Tag Archives: breathing difficulties

Our Heavenly Father’s legacy to us: Freedom!

Posted on November 12, 2015 by florencejoy

The following came to me as a word of encouragement & exhortation to someone I know & care about. I share it here in the hope that it may speak to someone else reading this, too. I think we could … Continue reading →

Posted in Ramblings | Tagged adventure, breathing difficulties, Christianity, direction, eternity, faith, freedom, God's presence, guidance, Heavenly Father, illumination, Jesus, legacy, life, light, perspective, religion, risk, space, Spirit, spirituality, truth, vision, Way | Leave a comment

9 November 2014 – Update – Sunday morning…

Posted on November 25, 2014 by florencejoy

I was tempted to feel peed off yesterday when at 8pm, just as Toby had fallen asleep & I was about to do the same (bearing in mind I’d been up for 38 hours at this stage & Toby hadn’t … Continue reading →

Posted in Toby | Tagged breathing difficulties, chest infection, children's health, desaturations, hospital, nebuliser, oxygen assistance, oxygen saturation levels, parenting, premature baby, prematurity | Leave a comment

8 November 2014 – The little champion…

Posted on November 25, 2014 by florencejoy

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 | Leave a comment

7 November 2014 – Keep on a prayin’!

Posted on November 25, 2014 by florencejoy

Hi all, Doc not too happy with little Toby’s progress this morning. Says he’s not happy that he’s had a fever for a week now, plus would have expected his breathing to have improved more than it has, given that … Continue reading →

Posted in Toby | Tagged A&E, breathing difficulties, chest infection, children's health, family, fever, parenting, prayer request, premature baby, prematurity | Leave a comment

6 November 2014 – Just a wee Toby update…

Posted on November 25, 2014 by florencejoy

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 →

Posted in Toby | Tagged antibiotics, baby, bacterial chest infection, breathing difficulties, chest recession, children's health, fever, geneticist, parenting, premature baby, prematurity, steroids, viral chest infection, Williams Syndrome | Leave a comment

A near miss with A&E…

Posted on November 4, 2014 by florencejoy

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 | Leave a comment

Letter to NNU consultant…

Posted on October 28, 2014 by florencejoy

I had one question with regards feedback from the neurologist. He ended his summary suggesting that some blood and urine chemistry testing is done (if it hasn’t already been) to screen for inborn errors of metabolism. He suggested arranging: blood … Continue reading →

Posted in Toby | Tagged abdominal pain, blood chemistry testing, blood CK, breathing difficulties, calcium levels, cardiologist, children's health, colic, colicky, cow's milk allergy, cow's milk protein hypersensitivity, feeding, feeding difficulties, forceful vomiting, homocysteine, Hypercalcemia, inborn errors of metabolism, microarray-based CGH, neurologist, ng, parenting, plasma amino acids, projectile vomit, refusal to feed, thyroid function tests, tube feeding, uric acid, urine amino acids, urine chemistry testing, urine organic acids, Williams Syndrome | Leave a comment

24 October 2014 – Letter to geneticist – further questions…

Posted on October 28, 2014 by florencejoy

I have a few thoughts that I wanted to air and I find it easier to lay them out on paper, as it were – but I don’t mind if you would rather speak on the phone than respond by … Continue reading →

Posted in Toby | Tagged abdominal breathing, abdominal pain, amino acid based formula, blood chemistry testing, blood CK, breathing difficulties, cardiology, children's health, colic, colicky, cow's milk allergy, cow's milk protein hypersensitivity, enriched formula, feeding, forceful vomiting, fussy baby, geneticist, homocysteine, Hypercalcemia, hypoallergenic formula, Hypophosphatasia, inborn errors of metabolism, joint laxity, Metopic Synostosis, microarray-based CGH, mytopic suture, neurologist, NG tube, Nutramigen AA, paediatric gastroenterologist, parenting, Plagiocephaly, plasma amino acids, projectile vomit, recessing under rib cage, reflux, refusal to feed, silent reflux, SMA Gold Prem 2, thyroid function tests, tube feeding, uric acid, urine amino acids, urine chemistry testing, urine organic acids, wheezing, Williams Syndrome | Leave a comment

28 July 2014 – All things Toby…

Posted on October 28, 2014 by florencejoy

Hello friends, It’s been over three weeks since our last update so I thought I would fill you in on news from recent hospital visits and progress etc. A few weeks ago I was reading over some of those first … Continue reading →

Posted in Toby | Tagged answered prayer, AVSD, blessing of life, breathing difficulties, bring your soul into blossom, cardiologist, children's health, chromosome check, cow's milk allergy, cow's milk protein hypersensitivity, cranio-facial, death, diuretics, eternity, everlasting love, faith, faithfulness, feeding, feeding concerns, feeding problems, friends, G-tube, geneticist, gift of children, gift of life, glimpses of eternity, God's faithfulness, gratitude, gross motor delay, healing, heaven, hole in the heart, hope, lyrics, Metopic Synostosis, mild low tone, miracle, music, NG tube, Nutramigen AA, parenting, Prader-Willi Syndrome, SALT, short memories, song, songwriting, Speech and Language Therapy, swallow study, thankfulness, the blossoming soul, trust, tube feeding, video fluoroscopy, VSD, weaning | Leave a comment

16 May 2014 – Toby’s medical history to date – Actual age: 32+5 weeks / Corrected age: 25 weeks…

Posted on October 28, 2014 by florencejoy

Upon writing a letter to a friend of my parents-in-law, who works in the medical profession, seeking advice as to how to move forward, I had to bring my records of Toby’s medical journey up to date. Here they are, … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, 32+2 weeks gestation, abdominal pain, anti-reflux milk, aspirating milk, aspiration, barium x-ray, bilateral inguinal hernia, bolus feeding, breathing difficulties, breathlessness, bronchiolitis, cardiologist, children's health, choking, chromosome check, chronic congestion, colic, colicky, constipation, coughing, cow's milk allergy, cow's milk protein hypersensitivity, delayed gastric emptying, dietician, Domperidone, early weaning, Enfamil AR, expressing, feeding, feeding concerns, feeding diary, feeding pump, feeding therapy, forceful vomiting, gagging, high respiratory rate, hole in the heart, medical history, MRI scan, neonatal unit, neurological, NG tube, nil by mouth, NNU, Nutramigen AA, Nutramigen Lipil 1, Omeprazole, palivizumab, parenting, pneumonia, poor feeding, poor weight gain, premature, Prevention and Treatment of Tube Dependency in Infancy and Early Childhood, projectile vomit, pyloric stenosis, reflux, refusal to feed, RSV vaccine, SAGE, SALT, second opinion, silent aspiration, silent reflux, SMA Gold Prem 2, Speech and Language Therapy, starvation techniques, suck, syringe feeding, tongue thrusting, tongue-tie, tongue-tie release, tube dependency, tube feeding, tube weaning, umbilical hernia, unsafe swallow, video fluoroscopy, VSD, weaning, weight dropping off centiles, wheezing | Leave a comment

18 March 2014 – Toby – Letter to GP…

Posted on October 26, 2014 by florencejoy

Long time no see (which can only be a good thing, right?) Question: If you were to make a referral for Toby to have an ultra-sound to check for Pyloric Stenosis, how soon could that be done? The reason being … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, breathing difficulties, children's health, constipation, cough, frequent hiccups, GP, NG tube, paediatric gastroenterologist, parenting, projectile vomit, pyloric stenosis, reflux, tube feeding | Leave a comment

Toby – post meeting with gastroenterologist etc….

Posted on October 26, 2014 by florencejoy

Once again, I’m sorry for the tardiness of this update, especially if you’ve been waiting for news post our meeting with the gastroenterologist the Thursday before last (27 Feb). Our meeting with the gastroenterologist: Our meeting with the gastroenterologist had … Continue reading →

Posted in Toby | Tagged 24 hour pH probe test, breathing difficulties, children's health, Christianity, church, community, coughing, early weaning, faith, feeding aversion, feeding diary, feeding difficulties, frequent hiccups, love, neurological, NG tube, paediatric gastroenterologist, parenting, positive feeding experiences, prayer, projectile vomit, Psalm 56, reflux, stand in the gap, support, testing times, tube feeding | Leave a comment

14 February 2014 – Letter to gastroenterologist…

Posted on October 26, 2014 by florencejoy

Forgive me for using this email address to try to get a message to the gastroenterologist. We are actually due to be seeing him in his NHS clinic on 27/02/14 – after having heard from Toby’s Speech And Language Therapist … Continue reading →

Posted in Toby | Tagged 32+2 weeks gestation, aspiration, bilateral inguinal hernia, breathing difficulties, children's health, chronic congestion, cow's milk protein hypersensitivity, CPAP, Enfamil AR, feeding, feeding concerns, high respiratory rate, NG tube, nil by mouth, NNU, Nutramigen AA, Nutramigen Lipil 1, paediatric gastroenterologist, palivizumab, parenting, poor feeding, prematurity, reflux, RSV vaccine, SALT, tongue-tie, tongue-tie release, tube feeding, umbilical hernia, video fluoroscopy, VSD | Leave a comment

13 November 2013 – Trip to A&E…

Posted on October 26, 2014 by florencejoy

In A&E waiting for Toby’s first intravenous shot of diuretics to flush fluid from the lungs. Brought him in today with Isobel at 12.30pm. Ed just been and gone with Isobel so I’m now here with him. Isobel was so … Continue reading →

Posted in Toby | Tagged A&E, baby, breathing difficulties, children's health, congestion, diuretics, enlarged heart, feeding, fluid on lungs, parenting, premature baby, prematurity, rattly chest | Leave a comment

1 November 2013 – Update…

Posted on August 13, 2014 by florencejoy

The intubator has now been removed and Toby is breathing mostly on his own, but he now has the support from a CPAP machine (continuous positive airway pressure). His respiratory rate is higher than the normal range at the moment. … Continue reading →

Posted in Toby | Tagged anaesthetic, baby, blood acidity, blood gas levels, breathing difficulties, chest x-ray, children's health, continuous positive airway pressure, CPAP, Emmanuel, God is with us, hernia, hospital, ICU, Immanuel, inguinal hernia, Intensive Care Unit, intubated, IV fluids, lobe of lung collapsed, motherhood, neonatal unit, NNU, parenting, premature baby, premature birth, prematurity, reaction to anaesthetic, respiratory failure, ventilator | Leave a comment

13 October 2013 – Discovered a heart problem…

Posted on August 13, 2014 by florencejoy

We discovered yesterday that Toby has a problem with his heart. It is a form of congenital heart disease, called an AVSD. It’s basically a hole in the heart, between the two chambers, which means that the blood from both … Continue reading →