Preemie retreat

We were invited last fall to attend a retreat this February for families of children with BPD (a chronic lung condition caused by prematurity), and we were happy to accept.  So last week we spent 6 days in a retreat center basically in the middle of nowhere.  We were housed in a beautiful and modern 'design' house and spent our days in lectures and discussions while the kids all played together in a playroom full of babysitters.  All in all it was a great week...so nice to spend time together as a family, to get a change of scenery, to talk with people who completely understand our situation, and to let the kids get used to spending time with other caregivers than mommy and daddy.  We didn't learn too much that we didn't already know, but I thought I would share some tidbits of info and some new thoughts and feelings that came up.

We were given an article that had all of the most current statistics in Finland (which is, by the way, one of the best countries in the world in the care of premature babies) and the numbers made me realize again how very lucky we are.  Currently only .5% of babies born are under 1000 grams at birth.  Point 5 percent!  Nobody ever thinks something will happen to them if those are the odds. Quite a large percentage of these babies are not born alive, and quite a large percent of those that are born alive don't survive.  The actual amount of babies born in Finland who are less than 1000 grams and survive is .2% of all births. Talk about defying the odds!

Something new I learned is that premature babies as adults have a greater risk for heart and circulatory problems, as well as diabetes.  It's very important for them to lead a healthy lifestyle.

Studies have also shown that premature babies are really strong-willed, determined, and stubborn as small children (of course they are, the little fighters!), but as adults are calmer and aren't big risk-takers.  They tend to be early birds, loyal, conscientious, and in stable long-term relationships.  Not bad qualities at all. :)

As many people know, one of the biggest issues for preemies is their lungs.  The lungs are not ready to work outside the womb when babies are born 4 months early, so a ventilator is breathing for them for the first weeks/months of their lives.  Sofia and Olivia were on the ventilator for about 5 weeks.  The ventilator saved their lives but also permanently damaged their lungs.  Many preemies end up with BPD (bronchopulmonary dysplasia), which is a chronic lung disease.  We were reminded in several lectures that the girls' lungs will never be healthy lungs.  They will ALWAYS have BPD.  Their lung tissue is scarred.  The new tissue that has grown is healthy and fine, but that scarred tissue will always be there.  The girls will more than likely never be top athletes or be able to run marathons.  It makes me sad to hear that there is something my girls won't be able to do (especially if they would have a dream to do that), but with the odds they have already overcome I think anything is possible.  I don't think Sofia and Olivia will ever listen if someone tells them that they can't do something!

A lot of the other info was just basic facts that we have heard since Day 1.  The girls are likely to have developmental problems along the way.  Their development can be a bit delayed in both gross and fine motor skills, and learning problems will probably become evident only when they start school.  It is quite likely that Olivia will need speech therapy because she has low muscle tone in her face, as well as possible continued physical therapy.  Our road is not over, although I think we have passed most of the biggest bumps already.  The girls are alive and they can walk, they can talk, they can play, they can laugh, they can eat (a lot!) by themselves, they can give hugs...and they are happy.  They are so happy!

Tero and I would both wish that doctors will start studying more closely the cause of premature births.  The care for premature babies at this point is great, and of course it's important to keep developing that as much as possible...but it would be so good to stop premature births in the first place.  We were not given any information about what caused Sofia and Olivia to come so early, and I feel like nobody ever really investigated in detail.  I actually only had 3 health checks before the girls were born, which is very little considering a twin pregnancy is in any case a 'risky' pregnancy.  If a few more tests could be done throughout the earlier stages of pregnancy, then after a preemie is born the doctors can look back and see if they can find some kind of link between all of the mothers and their test results.  Afterwards, the mother of a preemie could be interviewed in a bit more detail about how the pregnancy went, how active she was, what kind of aches and pains she had, how sick she felt, etc.  Nobody asked me any of these things.  I'm pretty sure there is some reason, and not just bad luck.  It is frustrating to not have answers to such important questions and to just accept when the doctors say, 'We don't know.'

Talking about the preemie stuff all week was a bit emotional for me, so Tero and I had some pretty good disussions in the evenings. I feel nowadays that it is even harder for me to talk about those first moments and our 4 months in the hospital than it was in the beginning. I used to explain to people all the time what was happening in the NICU, but now I sometimes can't even tell that my girls were born too soon without feeling a lump in my throat. That doesn't make sense to me, but after talking with Tero I formed my own theory. Now when I see the girls- so beautiful, so happy, learning so much- I am realizing more and more every day how much I almost missed out on. These perfect little girls almost died! I don't think we knew how close it was (probably due to a combination of shock and denial), or at least we didn't really think about it all the time. We tried to focus more on the future. But now we know. Of course it would have been devastating if our tiny newborn babies would have died, but now when we know them and we know the joy that they have brought to our lives, it is almost unbearable to think of what almost happened. I honestly at this point don't know if I will ever recover from the trauma of those first few months, but I hope it will get easier!  It is at least comforting to know that after what we have been through, I think we can handle almost anything that comes our way. :)