Well it's been around a month or so since I last logged in and wrote a piece on here. We've been so busy. We had a wonderful, busy Christmas period and we hope you did too. We are so excited to welcome 2018 as its a huge year for our family.

​

Summer has had a sleep study since I last told a story, the consultants at great Ormond Street hospital are sensational. The sleep study is to monitor her breathing and saturations in her sleep. Summer has a Grade 4 airway, usually babies are born with Grade 1.

In the sleep study the Doctors removed her prong to see how she would cope without it, the oxygen was on and at the ready just incase. The conclusion to that sleep study was that Summer's airway has not yet grown enough to support her upper airway from being obstructed by her tongue and now its not yet time for her NPA to be removed. The consultants confirmed they are exceptionally happy with Summer's progress, growth and well being. They did break the news to us and said the Nasal Pharyngeal Airway will be staying in until further notice.

​

I cant lie and tell you that we haven't been given a rough time scale of when it will potentially be removed but for now she still has it in.

​

​

Summer-May is now 8 months old... how? what? why? and when? did that happen??

At the grand age of 6 and a half months Summer was announced Nil By Mouth.

​

She was pronounced Nil By Mouth after a video-fluoroscopy a month and a half ago at Great Ormond Street hospital. A video-fluoroscopy is a video x-ray. The results showed something so unexpected.. Summer's milk when drinking from a bottle was leaking into her airway, the soft rusks and puree she was feeding on was simply blocking her prong forcing her to hold her breath until we unblocked it - super scary stuff.

​

At her most recent sleep study, Paul and I had everything crossed for the prong to be out in time for Christmas.

Once Summer's prong is removed and only then, can we start slowly weaning and feeding again.

​

I thought I had everything planned out, like all us mums we like to be organised. I was 99% sure we would be feeding her a miniature Christmas dinner for her first christmas.. This wasn't the case. At now 8 months old our baby is still solely reliant on her Nasal Gastric Tube to feed her which has to be changed by a nurse monthly.

​

Summer is a perfectly healthy weight and that is purely down to the feeding tube doing its job. She is now fed 5 times a day at 180ml every hours. 30ml in an ounce.. 6 ounces a feed. This is closely monitored by our Dietician. 

​

Recently after our visit with our dietician I asked to return the feeding pump we were given, after a few horror stories we have heard and purely the fact that I felt totally redundant using it I just didn't like it plus is takes up so much space. She is still gravity fed through her syringe and has medicine four times a day for her reflux.

She has now cut 6 teeth - four at the top and two at the bottom and although she is Nil By Mouth I have been giving her bonjela and other gels to numb her gum to relieve some of her pain.

​

​

​

Our upcoming events:

​

​

  - A follow up hearing test at Nuffield Hospital (kings cross)

After failing her new born hearing test Summer was referred at two months old, after a number of tests it was confirmed she had glue ear. A few months on, we are pretty certain theres no concerns with her hearing so fingers crossed this confirms it. PRS babies suffer with their ears.

​

  - A sleep study at Great Ormond Street Hospital.

This will be to double check that Summer's airway has grown enough to support itself and wave goodbye to what was once her lifeline (NPA)... nervous!

​

  - A meeting in the Cleft Clinic at Great Ormond Street Hospital

I have a strong feeling this will be Summer's pre-op appointment although it doesn't quite say those words on the appointment letter. This will be time to discuss her Cleft repair operation.

​

  - A visit with her pediatrician at Great Ormond Street Hospital

If I remember the last visit this is a general check up on her health and growth. Potentially talks about operation on this visit too. 

​

  - Summer's Cleft palate surgery at around 12 months old.

​

In between these appointments we will be closely monitored by our health visitor, dietician and Speech and Language Therapist. Summer will have to learn the basics of eating, feeding from a bottle and talking with the help of these amazing professionals. But for now we have to sit tight and continue tube feeding.

​

 

​

Thank you for reading 8 months Nil By Mouth,

​

​

​

2018 is a huge year for us, we are excited and nervous to share more of our ongoing journey with you. We appreciate your continuous support.

​

​

​

Jessica and Paul x