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The pregnancy ran pretty well, considering my last son I was hospitalized the month before and he was c-section a month early and still 11lbs. Rylee however, I was told was going to be an average size baby. Until the last month of pregnancy my tummy started growing dramatically. I was sent for ANOTHER ultrasound where the technician found abnormalities with his brain and kidneys. They referred me to a bigger city hospital for a 3D ultrasound. I was denied. They stated that I was scheduled to have a c-section the following week and I looked fine.
I was scheduled for c-section on April 9th; however, my water broke on April 7th. Things ran as normal.. went to hospital, was admitted. Gyno showed up and c-section that evening. When Rylee came out of me, everything was fine. My husband went with the nurses, cutt the cord, came back and showed me.. and away they went as I remained in the ER being put back together. An hour later, I was being brought back upstairs to see my little guy.. who was born at term and 8.5lbs.
When I got to my room, my husband went to hand me Rylee but the nurses took him away, said he sounded mucasy... whatever I thought, it was the same with my previous son, they said that when they aren't delivered vaginally, then the mucas doesn't get pushed out of them... and then the waiting went on an the Children's Hospital of Eastern Ontario was called to come and get him... within 10 hours of his birth, he was helicoptered 2 hours away... and I have yet to hold my little bundle of joy.
I was discharged within 12hours of delivery. They really didn't have a choice. When we got there, I was heartbroken. There was my little man.. hooked up to IV's, intabated, head shaved off already, heart monitors, breathing monitors I wasn't even able to hold him and no one could tell me what was going on with my little man.
They did testing and testing.. ENT, RT, Nuerology, genetics, growth .... finally a month later they presumed it was CHARGE syndrome... Loaded info... their main concern was getting him to breath... and we had many failed exabations... he had a blocked nair, upper airway issues, reflux and bronchialmalacia.... at 2.5months they put a trach in, to realize that he would still need CPAP -- to keep the bronch open... we are still on the cpap, slowly trying a swedish-nose and bringing down the PEEP. In hopes he may grow out of the bronchial, as the other upper issues can be fixed surgically.
His heart, they are waiting until he is four months, if they can.
He had a Gtube put in at 2 months, he is not gaining weight and toleranting bolis feeds every 4 hours
His kidneys still need to be tested, but it is not something they can fix, it's more to prevent urinary tract infections futuristically.
His hearing has slowly been being tested, but at such a young age it's hard for them to figure anything out... however, he is disturbed from noises throughout the room, so we are hopefull that his hearing is not too affected.
Sight, he follows objects and faces, to what degree it might be affected is unknown.
He did have an MRI and it is assumed he will have some mental delay in development, but it is unknown to how much or how little. Unable to presume until he is ready to hit milestones, which will already be delayed with now being in a hospital for almost three months
It's been an incredibly hard road. The genetics test was sent away and he was diagnosed with CHARGE in the beginning of June. It's hard when even the genetics dept gave us hope, as he does not have some of the MAJOR characteristics of the syndrome, but it is in his chromosome, so we are going to stick with that.
That is our story so far. We are playing the waiting game to see if he can grow out of the bronchialmalaica, otherwise the doctors want us to talk and discuss what to do.. .as what is better for Rylee... living with a ventalator all his life, or .. worse case scenario.. fingers crossed.

• Gender: Male
• Demographic Region: North America
• Siblings: Three
• Medical Conditions: Laryngomalacia, Reflux, G-Tube, nissen fundoplication, CHARGE Syndrome, bronchomalacia, Ear abnormalities, Atresia of the nasal choanae, Congential Heart disease

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2 years 32 weeks

Location

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Canada

State/Province

Ontario