Cover art for podcast Thriving in the Midst of Chaos: Parenting With Special Needs Kids

Thriving in the Midst of Chaos: Parenting With Special Needs Kids

100 EpisodesProduced by Jessica and Lewis TempleWebsite

Welcome to Thriving in the Midst of Chaos! This show is about surviving parenthood while having a child with special needs, while attempting to keep your self and your sanity intact. We share our experiences and discuss how we survived, what worked for us, and what didn’t work for us. This is a nonj… read more

1:18:25

Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg

Episode 101: Raising A Micropreemie Who Uses A Feeding Tube With Guest Gaby Grinberg

In this episode, guest Gaby Grinberg discusses prematurity, NICU stays, and feeding journeys.  Her daughter Lana Rose was born at 24 weeks gestation, weight 11 ounces. There was no initial sign that she would go into labor early, as her pregnancy was pretty normal. At the 20 week ultrasound, it was found that she had intrauterine growth restriction and reduced amniotic fluid. They completed numerous tests and exams to figure out what to do next. Starting at week 22, she started to feel unusual, with stomach pain, headaches, swelling, nausea, and shoulder pain, and was told that everything was ok. She was twice not diagnosed with preeclampsia and HELLP, even though that was what was occurring. She had been counseled to take Tylenol if she experienced pain, which she did. However, the Tylenol caused problems for HELLP, since she had been misdiagnosed. She began to get very bad chest tightness, and went right to the hospital, where she was immediately admitted. She remained in the hospital for a week before she was rushed for an emergency C-section. Lana Rose was immediately taken to the NICU and intubated. Complications included breathing difficulties, difficulty keeping her weight up, and a very small brain bleed. Lana Rose stayed in the NICU for 6 months before being discharged to home. She was discharged with a G-tube and on continuous oxygen. They were medically quarantined for several months afterward. After the C-section, Gaby was let go from her job. Therefore, they lost their health insurance and had to switch plans, and her husband had to work really long hours. They had to just keep pushing through. Coping was hard. Gaby ran out of breast milk, was not able to breast feed, and was not allowed to bottle feed Lana Rose. Lana Rose had horrible reflux, with food being pushed out of her tubing at every feeding, made worse by undiagnosed lactose intolerance. This led Gaby to finding breast milk for her daughter, as Lana Rose was losing weight and was being labeled as failure to thrive. She was also having horrible rashes and diarrhea from the formula. Due to oral trauma through intubation, Lana Rose refused to eat foods orally. They tried OT and PT and feeding therapy, but Lana Rose still refused. They changed the formula, but Lana Rose was still not gaining weight, since she was not getting food or nutrition in. After age 1, Lana Rose started using a blended diet in her g-tube, which helped her get better nutrition. Gaby experienced horrible postpartum depressed, PTSD, suicidality, and significant overeating. Talking with her husband helped reduced her suicidality. Gaby had to mourn the loss of her pregnancy, having a child with special needs, losing her job. Lana Rose currently has compromised lungs and gut issues, but is otherwise doing well.

 

ProofPoint Marketing

LinkedIn

Ronald McDonald House

March of Dimes

Minnesota Neonatal Foundation

Preeclampsia Foundation

PreFeeding Skills Book

 

 

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Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music:

Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)

Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)

Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)

 

Hosted by: Jessica Temple and Lewis Temple

 

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple

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