The Blue Pillow

Declan’s bestie, and fellow achon buddy, had surgery today. She had tubes inserted into her ears, as well as her adenoids removed. It’s common for young kids with achondroplasia to have tubes put into their ears to help with the drainage of fluid through the middle ear. Chronic ear infections, or even just the presence of fluid in the middle ear (whether it’s infected or not), can lead to issues such as hearing loss, and behaviour and speech problems. Adenoid removal is also common. Adenoids can be enlarged in achon children and can contribute to frequent ear infections, and also cause some respiratory problems (snoring a lot, difficulty breathing through the nose, and sleep apnea).

Following my usual nightly routine of getting the kids into bed, and tidying up the kitchen…I sat down tonight at my computer and was getting my daily Facebook fix. And there she was…a photo of Declan’s buddy, post-op. (She did great, by the way!). Her adorable ‘cheese’ face struck me first…and then in the following photo, something else stood out.

The blue hospital pillow.

Who knew that a simple pillow could stir up memories and feelings. Not counting the stay in the hospital after Declan was born…we’ve been back three times. The first was for a sleep study when he was about 3 weeks old (which I’ve come to realize wasn’t a ‘true’ sleep study, just an oxygen saturation test). The second was when he was 6 weeks old. And the third was for his brain MRI when he was 6 months old.

For the sleep study, we stayed in the PICU (pediatric intensive care unit) for about 24 hours while they monitored his breathing overnight. They have ‘parent rooms’, so I got my own room down the hall to sleep while he was hooked up to all the monitors in his PICU room (and a lovely nurse would come to fetch me whenever Declan woke up, so I could breastfeed him and/or give him a bottle). The PICU…a scary place…shared with other children who seemed much worse than my little guy who was ‘just’ there to be monitored. At the time, newly thrown into this ‘my baby has dwarfism’ thing, it seemed like one of the first things to check off on the ‘how to care for a baby with achondroplasia’ list. No biggie. Sleep study…done.

A few weeks later when Declan was 6 weeks old…the blue pillows found us again. However, this time it wasn’t a routine stay to check off on that achon baby list. It was just after 11pm on a Saturday night. We were staying at my parent’s house. Declan was sleeping on my bed. I turned the hallway light on to check on my new little baby, just before washing up and crawling into bed with him. He was perfectly still, seemingly sound asleep. But something didn’t seem right. A feeling in my mommy tummy told me to go in; to look closer. I went into the room and turned the lamp on. I looked at my little guy who seemed just too still, too relaxed, too colourless, too lifeless. I remember yelling ‘Oh my god’…and grabbed him into my arms. For a moment, maybe only five seconds…which seemed like eternity at the time, I truly believed he was gone. I thought my baby had died. Sobbing and freaking out, my mom came running and grabbed him from me. He came to immediately, woke up and was looking at grandma (probably wondering what the hell his mom was freaking out about).

I don’t know what happened. One of the first questions I remember being asked at the hospital was if this was my first child. Nope…number 2. I guess they were trying to determine if I was just an overly freaked out first-time mom. But I think I’m actually a pretty relaxed mom, and everything came pretty easily and naturally after Makenna arrived. That wasn’t it. We stayed overnight in our small local hospital and Declan’s pediatrician visited us the next morning. She called it an ALTE (an apparent life threatening event), but couldn’t explain what happened. Taking it rather seriously, she transferred us to the city for another night of monitoring in the PICU. I’ll never forget that ride in the ambulance, with my tiny baby strapped to an adult-sized stretcher, and then following the paramedics as they wheeled him through the big hospital back to the PICU.

The nurses remembered their adorable little patient, having just been there a couple weeks prior. After 2 nights of monitoring his O2 levels, an EKG, a CT scan of his brain and cervical spine, discussions with the respirologist…everything seemed to be okay. I thought I would never be able to sleep again…but the 2 nights in the hospital and the tests coming back okay calmed my fears quite a bit. However the 5% increased infant mortality rate of babies with achondroplasia was always in the back of my mind. I really thought he was gone for that moment. And that moment made me realize how much I need this little guy, how much he was meant to be my child, and how much I was meant to be his mother.


January 2012. Me, my boy, some wires, my Kobo…and that blue pillow.

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About Tammy

I am a single mother to 2 wonderful children, ages 1 and 5. My youngest was surprisingly born with a rare genetic condition, achondroplasia, which is a type of dwarfism. This blog is a glimpse into my crazy life as I wade through figuring out dwarfism and divorce while enjoying every second of my deficient domestic bliss.
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One Response to The Blue Pillow

  1. Carol Lynka says:

    I feel for you. Molly spent her first two weeks of life in the NICU. It’s heaven and hell in one place. Last week, I took her for a check-up at the respirology clinic at Children’s and was overwhelmed by the familiar smells, sights and sounds of that life-saving-but-very-scary place. As we made our way through the halls, I looked at the line of yellow duckies along the floor that lead to the NICU. I remembered following them night and day from my room in the maternity ward and later when I came from my mom’s place to ‘visit’ my baby in the NICU. What made me stop in my tracks is that I had completely forgotten about the ducks and yet, just the week before, I had pasted little yellow ducks along the path to our townhouse for Molly’s first birthday party. It was an entirely unconscious (sub-conscious?) use of a sweet little emblem of the path we’ve taken in the past year, from life support to Molly herself learning to walk. Blue pillows, yellow ducks…so many triggers of our fears, worries, gratitude and joy for these amazing little people. xo

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