Tough but delicate

Benjamin has been through a lot and has come so far. And hopefully he will be home very soon. But as much as we will try to put the months at the hospital behind us, it is going to take a lot of luck and care to keep him from going back. While he is much healthier than he was, we need to be very vigilant with keeping him healthy. Because of his lung disease from prematurity and being on the ventilator so long, a simple cold, the flu or RSV can land him in the hospital and put his life at risk.

So with that said, we want to apologize in advance for seeming crazy and overprotective for a while. Because we will seem crazy and overprotective. Besides being first-time parents of a preemie, we have seen more doctors than we ever want Ben to see. Even worse – cold season is coming up fast. He has not come this far to be taken down by germs.

So for a while:

  • Benjamin will need to avoid indoor crowds.
  • We are going to be hand-washing hawks – washing your hands is the best way to avoid spreading disease.
  • Hand sanitizer will be everywhere.
  • We will be those parents with a sign on the stroller asking strangers not to touch the baby.
  • We are going out to get flu shots tomorrow and we ask anyone who plans to spend a lot of time with us to get flu shots too. (This is mandatory for grandparents <that means you Pop>). (Though, flu shots are smart for everyone and you can get them everywhere – the sooner you get it in the season, the better.)
  • Anyone with a sniffle, cough or ache will be be asked to stay away.
  • No smoking. Smoking increases the risk of RSV and other respiratory illness in preemies.
Also, for good measure, go see Contagion – that should freak you about germs a little too.

Batten down the baby

In case anyone is wondering, Benjamin is safely out of the evacuation zones and at a pretty high elevation (for Manhattan). He should weather the storm well up there.

Amy and I are also in a “safe” zone and have lots of candy and beer to make it through the weekend.

Stay safe everyone!

200 days later…

It’s been a busy week for Mr Benjamin. He decided he didn’t want to eat anymore (we’ve convinced him otherwise). He got a slew of tests – hearing test (passed!), a voiding cystourethrogram or VCUG (no vesicoureteral reflux – which means they can discontinue his amoxicillin!), a bone scan (bones are looking good!), urine culture (all clear!), and a renal ultrasound (ok, on this one they might see something, but they aren’t sure what).

That’s right – they did the hearing test already… “But wait, I thought they waited on the hearing test until right before he goes h-” Don’t say it! Ben is so close and the test are all part of the last things they have to do at the hospital before… well, you know.

All this is just in time – Benjamin is over 10 pounds now(!) and today is day 200 of being in the NICU. We’re hoping that he won’t have to stay much longer at the hospital after his IV anti-fungal drug is finished on the 31st. They may need to watch him for a few days after they switch to an oral drug. And, of course, anything can happen between now and then…

To celebrate, Benjamin would like to show you how much he loves his toys.

Genetics

Joe and I got our mothers to scrounge up some old photos of us as babies. On the left is me at 3 months old, and on the right is Joe at 3 months old. It’s pretty easy to see that Benjamin gets some of his good looks from both of us, but the cheeks are all Joe!

Family Resemblance

Disappointing Eye Update

The eye surgeon came back to check in on Benjamin’s progress this week and the news was not good. The steps forward made from his last exam seem to have evaporated, at least in his left eye. The retina in that eye is closing up again. If it closes completely he will have no vision in that eye. There is a chance it could soften up and reopen, but it is slim.

The right eye had blood in it again. This kept the doctor from seeing the retina at all, so we are not sure what the situation is there. It could be still reattaching, or it could have started closing up too. But the bleeding itself is not a good sign. It could mean more scarring, which would lead to detachment.

The surgeon doesn’t think there is anything else he can do at this point if there is no more progress. Another surgery could be an option – but not for a year or two.

In spite of the bad news, we are not going to let it bring us down. Ben is going to be Ben. And Ben is going to be made up of a million facets and being upset about any part of what that means isn’t fair to him or us.

(That said, we also wouldn’t complain if some miracle happened and his eyes were repaired)

Hernia Surgery – Achievement Unlocked

Benjamin went down to the operating room yesterday, hopefully for the last time, to repair his inguinal hernia. I am beginning to think that surgeons have no imagination, because every time we speak to them after an operation they always say “It was worse/bigger/more complicated than we thought” This again was the case as they had to fix both sides and of course it was all bigger than they thought. That said, they were able to fix everything and patch him up.

Because it was an involved operation, they ended up giving him general anesthesia and putting him back on the ventilator for the surgery. By a few hours after returning to his pod (a different pod than the other day – they moved us again) he was awake, extubated, and breathing on his own. He has a couple of small incisions but hopefully not much worse for wear.

He was not happy though – he was grumpy he hadn’t eaten and was obviously in some pain. Nothing a little baby-morphine(tm) didn’t fix. Today he is back on full feeds and on the mend.

Now the only thing standing between him and h-o-m-e is finishing his anti-fungals, passing his car seat test, and avoiding infections.

Also – our little monster is now 9 pounds and 13 ounces and 20 inches long. At this rate he will be 300 pounds by Christmas.

Attempting to put our money where our mouths are

The other day we asked everyone to try to give blood and when we searched for nearby blood drives ourselves we found out the Mets were hosting a blood drive at Citifield, which is a short distance from our home. So bright and early this morning, before going to the hospital, Amy and I headed over there to do our part.

Citifield

Meet the Mets, give some blood

Now, to be honest, I really hate giving blood. The phlebotomists always need to poke me and then dig around with the needle under my skin until they hit gold — not a pleasant experience. But I was doing this to give back after all the blood that Benjamin received, so I was willing to put up with a little pain.

The set up at the ballpark was impressive – it seemed like a triage center and was already busy after only being open for 15 minutes. Amy and I separated and answered the questions to make sure we hadn’t traded money or drugs for sex, caught malaria or ate a lot of British beef in the early 90’s.

Red Cross at the Caesars Club

I warned the Red Cross staff member taking my blood that I was going to be a tough case. She seemed up for it and after some semi-painful poking got some blood flowing into the bag.

20110813-045740.jpg

Grit your teeth and think of Benjamin

But then after a bit, more and more nurses kept looking at my hook-up and bag and started poking me again. Eventually I learned I actually have no blood – that I’m a robot or something. Either that or I just have very small veins, veins that got smaller after they made me bruise up. The nurse actually told me “You probably shouldn’t give blood.” The half a unit they got out of me was not usable, unfortunately.

Luckily Amy was able to donate, so the trip wasn’t wasted – although it wasn’t all fun for her either. She didn’t feel so great half-way through and then they didn’t want her to leave “until her color improved.” Amy then had to explain that she is always that color.

20110813-045756.jpg

Hooray for Amy!

The Mets gave out goodies that helped to soothe my disappointment – we each got a pair of tickets to an upcoming game, t-shirts and we were entered into a few raffles (even those of us who failed).

Any way – two things: 1. I need someone to give blood as my proxy, pretty much for the rest of my life 2. Everyone else at the blood drive seemed to get through it pretty smoothly, so I think we’re the exception.

So, please go and donate blood!

Ok – one last confession… the real reason we went was to meet Mr Met, because come on, this is exactly the sort of thing he would be at, miming things and getting photos taken with people. No luck though… I bet he probably can’t give blood either, on account of looking so pale all the time.