Day 3: June 29, 2012
Today we celebrated three days of life, and 48 hours of critical stability! Lily's blood oxygen levels are still hard to keep up without added oxygen at 45%, but it might be because the Doctors discovered that her PDA is open.
When I arrived at the NICU this morning, they were performing an echocardiogram- heart ultrasound. The scan showed that Lily's PDA (patent ductis arteriosis) is 'open moderate'. The PDA is a very small vein between the aorta and pulmonary artery. The aorta carries oxygenated blood, and the pulmonary artery carries deoxygenated blood to the lungs (for oxygenation, when they are working).
The PDA is typically only open during early gestation. Sara was doing all the oxygenating for her, so Lily's was open and allowing blood between the pulmonary artery and aorta to mix. Not a big deal inside the womb.
The problem with mixing aortal and pulmonary artery blood is that deoxygenated and oxygenated blood mix. The severity of the problem depends on they direction of bloodflow: i) if the deoxygenated blood is flowing from the pulmonary artery into the aorta, it will taint the oxygenated blood and make it hard to raise blood oxygen levels., or ii) If the oxygenated blood is flowing from the aorta into the pulmonary artery, the downward effect on blood oxygen levels is less severe, but it makes it hard to stabilize blood o2 levels without extra tank oxygen.
So, even though Lily's PDA is open, her issue is the less severe one- and surgery is not required to fix it! Doctor Gio will be closing the PDA with a form of ibuprofen called endomethazine. It causes blood vessels to constrict ever so slightly, but enough to close off the PDA for good (hopefully). It is a three day regimen, once daily by IV.
The downside of the endomethazine treatment is that lily has to wait a few more days to get breast milk. The constriction of blood vessels might affect kidney operation a bit, temporarily. If she's just on the electrolyte IV (which looks like gatorade) then the kidneys are less critical than if lily is eating breastmilk by the IV in her umbilical cord. It's risks/benefits, the doctors remind us. Her blood oxygen level is the most important thing right one, and they often see blood oxygen retention improvement in preemies once their PDA is closed. Did I just write improvement? That is such a far off concept right now. The doctors continually remind us we are still in the "critical stage". Could last another few weeks. Could last another month or so. Every baby is different, they say. I'm glad to finally have found a doctor who "doesn't practice by numbers."
The docs said the endomethazine's efficacy is very high during the first week of life, so we are hopeful that Lily's next echocardiogram on Monday will show a closed PDA.
Otherwise, positives:
No signs of brain bleeding, although there is the unexplained drop in hemocrits (red blood cell density). We are praying the drop in crits isn't indicative of a brain bleed. The doctor ordered another cranial scan for tomorrow, to see if there has been any bleeding.
Lily lost only 20g last night, as compared to 50 the first night. Docs expect preemies to lose 10-15% of their body weight, i think Lily is at about 8-9%. Losing less than docs would normally expect. Still scary, though, to see a 1 pound 12 ounce baby lose weight. Very difficult to see that happen.
Looked into my girls eyes again. Amazing.
Vitals are still stable (critical.) ! Docs are comfortable enough with Lily's blood pressure to start taking it every four hours instead of every hour. Baby steps- little victories.
Sara is holding up, she's coming home tomorrow which is great. She is still in a lot of pain, but she is such a strong woman - she's pushing through it. I think the shock is beginning the wear off for both of us, and the harsh nightmare of a reality setting in. Best case scenario, our baby is in the NICU for three to four months.
So, the NICU docs said its been boring. They like it "boring". Boring is good, they say.
I like boring too.
Thank you everyone for all the support and prayers. They continue working!
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