Benjamin has been chunking up this past week – hitting a whopping 4 pounds 12 ounces last night! That’s 3 pounds over his birth weight.
He also has been doing really well weaning off of the CPAP and his record is 15 hours off without a sweat.
Ben’s poppa got a chance at feeding and Benjamin took a whole 47 ml from his bottle (more than a full feeding). Not bad for my first try.
Another milestone – Amy gave Benjamin his first tub bath. He seemed to like it well enough… or at least not hate it. It was seriously adorable.
With all this work on Benjamin’s part, we figured we needed to pitch in and get some stuff done too. We finally cleared out his room and began setting up for him.
Lots of visitors this weekend – Carol and Conrad made the trip up to the city to see Ben. Grandma W and Amanda came in today as well as Jamie and Elisha. Tomorrow we are looking forward to seeing Grandma L, Chris, Laurie and Grandpa W.
Sadly no progress on the eye front yet – the surgeon is coming back again later this week and hopefully then he will see some improvement from the Avastin.
This evening, as the night attending went on rounds, the stop at our bedside was pleasantly uneventful. One of our regular Fellows introduced “Mr. Ben”, someone mentioned that his picc line was pulled (again… sigh), Fellow said they weren’t going to replace it- just make due with a PIV (peripheral IV line) until the course of his anti-fungal medication is over. And then they were gone! Yes, we have made it officially into “boring” territory …at least until we find out about how his eyes are doing.
Right now, all Benjamin’s energy is going into gaining weight and practicing for his great NICU escape. He’s been officially trialing off of CPAP for 2 hours a shift, but they have been letting him stay off as long as he’s doing well. I think his record thus far has been 12 hours off of CPAP! He’s working on figuring out the bottle, and takes at least one a day. He takes 40 ml a feeding per bottle, which is about 1.35 oz. He’s been regulating his temperature well and loves his crib, as do we. It’s so fun having real access to him- being able to touch or hold him whenever we want, without the isolette separating us. Today he even had his CPAP tape and velcro moustache off for a little while!
So, here’s a dose of the cuteness (though I admit I am highly biased).
Benjamin had a super-star day yesterday (celebrating his 15th week). First he trialed off the CPAP from 2am to 11am with no problems – that’s a personal best! Second he practiced with a bottle and took his whole meal on his own – no feeding tube. That’s 38ml (with a little extra for good measure) – and he did it in under a half hour. Amy is going to try a bottle again today and we’ll see how he does.
Ben was also really funny yesterday and was so alert and did not want to be put down. We sang him silly songs and stayed with him until he fell asleep and we could sneak out. He is acting like a real baby – who would have thought? His due date is next week, so while he will be dealing with issues relating to his prematurity for a long time, he is in baby territory now.
Still no news on his eyes… will update when we hear.
Besides the ROP crap in the last post, Benjamin has been doing great! First off – on Friday they moved him out of his isolette and into a crib! He has been off the heater for a few days and he was ready to be out in the world a bit. It makes such a huge difference to us. No more opening up the port holes to touch him, no more plastic separating us from him and it feels so much more normal. This whole experience is strange through and through, but seeing Ben in a crib, if you squint and forget about the IVs, the monitors and the CPAP, you can almost imagine him out of the NICU at home. After now over 100 days in the hospital, that would be wonderful.
On the feeding front, Ben has been practicing a few times a week on a bottle and has beaten his previous record and took 20 ml the other day. That’s over half a feeding for him. It will be great to see him getting all of his milk through the bottle and none through a feeding tube.
Also good news – he is up to 4 pounds, 3 ounces!
And finally – they have been trialling him off of CPAP for 2 hours twice a day, and tonight they took him off at 8pm and when we called to check in on him at midnight, he was still off and the NP said the nurse can keep him off as long as he tolerates it. This is huge! We’ll find out tomorrow how long he lasted.
Today Amy and I even got out of the hospital for a bit and went to NJ for Jason and Heather’s wedding – congrats you guys! We had a great time!
I’m tired of good news/bad news posts, so I want to get this update out of the way first, then get on to other things.
On Friday, the eye surgeon came back to examine Benjamin and see if the laser surgery worked and in his words, Ben’s “prognosis is poor”. Both eyes are damaged through ROP in such a way that he cannot fix them with laser surgery and the previous laser did not do much to help. Plan B was Avastin injections – which as I said is sort of experimental for babies. It is really a cancer drug, but they use it more and more on adults with eye problems (like my aunt). At CHONY it is not approved yet for use on babies since not enough studies have been done to prove its safety, but there has been some really amazing results on babies with zone 1, stage 3 ROP, like Ben has. Since there really aren’t any other good options, the surgeon decided to give him the injections anyway (actually the first time he has given it to a baby).
The injections could reverse the abnormal blood vessel growth and hopefully save his eyes. The surgeon went so far as to call it a “wonder drug.” We like the sound of that a lot and are hoping hoping hoping it works.
We won’t know for at least a week if it has any effect – everything crossed.
The eye surgeon who worked on Benjamin last week came by to see the results yesterday and had trouble seeing any improvement in his ROP. He is coming back on Friday and will likely try another type of treatment – this time injecting a drug primarily meant for cancer into his eye. The drug is Avastin and the whole thing is pretty experimental still – but early studies seem to be encouraging. (A word of warning – do not google “ROP and Avastin” – you will get a video that shows the injections being given and it is something you won’t be able to un-see).
Hopefully this treatment will work – plan C and D are much more invasive.
But there is (unrelated) good news!
- Amy got to feed Benjamin herself with a bottle yesterday and he took 14 ml! (Almost half his feeds)
- Ben is almost 100% off the heater and keeping his temperature up on his own.
- And …… drum-roll…… he is now over 4 pounds!