one month old and the pump room tales

Ford was one month old on Friday! And as of today, Sunday, is still rocking the CPAP. His lactates are slowly climbing, but they're not nearing a danger zone yet, so hopefully they'll plateau or inch back down. There is still a chance he'd have to be intubated again, though today they started the cpap wean, changing the PEEP from 10 to 8, so that's a step in the right direction. Otherwise his oxygen needs fluctuate from 21% (room air) to 28% and his breathing rate from 40s-80s.



We've noticed that Ford often sleeps with one eye cracked open, which gives him a pretty dopey look (tres adorable). Sometimes that eye rolls up so you just see the white, which is a bit more demonic than dopey. Not sure it comes across in this picture - our one eyed monster as I like to call him:





Here he is with both blues open, and loving his soother:



Another good step this week was getting his stitches out. Also, now that only one of his limbs has a tube in it (the pic line), he's able to be bundled up which he quite likes:

AND he's up to full feeds (20ml/hr)! Phew! It's been a good few days for Ford. In the next couple days they'll try moving the end of the feeding tube from the intestines (nasaljejunal or "NJ") up into the stomach (nasalgastric or "NG") and continue to wean the CPAP. They're also weaning the midazolam which will be down to zero this week.

In the first week we were here, I asked Dr. Joynt how many other "heart babies" were in the NICU. She couldn't tell me (it's all very confidential you know) but asked if I'd been in the pump room yet. I hadn't, and she said I'd likely get all the babies' stories in there from the moms.

And it's true. The pump room is a quiet place with soft lighting and the constant whir of the "Medela Symphony" breast pumps. Often there's a mom crying - it's not easy to cry in the open of the NICU, the beds being close together with always a handful of other parents and nurses nearby to witness your meltdown. In the pump room, there's only ever 3 or 4 moms in earshot, each with a set of sympathetic ears.

Sitting next to Moms in there is where I get the scoop on the other babies and it turns out there's quite a few with heart defects. It also turns out, with all of Ford's progress and set backs, we've been pretty lucky so far. Lily has HLHS, like Ford. But she also had a few other complications and isn't going to survive at all. Caleb's heart stopped a few hours after his norwood procedure and he's had two other surgeries since. He then developed a blood infection. It looks like that might be clearing up, but in the meantime his heart function isn't going to hold and he's being put on the transplant list. During Cameron's surgery for pulmonary atresia, her heart was punctured (a one in a million chance apparently). A second surgery was unsuccesful in repairing that and she was put on the transplant list. But then she also got an infection, and died. Joseph got a clot after his heart surgery and his head ballooned. Last I saw his mom he was in the OR for that, and I haven't had an update since, though I know they're still in the PICU. After a month in the hospital doctors still don't know why Olivia isn't able to breathe on her own but they're narrowing it down to a rare mitochondrial disease... and so on... it's heartbreaking.

So we feel lucky that Ford is doing as well as he is and cry for the babies that aren't.