I saw Zoe’s brain today… well on a screen anyway.
The last time I saw my girls’ brains, on a screen, they were 11 weeks old, or ‘term’ if you are working on corrected age.
The time before that, was the day I heard the words “they need to be born now, regardless of the dangers, it needs to be now.” And 24 hours later they were born, 11 weeks early.
Back when the girls were tiny, their prematurity and their twin-ness seemed to take over our entire lives.
The giant struggle just to beat the TTTS and have them both born alive, and then the struggle to get them through the weeks in hospital and the legacy of those things when they finally came home… back then it seemed like those things would always be enormous for us. Even as I watched them grow into happy, and more importantly, healthy and ‘normal’ toddlers, the fact that they were born early, still dominated our lives and my thoughts.
When they were little their ‘twin-ness’ was also such a defining factor in their lives. It dominated many many things that they did, in good and bad ways. The fact that they are identical twins seemed like it would always set them apart and be the first thing that people noticed about them and the most major thing in their lives.
When the girls were little I talked about, read about and wrote about their prematurity and their twin-ness a lot. I was one of ‘those mothers’, just a tad obsessed and over the top. I guess it was how I processed things, how I coped. I thought it would always be that way. I couldn’t imagine a day when those two things about my girls were no longer huge, all encompassing and dominant.
Today I chatted with psychologists and paediatricians and research nurses and cardiologists and it dawned on… the fact that my girls were born at 29 weeks gestation is not nearly so important any more. It is not so important when it comes to their health, and it is not so important when it comes to their daily lives. And the fact that they are identical twins, while still obvious, and still important, it is not so scary any more….
My girls have grown up. They are no longer tiny, unwell little babies. They are no longer preschoolers who can’t be apart from each other even for a minute. They are tall, lanky, happy, confident seven year olds and if you met one on the street you would have no idea of their beginnings.
And I have grown up. My world no longer revolves around how prem my babies were. My worries no longer include the fact that they are so very alike, and how that might impact them.
Beating TTTS and being born early will always have some impact on their lives, and mine, but it no longer dominates.
Being twins will always be an amazingly special thing that they have, that we have, but it no longer seems so huge and scary.
I will always walk past their bedroom as they play, or look in on them as they sleep, and stop and catch my breath. I will always be amazed that these two girls are mine, but I’ve walked that path, I’ve done that worrying, and now… we’ve moved on.
I’m so glad that they are all healthy and happy now! I loved reading this – my twins are just one, and we are just on the wind down from 3 monthly pediatrician appointments and I can finally see light at the end of the tunnel. It’s good to know that soon, I will be in the light and out of the tunnel altogether!
There really is light at the end of the tunnel…. way back when I thought I would always obsesses about this stuff… seems almost surreal now that it has become not such a big deal!
Isn’t it wonderful that when you look at them not that you wouldn’t know the struggles they went through? I am so thankful for the wonderful medical care you (and I) received. xxx
You know we bumped into Dr Sue right before I had Noey and she couldn’t believe how tall my girls were! She and Dr Mark stood in the corridor and took credit for how great my girls had turned out… LOL
I would so love to run into Sue again! I guess we can let them take credit for how great all our kids turned out. I shudder to think what may have happened without their expert care!
Beautiful post, so special to have travelled that journey and to be where you are now!
I could relate to much of your story above. Our daughter was born at 32wks, & is about to turn 4. While I am now involved with the Miracle Babies Foundation (provides support to parents & families of prem & sick newborns), my thinking revolves less around “is she doing/not doing X because she was prem”, justifying things to others, & germ control, & more about focussing on just how lucky we were. Not a day goes by when I don’t think about our journey, but the focus is now on how we can better support others that have been on this journey.
It’s wonderful to see your girls so healthy & smiling, you’ve done a wonderful job. I love your blog, keep it comin’..!
xo
I don’t blog about my girl’s early start and struggles much these days, but every now and then I think I should do it more… because it is a really great thing to help others who are on a similar journey. Good on you for taking such an active role!
I do that “where they came from” thing too. It’s hard to believe some days, although I was more frantic over the big twins being in the NICU than I ever was about Ivy and Noah. Not sure why, I was very out of it with the little twins who spent nine weeks in there and were much more prem than the biggies.
I need to remember to celebrate all of the good days more often.
Your girls are beautiful.
Gorgeous post, Kate, and gorgeous girls.
It’s so interesting how things that consume us at times can eventually become just memories.
lovely post. Thanks for sharing.
Getting caught up in things is part of life, experience and what makes it all different and challenging. :)
looking back and learning and reflecting is part of it too!
I can relate to this but perhaps more in the way Daisy can- and of course I don`t have twins. But there is light at the end of the tunnel and eventually the 1-3 monthly checks will stop- We are on every 3 months now. Shion was so small but now so big and to look at him you can`t even tell he is/was premmie because he looks so healthy. Sure he is a bit small against other 6 month olds but not by much and now even when I say old he is people don`t even usually comment on his size.
Great post Kate.
It’s a magic moment when your tiny prem looking baby just becomes a baby like all the rest of them….
Thanks for your wonderful post. I am a mum who is still in the worrying phase with an epileptic daughter and quarterly specialist appointments. Things are getting better, and your post made me realise there will be a time when the worry no longer defines me, my daughter, my family and our relationships. Thank you to you and your beautiful daughters.
For us, the difficult start my girls had and that legacy will never ‘go away’, but it is empowering to know that those things are no longer so dominant. I hope that moment arrives for you too….
Lovely post, having twins is so amazing and scary…I remember when I was pregnant with the girls I seemed to be in a perpetual state of fear for them. Everything I read was negatative every doctor I saw seemed to focus on potential problems or negatatives. One doctor even said to me because I wanted to try and deliver naturally if there were no complications close to the due date that there was a 2 out of 5 chance my second twin would die. I felt like that I am the girls had no chance of everyone being okay. I wish I could have read this then :-) Congratulations on an amazing journey and amazing girls xx
I hope somebody reads this now… somebody who’s just been told they are having twins, and all the risks that suddenly arrive with that statement. And somebody who’s just been diagnosed with TTTS….
Back when I was first diagnosed I couldn’t find a single story where both twins survived, not one. Of course in the last 7 years technology has improved and there are much better ways to treat TTTS these days and a much better survival rate… but it is still scary, very scary. But here I am, shouting it out, sometimes your wishes really do come true and everything really will be ok!
Good for you Kate! My son was born at full term weighing only 1850 grams. He turns 3 in a week, and although he is still so much smaller than his peers, he is so healthy and happy. I never thought I would say it, but I can feel we’re moving on from worrying about it. Yes, he’s small, but I can see a time in the future when we don’t even think about his size at all. Because in personality, the kid is HUGE!!
Great story, thank you for sharing. Your girls are gorgeous. :)
My girls were 960 grams and 1.13 kgs at birth. When they were little we always worried about their weight. When they got bigger we were still worrying. Now they are seven, tall but still skinny and when Dr’s remark about how little they weight compared to their height, these days I laugh…. I’m no longer the least bit concerned about their weight, and that is so liberating isn’t it!