This was Maryam's home for the first few months of her life. That blue chair is where Brett or I would sit for hours upon hours. On the left of the isolette you can see the ventilator. I'll never forget the super fast tick, tick, tick, tick, tick sound that machine made. On the right you can see IV pumps. On the far right is the monitor where we'd stare at the numbers hoping her oxygen saturation numbers would stay up. Brett and I were obsessed by numbers. How high was the pressure on the vent. How many liters of O2 a minute was she getting. How well or not well was she "sating". But I'm getting ahead of myself.
I recently found some journal entries from when Maryam was born. I tried reading through them, but they made me cry. Silly, I know. I even remembered the conscious decision I made to stop journaling her NICU stay. Everyday I'd come home and write a small excerpt of what Maryam had gone through that day. Everyday I'd read over everything I had written from the beginning. So, everyday I'd come home and cry. I honestly think it made me feel worse. Had I been able to not read the whole thing in its entirety every night, I might have been OK. Or if I could have kept up the journal until she was stable and progressing I would have been great! But I couldn't and didn't. Sadly my journal ends on January 8th, roughly one month after Maryam was born. I guess I didn't know she was going to be in the NICU for another 4 months or I think I would have TRIED to continue.
Maryam was born at 5:26pm on Saturday, December 9, 2006. She weighed 750 grams, or 1 pound 10 ounces. She was 13 inches long. Her skin looked translucent. Her ears were flopped forward and stuck to her head. She couldn't breathe well enough to sustain her life. She had a PICC Line with numerous IV's hooked to it. She was on full life support. The only thing keeping her alive was machines and an underlying, subconscious will to live.
The first people to meet our little miracle baby were her daddy and her auntie Sarah. Next up were both sets of grandparents. I can't fully remember, but I'm pretty sure uncle Justin and auntie Lynn went in at one point and I think uncle Scott did too. Someone told me she was on Insulin, Lipids and Dopamine.
December 10, 2006 Maryam had her first of many blood transfusions. She was put under bili lights to help cure jaundice. That night at 9:00pm I was wheeled in on a gurney to meet my little baby. I don't have much of a memory of this at all. I remember two things, the tick, tick, tick, tick, tick of the high frequency vent and thinking, she's even smaller than I imagined. Apparently I was only able to stay for a few minutes because I was just too sick.
That night I had liver failure. That was the single most painful experience of my entire life. There are no words to describe how painful organ failure is. I honestly wanted to die to stop the pain. I was put on 1 to 1 care for the next 2 or 3 days. I was so sick.
December 11, 2006 Maryam lost weight. She was down 70 more grams. She was still under the bili lights. Nothing much had changed. We were just thankful that she was alive.
Life pretty much went on this way for days. I finally got to see her and have a real visit with her on December 13. Unfortunately she had a set back, one of her lungs collapsed and I had to wait until that evening to see her. That was a rough day.
December 14, 2006 I was discharged from the hospital. Leaving the hospital without my baby was horrible. I cried the whole way home. I couldn't think about the pain I was in, or the fact that I had to rest, all I could think about was her. I was worried sick that she'd die and I wouldn't be there to say good bye to the baby I was barely able to say hello to.
Today is Prematurity Awareness Day. Please spread the word about the toll prematurity takes on families. Before I had Maryam I thought prematurity simply meant that a baby was born before 40 weeks and needed to gain some weight. I had no idea the complications that can arise from it. I had no idea that years of physical therapy, occupational therapy, oxygen therapy, feeding therapy were a possibility. I had no idea babies could be born so early. I really had no idea that they could be kept alive by machines. Maryam is a miracle made possible through science and medical breakthroughs. Please visit www.marchofdimes.com to read up on prematurity.
I'll write more about Maryam's NICU stay in the next few days. I'm having trouble.
The agony you experienced is truly unknown to others who haven't been through it. "I wouldn't be there to say good bye to the baby I was barely able to say hello to" is jus so painful to read.
ReplyDeleteOn behalf of the March of Dimes, thank you so very much for sharing your story and helping to spread the word about the seriousness of premature birth.