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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....

Wednesday, November 3, 2010

Where Did My Baby Go?

For a child who was only give less than a 1% chance for survival, he has come a loong way!

On Thrusday Oct. 30th 2003, I went to my bi-monthly ultrasound appointment. I was 30 weeks pregnant. By this time in my pregnancy, my OB/GYN was letting us make the call as to my care. At this appointment my ultrasound showed that Timmy hadn't grown any in almost 3 weeks. My amniotic fluid level was non existant and had been at this point for over 10 weeks. The blood flow from me to Timmy and vice-versa was dramatically decreasing and had reached a dangerous point. So after speaking with my Perinatologist, we all agreed that a C-section delivery as soon as possible was best for Timmy, even though the outcome looked very grim.

I was admitted to the hospital on Oct. 31st. and steriod injections were started in hopes of inproving Timmy's lung development. Timmy's heartrate was monitored 2x a day, once per shift. This was the longest and most stressful weekend of my life.

Timmy was delivered via emergency C-section on Monday, Nov. 3rd. at 10:40am. He weighed 1lb. 6oz. The NICU nurses were unable to get a length, due to Timmy having severe contractures. The contractures were a result of my not having any amniotic fluid for Timmy to free float in for 10+ weeks.

I really can't recall much about Timmy's first month or so in the NICU. My first visit to see Timmy was 36 hours following his birth. This visit was very traumatic for me. It wasn't until this point that I actually realized just how fragile and unstable Timmy's medical condition was. Timmy was hooked up to an osculator. This is a machine like a ventilator which breathes for the patient, but the osculator gives small puffs of air instead of the normal longer breaths. He had 10 infusion pumps hooked up to his little body, which were giving him electorlytes, blood and medications.

My 1st and only memory was a day or so following Timmy's birth. i went to the NICU to visit with Timmy. Pam, his nurse at the time requested that I help her change Timmy's diaper. "What??? But he is so little!" Pam calmly explained that if I ever wanted to take Timmy home I had to learn how to care for him. "But right now?" Perspiration fouring from places on my body I never knew that I had sweat glands, afraid, emotionally torn, the uncertainties for Timmy's future, I didn't know whether to stay or flee and hide until this nightmare in which I had been placed ended. Yes, no better time than now. So I tenderly and ever so carefully lifted Timmy's tiny and frail body. After this traumatic experience, I can't remember anything until just before Christmas, when we were allowed to officially hold Timmy outside his incubator for a short period of time. By this point, Timmy was pretty stable. And it had been discovered that both of his nasal passages were blocked and that he was going to require a tracheostomy to aid him with his breathing off of the ventilator. Finding a NICU and an ENT in the same hospital to place a trach was our next major part of this long and continuing journey. (More on this at a later date.)

So where has my baby gone???

I would almost swear that Timmy's Kindergarten teacher, his VI teacher and Teacher's assistant replaced Timmy with an identical look alike, when we all attended the Deaf-Blind conference earlier this year. Just over the past 3 months Timmy has gained 5+ pounds and has grown at least 4-5in. taller in the past year. His face has lost that "baby boy" appearance. And cognitively, sociially and physically, he has made awesome improvements.

So where did my small, fragile, medically unstable baby boy go? He has grown into a 40lb.+, 39in. tall, social butterfly, who captures the hearts of everyone he meets. He has taught us, medical professionals and everyone else who has come to pass many things. The most important thing being, The "dis" abled can become "enabled" if only given the proper opportunities to overcome their social, mental and physical challenges. And not every person can be judged and compared to a textbook. Each of us are unique individuals....

4 months old

1st. Birthday

Easter 2005

Late Summer 2005

Easter 2006

Christmas 2006

Christmas 2007

Easter 2008

Fall Pre-K 2008

Kindergarten Aug. 2009

Pre-Halloween 2009

Kindergarten Spring 2010

1st. Grade Sept. 2010

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