This is the second world prematurity day that we are here for since Roo was born. Last year, I was still in a fog to do much other than have it cross my mind. This year, I’ve been reflecting on it much more.
We are one of the lucky families. The toll has been great on us but much easier than other families I know in real life or online. However, our story is our story and the toll has been great.
I never thought much about prematurity. It never crossed my mind that Roo would be premature. But, who does like any other disease or illness or struggle?
For Roo, the toll has been ongoing medical and physical challenges. From her NICU stay to the reflux to the surgery for her crossed eyes to the weekly physical therapy to her eczema and food allergies, it has been one thing after another. I wish my little girl could get a break.
Yes, all of those things could still have happened to her if she was full term but I think many of her challenges are tied into her early birth.
Even with all of those challenges, Roo is the happiest, sweetest baby I know (I’m biased!). She is sensitive and shy but she is a caring and sweet little girl who rolls with the punches and takes the challenges head on. She doesn’t know life to be any differently and for that I’m grateful that she doesn’t realize that all little kids don’t need physical therapy every week.
As for me, the impact is greater. Emotionally, I was not prepared for the changes to my life. I know that life changes after a new baby arrives but life with a preemie changes even more. It has taken a toll on me as I struggle with depression. It has taken a huge toll on my marriage. MH and I struggle with some issues separate from life changing with a preemie but I think if the stress of dealing with the challenges of a preemie baby weren’t there, it would be easier to work on and fix those other problems. But, there is only so much room emotionally and psychologically to deal with challenges and we have to put Roo first right now. I worry and wonder if our marriage will survive. I now understand why parents of children with special needs have a harder time keeping their marriages intact. I don’t want to fall into the category where we fall apart. Some days I think it would be easier on my own. That makes me sad.
Adding to the stress, we were not prepared financially for the costs of having a premature baby. Our health insurance is great but has a very high deductible and we are afraid to make any changes for fear of losing access to the great providers we have established relationships with already. That high deductible means we pay a huge sum of money out of our pockets before insurance kicks in, which means any inkling of extra money is gone. PT alone is $500 a month or so that would have gone into savings. It’s hard. And, MH alone makes great money. With my extra income (I actually make more $$$) than MH, we will be able to get back on our feet more quickly and start to make up for the lack in saving the past year and a half.
Had we known what we were facing, in hindsight, we would not have purchased a 2,000 sq. ft. 4 bedroom house in the suburbs where we needed to buy another car, pay for lawn service because we have no time to care for the yard because we are busy caring for our child, etc. We would have not needed the fourth bedroom because we are not having another child that ER thought we might have tried for before all of this . We have three rooms in the house that virtually are unused because we haven’t had the time or the money to do anything with them. I love our house but we may need to move.
I’ve been slowly losing friends. It is hard to maintain friendships with old and new friends when I’m depressed and focused on Roo. My old friends were used to me calling them and returning calls. Now I’m too exhausted and I am also tired of hearing their words of “encouragement”. They don’t understand because they don’t have a preemie in their life. Distance makes it hard. I used to be able to hop on a plane and visit them but with our extra tight finances that is impossible. So my long time friendships are feeling very distant and farther away than ever. My new friends don’t understand either. Plus, I will make a play date with someone and then they or their kid gets a runny nose and so se have to reschedule. It’s a challenge. I’m feeling lonely. I know this will get better as Roo gets older and her needs diminish but I feel like now is a time when I need those friendships the most and I don’t have the energy to feed them.
This is a long-winded way of saying that life with a preemie changed in ways that go beyond the physical needs and challenges. The challenges are far-reaching. Life is hard no matter what. And, as one challenge ends another will surface. Overall, my life isn’t bad. I’m dealing with first world problems, which aren’t really too hard in the bigger picture. I should quit my whining.
Getting back to the point, World prematurity awareness day is a reminder that millions of babies around the world are born too early. We all need to be aware of the issue and do our part to help stop this problem. Visit the March of Dimes website and make a donation to their efforts to find a solution to ending prematurity. Many premature births like Roo’s happen for no rhyme or reason – even with perfectly healthy pregnancies and mamas like me. We were lucky to have world-class providers keep our little one with us.
Thanks again for following, reading, supporting Roo and me!!
(Top photo is of Roo in NICU towards the end of her stay. The bottom photo is of Roo a couple of weeks ago!)