'Doctors quickly confirmed the milk was infact going directly into Summer's airway and into her lungs...' & 'If I receive and read one more generic email in regards to weaning your baby I am going to scream!!!'

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Summer was born in April 2017. As soon as she was wheeled down to the Neonatal Intensive Care Unit at birth she was made stable and fitted with both an NPA and an NG. As far as feeding was concerned I didn't have a say - it was whisked out of my control before I had time to even think about it and placed firmly in the responsibility of the Nasal Gastric tube to feed my baby.

A Nasal Gastric tube simply goes from the nose down through the oesophagus into the stomach. Every single time before a feed we have to test the tube. We take a strip of PH paper, aspirate milk or liquid from Summer's stomach with a 20ml syringe and plunge any liquid from the syringe onto the PH paper, this is to test the tube is in the right place. Sneezing, coughing, crying, being sick or pulling at the tube can move it potentially up into the lungs where you obviously don't want the milk to go so this is mandatory 6/7 times a day before every feed and medicine. The lighter the colour on the PH strip the more alkaline, the darker the colour the more acid - if a reading is above 5.5 - so a blue colour reading the more acid you've aspirated therefore you've either aspirated medicine or the tube has moved from the stomach. If this happens test again, the chances are it will test fine but if the blue result happens again either an x-ray is needed or another NG needs to be fitted as the tubes probably moved.

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We were transferred to Great Ormond Street when Summer was exactly a week old. The day after we arrived we met the cleft nurses. They were on hand to help us understand how to tube and bottle feed. They recommended a feeding bottle called 'Vital baby, Nurture', because of Summer's cleft palate she misses 25% of the roof of her mouth at the back so this means its almost impossible for her to drink out of the 10 Tommee Tippee bottles we had sterilised and ready to go. This Vital bottle was made of silicone, meaning I could give her a helping hand by gently squeezing the bottle as she drinks from it.

At just a week old I sat and watched the nurse teaching me how to bottle feed Summer then remembering to wind her - that was the bit Paul & I found easy to forget because tube fed babies do not need to be winded. Summer took 3ml and it was a huge triumph, I remember seeing her squished face in the nurses hand almost bent in half being winded - so many things to learn and remember. Summer was to have a bottle everyday once per day - just one more thing to remember and to add to the list of things!!

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In my previous story "The Sunday Curse" I talked about Summer coming home from Great Ormond Street for the first time at almost three weeks old and then falling seriously ill with bronchiolitis and being admitted three times in the space of a month and a half - this obviously meant that bottle feeding was put on the back burner, her breathing came first. From mid June until recently (November) our Dietician and Speech and Language therapist visit us once/twice a month to continue working with us through feeding and weaning as Summer grows.

It wasn't that long ago I was asked how often Summer feeds from her vital bottle, my reply being two-three times per week - both nurses explained that she really should be tube fed 5 times per day and bottle fed once per day, OK I thought, we can do that...

On our next visit with the nurses they wanted to watch Summer feed from the bottle (bearing in mind she can take anything from 20-40ml depending on her mood and how hungry she is). Things seemed fine, she was doing so well.

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On a routine visit in August our SLT (Speech & Language Therapist) was away on holiday so we were reviewed by her colleague, she came in, asked how we were then asked us to go ahead and start Summer's feed. Almost immediately she was concerned - noisy snuffly, heaving breathing filled the room. Summer's breathing is usually a little noisy because of her breathing tube so I didn't think much of it. After 5-6 mouthfuls Summer coughed and spluttered so we stopped feeding, I lifted Summer into her chair after winding her and finished her feed through her tube. Whilst finishing her feed the SLT explained that coughing while oral feeding indicates something isn't right. She immediately referred us back to Great Ormond Street for a videofluroscopy - A video X-ray. We were sent an immediate appointment for a few months time.

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In between waiting for our videofluroscopy to come around we continued seeing our nurses who offered endless amounts of support and advice. Summer turned 6 months old - it was time to start a whole new adventure of weaning. Puree's, soft mash and yogurt along with mushed banana and avocado. How exciting!!!

I headed straight to the shops with Paul and Summer and picked up a selection of Ella's kitchen pouches, making sure the majority were savoury not sweet. Sounds funny but to a new mum how are we supposed to know that? Summer was also allowed any foods that dissolved so we picked up soft dissolvable crisps and rusks. The first time we fed Summer she really liked it, this brought so much happiness and it was another milestone met. The nurses now wanted me to bottle feed once a day, tube feed 5 times a day and give Summer 'solids' in-between feeds once a day. Busy schedule with feeding what felt like most of the day - we totally embraced it. 

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After a week or so of feeding Summer different things such as: Ella's kitchen pouches, avocado, banana and dissolvable crisps things went from really good to scarily dangerous and quickly. It was a Saturday afternoon when we were all sat in the kitchen when Paul & I decided to give Summer some food. Strapped into her highchair any little rustle of a packet opening would excite her. We decided to give her a dissolvable crisp, both hands busy getting the crisp from her tray into her mouth. Almost at the end of her one crisp Summer stopped and held her breath - her tube was blocked! Paul ran into the next room to grab her suction kit to unblock her tube. Summer really struggling was fighting me, head turning from right to left really fast she was terrified, the colour drained from her face. My only thought was "Fuck! Quick!"

Paul & I make a super team, we're so in sync without even talking to each other at the time we knew what we each of us needed to do and it had to be done quickly. A moment of pure proudness and excitement quickly turned into a total nightmare. My nan was in the kitchen with us, she had to leave the room she was so scared to see Summer like that. After 2 minutes (felt like hours) together we unblocked her breathing tube. Because of Summer's cleft palate the breathing tube sits at the end of her tongue at the back of her throat therefore as she was swallowing her beloved food it simply blocked her tube. She can breathe through her mouth but not while its full of food.

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I sent a text to both nurses explaining what had happened first thing Monday morning, it was time to leave behind those foods and concentrate on puree and yogurt type textures. Understandably nervous we fed her some puree days later. All seemed absolutely fine, we obviously rushed into feeding and missed out the basics first. After 6 mouthfuls of puree it was enough, she loved it! I cleaned Summer's mouth and hands with wipes when she let out a huge sneeze, all of the puree I had just fed her came straight back out of her nose through her breathing tube blocking it again.. this time I was alone. I repeated the same actions as we had before. After sometime Summer was fine, I was not. I was petrified. I can't continue to do this. I also didn't want Summer to associate feeding with pain so we decided to stop.

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It was time for the videofluroscopy at Great Ormond Street. It took place on a Friday morning, my mum drove us up there. It took around 35-40 minutes as it always does to get there but on this particular day when we arrived we were met with parking restriction signs almost everywhere. I took us 20 minutes to park the car and 10 minutes to check in. We checked in and made our way down to X-ray on the second floor, we were quite early - its kind of an obsession of mine. Once called into our appointment I had to sit Summer into a car seat type chair infant of the X-ray machine. I strapped her in and started to bottle feed her, 3 mouthfuls in the test was stopped immediately. The Doctors quickly confirmed the milk was infact going directly into Summer's airway. I was so upset. My poor baby. How long was this going on? How often was this happening? Weaning had become dangerous. 

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I have recently spoken to a specialist from Great Ormond Street hospital less than a week after the VF happened, now we are currently on nil by mouth until further notice.

Summer's breathing and upper airway obstruction need to be perfect before we can begin again.

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The most frustrating thing now is all the emails I get from "Tesco baby club", "boots mini club" & "bounty baby".. If I read and receive one more generic email in regards to weaning your baby I am going to scream!!! As if all babies are the same. How shallow.

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To be continued...

Thanks for reading "A Dangerous Weaning Journey"

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Jessica x