Another Delay

 Hi Friends,

Just a quick update on Lily. We just found out today that while they've been saying she would need three of the EGD's (where they dilate the stricture in her esophagus), what they meant was that she needed three after the initial one. So once again, we thought we had a discharge date, and now it's a week later. That puts her discharge sometime around September 18th. New best-case scenario, she's coming home after eight months in the hospital. 😔

Other than that, her heart rate is still higher than they would like it to be. Her prior normal was around 130 and for the last week or so, it's been fluctuating more around the 170 range. They put her back on the Clonadine and have been slowly weaning off that again. However, being back on it hasn't really had any effect on her heart rate. They're going to consult with cardiology and see where we go from here.

Here's a cliff notes version of Lily's life so far:

January 20th - Cora and Lily were born
January 24th - Lily has her g-tube placed, starting out at 1ml feeds 
January 27th - Lily's heart surgery to band her PDA is scheduled for Friday the 31st
January 30th - Lily's heart surgery is postponed because she spiked a fever
February 1st - Lily's feeding tube came out and needed "emergency" surgery to replace it
February 3rd - Lily has her heart surgery to band her PDA

February 11th - Cora goes home

February 28th - Lily has her first esophagus gap study, measured at 4cm

March 11th - The last time Rose was able to see Lily due to Covid visitor restrictions

April 10th - Lily has her second gap study, measured at 3.5cm

May 12th - Lily has her third gap study, measured at 4.5cm

May 22nd - Lily has open-heart surgery to repair her VSD

July 12th - We drive out to Boston, thinking we'd be there for around three weeks then take Lily home

July 14th - Lily flies out to Boston, initial surgery scheduled for June 16th

July 16th - Lily has her Foker I surgery and her gap is measured at 6cm

July 18th - Lily's gap is measured at 2cm, and she has her first traction procedure to stretch her esophagus

July 24th - We find out Lily has a blood clot in the right side of her neck/chest area

July 28th - Lily has her Foker II surgery, connecting the two ends of her esophagus. We are told Lily would need to be there for around a month after the surgery for recovery.

August 4th - Lily has her first attempted extubation which did not go well and they intubated her again

August 6th - Lily has her second attempted extubation which is successful, but she's put on a CPAP

August 11th - Lily has her first esophagram and were told there was no leak or major narrowing of the esophagus evident

August 13th - Lily is off the CPAP

August 19th - We thought we'd be able to take Lily home by August 28th

August 21st - We thought we'd be able to take Lily home by September 4th

August 26th - Lily has her EGD and they found her esophagus diameter to be around 3.5mm, instead of the 10mm or so that it should be. We found out the dilations have to be done at BCH so with three dilation procedures required, we think we'll be able to take her home by September 11th.

September 1st - We found out the first EGD doesn't count as one of the three, so we might be able to take Lily home by September 18th. Almost ten weeks, which is just a few more than our initially planned three.