Posted: July 10, 2018

Teddie’s Story

Teddie (mum, Lisa Crowe) (2)Teddie (mum, Lisa Crowe) (1)

In June 2016 Teddie came into our lives born on her due date. Little did we know the unexpected journey we were about to embark on.

We were enjoying newborn cuddles when during the newborn check, it was noted that Teddie was floppy. We weren’t really concerned (as first time parents we had no idea what what to expect). She was taken to see a doctor and it was decided she just needed some food. Teddie however struggled to feed and later on that day she was admitted to SCBU. Hypoglycemia was the diagnosis and again, we were initially unconcerned. The treatment was get her blood sugars up then slowly wean her off the glucose drip. Sounded simple enough.

On the eve of Teddie’s second day in the world we were taken into a private room. We were told that they thought Teddie might be in cardiac failure and someone from the Freeman was coming now. We were told that her head was big as well as some of her organs (kidneys and spleen) all of which needed to be scanned. They thought her limbs were short and a full X-ray was needed. She also had low muscle tone. By the end of her 4th day she was on oxygen. We were devastated. She was moved from the Green Area to the Blue Area.

By the end of Teddie’s second week the scans revealed nothing of note or that could explain what was going on. This was when Teddie was referred to genetics. We also started talking about when it would be realistic to take her home now that all the scans had not revealed anything that could explain what was happening. She was on an NG tube and oxygen so the discussions focused on weaning her off. We decided after speaking with some of the staff that it would be best to accept that she would be coming home on oxygen and focus on getting the NG tube out. Coming home on oxygen was very overwhelming, however, after a few days at home you soon get used to it.

No-one can prepare you for a SCBU journey. Going home without your baby is devastating. There are ups and downs and I can guarantee, even though Teddie spent 3 weeks on the Ward, which was a fraction compared to others, it felt like a lifetime. Practically, It is also very expensive. The beeping is scary, but it’s scary when it’s gone. We were making notes for months over everything, similar to what they did on the Ward (such as how much milk she was feeding, her weight etc). But after a while we started to calm down a bit and just enjoy Teddie being at home with us. I started taking her to baby groups and getting out the house. You get stared at a lot but mainly people are kind and simply ask about the tubes and the tank.

Our lives became (and still are) lots of hospital appointments. Teddie is now 2. We were discharged with a bleak predicted prognosis which on the whole hasn’t materialised. She does have delayed development. She had heart surgery to repair a hole. She had gastric erosions. We still have loads of hospital appointments, as well as additional input from portage, physio and soon SALT. We’ve had a few hospital admissions too. She is still on oxygen though just at night. She is also still undergoing genetic testing and is officially classed as “undiagnosed”.

She is an absolute delight. She is so laid back and happy that it amazes me that she’s been through so much in her short little life. She loves knocking down towers, playing with cars and bringing us “that’s not my” books to read to her. She also loves In the Night Garden, Hey Duggee and Go Jetters. She goes to nursery and will eat literally anything.

Despite the unexpected and very bumpy ride, we couldn’t imagine our lives without her.

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