That's what they call it. It's Fidelity's symptom, aka "Floppy baby," aka "low muscle tone"

The good thing is that her condition is stable. Her vitals are strong and consistent. There has been no rushing around, no adrenaline highs, no need for resuscitation. Things are calm and consistent. 

The reverse side of that, is that we are possibly looking at a condition that is long-term or life-long. It is common for premature babies to have low muscle tone, but Fidelity was far from premature. We are looking in 3 categories: Neurological, Genetic, or Metabolic. If we can find the reason that she is "floppy" then we can begin to address the symptoms more systematically. 

Until then, we are providing general care and monitoring her vitals. IV fluids and milk through her NG tube. Her care is pretty easy since her vitals are stable and she sleeps a lot. 

The first day was a whirlwind of meeting all the nurses, doctors,  therapists, consultants, and all their assitants, students, etc. Well more than 20 different people came through our room. They explained that we're looking systematically, by starting with the most common things that could cause her symptoms. 

The neurologist ruled out oxygen depravation due to trama at birth. There were no signs of that on her brain MRI. 
The genetics team ruled out down's syndrome and other genetic disorders that present with certain physical features by taking a tape measure to her body. They ordered a lab that checks for 70 other common genetic disorders.

Here is what they have observed so far. 

  • She is stable. Her heart is good. She has shallow breathing so sometimes uses oxygen to encourage better breathing, but no one thinks this is because of her lungs. 
  • All the bloodwork and blood cultures show no sign of infection. 
  • Her symmetry is good. If there was brain damage, it will often present in one side of the body. Her body looks and reacts the same in all areas. 
  • She can do "all the things," but is weak and tuckers out quickly. She can suck a pacifier and drink from a bottle. She has deep tissue reflexes. She grabs your finger, tracks with her eyes, startles, cries, etc. 
  • Her MRI shows evidence of 2 small bleeds, 4-7 days old, both on the peripheral edge of the brain. All the doctors agree that these are present. All the doctors kind of say that babies are resilent and they expect no long-term effects from this. All doctors believe that these bleeds were caused by clots that had traveled from the placenta and that they were not initiated by Fidelity. This means there should be low risk of repeat occurences. 
  • Some doctors think this could be the cause of hypotonia and others say that the low muscle tone would not present so evenly throughout the body if it were caused by this. Those doctors want to keep looking for answers. They agree that it could be something in the nervous system, but maybe further down the line, like where the muscles accept the message from the nerves.  
  • The genetic team keeps mentioning her small chin. This is a sign that they think something could be genetically off. I have told them that small chins do run in my family, but they only have my face to compare. I am not sure what a small chin could be a sign of. 
  • A lot of doctors have shrugged off the "metabolic" category. After observing her they don't think that is it. 

Our next steps: 

  • Stay here and continue to care for Fidelity. Encourage her to drink from a bottle and use her muscles. 
  • Wait 1-3 weeks for our genetic tests to come back 
  • Continue to observe Fidelity for changes and improvements
  •  They think we will be here 1-2 weeks until Fidelity no longer needs her NG tube for feeding. 
  • They said to be prepared to go home without answers. We will learn more as she ages and changes.