Thursday, November 17, 2011

World Prematurity Day

A friend recently suggested that I start a blog. She said that I have a lot share so I decided to take her advice. What better day to do so than World Prematurity Day! I am the VERY proud Mommy of two micro preemies, one who is an angel and the other who I fondly refer to as my little miracle man.

Almost 5 years ago, at only 24 weeks gestation, I delivered twins via emergency c-section. Madelynn weighed only 1 pound 5 ounces and was 11.5 inches long. Her brother Mason weighed 1 pound 9 ounces and was 12.5 inches long. They both faced multiple complications due to being born so early.

I spent 5 weeks in the hospital on bed rest prior to their birth and a nurse from the NICU visited me just about a week before they were born. She gave me a brochure which listed all of the possible complications they might face depending on when they were born. Sadly, between the two of them, they had all but one of the complications listed in the brochure. They each underwent several surgeries in their first few weeks of life. It got so bad that we started to joke that they were trying to beat each other to the operating room. One day, as we were preparing for yet another surgery, one of the nurses from the NICU told us we should write a manual for other NICU parents since we had just about seen it all!

Among the complications that they both faced were a grade IV brain bleed which resulted in hydrocephalus (Madelynn's was much worse than Mason's); NEC (necrotizing enterocolitis) which is a condition that results in the death of portions of the bowel; PDA (patent ductus arteriosus) which is a hole between the pulmonary artery and the aorta that normally closes after birth but often does not with preemies; ROP (retinopathy of prematurity) which involves the blood vessels in the eyes and can lead to retinal detachment and ultimately blindness; and last but not least RDS (respiratory distress syndrome) which resulted in them both being on ventilators and oscillators for a prolonged period to time. Needless to say their first few months of life were pretty scary. We spent as much time as possible with them and as a result got to know the nurses and doctors very well.

As I said before, Madelynn's brain bleed was much worse than Mason's. Both of them had catheters placed in their brains so the excess fluid could be drained. The doctors would do so every few days. They also ordered weekly ultrasounds to monitor the fluid and assess brain damage. I vividly remember while viewing one of Madelynn's ultrasounds my husband Shane commenting that it looked like someone had taken a spoon and just stirred her brain matter. Unfortunately, due to the severity of her brain bleed, as well as the condition of her lungs, Madelynn passed away when the twins were a little over 3 months old. She fought very hard and we are extremely grateful for the time we had with her. She was most definitely Daddy's little girl. In fact, about the only time she was content was when Daddy had his finger on her foot. She would curl her toes around it. One of the nurses asked one day if she could please make a mold of his hand!! We take comfort in the fact that she is no longer suffering and we know she is her brother's guardian angel.

Mason spent 140 days in the NICU. We were told several times that baby girls usually fair better than baby boys. He beat the odds though. That's why I call him my little miracle man. He overcame so many obstacles and continues to do so on a daily basis. By all outward appearances, most people wouldn't even be able to tell that he was a micro preemie. He has suffered some lingering effects from being born so early though. He has been developmentally delayed which is understandable but about a year and a half ago Mason was diagnosed with PDD-NOS or Pervasive Developmental Disorder - Not Otherwise Specified, which is a form of Autism. He has had to undergo physical, occupational, and speech therapy practically since coming home from the NICU. He has made great strides though and we are so very proud of all that he has accomplished.

Madelynn and Mason are just two out of millions of babies born prematurely for one reason or another. Prematurity is not prejudiced; it's a real threat for all women, no matter their ethnicity or socioeconomic standing. Hopefully, one day soon, prematurity will be a thing of the past. Until that day though, we need to continue to fight to give each and every baby a happy and healthy 40 weeks. Shane, Mason and I participate annually in the March of Dimes March for Babies Walk in attempt to help prevent other parents from having to experience the heartache of prematurity and/or the loss of a baby as a result of it. We also created a band in honor of Madelynn so family and friends can donate to the March of Dimes if they're unable to participate in a walk in their area.

I wore purple today in support of World Prematurity Day. I also replaced our front porch light bulb with a purple bulb. I know it's not much but if even one baby is prevented from being born too soon by my efforts, that's good enough for me!!

P.S. Here is the link for Madelynn's band if anyone is interested:

http://www.marchofdimes.com/prematurity/b_new.asp?band_id=36060