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Tag Archives: baby
Tobias! – Two years on…
Tobias! Toby turned two at the end of September. We had an amazing few weeks of hospital discharges around that time! Gastroenterologist Five days before Toby’s birthday, the gastroenterologist said ‘farewell and all the best’ to the little fella, with … Continue reading
Posted in Toby
Tagged baby, cardiologist, children's health, cow's milk allergy, cow's milk protein allergy, cow's milk protein hypersensitivity, Downs Syndrome, echocardiogram, enlarged heart, feeding, feeding aversion, feeding concerns, first word, geneticist, hole in the heart, hospital, hospital discharge, Left pulmonary artery stenosis, micro-array CGH, microarray-based CGH, microarray-based comparative genomic hybridisation, Neonatal Unit Consultant, NG tube, paediatric gastroenterologist, parenting, Prader-Willi Syndrome, premature baby, premature birth, projectile vomit, SALT, speech and language therapist, Speech and Language Therapy, speech delay, thickened left ventricle, tube feeding, Ventricular Septal Defect, VSD, Williams Syndrome
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I gave birth to a premature, 32 week old baby entirely alone in the hospital’s ANTEnatal ward…
1 November 2015 – Letter of complaint to the hospital where Toby was born… ~ Dear sir/madam, How it has taken me quite this long to finally sit down and write to you is quite incredible and yet not a … Continue reading
Posted in Toby
Tagged antenatal, baby, birth, child birth, childbirth, children, children's health, complaint, delivery, family life, gave birth alone, hospital, labour, letter of complaint, motherhood, negligence, newborn, NHS, parenting, pregnancy, premature baby, premature birth, Women's health
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24 November 2014 – Follow-up letter to medical staff overseeing Toby’s care…
Good morning, Further to my last email I thought it was important to let you know that what I described as ‘sadness’ & ‘physical slumps’, in my list of things I’d noticed Toby doing are, I think, in fact related … Continue reading
Posted in Toby
Tagged activity, attention, baby, children's health, emotion, empathy, feel, focus, moro reflex, movement, pain, parenting, physical slumps, premature baby, prematurity, sensory perception, sensory processing, smell, sounds, taste, teething, touch, worry
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21 November 2014 – Letter to medical staff overseeing Toby’s care…
Dear all, There are a few little sensory behaviours of Toby’s that I have noticed recently, which then challenged me to think about any such sensory processing behaviours that I have noticed – whether a while ago or more recently. … Continue reading
Posted in Toby
Tagged activity, attention, baby, children's health, DDD, Deciphering Developmental Disorders, emotion, empathy, feel, focus, gross motor delay, growth problems, happy demeanour, micro-array CGH, moro reflex, movement, pain, parenting, physical slumps, poor weight gain, premature baby, prematurity, prominent forehead, puffy eyes, sadness, sensory perception, sensory processing, separation anxiety, smell, sound, taste, touch
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14 November 2014 – Toby doesn’t have Williams!
Toby doesn’t have Williams syndrome. Ed & I are going away with friends for the weekend. Those two things seem to perfectly compliment one another… Upon receiving the phone call from the geneticist saying the results of the micro-array CGH … Continue reading
Posted in Toby
Tagged baby, children's health, micro-array CGH, parenting, prematurity, relief, rest, Williams Syndrome
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8 November 2014 – The little champion…
Hello again, you troopers! The view from the 11th floor of Toby’s room at a central London hospital… Yesterday culminated in Toby & I heading to our local hospital A&E after all. Toby’s temperature had risen again, he was breathing … Continue reading
Posted in Toby
Tagged A&E, ambulance, baby, blood tests, breathing difficulties, cannula, chest infection, children's health, family, family life, fever, GP, Holy Spirit, Holy Spirit's guidance, Holy Spirit's prompting, hospital, hospital transfer, IV antibiotics, nebuliser, oxygen assistance, parenting, prayer request, premature baby, prematurity
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6 November 2014 – Just a wee Toby update…
We’ve been seeing the doc each day at his request, so as to keep an eye. And we’ve been giving Toby steroids each day to keep airways open, plus antibiotics in case it’s a bacterial infection (just don’t know – … Continue reading
Fact 30/30 – I delivered Toby on my own…
January 15th 2014 Fact 30/30 I delivered Toby on my own… 2013 was, I think, the most difficult of my life. Very early on in the year, just three days after my birthday in fact, an early pregnancy scan revealed … Continue reading
Posted in #30til30
Tagged 2 Corinthians, 2 Corinthians 12:19, aloneness, answered prayer, baby, bereavement, bilateral inguinal hernia, blessing, child birth, children's health, compassion, contractions, death, delivery, Emmanuel, faith, God's faithfulness, God's goodness, God's presence, God's provision, GORD, grace, grief, healing, holes in the heart, Immanuel, impossibility, losing a baby, losing a child, miracles, miscarriage, missed miscarriage, motherhood, neonatal unit, parenting, possibility, prayer, pregnancy, premature baby, premature birth, premature labour, prematurity, unborn baby
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A near miss with A&E…
We had a near miss with A&E yesterday. After being treated at home with steroids for croup last week, I took Toby back to the doctors yesterday, suspecting he’d developed a secondary chest infection. His respiratory rate was up to … Continue reading
Posted in Toby
Tagged A&E, antibiotics, baby, breathing difficulties, Calpol, chest infection, children's health, croup, faith, geneticist, healing, health, high respiratory rate, ill health, Isaiah 53, Isaiah 53:4-5, parenting, prayer, premature baby, Romans 8, Romans 8:26, steroids, weeping, Williams Syndrome
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19 June 2014 – Toby’s Update…
Hello friends, We had an appointment with the gastroenterologist this morning. We are going ahead with the gastroscopy on Monday morning, in order to eliminate the nagging question mark that still lingers as to whether there is anything wrong in … Continue reading
Posted in Toby
Tagged 9 month old, baby, children's health, Craniosynostosis, delayed development, developmental delay, developmental milestones, duodentitis, faith, friendship, gastroscopy, God is good, healing, Metopic Synostosis, neck strength, neurological, NNU, oesophagitis, paediatric gastroenterologist, parenting, prayer request, rolling, sitting up, steadfastness, support, Tobias, TOF, tracheoesophageal fistula, trust, trusting God, upper airway secretions, video fluoroscopy
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“MORE sick!”
After exclaiming in a rather exasperated voice, “More sick, MORE sick”, dear little Isobel said, “Sorry mummy, Toby didn’t mean to”. Beautiful girl.
Posted in Toby
Tagged baby, children's health, exasperated, parenting, projectile vomit, toddler
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28 January 2014 – I feel so tired & alone…
I feel so tired and alone. I don’t feel reassured by being here. I see a different nurse and doctor each shift, explain the same things each time and no-one has instilled any particular confidence in me or demonstrated their … Continue reading
Posted in Toby
Tagged aloneness, baby, children's health, cow's milk allergy, cow's milk protein hypersensitivity, desperate, Disphagia, exposed, feeding, feeding aversion, feeding concerns, feeding diary, GORD, helpless, hospital, motherhood, NG tube, parenting, reflux, SALT, Speech and Language Therapy, suck, swallow, tube feeding
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8 January 2014 – Letter to GP – Feeding concerns mounting…
Hello, it’s Toby’s mum. Toby has only taken 165ml since 5am (first time I thought I would actually note it all down). He just woke up with an anguished cry (sounds like pain) out of a deep sleep, didn’t want … Continue reading
Posted in Toby
Tagged baby, children's health, dehydration, feeding, feeding concerns, GP, parenting, prematurity
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30 December 2013 – Letter to the consultant arranging Toby’s second inguinal hernia op…
Letter to consultant responsible for arranging Toby’s second inguinal hernia op, making our case for the operation to be booked in sooner than the date we were (finally!) given: Dear sir, You may remember that my husband and I brought … Continue reading
12 December 2013 – An update (if you can bear another!)…
I thought it was about time to give you a little more news. Things are looking quite Christmassy around here, with our Christmas tree in place, our lovely nativity scene in situ and advent calendars galore (what are grandparents for?!) … Continue reading
Posted in Toby
Tagged all things together for good, answered prayer, baby, cardiology, children's health, Christmas, colic, colicky, community, diuretics, family, feeding, God is good, God's faithfulness, God's provision, home, inguinal hernia, neonatal unit, NNU, parenting, prematurity, redundancy, unity, VSD
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27 November 2013 – Ed’s work situation & Toby’s heart etc.!…
So, tomorrow is Ed’s last day working for the property company, where he has worked as an electrician in their maintenance wing for just over a year now. You will remember from my last update that they gave him a … Continue reading
Posted in Toby
Tagged baby, cardiology, children's health, diuretics, feeding, feeding difficulties, healing, hernia, hole in the heart, inguinal hernia, laboured breathing, open heart surgery, parenting, patience, petition, prayer, prematurity, recessing under rib cage, redundancy, siblings, stress, toddler, VSD, waiting, weariness
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