We received some sad news yesterday from the eye surgeon. Benjamin’s eyes have stopped progressing and he will need additional surgery in order to try to save any vision. For those keeping score at home, we are now up to Plan D. The problem is that his retinas are not unfolding and reattaching as they should. This might be because of scarring that is forming (though he can’t see any) or because of stiffness of his retina. the surgeon wants to operate again and see if he can tell why the retinas are not improving. If there is scarring he can try to remove it, or he may just re-inject gas bubbles to help unfold the retinas. His also said his eyes are much smaller due than they should be at this point due to the disease – making the surgery more difficult.
“So when is this surgery?”, you might ask. Well since they put Ben back on CPAP after his last long run of being off, he hasn’t been very stable staying off for very long and they are trying more regimented on/off schedule. The surgeon wanted to discuss with the primary doctors when is a smart time to do this (the timing isn’t super critical it seems). But then more stuff came up…
Benjamin had an x-ray that showed some disease in his bones that could point to a bone infection. They ran 6 more x-rays and every test they could. The x-rays show that his bones are not smooth and regular on the outside as they should be. His blood work does not show any sign of infection though and we are waiting on cultures to come back in a few days to see if anything grew. Then he ran a fever this morning (it was gone next time they checked though) and that added fuel to the fire so they have already decided to start him on antibiotics again. They also did an abdominal ultrasound and found possible fungal balls in his kidneys again. If he ends up being positive for a fungal infection this could mean an additional 6-12 weeks of being in the NICU.
Amy and I hope they are over-reacting, but it’s better to be cautious. We just hope everything comes out clean, he gets more stable and they can do the surgery so we can get back on track pushing this boulder up the hill.
Benjamin doesn't let it bring him down... besides, Tantalus had it worse than Sisyphus
Benjamin almost made it a week off of CPAP but had to go back on yesterday. He was breathing very heavily and his oxygen saturation was dropping. Last night he had rough patches when they took him off again so they may put him on a more scheduled CPAP weaning program.
As you can imagine, this is super frustrating. We were really hoping he wouldn’t need to go back on and CPAP would be something he could kick for good. That would mean they could get his hernia fixed and we could just focus on the feeding. But I suppose we don’t want to rush him – it’s not like we have a CPAP at home if he starts desatting there.
On the feeding front – we are making headway. He takes a bottle for a bit of almost every feed (and finishes a couple of bottles a day). Amy and I are getting much better at it and even I feel much more confident feeding him. And he is over 6 pounds now!
We are still waiting to get the full update from the eye surgeon, but the short version the nurse shared with us is that Ben’s right eye is doing what its supposed to do, but the doctor had a hard time even seeing the retina in the left eye. We are crossing our fingers that this doesn’t mean we should lose hope on the left eye, but at the very least we are happy the right eye is hopeful.
I just realized how often I use the word “hope”… I guess it’s appropriate, feels like hoping is our full-time job.
Cuddle time with mom
And at home, Benjamin’s room is ready and full of presents from our wonderful friends and family (thank you thank you thank you). We have a pediatrician picked (though his name sounds like a super villain). And the Car Seat Lady is going to evaluate our car seat and the installation in the car (might need to trade in our tiny Scion XA for something a little bigger…).
The fact of the matter is- we are so sick of the hospital and not having Benjamin home. It’s been nearly 5 months of this. At some point early on it stopped wearing on us because it became the new normal. But seriously – enough already.
Happy Father’s Day Joseph!!!
Happy Father's Day Joe!
Benjamin is doing well- he’s been off cpap for 3 full days now, officially beating his last run. (<- watch me jinx it again…) After he’s officially off of cpap, he just has to be taking all of his feedings by bottle and he’ll be heading home!
The eye doctor stopped by on Friday and was happy with the progress that Benjamin’s eyes were making. The retinas are still unfolding- the right more than the left. Sometimes it takes months for the retinas to unfold all the way, and they won’t reattach until they are unfolded. The bad part is that the eyes won’t grow until the retinas are reattached so he’ll be losing a few months of eye development as well. We just have to wait and see what happens.
Happy Father’s Day Joe!
eating is serious work
nom nom nom
a bigger version
father and son
It’s been pretty uneventful around old CHONY for Benjamin. He is getting back on track weaning off the CPAP, but is nowhere near his record 60-hour break. He is also making some headway on taking a bottle and is doing well at that a few times a day. And while he is gaining weight (now about 5lbs, 12 oz!) he doesn’t seem to be growing length-wise – been stuck at 43cm for a bit. I can’t imagine where he’s getting this shortness from. Hopefully he’ll get a growth spurt soon so he can be as tall as his parents.
The eye surgeon stopped by yesterday and while it’s still too early to know if the surgery was a success, he seemed pleased with Ben’s eyes so far. Supposedly his retinas are “unfolding” – which we are told is good. So keep unfolding retinas!
The doctors are also talking about scheduling his hernia surgery – so we are getting closer to coming home everyday.
What Benjamin thinks of CPAP
I jinxed it (yes, Bill… just like cousin Oliver). Shortly after my last post Benjamin went back on CPAP – he was satting a little low and breathing a bit heavy so they decided to give him a rest.
Sometimes it takes a few tries before babies are done for good, they tell us…
We did not want to jinx it, but Benjamin has been off of CPAP since 4am on Wednesday. By my trusty Office Depot calculator, that is over 60 hours! That seriously destroys his previous records. Does this mean he’s off completely? Only Ben knows that for sure – but so far, so good.
Besides CPAP, do you know what Benjamin doesn’t need? Antifungal drugs, that’s what. As of yesterday he has finished his 6-week course. This means he doesn’t need a constant IV on him and we can stop poking him like a pin cushion. Hooray!
So now we are down to working on his feeding. We need to get him to take all his milk through a bottle. He has been practicing up to now, but now it’s time to get serious.
Ben’s room is almost ready and really looks like a baby’s room. The crib is put together (thanks so much Sandy, Joseph and family!) and the glider is set up and after spending time in there, it might be my favorite room of our apartment. We can’t wait for it to include one Benjamin.
One tube to go
We also want to thank everyone for all your comments on our posts. I know we have said it before, but it means an awful lot to have the support.
Benjamin (now up to 5 pounds, 3 oz!) is recovering nicely from his surgery (no news yet on his eyes) and is pretty much demanding progress. If there is one thing he hates (more than getting his temperature taking and a little less than eye exams) it’s his CPAP. He was off yesterday from 8am until 11pm and did not like going back on. And if there’s one thing he loves it’s getting his feeding from a bottle.
This is very convenient for us, since these are the two things he needs to do – get off the CPAP full-time and get all his feedings from the bottle.
The other thing Benjamin loves is being held – which is wonderful for us when we are there, since we love the feeling of providing him comfort and having that bonding time. But when i starts getting late in the evening and we need to head home, it is really heart breaking to see him get upset. Amy is getting very talented at calming him down long enough so we can sneak out (and let the nurses deal with him after he discovers our clever ruse). I suspect this skill will be useful in a few weeks.
Speaking of a few weeks, the nurses, while remaining closed lips over any timetable for the great escape, have begun asking us if we have a pediatrician or if we have begun setting up his room. This, as was explained by a nurse a couple of months ago, is code for “Your baby is nearly ready to go home, prepare to freak out.” Ben still needs to get off the antifungal (June 10) , do the other stuff mentioned above, and also get his hernia fixed before he leaves. that said, the light at the end of this particular tunnel is getting bright.
Anyone know where we can get a drum of Purell to dip Cayman in?
Honk shoo... I look like an angel