Saturday 4 May 2013 @ 8:30pm
Well, the time has come. Our wonderful baby girl has been born and her name is Raegan Christina Bird. 8-weeks early, a whopping 4 lbs (1.85 kilos) and 17 inches long. She is a cute little thing with some fuzzy brown hair and a lot of movement.
She was breathing on her own right from delivery and she let out a nice good cry. Raegan is already a cute and calm little bub born at 32 weeks – now 1 week out of the womb she has really thrived and although she is a premie she really is progressing quite well.
Initially at our 20-week scan were told many things about Raegan’s condition – which of course made us very weary. After meeting with the Paediatric Cardiology Specialist and having him perform a scan on Raegan’s heart and chest what we know is this: Her stomach and liver had swapped places, and her heart is midlined, the heart is in good shape structurally, currently the flaps between the two mixing chambers of the heart are supposed to close up after birth but they look like they are not long enough to meet up and close on their own. This will leave a hole in the heart and cause an atrial septal defect. It the hole is very small it may not need to be repaired, but repair including surgery is available if need be.
One of the things we do know is that she has an Intestional Malrotation of her lower GI tract. When the stomach and liver develop in the wrong place, it sometimes causes volvulus – when the intestine twists in on itself, potentially cutting off the blood supply, or can also cause an intestinal obstruction. The surgery, laproscopic surgery, can be performed to pin the intestine into the correct place. We’re hoping to know the results of this test soon, and if it is malrotation, when we might be in need of surgery. We go in for a final analysis in July with the surgeons to make a decision to go ahead or
possibly wait until she is older. They can do this surgery up to the age of 3 years depending on the severity. Recovery is just a couple days.
Lastly it seems that Raegan has a missing Spleen called Asplenia. Again with the mixed up organ placement they are unable to locate the spleen. Tests have been run to detect the spleen function but because she is already on antibiotics and her spleen is not actively fighting infection, it does not give off any secretions. The Spleen is responsible for protecting the body against bacterial infections. There is a large regimen of vaccination/immunizations that needs to happen to make sure that she will be protected against infection. The doctor says that many people are born without a Spleen or lose their Spleen in an accident still live full long lives. From birth to age 5 we must be very careful to not expose her to anything that could cause infection such as whooping cough, influenza, meningitis, etc.
The diagnosis (to date) seems to be Left Isomerism, also called polysplenia, is a laterality disturbance associated with with paired leftsidedness viscera and multiple small spleens. Left isomerism, heart congenital abnormalities and gastrointestinal malformation are strongly associated. Generally with left isomerism there is a spleen or multiple spleens, so the doctor still won’t confirm that there is no spleen until they can do further tests and possibly look for the spleen during the laproscopic intestinal surgery. Until then we proceed as if she has no spleen.
3-weeks old (gassy smile)
Wednesday, 22 June 2013
Today we are 7-weeks old, Raegan has been home from the hospital for about 2-weeks now and she is thriving, gaining lots of weight, eating and sleeping well. We are all getting used to each other and are enjoying the experience.
In Australia there is great home medical network for babies. We have a Maternal Health Child Nurse that comes to the house to visit weekly through the first 10-weeks after she is home. She is weighed and because she need special immunizations they come to the house to administer these for her. It is risky for me to take her to the doctors office and sit in the waiting room with sick people – so all in all it is best for her health. She really is a blessing and we are so happy that she is doing well. At least… so far so good.
Our wonderful little girl is happy and content, and will be soon meeting her family in America when we take a trip for a family wedding and visit later this year.
By far, this is the best thing I’ve ever done in my life. I’m so happy to share this with so many wonderful people who care about and love Raegan and will be there throughout her life. XOXO