Friday, November 19, 2010

How to help a family with a child in the NICU (and somethings NOT to do) ...

 First, for anyone who cares- the link to our WRAL News article is here.

Anyway, back to the good stuff...
Having a baby early or one that's born with medical needs is (obviously) very stressful in and of itself. Unfortunately, life in the "outside world" doesn't come to a halt because your child is sick.

In addition to worrying about whether your baby will live, you also have to worry about the everyday, mundane things of your life. Things as simple as taking a shower or finding food each day become insurmountable tasks and quickly take a back seat to life in the NICU.

We simply could not have survived the six weeks Beatrice Kate was hospitalized without help from our family, church family and friends. It's a simple as that.



So, if you know of a family with a baby in the NICU and you're wondering what you can do to help; here are a few ideas. I would recommend that you take it upon yourself to just ask if you can do one or more of these things. When you're child is in the hospital- thinking about delegating tasks is the last thing on your mind...
  • First, congratulate them on their new addition! They did just have a baby after all! No matter when they baby was born, or how early or how dire their situation is- every parent is overjoyed at the birth of their children and we all, even NICU parents, want to brag about it!
  • Offer to walk their animals if they have any. My dogs would have had to tunnel their way out of the house to go to the bathroom each day because often times we didn't get home until 9 or 10 each night. Our friends, Eva and Jay and her father, Clint/Mark/Rob (that's not a misprint, he's known by 3 names to different people) graciously offered to dogsit our (then) two big dogs during the birth. My father and mother-in-law took turns also staying at our house after that point with all three dogs, so that we could spend extra time with Beatrice Kate.
  • Offer to make a meal for them. It became a running joke between Casey and I about what I would "cook" for dinner each night. By "cook", I meant look through our coupon book and find a discount to a nearby restaurant. Then, we started receiving meals and it was like the heaven's opened up for us and manna rained down from Heaven. Often, we would come home to a fresh meal left on our doorstep from our family at Raleigh Moravian. There are no words, because "Thank You" just doesn't seem adequate enough, for the gratitude we felt for that food. 
  • Offer to clean their house or fold their laundry. Our mothers became our maids during this time. Casey and I both would wear things based on the "sniff test" of cleanliness because- well, washing loads of laundry wasn't something on our "list of important stuff". It was a bit disgusting in our house for a while, until Casey's mom or my mother or step-mom came to clean on Saturdays. If you've ever seen my house, and know about my obsession with cleanliness, then you can appreciate how stressful this time was for me.
  • Make lists of gifts, meals, flowers, well-wishes dropped off. We really, really were/are appreciative of all the things that we received while Bea was sick- though, you may not know this because you never received a thank you card. Normally, I write thank you notes the day after I receive something. When Beatrice Kate was in the NICU, I couldn't focus on anything but her and thank you notes had to wait. This means, they were then forgotten about if the items weren't noted in Casey's little pink journal. It would have been helpful to have someone with a clear head recording things for us because, even for the things that were noted in Casey's journal... well, the entries sometimes looked like this: John, pink thing... you can see where the confusion may be.
  • Make them a NICU survival kit. Some days I would spend as much as 12-15 hours at Beatrice Kate's bedside, leaving only to pump or go to the lounge to blog. This didn't leave much time for eating. I didn't know how much I would appreciate a bag of goodies until someone made one for me. So, to Jo Heather Dodson, thank you! All the ready-to-eat snacks, candies, gums, magazines, tissues, pens, etc. were very much appreciated and very well utilized!
  • Ask Dad how he's doing. At least as the mother, I had maternity leave to use while Bea was in the NICU. This freed up my days so I could sit at her bedside. Casey wasn't so lucky. Instead of spending everyday with us, he had to return to work just days after Bea was born. Though he would never admit it in a million years, it broke his heart. Casey is, if nothing else, the most selfless person I know. I watched him get up, go into work, drive back to Chapel Hill to meet me and see Beatrice Kate after work, come home and take care of our household. I know it was stressful for him; I'm actually surprised he didn't end up with an ulcer because of it. Everyone always asks about Mom; but in reality; the Dad's are equally, if not more, stressed during this time. So, check in on Dad once in a while and see what you can do to help him out specifically.
Ok, so now that we've covered things you can do for parents... let's touch on a few things you shouldn't say to NICU moms and dads...
  • "When can I see your baby" What I am about to say, I mean in the nicest possible way: as the parent of a tiny baby, let me tell you- the last thing we want around our new preemie is your germs.  Also,the NICU is a scary place for some people.When we're ready for our baby to be seen by other people, we'll let you know. And when you are invited for a visit, we expect that you are clean, a non-smoker, aren't sick or haven't been around anyone sick and will scrub your hands under scalding water for at least a minute.
  • "When can I hold (insert baby's name here)?" Uh, first... that's a little presumptuous. Secondly, often times NICU parents aren't able to hold their babies for days, weeks or even months because they're too sick/small/fragile to be handled and stressed. When we're ready for our baby to be held by others, we'll let you know. Don't ask. It's just irritating.
  • If something goes bad, don't say, "It's God's will". We are the first to admit that God has a plan in place for each and every one of us here on Earth. However, at that time and in that moment, no one wants to hear that it was planned for your baby to get sick or even die. Just saying, "I'm here when you need me" is much better suited!
  • "I knew she/he would come out on top." or "Eh, she'll be fine" No, no you didn't know this. And, when you're the parent who is standing over the top of your tiny, fragile baby's bed, with wires and monitors and IVs connected to their little bodies- we don't want a fortune teller- we just want a friend with an open ear and a shoulder to cry on when needed (and we will need it).
  • "Why are you so germaphobic? Your baby looks normal." Yes, on the outside, an ex-preemie can look like a "normal", full-term baby. Looks are deceiving though, because on the inside of that "normal little body" are the inner-workings of a premature infant. Almost always, ex-preemies will have a compromised immune system for around two years. Many times preemie's lungs are scarred from breathing assistance machines during their initial days of life. This leaves them weaker than a full-term baby's would be. It means that, should an ex-preemie become sick with something like RSV, pneumonia or the flu- it will almost certainly end up with a trip to the hospital or even worse.This is the reason preemies like Beatrice Kate are often quarantined during the cold and flu season.
 Do you have anymore suggestions? Leave them in the comment section! We would love to hear from other preemie parents about their "wish list" or "don't say" lists!

2 comments:

  1. As horrible as it sounds, we didn't necessarily want people calling every single day for an update. We appreciated the care and concern, but after leaving the hospital at night we just needed to relax and prepare for the next day. We also used our blog to update friends and family.

    Our babies were born at 33 weeks and spent some time in Special Care at REX in May. I am enjoying reading about Beatrice Kate!

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  2. Be happy for us that our baby has been born, but don't expect us to be doing cartwheels. My son was born at 32 weeks, and during those days in the hospital, not only were we in shock and survival mode, I was also grieving the end of my first pregnancy. Those last two months of excitement and planning and expectation had been ripped away from us.

    Also, while families are in the hospital, don't tell them stories about how horrible it was while your (now healthy child who you thought you should bring with you to the hospital) was in the hospital. We had a friend go on and on and on about how difficult it had been for her to leave her child, and ours wasn't even 24 hours old yet! We had no idea what the future held for him, and all she could do was talk about how difficult her experience had been. I know her intentions were good, and that she just couldn't think of what to say, but it was much more selfish than helpful. It has been a stark reminder to me as I've tried to help others -- don't talk about yourself. That's not what they need right now.

    Thanks so much for sharing your story.

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