Running For Research - PWSNewborns with PWS often spend days, weeks, or even months in the NICU and more than 75% of babies require a feeding tube in infancy.
As I mentioned in a previous post, Clementine was taken to the NICU the day following her birth , when it became clear that she was struggling to stay awake for more than a minute or two at a time. She was also having difficulty latching on to the breast and feeding. It was then that genetic testing was ordered.
During the week that Clem was in the NICU, we didn’t know what was wrong. A lot of that time is blurry for me. I was unprepared for the situation I found myself in. I remember sitting in the NICU, staring at Clem lying so small and helpless in the bassinette, and thinking this can’t be happening. She’s going to improve and we will leave this cold and sterile place. It had NEVER occurred to me that something could be wrong with her. How could there be? I had three other strong and healthy children. I was strong and healthy. Things like this aren’t supposed to happen.
While Clem was in the NICU and we were waiting for her to build the strength necessary to feed enough to be discharged, I decided that I would pump breast milk exclusively. This began my year long relationship with my breast pump. When I wasn’t hovering over Clem, I was attached to the pump. Let’s just say that got old very quickly. But I persevered and Clem, being the true fighter that she is, was able to begin feeding enough that it was deemed safe to let her go home. Our total NICU time was one week. That one week felt like 10 years. I’ve never been so glad to leave a place in my entire life!
It was only after receiving Clem’s diagnosis 2 weeks later and reading about PWS that I realized how lucky we were to have spent only 1 week in the NICU. Some PWS babies spend much more time there. I also learned how very fortunate we were to have escaped the feeding tube that is required for so many children like Clem. Even though I spent the vast majority of my time, at least the first 4 months of her life, attached to my pump or coaxing her to drink breast milk from a bottle, we had avoided the feeding tube and all of the potential difficulties associated with using one.
Feeding was very hard for Clementine and required every ounce of her strength. It would take 10 to 15 minutes just to get her to drink one ounce of milk. I would have to constantly rub her cheek or lower lip while she was drinking to get her to stay awake and keep sucking. I also remember tapping the side of the bottle while she was feeding. Because she drank such a small amount at a time, she would need to feed several times every hour. Much of every day was spent sitting in my living room trying to get her to drink while also caring for my then 5.5 year old, 3.5 year old and 2 year old other kids. Let me just say it’s hard to mother small children effectively while being anchored to a chair! But we persevered!
