May | 2013 | Lessons from my daughter

June 18 1998 20:24

Our daughter is finally here! A tiny baby 5 lbs 6 onces …. 18.5 inches long.

She is beautiful! The cutest baby in the nursery! I know every parents think that about their baby but mine was awfully cute!

She had the most perfectly round face with big almond shape eyes. She had a tiny cry while all those other big babies were so loud!!! She had a tiny spot on the back of her head that had no hair, she had a tiny purple spot on her forehead and a little skin tag by her left ear….. Other than that 10 fingers, 10 toes and a cute tiny nose….

Emily was born in the time of breastfeeding madness….. where you “had to” breastfeed. Emily didn’t want to!!! The drinking containers (my breasts) were bigger than she was….. She didn’t latch, she didn’t suck and couldn’t swallow…… My breasts became public properties to the nurses at the hospital….. They all had a different approach that was supposed to make Emily drink….. Well that didn’t work and quite frankly at some point regardless of their good intentions, I couldn’t stand nurses grabbing my breasts!!! MY Boobies!!! Not public property!

The doctors ordered tests and it was decided that her not drinking properly and turning blue while we were feeding her had to do with not knowing how to swallow! We were cleared to go home with our daughter, all we needed to do was take our time feeding her…

Did we ever!!!

You know those babies who drink 8 onces and go for a nap!?!?!? I’ve heard they exist! I believe some of my nephews were like that but in our house there was none of that. No drinking, no napping!

I pumped milk for as long as I could, I started with a manual pump, got on a path to tendinitis so I switch to electronic…. talk about feeling like a milk cow…. not sexy, not stimulating…. but I did it for my daughter! Emily drank maybe 2 onces at the time and to get those 2 onces in her took a couple of hours. Put a tiny amount in her mouth, sit her up straight, put a hand on her tummy, once you felt the sip go down (yes, you can feel that….), sit her up straight and don’t move her……. wait maybe 5 minutes and repeat…. The waiting was to help her keep the milk in. Regardless of how slowly we got the milk in her, she vomited at least half of it……

One day, I will tell you about the time her godmother decided to play with her just after she was done drinking….

Feeding Emily was a 24/7 adventure. We just kept giving her small amount of milk hoping it would stay in, hoping she would keep enough to stay alive!

My house was a mess, I had on-going piles of laundry (all the vomiting) and I was exhausted…. Emily didn’t sleep. She drank, vomited and cried…… She slept maybe 4 hours on 24 hours and they were not in a row!!!

To this day, I am not sure where the energy and tenacity to continue came from….

One thing for sure, by the time she was diagnosed and that the doctors talked about feeding her by tube….. I knew we could keep her alive without it! I knew that it was hard, I knew that the tube might be easier but at the end of the day, I wanted her to learn to eat, I wanted her to learn to use her tongue and cheeks….. I wanted her to developed those muscles so maybe one day she would talk…..! Maybe one day she would say “maman”

When faced with a never ending task, how long will you keep going?

Breast is best except when it’s not. (ingloriousmotherhood.wordpress.com)

October 1999 – Emily is just over 15 months old and we finally have a diagnosis…. She has something called the Cri du Chat syndrome. Back in 1999, there isn’t much of anything out there for us to find information… It is hard to believe that all this was before facebook!

I remember sitting in the genetic counsellor’s office and listening to what our life was going to be….. All the information coming straight from what seem to be a giant book of everything a doctor needs to know….. just between us, I really dislike that book!

….. your daughter will never walk, talk, recognize you, understand you or show emotions. She will be fed by tube as she will not be able to eat enough to grow properly. Your child will be in her own world, in a wheelchair, fed by tube…. The “good luck” was not said but we felt it!

I remember telling the genetic counselor that Emily could recognize us, that she recognized voices and that when her dad or I entered a room, she was looking for us. Her head, the only part of her body she seemed to control, would be turning around looking for us. She didn’t do that for strangers….

The answer from the genetic counselor was harsh…. You want to believe she is recognizing you but in reality she isn’t… your daughter can’t do that.

It wasn’t my imagination! She knew us! She also knew her babysitter and she loved us, in her own way!

Over the days, weeks, months and years following her diagnosis, I held on tight to the fact that Emily could recognized us! If she could do that, what else would she be able to do?

I didn’t care what was in that book, I was going to give my child the best life she could ever have and I was going to make sure that she kept recognizing us and that slowly other milestones would be cross off the list…

When you are faced with bad news, what keeps you going?