I had a great day at the NICU today. First I had a double snuggle, which was wonderful. The girls were reunited at last.
After that, we gave them a bath, so I got to see them without masks and leads and everything for a few moments. Both girls did great without the breathing support.
This picture of B makes me laugh, because she looks more like a bird than a baby. Â Part of it is because her face is indented from the mask. But I think it gives a sense of how tiny and fragile these little people are.
Cora also did wonderfully and cried loudly after being bathed. Then she gave me some eye contact. We have another meeting tomorrow to talk about the future and the kind of follow-up care she’ll get given her diagnosis. I’m not sure I even want to talk about it though, because at this point I’m just learning to live and enjoy the moment. I can’t control what’s ahead and no one can tell me with any certainty what it looks like, so I think we just need to forge ahead together and enjoy the positive moments. Â Here’s a picture of C.
The girls had a rough day today. B was really struggling with her breathing and her machines must have gone off 25 times in the first little while I was there. She was a bit agitated too, and kept kicking off her leads. Then I found out that she has a heart murmur as well – apparently new. Hopefully that sorts itself out soon and doesn’t require intervention. (C has a murmur too, and I even got the surgery talk, but for now it is being managed “conservatively.”) They did a chest x-ray on B and nothing in particular showed up – thank god – so they gave her a little more breathing support.
C’s day was not quite as rocky, although she was struggling with the breathing a bit with her little ribs heaving. She seemed to be better after a very long snuggle though. I wish I could hold both at the same time, but we’re not there yet. Fingers crossed that tonight goes easier for them.
If bedrest was a marathon, NICU time is some kind of neverending Iron Man.
Cora showed us her little face today for the first time since she’s been off the ventilator. Â When she’s on her current breathing apparatus, she needs a hat to hold the mask on, so much of her face is quite obstructed. Â Today they switched her to a different one because her little lip was getting very irritated, and we could see her much better.
Beatrice had a brief moment of wakefulness during our snuggle yesterday.
I don’t know how I’ll ever repay all the wonderful favours – notes of support, food, and shoulders to cry on that people have offered in the last few days. I really appreciate it. I’m also finding it very therapeutic to just write here for a little bit. Although, I warn you that I am not as strong as I sound in here. At the end of the day I come home and I’m just completely drained. I can hardly move. I was flipping through C’s files and found notes about me being very “teary” which was kind of funny. I am totally the teary NICU mom. I was teary after all my babies’ births, but obviously much more so this time. I don’t think I’m being overly dramatic in saying that the past week has been one of the hardest of my life. I hope that doesn’t sound self-pitying because overall my life is pretty good, but it’s really hard.
Bright moments of the day: B was looking at me today, wide awake, which was very sweet. And now the girls incubators are side-by-side, which means that tomorrow I may even get to double snuggle!
We had a conversation with the doctor that left me feeling a lot more hopeful today. But then I just came home and collapsed and got myself completely upset again. Sometimes I wish I could just go to sleep and wake up a week ago… or six months from now.
I had another piece of good news today… we now have two primary nurses for our girls.
The nurses work 12 hour shifts and care for two babies at a time. Unfortunately, B & C are not next to each other, although they are close, so we meet two new nurses every shift and there are 200 or so who rotate through the NICU. At first, I was extremely deferential to them, but I’m starting to learn more about my girls, and the ins and outs of NICU life, and I’m getting more assertive about their care.
You just click with certain people, and certain people disseminate information a little better than others. I had a disconcerting experience today where the nurse unloaded a bunch of information on me, and it sounded negative. I’d just walked in the door, sleep-deprived and already a bundle of raw nerve endings and I wanted to burst into tears. I asked for clarification from the doctor and realised I’d completely misunderstood and all was well. Still, that experience left me a bit shaken. It’s especially important to have people you trust at nights, because I’ve decided for my own sanity and fatigue levels, I cannot go over every night. My other kids need me too. But if I can pick up the phone and hear a familiar voice tell me what I need to know, that’s great. The solution is that you can ask nurses to primary for you, which means they will take your baby every shift they work. If we can line up a couple more than our babies will almost always be with someone we’ve picked.
As well, once the nurse knows your baby, she’ll knows what’s typical or unusual for her that day… which is important for any baby, but especially for C who needs close monitoring as a result of her bleed. I want the nurse to know that she does better on the breathing machine with a soother, or that her tummy might be puffy, but it could be due to the bili lights she was under two days ago. So I now have recruited two nurses (three actually, as two are going to split duties), which will at least cut down on the strangers handling my babies.
As for me, it clicked for me yesterday that I’m grieving. Anger, bargaining, denial. I’m rotating through those stages right now as I process all of this.
Today was a good day. B has now weaned off her ventilator and has been hanging steady for a couple of days, breathing with just a little assistance. We’re thrilled about that.
C had a good day too. After her lung issue, she had minor surgery, and was on morphine with a(nother!) tube coming out of her. As of today she is back off the ventilator, and the tube has been removed.
The bad news I referred to yesterday, was that we learned that she has had a significant brain bleed. When three neonatologists, including the head of the whole centre come to find you, you know it’s not good news. We don’t know when exactly, or why, or how, although in the 24 hours since we learned I have puzzled over all those questions over and over. It seems so horribly unfair, especially as this condition is extraordinarily rare in babies this far along. It’s not something we can see on observing her, nor will we understand what it means for months and months. She is an active and beautiful baby.
Understandably, this is pretty upsetting, especially with a million post-partum hormones flowing through me, but we are going to live in the moment and our hopes and goals are shifting but are ultimately the same. I remember reading a book once with a line about how a mother’s love goes where it is needed the most, and I’ve never felt that more than now.
And just for the record books – Dad’s first diaper change!
I wanted to let you know that the twins were born at exactly 30 weeks when they decided, rather quickly, that it was time to come. They are 3.6 and 2.9 pounds respectively – quite respectable weights for their age. Both seem pretty well all things considered although its very hard to see your babies so small and fragile and hooked up to so many machines, undergoing necessary but invasive procedures. It’s been very emotional. Yesterday I got some skin to skin with the bigger twin and even changed her diaper – big milestones around here. I’m also still in the hospital recovering from surgery, which is quite, well, different. More to follow soon.