35 weeks

Today I write this with a humble and happy heart. Friday we recieved some great news!

The day started out like every other Friday. 7:00 am I had my lovely wake up call by my nurse for my sonogram. Rolled my sleepy body out of bed, headed down the hall and into the exam room. where Dr. Weiss awaited to start the sonogram. The sono started out like every other sono has started at the head and works his way through the rest of the body. He paused while looking at Holt's heart, which after you've seen the pause at the heart you get nervous.  Dr. Weiss said " Hum, I am no heart doctor but his heart looks like it is pumping a little better" He then said he was going to call Dr. Laird (one of the many pedi cardiologist) and talk to him about it. " Baby is still stable, looking good and subjectively his heart looks better" was the report I was told when I left the room.  Later that afternoon Dr. Laird came by and gave us the update from the echo that I had on Thursday. He said that he and Dr. Weiss have discussed the sono and the echo and they both agree that his heart function is showing a little improvement. PRAISE THE LORD!! God is for sure answering our prayers.

We are by no means out of the woods  but we are just thankful that there are signs of improvement and we are not going the opposite way. We will take any little victory we can get! Thank you Jesus!
So what does this mean- we still have critical AS but the left vent. is pumping a little better. Friday we also finally had our consult with Dr. Mendeloff (the cardiothoracic surgeon). He was great, explained in very clear and great detail all our possibilities. He told us that a normal valve and aorta in a baby his size are 8 mm and Holt's are measuring 5 mm (After the consult was over my intelligent husband did the math and said that it is less then half the normal size) and that with a valve this size we will have to have some kind of intervention for Holt, it might be at 2 days, 5 years old or 30 years old but at some point in his life there will be intervention through surgery.  They would like to get him as old as possible, but of course we won't know until we see how the valve will hold up. They are planning to start with the balloon catherization and watch him for a while. If that doesn't work or doesn't hold up then we will talk about surgical options. Dr. Mendeloff explained to us the surgical option called the Norwood procedure, which is the series of three surgeries I have mentioned before. The first surgery will be right away and then we will have another surgery at 6 months and the final one at 3 years old. We have been told to expect to be in the NICU for a minimum of 4 weeks, and of course if surgery is needed then it will be longer.

 He explained and drew pictures of the process of how the re-route the left valve to the right valve and they would use tissue from a body that was dedicated to science to enlarge the aorta. The surgery would be open heart surgery, which means his chest would be cracked open and he would be placed on bipass. If everything goes smoothly then the whole surgery would be 6-8 hours long. There are few risks that happen with a surgery like this, but of course they aren't anything like the risk of not having the surgery. This surgery gives us a 85% survival rate and this hospital is above the national average for sucessful surgeries. We are grateful to go from 50% survival to 85%.

Now we just play more of the waiting game. I have made it to 35 weeks and I've been told that in the next couple of weeks we will start talking about scheduling a delivery date. Please pray for my mind, I can't help but be nervous about that day. I know God is already preparing the OR where the c-section will happen it's just the unknowns that are hard to not think about. Also pray for wisdom for Josh and myself as we have difficult decisions to be made in the coming weeks. We are fully trusting that God is and will continue to work out the details.

 I want to share this picture of Holt with you, isn't he just precious?  Please pray for strength for this little guy. He has such a long hard battle a head of him.

Thank you for your prayers and encouragement.