Dec 25 – Parents (and Anya) Home

I’m doing this update based on a conversation with Max instead of copying from his written out updates to give him a chance to rest and just be with Becky at home (I‘m hoping he’s asleep, to be honest). Please bear with me for this being a little less detailed than the other updates. – Dan

UPDATED: Now updated with Max’s details -Dan

• Overall
  • Becky and Max are home with Anya and resting as of about 3pm. 
  • Max and Anya had a lovely walk around the neighborhood and they’re all glad to be reunited again. Becky and Max might need some of us to help out with walks while they’re in Boston – Her normal walk times are around 7-8 am for a walk around the neighborhood, and two quick backyard potty breaks around mid afternoon and around 9-10. Dan will be asking for volunteers for that soon.
  • Becky and Max were super appreciative of all the text messages today, the groceries in the house and all the presents under the tree from their family.
  • Becky was set up comfortably on the couch to resume her strenuous care schedule
  • Max baked cinnamon rolls, following up on the promise he made to Becky that she would have them for her birthday.
  • Max and Becky enjoyed dinner provided by family who went grocery shopping on their behalf
  • Amanda and Dan came by for a few hours to help put things away and take care of some housekeeping.
  • Max and Anya had an extensive walk. The first of many.
  • Becky and Dan set up a medication chart to help track the detailed med schedule
    • Max set up a medication reminder app on his phone
• Respiratory
  • Shortly after Becky was snuggling with Olivia last night she was returned to the more intense Oscillating Ventilator as they continue to get her lungs where the doctors want to see them, so they weren’t able to hold her again before they went home. This is not the progress they were hoping for, but it’s also not unexpected for what the doctors see in others.
  • As of their visit, she was on 25% supplemental oxygen
  • Chest X-Ray showed some improvement from previous imaging while on the previous ventilator
• Olivia’s care times have been updated to every 3 hours
  • This is great from a care perspective, but will be tough on her as she prefers being calm and unbothered
• Digestive
  • Olivia’s feeding amounts were pulled back by ~30%
    • This is a common adjustment when she shows signs of GI distress
    • She is still receiving essential nutrients through IV
  • Blood sugar readings were 64 and 83
    • Trying to stay between the range of 50-150
• Other
  • Bilirubin levels continue to decline, and the nurses may remove a light therapy bank
    • This is a positive development!
• The Next Steps
  • This is the section that is making Becky and Max nervous, but they want to stress that this is normal, and is something that has to happen to every baby in the NICU at this stage in the development.
  • From birth through the present, Olivia has been receiving all of her medicine through her umbilical cord. Well that is only viable for about a week after birth and then they can’t use it anymore so they will be inserting a PICC Line either through her arm or her leg that will lead directly to her heart.
  • This is a procedure, so it’s scary, but it’s a completely normal procedure and Olivia is “average” size for the babies they do this procedure on all the time.
    • Max will receive a call before the procedure begins, and when it is completed
    • Estimated time will be 15min-1hr
    • If BI cannot complete the procedure, Olivia will be transferred to Children’s hospital, who have a 100% success rate with this procedure
      • Olivia will be transferred back upon completion
• Becky’s Blood Pressure
  • Was still on the higher side, but not in the dangerous zone. 
  • We created a medicine schedule chart so she can track her meds easier.