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 come and write out my birth story and how that all happened and some of the moments of joy in the insanity. But as so often happens, events have overtaken things and last few days have been difficult. Cora, Twin A, just can’t seem to catch a break. Initially she was was doing well, but she has now been ventilated for several days, has had a lung collapse, and generally a tremendous amount of stress. We’re also in a bit of shock about other news we got about her, which I am not yet ready to talk about. I can’t wait until she is off some more of her tubes and I can hold her again. We keep thinking that maybe today will be the day, but so far we just don’t know.
Beautiful Beatrice, who was the twin who was ruptured for so long, is doing very well and when I called at 6 a.m., they said she’d had a great night. We anticipated her having lung problems due to PPROM, and she did at first, but she is holding her own and is breathing with just a little help, so we hope she keeps holding her own and wailing her little wee kitten cry at the nurses when she is annoyed.
What is tremendous is how much I love them both despite all the tubes and machines.
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.