Shake It Benjamin!

(video)

Don’t tell Benjamin

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!

Did someone say something about CPAP?

Mixed Bag

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!

This is what 7lbs looks like

Pretty cute, right?

There will be a real update later, but here are some cute pictures to tide you over.

duck butt!

more milk please! Faster!

Sitting in the boppy

Woah! I could get used to this…

Look ma, no tape!

Want my wubba!

Why do we help a micropreemie?

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.

Still Hoping

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.

Seven pounds and growing/Calling St Lucy

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 .

Happy 5 Months!

(actual)

On strength, briefly

I found myself reading a blog from a mother of twin preemies, a boy and a girl, almost two. The daughter who was ventilator bound, very suddenly passed last month. It is heartbreakingly sad to read her story, but I was so amazed by the strength of the mom.

The reason I bring her up is that there was something she included in her last post that has really stuck with me:

There’s a man who does the Ironman triathlon out in Hawaii every year with his disabled son in tow. A son who he pulls swimming, biking and of course running. Their name is “Team Hoyt” if you’d like to look them up. Year after year I’ve watched him and heard his story. The questions were always the same. “Wouldn’t it be easier to do this enormous physical task without pulling your son?”His answer was always the same. “I couldn’t do this without my son”.

 

 

All out of “fungus” puns

(Looking for actual fungus puns?)

Well, it’s official – the fungal infection is back. One of Benjamin’s urine cultures came back positive with the same kind of fungus we thought was beaten last time. It seems it was hiding deep down and what they saw on the x-ray (Osteomyelitis) is a result of the infection. The doctors were already convinced that this is what was happening. In fact, they were so sure, they would have gone forward with treating for the fungus even if they didn’t see the positive culture. So the doctors weren’t happy to see the culture, but they were happy to see their theory was correct and that they know for sure what they are fighting.

The treatment is likely 6-12 weeks of the anti-fungal intravenously once a day. This doesn’t mean Ben will need to be in the NICU for another 3 month necessarily. We are seeing about getting a Broviac catheter for Ben that will allow him to be able to get an IV at home.

But first we still need to finish weaning off the CPAP and get all feeds by bottle. Benjamin has been making some pretty good progress on the bottle and is getting about half his feeds that way now. And he is up to 6 lbs, 6 oz! CPAP is slower progress, but progress is being made.

Still no date on the second eye surgery, but it may be this week.

Also – Happy 1 month (corrected) little buddy!

And thanks for all the support on the last post. We didn’t really let the comment that sparked it bother us much, but it was good for us to get the things we have been feeling down on “paper” and even better to receive such positive messages in response.

Big yawn! Fungus infections are boooring.

Choices

Yesterday we removed a comment from a stranger from near Clarksville, Tennessee that was hurtful and a bit crazy. This person suggested that Benjamin isn’t progressing, that he will likely be disabled and asked “when is enough enough?”. Ignoring the fact that this person is suggesting that we murder our child, and ignoring the fact that Benjamin has made so much progress and what we are looking at here is a minor setback, and finally ignoring the fact that this person obviously wanted to hurt us – it brings up good questions, ones that Amy and I ask ourselves a lot. Are we being selfish? Should the pregnancy have been terminated when Carol’s water broke at 19 weeks? Is it fair to Benjamin to fight for his survival?

When his water broke and the question came up of whether we would consider termination – the three of us quickly agreed that as long as there was room for a miracle, we would aim for miracle. We knew the risks – the doctor explained that even if the pregnancy reached 23 weeks, the baby would probably not survive and if he did he would have a high chance of disabilities. At that point we were focused on reaching that 23 week mark. But even before this, even before we were pregnant, the three of us agreed (in writing, notarized no less) that we would not terminate unless there was a deformity “incompatible with life”.

Did we feel this way because we wanted a child “no matter what”? Is it selfish to want to share your love with a child or an adult no matter how different their quality of life is? Or would it have been more selfish to say “No – we cannot take the risk that our baby will have disabilities.” Yes, part of the factor for our decision was that this would likely be our only chance to have a baby of our own. In order to reach this one pregnancy, we had to use 5 of our 7 embryos  we froze before Amy’s cancer treatment and we could not make any more. Maybe we really didn’t understand the risks involved. But I can guarantee if we had decided not to go forward with the  pregnancy the three of us would be dealing with a  guilt of a different kind.

So what did we do? We fought. We did everything we could to give him the best chance possible. Carol was amazing – she was on bed rest most of the pregnancy, she suffered through a million tests, she spent weeks in the hospital away from her children and husband. Her family was wonderful and supportive every step of the way. And as she says – if the doctors told her it would help Ben, she would do it without any explanation needed and no matter the effects to her. In the end, Carol even risked her own life in order to give Benjamin a few extra days to grow before she was rushed to an emergency c-section that we know was tougher on her than she even let on.

But now here we are – Benjamin thankfully did survive.   And we love him more than we’ve ever loved anything. Yes – he will likely have one or more disabilities when all is said and done. Will he have the life we would choose for him if we could? Not likely – but do you know what? No one gets the life they expect. Life is hard no matter who you are. Amy and I have been through a lot together and it has only made us love each other more and appreciate life more.

Even through all of what Benjamin has been through already, I have seen him smile in my arms like a kid who’s won the lottery; I’ve seen him melt in Amy’s arms like all his troubles have disappeared; and I’ve seen the excitement on his face when he gets his bottle. This kid is going to be fine – in fact, this kid is going to be great!

How can I be sure of this? Our lives are now focused on it: Making Benjamin’s life the fullest, loving him with all our might and surrounding him with people who love him. I know this isn’t any different from what any parent does and that is what makes it wonderful. And it also, despite any challenges he may face, makes him a lucky kid.

Benjamin will lead a full life. He will have challenges, no doubt, but like it says on the top of the page – he’s one tough kid. So yeah, we wonder if we made the right choices, but we don’t wonder for very long.