isn't distressing then generally 10-15 minutes.

How long before he can have visitors in the NICU? Usually the NICU team needs about an hour to get him prepared and the IV set up. Then Dad gets priority. After Dad, grandparents. They allow 2 people at his bedside. They are generally fairly lenient about who you bring in as long as Dad or a grandparent is one of the people with the visitor.

Is his atrial septum in tact or open? His atrial septum is open.

That's good news, right? Yes! This is very good news. Otherwise we would have to go in with a balloon and open it. Hopefully it will stay open.

Because we are optimistic people and KNOW he will be coming home, will he need a special carseat or any special equipment once he is home? No. He won't be released to come home until he is off monitors and by then his wounds are healed and there are no restrictions.

If I have him on Wednesday can we do surgery that Friday? No. First of all we do surgeries on Wednesdays. (Jason and I both remember her saying they did surgeries on Fridays. Oh well..) Second he cannot have surgery until he is at least 5-7 days old. Since you are a scheduled C-Section it makes the scheduling of everything else a little easier. We recommend you have him on either Monday or Tuesday and he will be scheduled for surgery the Wednesday of the next week.