Dear ones,
Just when we thought things were calming down, Eliza decided she wanted to keep things interesting and threw everyone for another loop.
Even after all the changes made last night, Eliza continued projectile vomiting and appeared to be in great discomfort. This afternoon, an abdominal x-ray showed that she had a condition called malrotation of the bowel; basically, when her intestines first formed at only a few weeks gestation, they twisted in a way they shouldn't have. This created a blockage, which, if not corrected, would be fatal. So Eliza underwent surgery this afternoon to correct that problem.
Since she was under anesthesia and back on the ventilator anyhow, the doctors decided to go ahead and do the muscle biopsy that we had postponed weeks ago (checking for mitochondrial disorders that could cause seizures) as well as insert a gastrostomy tube. This is a feeding tube that goes directly into Eliza's stomach; she has a small plastic cap on her belly into which milk can be pumped directly. This will eliminate the need for a feeding tube through her nose and should greatly simplify feedings once she gets home.
As of 8:30pm, Eliza was still completely sedated and her muscles completely paralyzed. She will hopefully begin to wake up in the next several hours; as long as she is not uncomfortable, the doctors will only give her minimal amounts of morphine and will try not to sedate her too much, so that she can once again begin the battle to get off the ventilator. The sooner she's off, the better, seems to be the opinion. It sounds like it will be a balancing act between just enough medication to keep her comfortable but not too much which would keep her sedated.
Until her intestines recover from the surgery and start working again (probably five to seven days, we're told), Eliza will receive only intravenous fluids and no feedings. Once her intestines start working, she will begin slowly receiving breastmilk, now through the g-tube in her stomach. Realistically, then, Eliza's homecoming has been significantly delayed; the timing all depends on how quickly she gets off the ventilator and how well she eventually tolerates feedings. The neonatologist said today that she hopes she'll be home within a month.
What a day. As Sam has been singing to Eliza,
"Leaning, leaning, safe and secure from all alarms;
leaning, leaning, leaning on the everlasting arms.
Oh, what fellowship, oh, what joy divine; leaning on
the everlasting arms."
Love,
Daniele, Sam, Luke, and Eliza
