Benjamin update time! For those of you keeping track – it’s day 171. Mr Ben is making progress on his CPAP weaning, but I’m not going to say how much progress, because as we have learned in the past Benjamin actually reads this blog. We wouldn’t want to put too much pressure on the boy and jinx it like the last couple of times.
He is also now off the antibiotics for those infections from last week and looks like he’s clear. And still another few weeks on the IV anti-fungal.
The feedings are getting easier and Amy can routinely get Benjamin to take a full bottle. It has been a lot easier since they started adding rice cereal to the milk.
And lastly Benjamin is just a half an ounce away from being 8 pounds. Way to chunk up buddy!
It’s a mixed bag as usual in the NICU on the news front.
Benjamin’s eye surgeon came by last week and seemed hopeful about Ben’s eyes. He said it seemed like they were re-attaching. This is very uplifting to hear. While it doesn’t yet mean that the operation was a success, at least it does mean his eyes have begun to do what they are supposed to do. Let’s hope that continues.
Also, Benjamin is up to 7 pounds 8 ounces. Not bad!
After consulting with an expert in antifungals the doctors at CHONY have changed their plans for treating Ben. They have doubled the dose of the micafungin and added a second one (fluconizal). They think this will be better and faster – needing only 4-6 weeks rather than 12. He will probably go home on oral fluconizal and will stay on it for months (but at least they are months at home)
On the less positive side, Ben spiked a fever the other day so the doctors ran a full sepsis work up on him and found two different infections (neither of them that pesky fungus). The first one was a positive blood culture from him picc line that everyone thinks is probably a contaminant in the test. The second is a bacterial infection that grew in a urine culture. They are treating him with two additional antibiotics for the next week. Hopefully they can clear it up fast.
Also, though a day late, I want to wish Amy a happy fifth anniversary!
Pretty cute, right?
There will be a real update later, but here are some cute pictures to tide you over.
I had found this abstract of a medical publication when we were doing general research on micropreemies early on. Most of these types of things are really dry and scientific, and by just reading the title “Why do we help a micropreemie to live?” I was sure it was going to be unsettling. To my amazement, it was incredibly moving. I tried looking for it while writing the “Choices” post, to show a doctor’s point of view, but wasn’t able to find it. When I stumbled upon it again tonight I thought I would share.
Helping a “micropreemie” to live by aggressive interventions may sometimes seem unnatural. However, utilitarian assessment of benefits derived from lifesaving efforts for a micropreemie is considered inappropriate. The goal in treating premature infants has advanced from fetal salvage to achieving “intact survival”, which represents a new therapeutic target. In this way, the record for lifesaving in extremely low-birthweight infants is continually being broken. Why do we help a micropreemie to live? Moral and ethical emotions are the underlying reasons for the aggressive care devoted to premature infants, including micropreemies. Such human feelings might even be considered the purpose of life. Human emotion is the impetus for aggressive efforts to improve the survival prospects of premature infants. The beautiful and delicate nature of a newborn is compelling. The high-order emotion of empathy for another’s misfortune is also important. Most human emotions are related to an awareness of death, and micropreemies are near death. In Oriental thought, a human being is a growing product of nature. Forces of nature and changes in a living being follow nature’s rules. First and foremost, an individual life is part of the long chain of existence beginning before the self and continuing beyond it. An immature human being, even a newborn, is simultaneously a complete entity and part of nature’s long chain of being, which has a wholeness of its own that affirms a micropreemie’s right to life. A fetus is a member of human society in the sense that there is an overall reverence for life as a quality that lives on. CONCLUSION: The limit that bioethics must not exceed is the sanctity of life. We believe that the birth of a micropreemie is an important and serious event. We profoundly wish that a micropreemie might live and thrive, because we on earth must live with the continual presence and imminence of death.
-Takahashi S, Endo A, Minato M., Department of Pediatrics, Nihon University, Nerima Hikarigaoka Hospital, Tokyo, Japan.
Benjamin’s vitrectomy surgery went smoothly today and he is recovering nicely. However, the surgeon didn’t really like what he saw when he was in there. There was a lot more scarring and bleeding that formed since the last surgery, which was the reason the retinas did not unfold. In his own words “there is a lot of disease” and his eyes are “in bad shape”. Not exactly what you want to hear.
He was able to remove the scarring but when he tried to flatten the retinas with a gas bubble like last time, the retinas were too stiff and wouldn’t unfold. Instead this time he filled Ben’s eyes with a viscous liquid that put enough pressure on the retinas that they flattened against the back of the eye. The problem is the liquid only lasts for a few days and there s the risk the retinas will go back to being unfolded after the pressure is gone. If this happens, the surgeon does not know if there is anything further he can do.
It is also worth noting that even if this does work, the best Benjamin will be able to see is very limited. The surgeon described it as “ambulatory” – meaning he can get around a room by himself. But even this is something worth hoping for.
We won’t know if it worked for weeks – so keep that hope coming.
Not a lot of progress has been made recently on CPAP and feeding, but poor Benjamin had a rough few days. Because he needs his new anti-fungal drug (micafungin) once a day by IV, they did not want to keep sticking him with new IVs all the time. Instead they wanted to install a picc line – a more permanent IV that is snaked up the vein towards the heart until it is “central”. Now Ben has had these before, so we weren’t fazed by the idea – but the problem was they kept trying and failing to get it in. I guess his veins have gotten “squiggly” and made it impossible to get the line up them. Three times they tried over four days. Each time they had to sedate him a bit and he still was very unhappy and wore himself out. The third time they got it in, but unfortunately the only vein they got to work was in his head – so it looks a little scary. A small price to pay to hopefully kill off this bug once and for all. The word on the street is that he will be on this drug for months!
Anyhow, with all of this going on, poor Ben has been tuckered and not really able to wean as much on the CPAP or get as many bottle feedings in as we would like. And now just as we are getting back on track we got word that the eye surgery has been scheduled for tomorrow.
We’re a bit nervous about the surgery. This is the second time for this surgery and if it doesn’t work, it is unlikely that Benjamin will be able to see at all. I don’t want to get too far along that train of thought, so we’ll just hope that this time it sticks.
If anyone has an “in” with St Lucy, now is the time to call it in. (It turns out she is from Sicily and Ben being 1/8th Sicilian, I think a deal can be made)
We will post an update tomorrow to let you know if the surgery went smoothly, though we will not know for weeks if it worked .