Questions and Answers

After reading a fellow preemie mom's journal entry about 'what not to ask a preemie mom', I was so moved that I felt the need to also write something. I've been so frustrated sometimes that some people don't understand our situation at all. Instead of getting mad, I should of course try to explain... because people can't be expected to understand something they don't know anything about. Basically I don't care if people ask me questions and I am more than happy to answer them, but I don't appreciate when people make comments as if they totally understand how I feel (or the opposite, totally disregard my feelings on a sensitive subject). Like someone saying that 'the girls are just a bit small...they'll be fine.' Believe me, it's more than being just 'a bit small'. Or saying, 'my friend had a baby 5 weeks early...maybe you should talk with her because you have a lot in common.' Arrgghhh....5 weeks early and more than 15 weeks early is not even CLOSE to the same thing. Most people are lucky enough not to have had the experience of having a micropreemie (not just a preemie, a MICROpreemie...less than 2 pounds) themselves...99.2% of the pregnant ladies in Finland anyways.

I thought I would provide my own 'question and answer' session here....providing both the questions and answers myself on issues that have been on my mind. Basically this whole entry is just going to be a random outpouring of some of the thoughts and emotions I've had over the months, but hopefully it will provide at least a bit of understanding (although the people reading this are probably the ones who already understand :)). I'm not sure that all micropreemie moms would agree with my answers here because everyone is different, but this is how I feel.

What do you say to a friend who has just had a micropreemie?

I think something along the lines of 'I'm so sorry' or 'how are you doing?' or 'what can I do to help?' or 'I'm praying that everything will be ok' would've been the nicest things to hear at that time. At least I definitely know what NOT to say. Don't say congratulations. I remember right after the girls were born, the doctor and midwives said 'congratulations' to me and I felt so mad that I will remember it forever. I looked at them totally confused and wondered, 'what did they just say???' Why in the world would you say congratulations to someone who just had 2 babies who might die or in the best case might have lifelong health and learning issues? Why would you say congratulations to a couple who will watch their babies through an incubator and basically live in the hospital for the next 125 days? Why would you say congratulations to a woman who was just screaming in devastation after seeing her lifeless, purple babies being taken away? Congratulations is definitely not the right word. Definitely not. When a micropreemie is born there is absolutely no reason to celebrate. The whole situation is completely devastating and it is NOTHING like the normal birth of a baby. Congratulations just doesn't fit. Congratulations is for happy moments.



So the girls are home now and everything is going well...they're going to be totally fine and ok, right?


Oh dear....how do I start? First of all, if people think this then it is mostly my fault. My Facebook status updates definitely focus on the positive. I mean, who wants to be bombarded with gloomy messages like, 'I just spent 2 hours reading about brain damage in preemies who have had brain bleeds and I'm really scared' or 'one of the girls has been doing something a bit strange' or 'I have been crying this whole week because I'm so lonely and want to take the girls out.' Of course I try to focus on the positives. Yes, the girls are doing really well CONSIDERING how they started their lives. They don't have a lot of the issues that many micropreemies have. But no, life is definitely not 'normal' for us and we still have a really long road ahead. The girls both had bleeding in their brains and Olivia has some empty space in parts of her brain from the scarring...so there are many worries. Will they have normal intelligence? I don't know. Will they be able to walk? I don't know. Will they be able to actively run and play? I don't know. Will they be able to see and hear normally? I don't know. It appears that there are at least no major problems at this point besides some stiff muscles, but only the future will give us answers. Being a micropreemie is a very serious thing and doesn't just 'go away' once they get a bit bigger. That's why we have visits at the hospital quite often...at least until the girls turn 6. I have learned to push some of the questions and worries to the back of my mind so I can enjoy the present with the girls....because the girls are wonderful. They are wonderful now and they will always be wonderful no matter what comes our way. We can deal with the future when it comes.


Why do you keep saying that they are X months old, but actually X months old? Isn't their birthday their birthday?


Yes, April 3rd will always and forever be the day when we celebrate the girls' birthday. And in a few years they will (with good luck) have caught up with their peers who were born in April. But for now and approximately the next 2 years, the girls' developmental age is calculated from their due date, July 20. And this is not just me calculating it this way....this is how the doctors calculate their age. If a baby is born a week or two early or late (or even a month early), it doesn't make a big difference and you don't need to consider the due date as their birthday. But in the case of micropreemies where the babies are born almost 4 months early (only a week or two later than what would be considered a miscarriage), you cannot start their development from there. This should make sense, if you consider that they only had 5 months to develop in the womb...not 9. If you are born with your eyelids fused shut, skin as thin as plastic wrap, bruised and purple and traumatized from your early birth, have bleeding in your brain, are less than 1 kilo, and a machine is breathing for you, then the development does not start there in the same way that any other 'newborn' baby would begin to develop. They are just continuing those last 4 months that should've been in the womb all safe and cozy instead in a hospital, very sick, very small, and fighting for their lives. And in that case, even the due date as the beginning of the developmental age is a bit of a stretch, because the babies are usually still quite weak then and their little bodies have gone through so much. They need time to recover....sometimes years. I find it amazing that some people don't get this. Even if you haven't gone through this, it should make some sort of sense. To me it makes total sense. The girls were not just 'a bit small' when they were born. Half of the babies born at this stage of the pregnancy do not survive.



I only have a bit of a runny nose and a small cough but I feel totally fine...can I come and visit you guys?

NO NO NO NO NO NO!! I cannot emphasize this enough. Having visitors here for me is pretty stressful, even when I know that everyone is healthy and fine. And that's because even healthy people carry tons of germs with them....germs that can get the girls sick. And a lot of times you are actually sick before you know you are. Most healthy adults have pretty strong immune systems. The girls have basically NO immune system. The germs that are giving you a 'small' runny nose can give the girls a major cold that can lead to ear infections and pneumonia. Pneumonia in any baby is scary, but in babies who have BPD (a chronic lung disease), it is life-threatening. So no, you cannot come here if you are only 'a bit' sick. Matias does bring germs home from daycare with him and the girls have gotten sick a few times (thankfully nothing too major so far), but we of course cannot prevent Matias from living with us and touching the girls. That's why we have to be careful about the things we CAN control. I don't want this to discourage people from coming to visit (I really love to have company!!!), but I cannot relax if someone even 'sounds' a bit sick or sniffly. So please come only if you are 100% healthy. And please forgive me if I ask you every time before we meet, 'are you sure you're not sick?' I have to ask because some people don't remember. If it's not something you have to think about every day, it's not a big issue. To us it is, so we have to ask. Yes, I am a bit paranoid, but that's because if I have to spend even one more day or night in the hospital watching one of my babies suffer, I seriously might have a nervous breakdown.

Why don't you ever answer your phone or e-mails anymore?

Ok, this isn't about having micropreemies. This is just about having 3 kids within a little over a year. If you have a little boy who just turned 2 and two small babies, I can almost guarantee that you wouldn't be asking me that question....because you probably wouldn't have time to call me either. :) I promise that I am not ignoring anybody and I will always try to answer when I can. The fact is that in some days I don't have a free moment. And some of that is of course by choice, that I choose not to stop in the middle of reading a story to Matias to answer my phone or I choose to cook dinner instead of talking on the phone, but most of the time I honestly don't have time or energy to talk. If I'm in the middle of feeding or changing the girls, I don't answer my phone (and that's at least 2 hours of my day right there), if the girls are sleeping I can't talk on the phone anymore because our apartment is so small and they tend to wake up (and usually I'm busy cooking or cleaning like a maniac during their naptime because it's my only 'free' time of the day), if I'm outside with the kids I can't answer my phone because Matias is loose on his standing board and could easily run off into traffic if I'm not paying attention, if any baby is fussy I will not answer my phone because it's not easy to talk through the noise, and after all the kids are in bed at night and everything is tidied up, then talking on the phone is usually the last thing that I want to do. Maybe that's selfish, but I feel like I run a marathon every day and by 8.00 p.m. I am honestly exhausted. And the next day we might be at the hospital and I can't use my phone, then I have 3 missed calls and don't have time to answer to everyone. I promise I will call you back when I can!! Or just keep calling me....odds are that I will eventually have time to answer. :) This is just a short time in my life when I have 3 very small children who all need me very much and my 'before-I-was-a-mom-of-3' life has kind of been put on hold for awhile. Please be patient. I know I will have lots of time (or anyways more time) for phone calls in the future!

Are you guys going to have more kids?

I ask myself this question every day, but no....we will not have more kids. I cannot take the risk that this will happen again. If they don't know what caused the babies to come so early, then how can anyone guarantee that it won't happen again? I would be so super-paranoid the whole pregnancy, that it would just make a stressful mess of everything. So no....not now and not in a few years. We are done done done. And that is final. And 3 is enough. Really. I know that in a few years when things settle down and life gets easier, I will want a little baby to snuggle with again (and oh, a little brother for Matias would be so nice!), but I try not to let myself even think about it. Because with our luck 'just one more' might mean triplets. Yes, I am sad that all of my pregnancies came and went in less than 2 years, but there are many benefits to that as well (I am making a list for a future blog entry :)).

And just some final thoughts....


I have been sitting in our apartment for 6 months and have had a lot of time to think about things. Some days I feel really angry ('nobody understands'), some days I feel really sad ('why did this happen?'), some days I feel extremely worried ('are the girls really ok?'), some days I feel so lonely ('I can't manage looking at these walls for even one more day').....but most days there are many moments that I am so happy I feel like my heart will burst. When Sofia laughs, it sounds like a little piece of heaven. When Olivia smiles, I totally get what the term 'tugging at your heartstrings' means because I feel it. I feel it every single time she smiles. I get tears in my eyes and a lump in my throat...because every time she smiles I am reminded how close we were to never seeing that smile....and what a horrible, tragic thing that would've been. So we are lucky. We are so very lucky. In the beginning when things were pretty rough, I was wondering if my getting pregnant with the girls was a mistake. If we would've waited, then maybe this wouldn't have happened. If it would've been just one baby and not two, maybe this wouldn't have happened. But the fact is that I would not change anything. Although I wouldn't purposely choose the suffering that we all have gone through, that is what makes us so happy today. Without heartache, you can't really understand or appreciate what it means to be happy. And I wouldn't trade Sofia or Olivia for anything...they are both just perfect and are so special. I can't even write this without getting tears in my eyes.



Ok, that's enough for this blog. The next blog post will probably be about Valentine's Day....because I happen to know a little something about love. :)