Welcome baby Macey

The 15th July 2016 was a bittersweet day. My 3 year old was having his last day at preschool and starting school in September. Little did I know how the day would turn out world upside down!
Waving him off to his preschool leaving party I felt a very strange feeling in my stomach, I dismissed it and went off carrying on with some errands before I picked him up.
Little did I know or guess in my wildest dreams what would happen next.

Just 70 minutes later I was cradling a baby girl which I delivered on my bathroom floor. I had no idea I was pregnant, this is something you read about but really do not expect to happen to you.
It wasn’t long before Daddy ran home from work to find her crying in my arms.

She was taken to hospital due to her cord snapping and them needing to clamp it. Soon it became apparent she was making some unusual noises, but they couldn’t work out what they were. After numerous doctors examined her, the midwife asked to do her checks and found that she had a cleft palate. She was immediately fitted with a nasogastric tube (ng tube). It wasn’t till she was 4 days old when we finally got to meet our cleft nurse, when we reached hospital number 3 that she was actually diagnosed with a condition called Pierre Robin Sequence. When she was about 6 week gestation her jaw stopped growing (reasons for this are relatively still unknown) and this caused her tongue to be set back and in the wrong position, also her palate couldn’t close properly causing her cleft. This coincidentally means that whenever she was laid on her back her tongue would fall back and block her airway causing her to stop breathing.

We then had to wait 15 days for a bed at Great Ormond Street Hospital for her to have a sleep study before we could be discharged.

Time to go home

On the 9th August 2016 we finally got to bring Macey home after 25 days over 4 different hospitals.

9 days later, sadly we were admitted back to great ormond street as Macey was showing signs of obstruction again and after a further sleep study, it was decided she needed assistance from a nasopharyngeal airway (NPA) which is a tube which goes up the nostril and sits just behind the tongue to keep the airway tract open. This meant that I had to undertake training to sew, make, put in, change, suction and care for her with the NPA, and now she would also have to be put on a sats machine while asleep. This was on top of the 3 hourly NG feeds.

In September 2016 we received feeding pump training and this allowed us to deal with her reflux issues and suction her without having to manually hold a syringe and try to do everything else at the same time.

Aimee at Dinky Days Photography first photographed Macey 2 weeks before she had her sleep study in April 2017.

Macey had her airway until April 2017 when a sleep study confirmed she no longer needed it.

Macey has struggled with her growth and weight gain since birth, being 13lb 9oz at a year old and 18lb 8oz at 2. She also has a kidney condition called bilateral nephrocalcinosis which is being monitored.

In June 2018 Macey went bak to Great ormond street for her cleft palate repair. She was in for 3 days and her surgeon has done a fantastic job! She is still tube fed at just turned 2 and our journey is far from over. We had never heard of Pierre Robin Sequence before Macey was born and through the world of social media we have met and spoken to many affected families from all over the U.K. Every prs child’s journey is so different and research into linked conditions is still ongoing.

Having Macey inspired me to start up my own business called tubie doodles making patterned medical stickers for children who have essential medical tubes – such as NG or NJ tubes or nasal prongs.