A lot has happened since he was born 3 days ago, but I don't have time to sit here & give all the details. A quick recap is that while he was fine when I put him down at 6:30 sunday morning and laid down myself to get some sleep, within less than an hour the pediatrician doing morning rounds noticed that he was dark blue from head to toe.
It was quickly established that he had a heart defect and they ordered a transport team from University of Virgina and he was sent to the NICU with in a few hours.
After several tests & consoltations it has been determined that he has a very rare & complex form of Chronic Heart Disease. His heart is very strong! It is just not wired correctly so that the blood goes into the heart & sent out to the lungs to get reoxygenated. Basically it never gets sent to his lungs and will just recycle through his body. There is a valve that when baby is in utero is open, at that time baby is getting nutrients, blood & oxygen through the umbilical from mom. After he was born, the valve naturally closes up and in a normal heart blood starts getting sent through other valves to reach the lungs. Owain's heart just doesn't have the valves to get the blood to his lungs.
At this point he is being given drugs to keep the valve open that normally closes after birth. He is also on pain meds, a respirator, and several other things to keep him alive until the cardiologists can get a better idea of exactly how his heart works & exactly where every thing goes. He has had several ultrasounds to look at his heart and these have been seen by a wonderful and amazing team of pediatric cardiologists. But when it comes down to it, we are still unclear of exactly which valves go where & what type of surgery will be needed.
I have never been so grateful to live in VA! We are so close to UVA that we can come home at night. The children's hospital at UVA is one of the top in the country & I feel like there is no place better for him to be.
He will need surgery with in the week. At first we were told that he would need open heart surgery this week, followed by another procedure when he is 3-4 months and then again when he is around 3 years. The procedure is complicated, so that is as much as I can get in to it now. We were just told yesterday that there is chance that the first procedure this week could be less invasive & will not need to be full on open heart surgery, but that the following two will be.
He is having issues with his intestines not working properly because his body has chosen to send blood to his major organs and this has caused the intestines to slow down. We can not even think about scheduling surgery until this has cleared up. He has remained stable through the night & now we are just waiting every 4 hours to see the results of the lastest intestinal scan to see if he is getting any better. He is not allowed to eat & is receiving fluids. I have been pumping milk for him as much as possible & he will be getting this milk as soon as he can after surgery.
Last night he got moved from the NICU to the PICU, but that does not mean that he is any less criticial. He is very critical and one of the sickest patients there at the moment.
That is the short version of everything that is going on. We need to get going to see him now.
My three older boys love him very much & are very eager to have him home.
Please keep us in your prayers and thoughts and I will try to post some more updates here when I can. Thank you so much to every one who is helping us & praying for our little Owain!