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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, March 17, 2009

Five Years Ago

Happy St. Patrick's Day!!!

It really doesn't seem like 5 years. But five years ago, to the day, our 4 1/2 month stay in the hospital following Timmy's birth came to an end. Timmy was discharged from the NICU Transition Unit of New Hanover Regional Medical Center at approximately 8:30PM. The hospitals protocol is that every patient whom is discharged, is to be taken downstairs in a wheelchair. We refused to let this happen. I walked into that hospital on October 30th 2003. I walked into that hospital several times a day following my discharge to visit Timmy. So after 4 1/2 months, we were going to walk out of the hospital carrying Timmy in our arms, with our heads held high.

Timmy's surviving the emergency C-Section was a miracle. Him surviving the first critical 72 hours of life, was a miracle. Him overcoming many complex health issues i.e. diagnosed kidney failure, failure to thrive, and being able to breathe without the aide of a ventilator. At about 3 1/2 months, on January 21st. 2004, Timmy was airlifted to Duke University Medical Center. It was at this time that Timmy was given a tracheostomy. We had been told that Timmy would never be able to drink from a bottle, so him feeding from a bottle, and most importantly him surviving to the point of being healthy enough to be able to be discharged from the hospital, was truly a miracle.

The day that Timmy was to be discharged was a very long, trying, stressful, and scary day. We were told early morning that we would be going home very soon. Well as the minutes of the day slowly slipped by it was beginning to seem that our discharge would be postponed yet again for some unkonwn reason. Each time Timmy's Neonatologist passed us in the hallway or would come into Timmy's room he would drill us with different senarios of situation that could possibly happen once we got Timmy home and wanted to know what we would do in each situation. We had been helping the NICU staff take care of Timmy from day one, changing diapers, taking temperatures, bathing him, suction his trach and feeding him. We even had experience with having to change Timmy's trach. In the hospital, a respiratory therapist is suppose to be at the bedside when a baby/child's trach is being changed. Well after Timmy got his trach, when it came time for his trach to be changed, we or the nurses couldn't get a respiratory therapist to come to assist. So dad and I along with a nurse as our backup, changed Timmy's trach.

Most new parents worry about if the baby is too hot/cold, if the car seat is installed properly, how much/how often to feed or if they have all of the necessary needed supplies at home. But we were more worried about if we couold remember how to fill Timmy's portable liquid oxygen tank, how to use/reset his apnea and pulse oximeter monitors, how to figure insulin dosages and how to cope in general once we were on our own, without a Registered nurse only a yell away!

Our first night at home we didn't have any nursing help with Timmy. We were on our own! Neither dad or I slept at all that night. I was up checking on Timmy every few minutes, just to make sure that he was still breathing. I was scared to put my trust solely into the monitor/s alarms to let me know that something was wrong. Besides, I had been taught while Timmy was in the NICU not to solely rely on the alarms. Instead look at Timmy and assess him to see if the monitor alarms are correct.

It took many months before we would even let Timmy's Home Health Nurses do most if not all of his care. I had 4 1/2 months of parenting to make up for and it took me awhile before I felt comfortable placing my son's well being in the hands of a strangeer.

It is hard to believe that when Timmy came home he weighed 7lbs. 2oz. Now he weighs approximately 32lbs. and is approximately 37ins tall!

Even though Timmy has developmental delays, over the past 5 years, he has reached many inchstones, that we were told from the beginning that Timmy would never be able to accomplish. I'm so PROUD of Timmy!

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