I wish I had more time to update my blog, but between recovering from my section, trying to spend time with Julianna, and spending as much time as possible at the hospital with Will, it just hasn't happened. When I do get home, I completely crash.
Julianna is so ready to have mommy and daddy home and not be going to grandparents' houses and aunts' houses. Today, we decided that Joe would bring me to the hospital and drop me off, then pick up Julianna and spend the whole day with her. They are picking me up this evening. We really wanted Julianna to come back up and see Will, but unfortunately she has a pretty yucky nose going on, so we'll have to wait until it's better. It's looking like daddy is going to take her to Sesame Street Live this weekend, so I'm sure she will forgive us some of our absence then.
Will is doing wonderfully! We still don't have a definite diagnosis, it depends on if you ask the cardiac surgeon, the cardiologist or the doctor who did his heart cath. But we do know it is either a less severe form of Hypoplastic Left Heart Syndrome or Shone's Syndrome. A quick description of Shone's Syndrome is that it affects the function and size of the aortic and mitral valves and coarctation of the aorta. It can include any combination of those 3 things. Will has issues with his aortic valve and coarctation of his aorta.
Yesterday, Will had a heart cath done. They went in to do a diagnostic cath and depending on what they found they would proceed to either an interventional Norwood (HLHS route) or would balloon his aortic valve to try and open it up more. It was very scary for us. Will was put under general anaesthesia and had to be intubated for the procedure. They went in through his leg and threaded a catheter up into his heart. They were able to better study how well everything was functioning as well as get exact measurements on size and pressure.
We asked for lots of prayers yesterday and they worked! His left ventricle will be able to support his body's blood supply! That was the most amazing news! It is slightly mis-shapen, but is large enough. This means as of right now he will not need to go the route of open heart surgeries. They decided to try for a 2 ventricle repair and give him a normal heart! They ballooned his aortic valve to allow it to open better and then the left ventricle won't have to work as hard. His left ventricle continues to show improvement everyday when they do his echo. Today was even better still.
We are so thankful for his cardiologist, Dr P (who shall henceforth be known as Dr Awesome), who stood his ground when the surgeons wanted to just do the single ventricle repair. He insisted they give Will more time and see if his heart improved, and IT DID! He still has a lot ahead of him in the next few weeks. Next week he will be scheduled for surgery to fix the coarctation of his aorta (severe narrowing and malformation). Basically they will make an incision under his left arm and remove the section of his aorta that is narrow. They will then stitch the remaining aorta back together.
We have been told by numerous nurses and Dr Awesome, himself, that babies do extremely well with the surgery to fix coarctation. Will's nurse yesterday said that the last baby to have this surgery was only in the PICU 3 days post-op and then was moved to a floor. After that, they were only in the hospital another 2 days! 5 days post-op they went home! Monday has been thrown around as a possible date for his surgery (but it will depend on how well Will is doing), so in theory he could be home as soon as next Saturday!
They have started to let us hold Will, which is so good for both him and us. Yesterday, I got to hold him for the first time since the day he was born. I was so happy! When Julianna was in the NICU we did Kangaroo Care, and it was so good for her. Her stats would be the most stable when she was being held. Will is the same way. His respirations stay steady, his oxygen levels stay high and he sleeps so well whenever we're holding him.
His arterial umbilical line was removed today and they are no longer doing hourly blood draws (they were done through that line). They were going to remove the one in his umbilical vein, but were unable to get a PICC line put in today. They are going to try again tomorrow. He has been taken off the Dobutamine (to help his heart function better) and now he is just on the prostaglandin to keep his PDA open until after the surgery, and one other thing (can't remember it's name) twice a day just to help his heart a little. He has been getting all his milk through his NG tube and is up to a little over and 1.5 ounces every 3 hours. BUT at 5o'clock today we get to try him on his first bottle feed! I am not allowed to nurse yet because they want to know exactly how much milk he is getting.
Overall, we are so happy with how things have been going. So far everything has gone exactly as Dr Awesome explained to us during our first consultation. The nurses here tell us that 99.99999% of the time when Dr Awesome makes a prenatal diagnosis he is correct. I cannot say enough how thankful we are for him! Other doctors may not have given Will the extra time he's needed to get better.
Keep praying for Will and his little heart. We may have unfortunately had 2 little ones with health issues, but both have been our little miracles and I firmly believe it is because of all the prayers they received! Thank you!
Hope you like the video of Will!