Challenges & changing perspective
Our sweet Jack is 6 months old. I wanted to take some time to reflect on the challenges we've faced over the last year and how my perspective has changed as a result. I also want to raise awareness about the types of challenges parents of preemies face. These challenges are not unique to us. In fact, the challenges we face are minuscule compared to parents of babies born earlier than Jack. Parents of micro-preemies face challenges that are likely to stick with them for the rest of their lives.
Financial Burden
I write about this particular challenge not to garner sympathy or charity, but to raise awareness about the problems with our health care system (I don't know the solution) and how we view pregnancy/maternity leave in the workplace.
I am public school teacher and because my husband is self-employed, the school district's health insurance is the only real option for me and subsequently for Jack. I am on the best available healthcare plan offered in my district. To insure Jack and me, I spend $1,000 a month on healthcare premiums. (A little under 25% of my income.) I also pay $50 a month for disability insurance. Thank goodness for these two things or I honestly don't know how we'd overcome the financial burden of having Jack.
As it is, we are facing a total of a little over $20,000 in medical charges that are our responsibility. We've paid $2,000 in miscellaneous bills already, are on a payment plan for the $6,000 bill for Jack's NICU doctors, and are still negotiating with the hospital for the $13,000 we owe them. It baffles my mind that we are looking at another car payment in medical bills for years, despite spending $1,000 a month on healthcare. And what we owe is a fraction of the cost if we didn't have insurance. Our grand total was about $250,000 before insurance.
In addition to the overwhelming amount of bills, there is also the fact that I was out of work for 4.5 months while in the hospital and then home with Jack. All of this was unpaid leave. My disability insurance paid me $2,000 a month until 6 weeks after Jack was born. Again, thank goodness for that!
I am also extremely lucky to have a job that didn't fire me after I exhausted my FMLA time. They would hold my job through December, but I returned midway through the month because I needed to financially. At the time I returned to work, Jack was developmentally 4 weeks old.
Actual Age vs Adjusted Age
Everything with a preemie for the first 2 years is based on the due date and not the birth date. So we are constantly thinking of two ages. Right now Jack is 6 months (+ 1 week) actual age, but 4.5 months adjusted. It's really difficult not to compare your child with others and can start to feel a bit defeating when you see so many younger babies doing so much more than your own. You have to constantly remind yourself that developmentally your child is actually younger than they are.
This week we had Jack's 6 month check-up. The doctor informed us that he is acting exactly like a 4 month old (which is his adjusted age). So we save the 6 month handout for 2 months from now and pull out the 4 month handout to see what he should be doing.
In the scheme of things, this isn't a big deal. But it's a mental challenge for me. There's also the constant wondering about when he will catch up and feeling the need to explain to others why he isn't doing things that other 6 month old babies would be doing.
Weight Worries
We are super lucky that Jack has been packing on the pounds. He's gone from 4 pounds to 14 pounds in 6 months and is close to outgrowing his 3 month clothes. We only had to do weight checks for the first 2 months. We also got the word last week that we can stop feeding him higher calorie milk. Since he was born, we've been adding extra formula to his milk to make the calorie content higher.
He hasn't made it past the growth curve for his weight yet, but he's a lot closer than he was at birth! He finally made the growth chart for his height and head circumference.
Post-Traumatic Stress
Thankfully my experience with this has been pretty mild compared to what it could be. But I won't pretend that I haven't had some stress/anxiety that stuck with me. For a long time after Jack was born, I would relive the fear of my bleed while I was in bed at night. I would agonize over what would have happened if I'd been out of town when I had the bleed. I would imagine what would have happened if I hadn't been diagnosed prenatally and tried to have Jack naturally.
Sometimes when I'm washing dishes with Dawn soap, I'll get a strong flashback to washing pump parts in the NICU. The smell of the dawn mixed with the sound of the water will take me back to all the hours we spent up there.
Jack got his first cold last week and I was terrified about it turning into RSV. This was something that was so serious in the NICU. Our pediatrician finally looked at me and said "He's not in the NICU anymore. That's in the past. It's over. He's a healthy, normal baby. Let it go." It was a gentle reminder of how all the fears that accompanied his entrance into this world can stick around, even when he's been so healthy the entire time.
Changing Perspective
This entire experience has changed my perspective so much. Up until 25 weeks into pregnancy, I was completely healthy with a total normal pregnancy. We had a healthy emergency fund and our biggest concern was getting a nursery set up and what daycare we were going to use. All it took was waking up in the middle of the night to blood to change absolutely everything. It was a reminder of how quickly things can change in life.
People often asked me how I made it 8 weeks in the hospital stuck in bed. The truth is it was hard, but it also wasn't. Every day in the hospital was saving Jack a lot of time in the NICU. I kept a gratitude journal in the hospital and would write down 10 things every night that I was thankful for. Even in difficult times, we can find things to be thankful for. This is a perspective I have tried to take with me.
While we have faced challenges with Jack, we are so lucky to have a happy, healthy baby. This is something I am thankful for every single day.
We also realized how many wonderful people we have in our lives. We were showered with love from friends & family near and far. We also made new connections with people. Everyone looks at me like I'm crazy when I tell them I miss the hospital. The nurses and doctors were such a big part of my life and I miss seeing them on a regular basis.
How you can help
If you've read this far - wow! I have a fundraising page for March of Dimes to help prevent prematurity so other families don't have to experience the challenges and get to just know the joy of a happy, healthy baby. Click here to donate: https://www.marchforbabies.org/sallykbarnard
Financial Burden
I write about this particular challenge not to garner sympathy or charity, but to raise awareness about the problems with our health care system (I don't know the solution) and how we view pregnancy/maternity leave in the workplace.
I am public school teacher and because my husband is self-employed, the school district's health insurance is the only real option for me and subsequently for Jack. I am on the best available healthcare plan offered in my district. To insure Jack and me, I spend $1,000 a month on healthcare premiums. (A little under 25% of my income.) I also pay $50 a month for disability insurance. Thank goodness for these two things or I honestly don't know how we'd overcome the financial burden of having Jack.
As it is, we are facing a total of a little over $20,000 in medical charges that are our responsibility. We've paid $2,000 in miscellaneous bills already, are on a payment plan for the $6,000 bill for Jack's NICU doctors, and are still negotiating with the hospital for the $13,000 we owe them. It baffles my mind that we are looking at another car payment in medical bills for years, despite spending $1,000 a month on healthcare. And what we owe is a fraction of the cost if we didn't have insurance. Our grand total was about $250,000 before insurance.
In addition to the overwhelming amount of bills, there is also the fact that I was out of work for 4.5 months while in the hospital and then home with Jack. All of this was unpaid leave. My disability insurance paid me $2,000 a month until 6 weeks after Jack was born. Again, thank goodness for that!
I am also extremely lucky to have a job that didn't fire me after I exhausted my FMLA time. They would hold my job through December, but I returned midway through the month because I needed to financially. At the time I returned to work, Jack was developmentally 4 weeks old.
Actual Age vs Adjusted Age
Everything with a preemie for the first 2 years is based on the due date and not the birth date. So we are constantly thinking of two ages. Right now Jack is 6 months (+ 1 week) actual age, but 4.5 months adjusted. It's really difficult not to compare your child with others and can start to feel a bit defeating when you see so many younger babies doing so much more than your own. You have to constantly remind yourself that developmentally your child is actually younger than they are.
This week we had Jack's 6 month check-up. The doctor informed us that he is acting exactly like a 4 month old (which is his adjusted age). So we save the 6 month handout for 2 months from now and pull out the 4 month handout to see what he should be doing.
In the scheme of things, this isn't a big deal. But it's a mental challenge for me. There's also the constant wondering about when he will catch up and feeling the need to explain to others why he isn't doing things that other 6 month old babies would be doing.
Weight Worries
We are super lucky that Jack has been packing on the pounds. He's gone from 4 pounds to 14 pounds in 6 months and is close to outgrowing his 3 month clothes. We only had to do weight checks for the first 2 months. We also got the word last week that we can stop feeding him higher calorie milk. Since he was born, we've been adding extra formula to his milk to make the calorie content higher.
He hasn't made it past the growth curve for his weight yet, but he's a lot closer than he was at birth! He finally made the growth chart for his height and head circumference.
Post-Traumatic Stress
Thankfully my experience with this has been pretty mild compared to what it could be. But I won't pretend that I haven't had some stress/anxiety that stuck with me. For a long time after Jack was born, I would relive the fear of my bleed while I was in bed at night. I would agonize over what would have happened if I'd been out of town when I had the bleed. I would imagine what would have happened if I hadn't been diagnosed prenatally and tried to have Jack naturally.
Sometimes when I'm washing dishes with Dawn soap, I'll get a strong flashback to washing pump parts in the NICU. The smell of the dawn mixed with the sound of the water will take me back to all the hours we spent up there.
Jack got his first cold last week and I was terrified about it turning into RSV. This was something that was so serious in the NICU. Our pediatrician finally looked at me and said "He's not in the NICU anymore. That's in the past. It's over. He's a healthy, normal baby. Let it go." It was a gentle reminder of how all the fears that accompanied his entrance into this world can stick around, even when he's been so healthy the entire time.
Changing Perspective
This entire experience has changed my perspective so much. Up until 25 weeks into pregnancy, I was completely healthy with a total normal pregnancy. We had a healthy emergency fund and our biggest concern was getting a nursery set up and what daycare we were going to use. All it took was waking up in the middle of the night to blood to change absolutely everything. It was a reminder of how quickly things can change in life.
People often asked me how I made it 8 weeks in the hospital stuck in bed. The truth is it was hard, but it also wasn't. Every day in the hospital was saving Jack a lot of time in the NICU. I kept a gratitude journal in the hospital and would write down 10 things every night that I was thankful for. Even in difficult times, we can find things to be thankful for. This is a perspective I have tried to take with me.
While we have faced challenges with Jack, we are so lucky to have a happy, healthy baby. This is something I am thankful for every single day.
We also realized how many wonderful people we have in our lives. We were showered with love from friends & family near and far. We also made new connections with people. Everyone looks at me like I'm crazy when I tell them I miss the hospital. The nurses and doctors were such a big part of my life and I miss seeing them on a regular basis.
How you can help
If you've read this far - wow! I have a fundraising page for March of Dimes to help prevent prematurity so other families don't have to experience the challenges and get to just know the joy of a happy, healthy baby. Click here to donate: https://www.marchforbabies.org/sallykbarnard
Love your post! I’m so thankful you and Jack are both doing well!
ReplyDelete