I’ve been lurking in this thread for quite a while now. What a drama! I’m so happy for you and your family.
Congratulations!
Welcome home, Calleigh!!!
Welcome home, Calleigh! And congrats to the whole family, too.
Thanks so much, everyone. We’ve been home for 40 hours now (not that I’m counting!) and things are going well. She’s taking all her feeds, and is much more alert than she was at the hospital. She likes her bed, but boy! is she a noisy sleeper! She doesn’t cry (ever - it’s kind of creepy. They tell me she’ll start crying closer to her due date), but she grunts and chortles and trills like a dolphin. It’s the funniest thing. Not so conducive to Mom an Dad sleeping well, though, since we’re attuned to her noises like Radar O’Reilly, desperately praying that she keeps breathing.
We’ve realized that she’s a dolphin baby - “speaks” through whistles and trills and holds her breath a lot! (Hopefully, the breath-holding is over!)
She’s starting to breast feed some, in addition to her bottles of pumped milk. She goes back for an eye exam next week (her retinopathy could still get worse over the next two weeks, but we hope not, of course) and another hearing test in three weeks.
So that’s it! She’s a wireless, monitor-less plain ol’ “newborn” baby now. How completely and wonderfully “boring”! 
I’ve followed your adventure with fascination, and I rejoice with you that your baby turned out the best possible under the circumstances. Please keep us posted. Little Baby C. has a fan club here already.
I’m so happy to hear she’s finally home. I really admire your strength through this whole ordeal.
I’m so happy everything has worked out. It is nice to see that you are so excited. Don’t forget to go out with Mr WhyNot on occassion.
I’ll tell you, when we brought the first of our twins home, we had her sleep in our room. For one night. I didn’t sleep a wink, what with her “dolphin noises” and intermittent breathing. (Who knew that babies don’t breath as regularly as adults?!) Mrs Slow did better, but I had to banish all our babies to other rooms for the night.
I’ve been reading this thread since it started. I am so happy that you’ve got your little girl home finally! She truly is a miracle baby.
Caileigh’s retinopathy has progressed to something called Plus Disease, where some of the blood vessels leading to her retinas are dilated and, in the doctor’s professional words, “squiggly”. She’s going back in to the hospital tomorrow morning (um, make that this morning - it’s later than I thought!) for laser surgery to prevent a retinal detachment. If all goes well, she’ll be home tomorrow night. Without treatment, she’d have about an 85% chance of having A Very Bad Thing happen (unspecified, but including blindness as a possibility.) With this treatment, that goes down to 15%. She had her last exam one week ago, and this wasn’t present, so they’ve caught it very early, and it’s likely that they can take care of it.
Other than that, she’s doing great. We’ve been having some feeding challenges, including her wonderfully amusing game of “fountain,” wherein she can spit up milk with truly impressive velocity and height during a feeding. A little experimentation has shown that it’s all the fault of the formula we were told to add to her breast milk to increase her calories. Four meals on just plain breastmilk, and she’s eating twice as much with no spit-ups. So we’re discontinuing the formula, since she’s getting more calories without it 'cause she’s eating more and keeping more down. Just today, it was like something “clicked” and she suddenly understands how to nurse. It’s wonderful; she nursed four times really well - two of them well enough to replace entire bottle feedings and twice I offered her a bottle after about 10 minutes of good nursing. I think we may finally be on our way to exclusive breastfeeding!
I began the process of working with the state’s early intervention program last week. In mid-June, they’ll send a slew of folks over to the apartment - a developmental psychologist, a physical therapist and even a speech language pathologist. Together, the team will evaluate her and see if she needs any therapies. They also offer vision and hearing therapies if she needs those. Apparantly, any therapy will be paid for by the state. (Generally, they’d bill our insurance, but because we have a private policy, not a group one, they send the bill to the state so our premiums don’t get out of hand. Well…more out of hand than they already are!)
She still barely cries, which is a little unsettling. I keep checking on her during the day, because she’ll lie in her bed awake, staring at her mobile for hours without telling me she’s awake! But she’s nice and responsive when we play with her, so I’m not worried about her. She’s just a very mellow baby.
Yesterday for the first time, she reached out and patted my face with real purpose, instead of with a wild baby swinging hand. I melted.
Take care, honeybunch.
I’ve been semi-following this thread from lurkerdom to registered-ness.
So now I get to be the first to give you hugs for this.
{{{{hugs}}}}
WhyNot, I’ll be praying that the doctors are able to get a good outcome for Cailleigh’s eyes.
Just wait until she kisses you for the first time! I know you know how wonderful that is from WhyKid doing it, but it’s still completely awesome! 
Prayers for the docs & for Calleigh’s eyes & everything else!
Whynot, I hope that the surgery is very successful and I’m so excited for you and Cailleigh that she’s home and doing so well. I am also very excited that you’re well on your way to exclusively breastfeeding. It’s wonderful when you see those chubby cheeks and know that that’s mommy’s milk making your baby grow. Plus breastfeeding is so much easier than pumping …no more sterilising bottles, washing pump parts and bottles, etc etc, just latch on and go…it’s also much easier when you’re out and about! I used to stuff a diaper in my handbag and go…none of this lugging around huge baby bags full of stuff like formula and bottles :). Thanks for keeping us updated and can’t wait to see new pics…
Her surgery went OK, according to her doctor. She cried for two hours straight afterward, though. Horrible, real baby sobs with actual baby tears. My heart was breaking, especially because I know that’s so not like her. It was obvious she was in pain, but it took me almost an hour to convince her doctor to give her some Tylenol. (What is it with doctors not wanting to give pain relief to babies? Fucking barbaric.) He kept trying to write off her crying to hunger (um, no…she’s missed meals at home and she makes one squeak and then decides it’s not worth the effort and goes back to sleep!) or overtiredness (um, this kid can sleep through anything, anytime. If she were tired, she’s squeak and then go to sleep.) She was just inconsolable.
She’s home tonight, and still emotionally fragile, but calmer. I gave her another dose of Tylenol and got her to eat a big dinner and then put her to bed early. I’m sure she’ll wake up in the middle of the night, but hopefully in a better mood. We’ll get her back on schedule tomorrow.
New to posting here, but I’ve been reading for a while… Just wanted to add a voice of support. I’m so glad to hear that Calleigh’s surgery went okay, despite the trauma to her and her family, and that she’s home again.
Comforting psychic snuggles & healing prayers for wee Calleigh!
I completely don’t understand doctors not wanting to treat baby’s pain! They say “Oh, they don’t feel pain like we do, because the neural pathways aren’t formed yet”, to which I say, bullshit! Anyone who’s watched a baby with diaper rash or teething knows that they certainly do feel pain! I’m glad you finally talked him into giving her some Tylenol, and will be hoping as hard as I can for a good outcome to the surgery!
She’s still a mess. Not solid crying, but fairly constant whimpering, punctuated by outbursts of sobs. She hasn’t been alert and calm once since yesterday morning before the surgery. I’m starting to wonder if they accidentaly injured her during the surgery. Perhaps pulled a muscle or even broke a bone while restraining her? Poor lamb. We’re off to the pediatrician (uninvolved in yesterday’s drama) this afternoon for a previously scheduled appointment, and I’m going to ask her to look her over with a fine-toothed comb.
I know the doctors did what had to be done, but I’m filled with grr towards them right now on her behalf.
Please update. I’m so sorry Calleigh had to go through that. I have some vision problems and wondered if her eyes are sensitive to light, maybe due to the surgery? I know that sunlight on an injured eye can be very painful, expecially since the wee one can’t understand yet what is happening to her.
Sending all kinds of positive energy and kitty kisses her way - and to you, too, WhyNot.
As an expecting father myself I feel your pain. Good luck, I have a feeling everything will work out for you and the baby.