Honest, I started my light hearted post before yours was in. 
Hang in there. While I sure as hell hope Ally never develops cerebral palsy, know that you can handle even that. I have a friend whose oldest son has cerebral palsy. He is pushing 30, has attended college and is doing his best to be independent. Stay strong and loving, lean on each other, and God bless your NICU.
I felt like that with my first, full-term, baby! Finally, Grandma told me the dirty family secret - bite 'em off! (Uh…the nails…not the fingers and toes…) I felt like a sicko the first time I bit my baby’s nails, but it was SO much easier than the clipper.
With a premie? Uh-oh. I’m back to where I started from. I can’t even nibble hers off, I’d nibble her finger off with it! 
I wouldn’t stress about it. We need light-hearted right now. The nurses and I were joking last night about how Caileigh was going to grow up confusing her boyfriends by hating foot rubs - and this was while we were pinching her feet to get her to breathe again. You really need to develop a sense of humor in these types of situations, or you become so overwhelmed and incapacitated that you’re no good to anyone, including your premie.
Hampshire, best of luck to Ally. Remember that statistics are great at describing what generally happens to large numbers of people, but they don’t mean squat when it comes to your little girl. There’s so many stories in our hospital of Grade IV’s that resolved, or beautiful children who survived them anyway. And tell Emma to hang in there too, while her sister’s hogging the attention!
Thank you for your kind words. The world needs more kind people, and I’m sure Caileigh will be one.
With a preemie, I’d probably just file her nails.
p.s. Maybe when she’s pissed at her husband, she’ll give him footrubs because she associates them with pain. Then, he’ll think she’s trying to make up. A relationship like that might last a long time.
Add me as another who’s missed this thread.
WhyNot, she’s beautiful. 
I’m just want to add my support to you and also to you, Hampshire.
Good to hear that she is less likely to be prone to NEC. Are they able to test her vision at all yet?
C’mon, Calleigh, Breathe Honey! I propose that Calleigh be nicknamed Whyevernotbaby…but maybe that’s too much of a mouthful!
Hampshire –
Ally and Emma–hang in there–it really is nice here, you just are off to a rocky start. Have you gotten to hold either girl, yet? Funny how time can expand and then suddenly woosh by–you must be on a rollercoaster about now.
I also used a soft nail file (not metal) on all my babies. Works a treat.
Now to get personal and nosey–are you guys ok, spouse and marriage wise? This is a massive strain on any marriage–I hope you guys are supporting each other thru this. (sorry, don’t mean to be an ass)
My thoughts are with all of you.
The girls are hanging in there at 1 week and counting.
Emma may need surgery today to close the valve between her heart and her lungs (it’s open most of the time in-utero but closes up before term) but I hear the surgery if pretty common and not to worry.
Ally’s type IV brain hemorage is probably more of a type III (better) now that they’ve looked at it and it’s not getting any worse.
The mrs. and I are holding in there. These babies were conceived in-vitro so it’s been a long road to get to this point. We use eachother to lean on quite a bit and understand that when one of us is grumpy or argumentative that it is just a way of relieving stress from a very stressful situation. And we make sure any arguments we have are about the unimportant stuff (why are you in the slow lane, no I don’t want McDonalds again).
We have a strong bond and agreed to help eachother through this since one of us is often stronger than the other and vice-versa.
Congrats on the 1 week! That is great!
Best of luck with the surgery for Emma (does Ally not need it?).
WhyNot - glad things are going well. My youngest was on CPAP for a few days.
Hampshire - hang in there. I had twins on Christmas eve, and we had quite a scare with the youngest. She’s doing great now though.
Sending positive vibes to all of you.
Hampshire, Emma’s condition would be a PDA, right? They are pretty common, and so is the surgery to correct them. While no surgery is without risks, it’s not a terrible one. And it’s good news that Ally’s bleed isn’t getting worse. I’ll keep both of them in my prayers.
Caileigh’s back on a ventilator, unfortunately. They can’t seem to find anything wrong with her except that she thinks breathing should be optional once in a while. Her blood tests are coming back wih no cultures, meaning there’s no infection. She’s gaining weight OK, although slowly. She just doesn’t want to breathe all the time. And when she stops breathing, her heart decides it’s time for a break as well, and starts to slow way down. These episodes of apnea (not breathing) and brachycardia (heart slowing) are getting more frequent and getting harder to get her out of, so the doctor put the vent in to give her lungs and brain a few more days to mature without the stress. They hope to extubate her again next week.
Guess she was a little ambitious pulling it out herself, but it was really nice to see her face and get to know her a little better over the last week or so.
WhyNot and Hampshire, I’ve been following your stories and just wanted to let you know I wish all things good and positive for you and your families.
Well, since we had two scary updates in a row, I thought I 'd post another update just to let you know she’s holding steady. She’s still on the vent, but getting much better oxygen and a lot less of her apnea (not breathing) and brachycardia (heart rate slowing) episodes. She’s up to full feeds (11 mL every two hours) and yesterday they began fortefying it with premie powder to 24 calories again. Still no sign of any infection.
So things are pretty good. Hopefully a few more days on the vent will give her lungs and brain the time they need to mature so she can breathe on her own more effectively and consistently.
Just letting both of you know we are all following and rooting for you.
A couple days ago Emma finally opened her eyes for mom. It was a moving moment. They said she had opened them earlier that day. Ally had not opened hers yet.
Last night they let mom hold her for the first time kangaroo style. I think they both needed it. I was busy keeping Ally company and kept talking to her and she opened her eyes for me. It was great since it was her first glimpse of the world.
Emma’s PDA surgery is still on hold since she seems to be responding well to the steroids. Ally however still shows the blood on the brain. Not worse but not better. The possible long term effects this may have scare me to death.
Hampshire, I feel for you. I lived that nightmare for 1 month at the end of the year and have probably lucked out that things are fine (but I still wake up in the night and wonder). It was therapeutic for me to post on the board. The worst were the purely random and uncivilized thoughts that would in my head sometimes. I think it’s a normal reaction but sheesh it was disturbing.
With twins your experience is different. You don’t feel like celebrating the good news with one and trying to prepare the worst with the other. Understand most people don’t have twins and may say things that end up being horribly insensitive by accident.
You’re email is hidden and so is mine. If you think it would help to vent a little directly, lemme know and I’ll figure out how we can get in contact.
Wow, what a good eater! Here’s hoping things keep improving and soon no more vent!
So, guess who self-extubated herself again. (Is “self-extubated herself” redundant and repetitive? I think and suspect so.) Yep. Yesterday morning. She’s back onto the CPAP and as of last night was doing much better on it. But boy does she hate that little plastic mask smashed around her nose. Yesterday she was pulling at it with one hand while fingering the velcro strap that holds it in place with the other. Smart kid.
She’s up to eating 1/2 an ounce every two hours and growing like the proverbial weed. She’s at 2 lbs, 10ish ounces now - twice her birth weight! She’s still having some of those darn apnea and brachycardia episodes, though.
Yay for extubation, no matter how it happens! It sounds like she’s doing really well; I bet you guys are pleased.
Just remember that there is an end in sight and you will actually be able to parent your child outside the hospital walls someday. Really!
Please keep up posted **WhyNot **and Hampshire Some of us lurkers are rooting for you here.
Best wishes.
Caileigh’s breathing much better. She’s back on the Vapotherm, at least for the time being. The last couple of days I’ve gone to see her in the evening, instead of the afternoon, and she’s been wide awake and looking around. She’s making eye contact now, which is so exciting. I’m not sure how much detail she can actually see (and neither are the nurses) but it sure looks like she can focus on a face about 6-8 inches away from hers. She tends to go crosseyed a lot, which is freakin’ adorable! (And nothing to worry about, say the nurses. Just her nervous system working out how to make both eyes move together.)
Just this week, she’s developed a fondness for her pacifier, which has us excited. She’s beginning to get her suck reflex working, and in another couple of weeks will begin trying a bottle and breast. She doesn’t have the rooting reflex yet, which is the one where, if you stroke a baby’s cheek, she will turn her head and open her mouth wide, “looking” for a nipple. It’s really neat watching the development of all this stuff most babies are born with.
Hmm…I wonder if she has a belly button yet? She didn’t last week - the scar was perfectly smooth, no innie or outie. Weird looking. I’ll have to check today.
Great news!
Bet you can’t wait to raspberry that belly. 