Day 4: Progress

 1/3/21 - Sunday

Morning - Dopamine drip on lower dose to stimulate kidney to help release urine. 

FIO2 - oxygen concentration giving James was down to 35 and is now back up to 80. 

Still some trouble ridding of the waste of carbon dioxide. 

Blood pressure looks great: 42 today vs 25 yesterday 

PDA - heart vessel might need to get closed - will check today 

Results from BMP:

Electrolytes are okay.  

Markers for kidney function is worsening. 

Increased to 2 ML every 3 hours. No bowel movement yet. 

Weekly measurements on Monday:  we are looking for 0.5-1 cm growth weekly in head circumference and length

Focus now: lungs and kidneys functioning properly. 

AFP (alphafetoprotein) level from amniotic fluid was over 10, but the level would be much higher for Finnish nephrotic syndrome (FNS) diagnosis from MFM, so might not be it. 

Kidney ultrasound was normal

Brain ultrasound had no bleeding. Will check next week again. 

Adding Fentanyl hourly to help sustain comfort level

Lindsay has been exhausted so I was able to support her and doctor to agree to let her sleep before discharge. 

We moved her to a corner room that’s quieter. 

They gave her Valium to put her out for a 6 hour stretch and then we will pump and dump when she wakes up. 

“Fatigue makes cowards of us all.” - then we will see if she’s ready to transition out. 

If so, I have us booked at the Embassy Suites not too far from here so she doesn’t need to walk up steps at our townhome today.  

Then we will attempt the steps tomorrow after a cozy night sleep. 

Nighttime update - FIO2 was at 57%. James loves to move his arms and legs, however, this uses up some of the oxygen. He is urinating. No bowel movement yet. Eyes look fused shut, which is fine during the developmental phase. CO2 ventilation is improving to release the waste.  30 ML in diaper tonight vs 2 last night. Lots of waste is great. After feeding and 9p adjustments, James went to 85% and then back to 51% FIO2 rapidly. Which is great. 

Lindsay is moving much better and walked to the NICU without the wheelchair. She’s been through the ringer these past few days and weeks. The more I observe her, the more I’m inspired to be even better as a husband and father.