As promised yesterday, here is the second-half of the two-way ‘interview’ that Alana and I have contributed to. Alana is a mother of twin toddlers, Madeleine and Reid, who born prematurely at 25 weeks; she can be found on Twitter @alsoalanaromain. She was interested in my experience of life having been born prematurely, which you can read here on her blog Rockstar Preemies, and I wanted to know about her experience of having premmie twins. I’m very grateful to Alana for sharing her and her family’s experience.
There is evidence to suggest that twins are more likely to be born prematurely than singletons, did this ever cross your mind or was it mentioned to you when you found out that you were expecting twins?
I knew about the risks in an abstract sense, but in my head I thought, “well, plenty of people have full-term twins!”. I remember hearing at one point about a friend-of-a-friend giving birth to her twins at 34 weeks, and I just thought, “oh, how terrible, please don’t let that be me”. Of course, now I look back and think I would have done anything to make it to 34 weeks!
I cannot imagine the shock of suddenly finding yourself in NICU with twins. For those of us lucky enough not to have experienced such trauma, can you even begin to describe what it is like?
It is kind of beyond comprehension, even while you are going through it. The day I gave birth, I was taken down to the NICU to see Reid and Madeleine for the first time, and it was the greatest, most heart-exploding moment, while at the exact same time being completely earth-shatteringly terrible. They were so small, couldn’t open their eyes, couldn’t breathe on their own, looked so sick and frail and sad, and I wanted to scream and cry and do anything to fix it and yet at the same time I honestly thought they were so beautiful and I felt like the luckiest human in the world that they were mine. I think that sums up what the NICU experience really is – feeling the most intense joys and fears and sadness simultaneously, every day, while also kind of becoming numb to it because you have to figure out a way to wake up every morning and do it all over again.
Many parents in that situation say that they have no idea how they coped, they just did. Even if you felt the same way at the time, looking back now what advice you would give to parents who find themselves in a similar situation?
I absolutely think that all the time, “how did we manage that?!”. I often think that getting through is a matter of turning off your brain as much as possible, or else it would be too overwhelming, and you need to hold it together so that you can be there for your child.
There is no easy way through the NICU, but my advice is always the same: remember that nothing you are feeling is unusual or weird. There is no right or wrong way to respond to your child being sick. The NICU can feel isolating, but reaching out to other people who are supportive and who understand is valuable. And remember that you will not be there forever, as hard to believe as that can feel sometimes.
Life in NICU is tough for babies, parents and families; not only are babies very ill, but parents cannot do many of the things that they were expecting to, like just holding their babies. How did this affect you all and what would you say to parents experiencing this now?
It’s heartbreaking, but in some ways I find it more painful to remember those things NOW than I did at the time. You really do end up compartmentalizing in the NICU to make it through the days, and so the “normal” parent things don’t even feel like they apply to you anymore. But now, thinking about all the time I spent cuddling my children while they were attached to machines, thinking about all of the procedures and tests and surgeries, thinking about how we would have to leave them each night to go home? It makes me cry to think about now, even though at the time it was just our daily life.
Compared with parents of singleton prem babies, do you think that the ’emotional rollercoaster’ of NICU was made more acute by having twin prem babies, or was it just a different experience?
I would imagine the feeling is the same – the same fear, the same questions, the same sadness. The same desperate longing for things to somehow be okay. The only time having two babies in the NICU was really an issue for us was when Madeleine had to be sent to another hospital for surgery, and when Madeleine was discharged home and Reid was still in hospital. The back and forth, trying to give both babies equal attention…it was incredibly stressful, and was a very, very emotional time for me as a mother to know that I couldn’t be with both of my children at the same time.
(At the same time, I was lucky to have two relatively healthy babies come home at the end of it all. Had we lost a twin along the way like many parents unfortunately do, I’d probably answer that question differently.)
Although the NICU is an incredibly stressful place to have to be, I’ve heard from many parents that coming home for the first time, albeit a joyful experience, can often be even worse for the first few weeks. Does this reflect your experience of bringing Madeleine and Reid home and first caring for them there?
It is very scary to be sent home! You get used to having the nurses to help you, and you get used to thinking about caring for your baby in a very specific way – measuring their feeds, tracking everything, giving meds, taking their temperature and blood pressure, knowing their oxygen saturation at any given moment. I remember once asking a nurse what I was supposed to do when feeding the twins at home – how would I know how much to give them? The nurse said, “well, if they’re still hungry, they’ll cry”. That honestly hadn’t even occurred to me!!!! They’ll just cry! It’s as though you have to “unlearn” NICU parenting when you get home and adjust to being a mom like anyone else. It is a very big transition to try and put your “NICU Mom” self on the shelf and be a “regular mom” instead.
There are many books on pregnancy, some several hundreds of pages long, but most contain very little information about the possibilities and realities of having a premature baby. Why do think this is? Do you think that such information would have prepared you any better?
I want to say it would have, but the truth is, I don’t think you can really understand the reality of prematurity until it happens to you. A lot of people think preemies are just small babies, that they just need time to grow and catch up, but that really isn’t it at all. Prematurity causes lots of problems, and babies die because of it. It’s a scary thought, and as a pregnant woman, you don’t want to think about all the things that can go wrong. Even though I knew I was having twins, and even when I knew I’d likely give birth early, I still didn’t really think about it. It’s a coping mechanism I think. You can’t really prepare yourself.
Lots of parents are blogging nowadays, including lots of parents of preemies, why did you decide to share your experiences with the internet and the wider world?
There was actually a very specific reason! When we first got the news that Madeleine had a brain bleed that could need surgery, I started Googling desperately, trying to find other stories of babies who had been through the same thing. I found Life With Jack, and Jack had also had hydrocephalus and a shunt (this was before Maddie had her shunt placed) and I read his story voraciously – I just needed to know everything, so that I could begin to envision what our life might look like. As we spent more time in the NICU, I realized I wanted to share our story in case there were other mothers out there up late at night Googling about their own preemies. I wanted to help provide a resource for other parents who were as scared as I was, and to help try to normalize the NICU experience as much as possible (I think the only thing worse than having a baby in the NICU is feeling like there is no one out there who understands what it’s like).
Lastly, with Madeleine and Reid now growing and doubtless energetic toddlers, what do you think about the future? Do you think that the tough start you’ve all had will change the way you will bring them up compared to what (if any) plans for parenting that you may have had?
I think about the future all the time. I hate to say this, because it sounds so negative, but I think the big difference is that, now, I know first-hand that bad things really do happen all the time. It’s natural for parents to worry, but I definitely think I carry a lot of extra fears about something happening – waiting for “the other shoe to drop”. I see Madeleine and Reid thriving and healthy, and yet I don’t know if I’ll ever feel like we are out of the woods. I worry about them going to school, I worry about their health, I worry about their development. I always feel like we are one doctor’s appointment away from being given terrible news. It is a constant struggle, because I don’t want it to affect the way they see themselves as they grow up. I realize now that the trauma of something like an extremely premature birth is something that lingers with parents for a long time after the initial impact has subsided.
At the same time, I think I appreciate motherhood more than I might have if they’d been born healthy. I know now that everything is a gift, every amazing moment is worth celebrating, because it was never guaranteed. When you get pregnant, you think you want to have a perfect baby, you are so afraid of something being wrong. But when things actually DO go wrong, you come to a point where you realize that you’ll take ANY outcome so long as they are alive. As much as I’d never wish my experience on anyone, I’m grateful that I was able to learn that so early on, because it’s helped me to see my children for who they really are, instead of some idea about who I thought I wanted them to be.
Madeleine and Reid