1/20/13 Aydan update! Very loooooong!

Gosh I can't believe my baby boy is gonna be 8 weeks old tomorrow! Time just flies by  so fast! Soooo.... I haven't been on here for a while so I'm just gonna start when Aydan came home. Aydan was in the NICU for 23 days total. He came home December 18th, just a week before Christmas ;). He was in the hospital so long cause he was born with pulmonary hypertension, a large PDA on his heart, and meningitis. He was put on blood pressure medicine to help close the PDA some on his heart and to decrease pressure in his lungs cause he was having trouble breathing. He was put on a ventilator a few days after he was born and then was gradually weaned to a cpap machine, then to regular flow oxygen, and then nothing! He was on antibiotics to treat the meningitis. They knew he had an infection cause of his blood work, but could not figure out where. They had to do a lumbar tap and take a sample of his spinal fluid, where it showed high levels of white blood cells, indicating meningitis. He also required a platelet transfusion while in the hospital cause of a blood clotting problem. Almost a week after he was born, the results came back from his blood work, showing he had an extra 21 chromosome, resulting in a diagnosis of Down Syndrome. We had no idea he had this, cause I did not do any  prenatal testing cause my chances of having a baby with Down Syndrome was like 1/1000. I did grieve for days until I finally came around to accepting my son how he is :).
Aydan is home and doing great! He didn't have to come home on oxygen or a feeding tube, as many children with DS do. He uses a special bottle called a haberman that lets me adjust the flow of milk that comes out from no flow, slow flow, or fast flow. This helps so he doesn't get choked or aspirate his milk. But, he does have to take zantac due to relux.
Another good thing is that more than 50% of children born with DS have a heart defect. Aydan doesn't. He just has the PDA, which I will explain what it is, but it's not considered a "defect", cause it can even happen to healthy babies. So what causes a PDA? There is a valve in the heart that stays open while the baby is inside the uterus to allow blood flow to the lungs so they can grow. After birth, the valve usually closes within 3 days, to stop the blood flow, since the lungs are now in use. A PDA is when it doesn't close. This causes high blood pressure in the lungs, making breathing difficult.
Aydan had a follow up appt with a cardiologist on December 28th. The PDA is still  there, but small and is not causing any problems. But, the cardiologist recommended me to set up an appt 4 months out to recheck it to see if it has closed completely. If it does not close by then, they will have to go in with a catheter and close it. But,  he will not require any open heart surgery.
He also had an appointment at West Tn School of the Deaf, since his left ear failed the newborn screening test. He had a series of test done to check each part of his ear (outer ear, middle ear, inner ear).. he passed all but the inner ear on the left side. The audiologist was even confused by this, cause overall Aydan hears, and shows no signs of hearing loss (which alot of children with DS have some degree of hearing loss). I take him back next month to recheck. She says there are tiny  hairs in the inner ear that vibrate and that's what causes sounds to pick up. She thinks maybe he is missing a few hairs,  or they haven't popped up yet.
He also had an appointment at the pediatrician's office where he was evaluated by a physical therapist when he was 6 weeks. She did some exercises with him and gave him a score for each  area that she checked and came up with  an overall score, and Aydan scored "average", so far, Aydan is developing physically as a normal child. :D He has low muscle tone, which is a symptom of DS and it causes the children to have a developmental delay and especially while meeting milestones such as sitting up, crawling, walking.... etc. Aydan's has mild low muscle tone.
The last time I took him to the pediatrician was 9 days ago. He weighed 9lb 14oz and was 21 inches long lol. He is gaining weight like he's suppose to, but is short, whereas most children with DS are. His weight fell within the 30 percentile of other children the same age, his height in  the 5 percentile (LOL), and his BMI was in the 90 percentile. So he is at a healthy weight,  considering he is short. Explains why he is almost 8 weeks and is just now growing out of his newborn clothes!
As of now, Aydan has a cold and I've been treating him with azythromycin. He has been a little grumpy, but overall, he is a very good baby! Even when I brought him home, he would only  wake up about 2 times during the night to eat. And he doesn't cry when he is hungry, he will just stick his tongue out and suck on it and it sounds like a plunger lol and then I know it's time for him to eat. He is eating 4 oz every 3-4 hours during the day and eats 1 time at night and then sleeps 6-7 hours straight! He doesn't "coo", he "ahhhhs" and he smiles alot, but doesn't smile in response to anything yet. He picks his head up and holds it very well. He even rolled over one time, but hasn't happened again  since :(. He will NOT sleep in his crib! He has a little spot between  me and daddy in the bed. I know, I know... it's bad and the doctor gets on to you for that.... but he just will not sleep in his crib... he will lay there and scratch the sheets with his nails and kick around till someone picks him up and puts him in the bed. And then when he's in the bed, he has to be laying on daddy's chest or on my arm in order to fall asleep. He will lay there and open/close his eyes to make sure I'm still there and then eventually fall asleep.
Well, I guess this is definitely enough for now.  I will  try to make an update soon! Won't try  to  wait as long next time!