We all have happy memories of our baby’s milestones. The first smile, the first giggle, eating solids, sitting up. But what if your baby’s milestones were having your first cuddle at ten days of age or coming off a ventilator?
Rachel Ashley’s son Joshua was born premature in 2006 with an underlying heart condition. He was very ill and was taken straight into the neonatal intensive care unit (NICU) where he spent the next four weeks. Rachel says:
“A nurse on the unit advised me to keep a record of his progress and my feelings and gave me a blank notebook to record this in. Something so simple became very important.
That notebook holds the most precious memories and milestones that my ‘normal’ baby record book did not have pages for, for example on his ‘first’ photo he was on CPAP* with cardiac monitors, lines and a nasogastric tube. I didn’t have my first cuddle until he was ten days old, his first bath was by a nurse on NICU and we spent his first christmas on the unit.”
Rachel created a special baby record book for other mums of premature babies, which you can buy at tinylittlebaby.co.uk. It has those pages that other record books don’t, plus an extra large keepsake box to store the bulky mementoes that come from the NICU.For each book that’s sold, Rachel makes a donation to charities that support babies who need special care.
“To keep him alive when he was born, Joshua needed Curosurf, Nitric Oxide, Dopamine, Frusemide, Spirolatctone, Iv Benzyl Penicillin, Gentamicini, Mettronidazole, Aciclovir, Flucloxacillin and IV Dextrose not forgeting the high frequency osculation and ventilation to keep him breathing and phototherapy for jaundice. It was nice to look back through my own note book and see the lines and IV’s be slowly removed day by day as he came off the cocktail of medication. It makes you realise how far he has come.”
I wanted to write this post about Rachel and Joshua for two reasons. Firstly, if anyone you know has a premature baby, then you might be able to offer them some support by telling them about this book, or even buy it for them.
Secondly, I had two healthy full-term babies. I don’t know of anyone who has had a premature baby, so I have no personal experience. But reading about those milestones that I totally took for granted (needing ventilation and a cocktail of drugs, that first cuddle after they are born) made me realise how lucky I am.
“Joshua is now three-and-a-half and doing really well (as you can see from the photo). He has a lot of ongoing issues – a congenital heart defect not related to him being premature and he has hemipligia and epilepsy cause by bilateral interventricular heamorrages ( two brain bleeds he had at three and five days old, one on each sides of his brain). He is still under a peadiatrician, cardiologist, neurologist urologist, epilepsy nurse, physiotherapist, and a speech & language therapist though it sound a lot worse than it is. To see him running around you would never guess he had any ongoing health problems.”
Many mums have business ideas that spring from personal passion or experience. I don’t think you could get much more personal than this.
Rachel Ashley is the owner of tinylittlebaby.co.uk
*CPAP stands for continuous positive airway pressure it delivers pressurized air to the baby’s lungs through small tubes in the baby’s nose or through a tube that has been inserted into his windpipe. CPAP helps a baby breathe, but it does not breathe for him.