After being followed closely by McMaster Children’s Hospital for most of the pregnancy, because of severe IUGR (Intrauterine Growth Restriction), it was decided to induce labour to allow her better growth in the NICU at 35 weeks. Little Anna Elizabeth was born at 2lb 11oz - about half the size that a baby would normally be by that point! She was whisked off to the NICU after only about a minute.
The next few weeks were a whirlwind of various diagnoses and ups and downs with breathing support. When she was 8 weeks old we were given her genetic diagnosis of Cri du Chat Syndrome (5p-), which is a deletion of a portion of chromosome 5. A couple of weeks later, she had a total collapse and they were almost unable to intubate her. It was at this point that it was decided a tracheostomy would be needed to sustain her airway.
Anna spent a total of 162 days in the NICU before getting to come home to her big brother and sister. She has a laundry list of diagnoses and has been in the OR more times than I can count, but you would never know that when you meet her. Anna is the happiest little girl! She loves tight hugs and clapping. She loves to swing and cuddle with her 3 siblings. Anna now has a little sister too and has another sibling due this month. She loves music and a good laugh. She loves toys that spin or make as much noise as possible!
These days Anna enjoys going to Kindergarten 2 days a week (with the support of a nurse) and loves to spend time with her classmates. She is working on capping her tracheostomy (with the hopes of maybe getting rid of it in the next year or so). This involves blocking the trach, so she has to breathe through her nose and mouth. First, you work on daytime hours and slowly increase those - and then slowly work on the nighttime hours as well. She continues to work on communication using a couple of different methods. We use a few gestures and signs as well as a step-by-step button where we can record anything we’d like her to “say”. She also works with her IPAD using the snap scene app to work on making picture choices to tell us what she would like. She also continues to work on her physical development - working on transitional movements like sitting to standing and working on a step pattern in her walker.
Anna has been a blessing in our lives and those around her. A reminder to slow down and enjoy each moment. To be grateful for good health and the support of family. Anna has not used her wish from Guelph Wish Fund for Children yet, but just knowing it is there if something arises with her needs has been a comfort.
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