On Jan. 24, 2009 our third sweet child arrived, Jadrian Gunnar. We had a home birth, everything seemed great until the 4th day when we started noticing that baby dear didnt want to eat, was getting blue and having breathing difficulty. We took him to the ER which ended up being a nightmare. Dr was very unattentive and they were not set up to handle an infant but I wont go into all that. Baby's oxegyn and glucose levels were both down to 8!! (Normal being 100). God miracoulsly kept our son alive and we were transfered to a large hospital where he was diagnosed with Hypoplastic Left Heart Syndrome. Its a rare, very serious heart defect. One of the hearts four chambers, the one that pumps blood to the body, did not develop. Leaving the one that usually pumps to the lungs to do all the work. In unborn babies the lung artery has a bypass that allows the blood to go to the body, in the first few days after birth this closes which is why baby started having problems.
This is one of the worst heart diseases. Twenty years ago all babies born with this were left to die because they had not discovered a procedure to sucsessfully make a single ventricle heart do everything. Now they do a 3 step open heart surgery. The first, called the Norwood is done soon after birth, the 2nd called the Glenn at 6-12 month and the last, called the Fontan around 3-5 years old. Because the risks of surgery are very high and even with surgery its still not a complete fix, they are required to give parents the option of taking baby home to love until it dies or trying surgery. What a heart rending desision to make!
We did go ahead with surgery which he had at 2 wks old. We spent 61 days in hospitals and are now home with baby dear for 3 weeks. Our biggest issue now is getting him to gain weight.
All this said.....I'm wondering if theres any of you out there that would happen to be familiar with this heart defect or possibly have a child with it. I would dearly love to hear from others...and any tips on building up your infants immune system that has been months on antibiodics and all kinds of meds. I am pumping and giving him my breastmilk by bottle as he dosent have the strength to take the volume he needs by breast.
