"The title Speech & language therapy isn't quite what I thought it meant..."

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Sounds pretty obvious right? Yes thats what I thought..

Summer was born with a cleft palate, meaning that she misses a part of the soft palate at the back of the roof of her mouth. The palate of our mouths affect the way we eat and speak.

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When Summer was just a week old, we met our cleft nurse at Great Ormond Street hospital. She taught us the basics of bottle feeding using a squeezy bottle & winding, most of which sounds normal and easy but not after you've just done a degree in tube feeding.. trust me. We were and still are under two specific cleft nurses and overseen by the cleft team.

We were encouraged to bottle feed Summer and top her up with the milk she didn't take orally through her Nasal Gastric tube. This went so so well for months, she was proving every doctor wrong  by feeding so well.. until milk started leaking into her airway which made it too dangerous to oral feed. We needed barely any assistance from our cleft nurses as Summer took to the bottle so so well at the beginning.

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And then came the day we were introduced to our Speech & Language therapist..

"She's not even 4 months old why do we need to meet a speech & language therapist...?" I said to Paul the night before. Which led us both to worry about what kind of therapy this would consist of.

In a matter of fact our speech and language therapist helps with feeding.. I know right? She visits us often to watch Summer bottle feed and eat puree etc. She would offer advice on which textures to introduce at what time and make sure her feeding was generally safe. This went well for 4-5 months until she aspirated.. She was declared nil by mouth immediately.

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Summer has been nil by mouth for around two months now. Two months of being purely tube fed. Two months of hearing mums at baby group talking about their wearing journeys. Saddest thing of all is that she's so interested in watching us eat dinner and drink from cups, she's so intrigued as to what we're doing.

Summer will start to practise feeding again once her breathing tube is permanently removed.

Another videofluroscopy (video x-ray) will need to be done to check her swallow is safe once NPA (breathing tube) is removed, this will confirm that milk and or puree doesn't leak into her airway like it did before or cause her to choke. Feeding for Summer should become easier when we lose once of her tubes.

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Summer is now just over 9 months old, her first worlds were 'no no no no' - probably from all the times we say no no to her when she tries to pull her tubes out. Her second word is 'mama' as you can imagine i'm thrilled!! 

When Summer's speech increases the speech & language therapist will be near by to help correct or teach any mispronounced words Summer might say. 

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She's such a happy girl all of the time except recently she's been being really sick after 3 of her feeds during the day. We booked an emergency GP appointment two days after the sickness started, the GP maximised Summer's reflux medicine and advised us to use a different milk. Her sickness is still lurking after 3 weeks, I was worrying at how much weight she would have lost but actually has still managed to gain which is a relief.

We met with the dietician who oversee's Summer's volumes of feeds and her weight gain and she has advised gaviscon. Reflux is common in babies anyway but it seems in PRS babies the tubes just seem to make it more of an annoyance.

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We now have a date for Summer's pre op and awaiting another sleep study to see if her airway has grown enough to support itself without needing her breathing tube. Im just hoping her operation doesn't coincide with us moving house which it probably will but thats ok as we love to take on a challenge! 

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For all that have been following our story, we will be visiting the neonatal unit at UCLH hospital - where Summer was born soon and was wondering if anyone following our journey (wether you know us personally or not) if you had any new born baby clothes or baby blankets and teddies you'd like to re-home i'd love to do a collection and donate them to UCLH Neonatal Unit. They will be so so grateful and its for a good cause. When we were there the magical staff make boxes for the babies and fill it with bits and give to the parents to keep.

If you are interested and have bits you'd like to donate please leave a comment under the CONNECT button below, leave your name and a short message and we can arrange something.

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Thank you for reading Speech & Language & also for your ongoing support. Our blog was meant for close family and friends yet has already reached North & South America, Italy, Spain, Cyprus, Australia & New Zealand!

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Jessica  x 

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