Recently, while going through an introductory meeting with the twins potential school for next year, it solidified for me, just how much we have been through as a family in the past 4 years.
Sometimes when you’re in the trenches, you are just too busy surviving to really take on board and fully process everything that you’re dealing with.
As I sat there, calmly explaining the medical conditions, developmental issues and emotional and behavioural challenges that we deal with, the Assistant Principal and Special Education Manager used great reflective listening skills, and I had the opportunity to see through fresh eyes exactly what the last 4 years have held for us. It was draining and cathartic, and I was profoundly grateful that these two ladies not only got it, but were willing and happy to support my children in their transition to prep next year in a nurturing manner.
From the time my waters broke at 29 weeks, through to my recent paradigm shift in the way that I approach the priorities to work on with the twins (and my daughter in particular), I have whole-heartedly thrown myself into becoming an expert on any medical, developmental and socio-emotional challenge that has arisen.
Throughout the past 4 years, just some of the things we have experienced include :
- Giving CPR and resuscitating our 5 week old son
- Learning all about the different codes that are called in the hospital and which ones required extended NICU stays. Our son coded 4 times and required intervention to get him breathing again and get his heart rate back up
- Placing NG feeding tubes (definitely not one of my favourite experiences!)
- Dealing with G-tube feedings and all that entails, like when your son’s twin sister kicks him and dislodges the balloon
- Learning to read and react to a pulse-ox machine; you have never seen anyone jump out of bed as quickly as when that alarm goes off and you’re wondering if he’s going to require CPR again
- Understanding the risks of anesthesias when you are told that they lost your son’s airway. Up until his last surgical procedure, this happened each and every time he went under
- Identifying the signs of silent aspiration, in the hope that our son wouldn’t stop breathing again, and require resuscitation
- Hearing that your child has over a 65% delay in her development. Through a load of Early Intervention we have come a long way on that front
- Learning all about anaphylaxis and allergies after our son’s first reaction at 11 months. We have had to give Epi-pen on 8 different occasions.
- Becoming hyper-vigilant to the early signs of respiratory distress and all the countless ER visits that go with that
- Managing asthma and chronic bronchitis, and making sure we know how to safely operate an oxygen tank
- Understanding hypotonia and the impact that has on day to day life
- Learning all about Sensory Processing Disorder and helping our daughter process the world around her
- Not being able to wake our daughter, or have a response from her after her first seizure
- Receiving the news that there was a mass on our daughter’s brain. And waiting all night to find out if it was benign.
- Learning about ataxia and hemiparesis as the cyst that took up so much of her cranial cavity exuded pressure on her skull to the point of thinning it, and reduced her motor capacity
- Having a team of 4 different surgeons operate on our son so that we could reduce the risk of multiple GAs
- And then less than 2 weeks later have our daughter undergo a craniotomy
- Learning all about, and experiencing multiple different seizure types and when to give rescue meds like Midazolam
- Supporting our daughter through a developmental regression of her speech, fine motor and gross motor skills, and wondering what the long term implications would be
- Hearing the news that our daughter experienced 30 seizures during her overnight EEG, and the potential ramifications of that
- Watching helplessly as she experienced multiple seizures per day
- Being hospitalised after our daughter experienced a potentially life threatening adverse drug reaction
- Becoming acquainted with Eosinophilic Esophagitis and all of the restrictions and endoscopies that come along with that
- Suspected diagnosis of high functioning Austism Spectrum Disorder
There have been other detours along the journey, but you get the idea. It’s been a bit of a bumpy road.
Throughout all of this, we have been incredibly blessed to have great support from our medical teams. We have lived in both the USA and Australia, and have accessed countless specialists and therapists that have taught us so much along the way.
After a 3 month initial stay in the hospital, our average week held 4 different medical appointments. While a lot of new mothers have the luxury of resting at home and getting acquainted with their newborns, I spent my time lugging both car seats from one appointment to the next, and then implementing the various therapeutic exercises at home.
The longest my children have ever gone without seeing a doctor, in their whole life, is 3 weeks. They have a pretty amazing medical vocabulary for their ages, and nurses and doctors alike get a kick out of seeing the twins normalise health concerns.
From the time my waters broke, to NICU and Intermediate Nursery stays, consultations with specialists, working with Early Interventionists, OTs, Speechies, Feeding Therapists, Physios, Educational Psychologists etc, I have worked tirelessly to understand everything I could about my children’s health and development. This has proven for me, to be one of the best ways to handle my stress.
My husband often jokes about my medical prowess. Every time we have had an ER visit or ambulance ride, I am asked if I am a nurse or in the healthcare profession.
I’ll be upfront with you, I’m not a medical professional and I don’t aim to give you medical advice, but I can certainly share some of my experience and knowledge that I’ve picked up along the way. I might only be a mum, but I have made it my business to be a Serious Mumma.
And I’d love to hear from you about some of the areas that you have developed Serious Mumma level knowledge in due to your own children’s health concerns, so feel free to leave a comment.