Friday, July 10, 2015

10 Things NOT to say to a Preemie Mom....and 4 Things you SHOULD

There are a lot of these posts that float around. "What not to say..." There's so many things we say that we think are helpful, but really aren't. Well, you may not know this, but I was born premature and now I'm a preemie mom. My mom did a post similar to this back shortly after Princess was born. I've seen a similar list a few times. But they always seem to leave off a few that I find very important.

Princess was born at 28 weeks, 6 days. She weighed just 2lbs 6oz and was 14in long. It wasn't easy in the NICU. I was so glad to have my mom beside me. She'd been through it before with me, and she did it in a time where there weren't support groups, or the Internet, or even a lot of research on preemies. There wasn't an offer of therapy or a follow up with an opthalmologist. Things were very different back then. Family centered care (where the mom or dad does most of the preemie's care) wasn't a thing. Kangaroo care wasn't stressed. When I left the hospital (at 3lbs 3oz!), my mom was given a follow-up appointment with my neonatologist for a year later. Everyone was surprised I was still alive when she brought me in a year later!

After rereading her original post on Princess's CaringBridge, I decided to create this list of the 10 Things NOT to say to a Preemie Mom and 4 Things you Should!

1. "(S)he is so tiny!"
Oh how I hated this! It was the first thing my mother-in-law said to me when she came back after seeing Princess. It annoyed me to no end! I know my preemie is tiny! I tried as hard as I could to make sure she grew as much as possible and had as long as possible in the Mom-incubator instead of the plastic incubator. So, as much as you want to tell the parents how tiny their baby is, DON'T. Find something else to say. Comment about their fingers, their hair, their toes, ANYTHING but how small they are.

2. "At least you get to sleep through the night!"
Sleep? Really? No, I'm not sleeping. Instead, I'm worrying. I'm pumping, I'm trying to get a few hours of sleep. Most NICU moms will pump breast milk for their babies. This means they have to trick their body into thinking that the baby is actually eating. They do this by pumping on a schedule of about every 2-4 hours. You don't get a whole lot of sleep when you have to wake up to your alarm to pump, or else you wake up to pain because you overslept your alarm. And don't even get me started about the worrying. Thankfully, the NICU is staffed 24/7 and they don't care if you call them at 1am because you woke up from a nightmare or 3am because you're awake pumping and you just want to know what your baby weighed. Oddly, it's now 2 years since Princess was in the NICU, and the phone number is STILL in my cell phone.

3. "You'd be just as tired if (s)he was at home."
This was ACTUALLY said to me by a lactation consultant when I complained after 6 weeks that I was exhausted. It didn't dawn on me until later how wrong and how upset that made me. No, I would not be "just as tired." We were an hour from the NICU. Not only was I pumping every 3 hours (see above), but I was driving almost every day to see my daughter. Thankfully, Little Man was still in his playschool, so I had 2 days a week that I would get to go by myself to go see her. But even then, it was annoying. I had to pump, drop Little Man off, drive to the hospital, spend like an hour bedside, go pump again, spend like another hour bedside, and then head home. When I got home, I pretty much had to pump, do what little I could do at home while recovering from a C-section and then do it all over again the next day. And don't even talk about the worry! I know my mom had it worse than I did because back in 1980, they didn't have caller ID, but being Princess was in a different area code, every time that area code popped up on my cell phone, my heart caught in my throat. Were they calling to tell me something was wrong? Was it the doctor? Did I need to find someone to watch Little Man so I could go be with Princess? It was absolutely awful seeing that area code pop up!

4. "When is your baby coming home?"
Do you want the short answer or the long answer? The short answer: I don't know. The long answer: Well, they have to do x,y,z and pass g and h and be able to handle a,b, and c. Yeah, it's a long list to come home. And frankly, preemie parents just don't know. All the books and websites that are out there now say to expect your preemie to go home around their due date. That's a good date to shoot for, but sometimes it takes longer. Sometimes it takes less time. I was told 3 times "In about a week or two she should go home." Talk about get your hopes up. I learned after the first time to quit hoping. Preemies have their own schedule, just like when you're pregnant with your baby. Babies tend to come when they want to and preemies tend to come home when they want to as well. I literally had 18 hours notice before Princess came home. I got a call from the nurse when she got on shift to find out if we were coming that night. (We usually came Wednesday nights and were usually there at shift change.) I told her we were just about ready to leave. Well, she told me to make sure I brought Princess's car seat and they would do the test that night and if she passed, she could go home the next day. Yeah, for some us, we don't get much notice. So please don't ask. And some preemies come home with extras, like apnea monitors or oxygen or even a feeding pump and g-tube. So it may just make things more complicated.

5. "Time will fly by!"
Really? You think so? Do remember those advent calendars for Christmas as a child. You literally though it was going to be forever until Santa came. Well, it's kinda like that. Sure, looking back on it, 77 days doesn't seem like that long, but time passes strangely in the NICU. It's like sometimes it can pass in a blink. The first time holding your little one is NEVER long enough. But other times it passes in minutes or nano-seconds. But yet here's the strange thing, you walk in there first thing in the morning and when you walk out, it's late at night. The time passed so slowly yet so quickly, you forgot to eat. It wasn't enough time and you want to turn back around and go back in and spend every second with your child.

6. "(S)he will be home before you know it." This kind of follows the previous two. Sure, to you it seems like they'll be home soon. Not to us. Yeah, we'll never be "ready" for them to come home. We never got to do that "nesting" thing. The nursery never really got put together. All those things we bought (or didn't get to buy) may or may not work now. With Princess, I wasn't going to buy a car seat for her. We were just going to use her brother's old one. Well, when they started talking about her possibly coming home, she was only 4lbs! I check my old car seat and it was only rated at the lowest of 5lbs! So I had to buy her a new car seat! And then I was worried it wouldn't come in time.

7. "You need to take care of yourself!"
Um, take care of myself? Yeah, I'm supposed to squeeze in a shower between pumping and driving to the NICU. Date night has been put on hold. I'm lucky if I can remember where all my pump parts are, let alone to eat right. NICU life is hard. Whether you are driving back and forth, or staying near the hospital, there's no time to cook. Your life revolves around your child. You'll live on fast food or restaurants and eat when you can. And it doesn't stop when your baby comes home. There's usually a ZILLION appointments to go to.

8. "Your baby needs to be exposed to germs."
Okay, this one may be true for your full term infant, but not necessarily a preemie. Preemies have immature immune systems, among other things. They need longer before they can "be exposed" to germs. Usually until they are about 2 years old. Germs can be very scary for a preemie parent. Since their lungs are one of the last things to develop, they are susceptible to respiratory viruses. One of these viruses could put them in the hospital again, where with a full term baby they may just get sick and get over it. Some preemies are lucky enough to receive Synagis to help protect them, but it only offers some protection. Preemies and their families are encouraged to into quarantine mode during flu season and also in the months following their initial discharge. In fact, you may be lucky if you are able to go back to work with a preemie. Since most will not be allowed into a day care setting until they are 2, parents usually have to stay home with their preemie. And if you're lucky enough to visit sometime during the summer months, you'll probably be asked to drop your shoes at the door and wash and sanitize. And then, even after that "magic 2 year" mark, you'll be asked if you've had your flu shot every winter when you visit. Going to preschool or day care may seem like simple things for other children, but for preemie parents, they are a right of passage. It means that their child is hopefully stable enough to fight of germs and not end up in the hospital again.

9. "I could never do that!"
You know what, I thought this too before it happened. But please don't say it out loud. Prematurity affects everyone. Just when you think it won't affect you, someone you know will have a baby prematurely. And besides, you never really know if you can do something until you have to.

10. "I'm sorry."

Of all things, please don't say this. We have enough guilt. We don't need your pity. We are trying to do the best we can for our babies. Guilt is something we wrestle with a lot. The guilt of our bodies letting us down. The guilt of having to focus on one child more than the others. I had to drop Little Man off with his grandparents when he was getting over an illness just so I could go visit Princess and drop of breast milk. I did a whole blog entry on this very subject regarding Princess now having her disorder, but it also applies to preemie moms.

So, now you don't know what to say because I just took all your responses away, huh? Well, here is what you can say:

1. "Congratulations!"
Every mom longs to hear this. And usually with preemies, this phrase doesn't come. For whatever reason, people are afraid to congratulate preemie moms on the birth of their child. I mean, sure, their birth doesn't go according to plan. The baby is usually whisked off to the NICU, on a ventilator, on an IV and very "sick." But the mom STILL had a baby, albeit early. Congratulate her, whether she was induced, went into early labor, or had a c-section.

2. "I'm praying for you."
Yeah, this one can be very simple to say, especially when you don't know what to say. Those four words can mean the world to a tired mom. They speak volumes.

3. "You're so strong!"
Use this one sparingly. It could come off sounding like #9. But there are times that every preemie mom needs to hear this. The days that are difficult. The set backs. The surgeries. Preemie moms begin to doubt that they can continue to drive to the NICU and visit their baby after the 10th, 50th or even 100th day. That's when they need you to remind them that they are strong.

4. "Can I come do (fill-in-the-blank)?"
If you want to help the family, be specific. "Can I cut your grass?" "Can I make you dinner?" "Can I watch your other children?" Don't ask "Is there anything you need?" because honestly, we don't know what we need. What we really need is to hold our baby, be with our baby, have our baby home. But most of these things aren't always possible. So ask if you can do something specific. The family may say no, but try to do something anyway: mow their lawn, make them dinner, pick their kid up from day care or school. The sweetest thing I had happen while Princess was in the NICU was Little Man's playschool teacher made us dinner one night. Sure it was a casserole, but it helped. It was one night where I didn't have to worry about what to feed everyone. And actually it turned into like two or three nights. I didn't ask her to, she asked me.

Like I said, I'm a former preemie and a preemie mom. Some of these were said to me. Some weren't. Some I've heard said before. I run a Facebook Page for Preemie Mamas. I don't want anyone to go through what my mom went through, or what I went through. But if by chance you find yourself in that situation, know that there is support out there for you. And now you know what you can say to make a poor, worn out, stressed out preemie mom feel just a little better for a moment. Just be careful. They may break down into tears. And that's okay.

1 comment:

  1. She is so beautiful! Great post and def some things to think about. There are some things we may not want to hear but need to. I know someone would have had to tell me to take care of myself, because I probably wouldn't have. Stopping by from All Bloggers United. God bless!


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