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Giuliano's Story
"I was preggo with Giuliano when I was 18. I had a perfect pregnancy, one ultra sound cause I did not have any problems..."
During the ultra sound Giulio's legs were closed so we could not tell if he was a boy or girl but I knew in my gut he was a boy...nothing came up in the ultra sound like there was anything wrong which I have always questioned there had to be something that they could have picked up on!
Right on Giulio's due date he was born April 2nd, 1996. No meds, fast birth, he was here at 8:05, 6 pounds 15 ounces. So many docs and nurses rushed in the room it was so crazy. All of a sudden they took him out of the room! I looked at my mom and tried to get out the bed. The nurses got me back in the bed. I keep asking is he ok????? The first hour seems like days...was not like you see it in movies, you have the baby and they set the baby right on your tummy and the baby looks into the moms eyes. I didn't even get to see him or touch him.
Finally about 45 mins after delivery they come in and tell me that he needed oxygen so he is on a breathing tent and that his head size was smaller than normal and liver and spleen was enlarged, he also had jaundice. So I was able to go down and see him...so I did. Everything was so blank....he looked awful, his pigment was so off...he was this helpless and tied up to all these machines. Then they tell me they are going to air lift him over to strong cause they have a great nicu over there so within the first 2 hours of his birth. I watched out the window as my little guy got pushed on to the helicopter to go over to the other hospital. Here I am in the hospital just had a baby but he was not even here with me. That night about 8:00pm I finally talked them into releasing me so I can be with him. I was doing fine so they let me leave.
Giulio went down hill the first week. He went from the tent to 100% oxygen. He needed about 10 blood transfusions cause his white cells were down fighting off the virus...his feet were soooo bruised from all the poking. I was able to hold Giulio a 1 week and 2 days old. I had to have the nurse hand him to me, he was still hooked to everything. I was so scared to even change his diaper he seems so fragile.
At a week and a half, I was pulled into a room and told he has CMV-cytomegalovirus. I had no clue what it was. I asked what does that mean for his future, such a blank for me. They said there was a chance he would have seizures. They told me he would be delayed but did not know how much they also showed me a picture of his brain and the part the was damaged from the CMV. I remember the walk to the elevator that day. I got to the door and started crying and I was so angry. The days following, he got off the oxygen and was put upstairs to the peds unit and at 2 weeks they told me I could bring him home. I was so scared. He was just hooked up to all these machines and now I can take him and care for him by myself. Wow. He had a nurse come in for 2 weeks after just to check him out!
Giulio is a happy little boy, so handsome. His first medical run in was when he was 2, he had his first seizure. That was a task trying to get the right meds to get them controlled. It took about 2 years to get him under control. At 2 also he started going to early intervention on the bus. He loved it. Before this the therapist would come to the house since he was 11 months.
At age 8, Giulio started have UTIs alot. We had to run a lot of tests because of the UTIs. It ended up hurting his left kidney, he only had 10% of that kidney that works. It was alot of doctors appointments trying to figure out what plan to get the UTIs under control. Diffrent meds and it ended up being that I had to empty his bladder at home...cause his bladder is not empty fully...so I would have to cath him at home. I was horrified...but it actually went pretty well. It was better for him that I was doing it. Now 6 years later it is just part of our every day routine...I was happy it was something I could do and a nurse would not have to come into our home.
Giulio is 14 now...geesh, is he a teenager. He is non-nerbal. He had a Dynovox to communicate with. He also can tell you yes with his hand and no with his head. He is so smart. About 6 years ago he got the Dynovox and we really relized how much he understands. He can army crawl and has a wheelchair and soon he will be geting a motorized wheelchair. He is long but slender, only 60 pounds.
He has a younger sister that is 12. He and her are 21 months apart and he also has a younger brother that is 7! He has always been small in size. He eats a pureed diet and now we are starting bite size chunks which he really likes. He has been my teaching tool! So happy to have met so many CMV moms!
- Shared by his mother, Kim