Emily is now six weeks and two days old. Her weight on Monday was 810 grams, but today she weighed in at only 800 grams. However, since she has had three big diapers in the past 24 hours, each over 20 grams, we figure that she actually gained ‘real’ weight. The infections in her eye and lungs appear to be clearing up. No more weeping from her right eye, and nothing growing in the latest culture of lung secretions.
On Monday Emily had her first eye exam. The doctor came to the stunning conclusion that her eyes were premature. (Jennifer and I are wondering how much the insurance company is being charged for this earth-shattering piece of news.) Although the doctor did seem to think that Emily was a boy. (One would think that identifying the difference between males and females would have been covered at some point in medical school.)
Yesterday was quite interesting. She started having O2 saturations of 100%, so the nurse had to keep weaning down her oxygen supply. She finally ended up at 23% oxygen with 100% O2 levels in her blood, according to the pulse ox sensor. Then she turned blue and threw up. She went back to breathing 100% oxygen before being weaned down over the past 24 hours to between 50 and 60%.
Today we had a meeting with Jennifer’s high-risk OB and got the results of the pathology reports for the babies’ placentas. It turns out that the infection didn’t appear to be caused by Christopher’s ruptured membrane. Rather, there was a serious, acute infection which worked its way from the outside in instead of one baby to another. All three placentas and all three umbilical cords showed signs of bacterial infection, so the doctors assume that all three babies were infected at the time of birth. So, the decision to deliver our children at 24 weeks turned out to be the best course of action for them, giving them the best chance of survival. If they had remained in any longer, or they had attempted to deliver just Christopher (an option the doctors were discussing), then we very likely would have lost all three of our children to the infection. It brought a great deal of comfort to Jennifer when her doctor told her that there was nothing that she could have done. He also believes that this incident was isolated to this pregnancy and that there would be no greater risks associated with future pregnancies.
Our meeting with Emily’s neonatologist today went less well. The doctor pretty much told us that Emily would be on the ventilator for at least two more months and that she wouldn’t be coming home this year. He also said that she would probably need oxygen when she came home, perhaps a ventilaor, and that she was at a high risk for cerebral palsy. He said that she would have chronic lung disease and that there was a chance that her lungs would get worse and be ‘incompatible with life’. After this, he showed us x-rays of Emily’s lungs which looked about as bad as we expected (all white, indicating massive scar tissue). The meeting ended with Jennifer in tears. I reminded Jennifer that in this doctor’s professional medical opinion, she should have died six weeks and two days ago . . . and 33 days ago. And that she would take weeks and weeks of gradual weaning to get off of the jet ventilator. (One wonders if he ever gets tired of being wrong.) The good news is that there is no sign of cerebral hemorrhage or white tissue damage in her brain. Emily tolerates her feeds well; she’s taking 10 mls of fortified milk every two hours, and they plan to increase it to 11 mls tomorrow. Her gut works extremely well – I didn’t know that a 1 lb, 12 oz. baby would make so much laundry! We usually have to do one load for her every night. Her kidneys are working just fine; even though she has difficulty getting rid of CO2, she is able to maintain a stable pH.
Jennifer has decided to cut back on Emily’s kangaroo care to about once a week. We want her to use all of those calories to grow new lung tissue so that she can get off of her ventilator and come home before Christmas.
Emily also got her first piece of mail today from the insurance company. It seems that she has been assigned a case manager, and she has been asked by her case manager to sign and return the enclosed form. Now, a case manager is theoretically supposed to be well-informed as to the patient’s medical condition (say, being born six weeks and two days ago at twenty-four weeks’ gestation), and is supposed to act as a contact between the insurance company, the doctors’ office, and the patient. Jennifer and I have both spoken with her and are pretty sure that we made it clear that Emily is a premature infant, so one may presume that ‘signing and returning’ might be a little advanced for her (especially if she is a preemie with CP!). Jennifer plans on taking the form in with her tomorrow and asking the nurse if she can get Emily’s signature when she goes in to do her care. 😉 (Yes, we know that the company expects us as her parents to sign on her behalf – but you do have to admit; it is rather amusing for a preemie to be receiving mail addressed to her at all, particularly from an insurance company. Welcome to your first piece of bureaucracy Emily!)