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Dear Boston Mamas: How To Support Parents of Premature Babies

hands.jpgToday's Dear Boston Mamas question comes from Precillia via e-mail:

Dear Christine, My good friend gave birth 3 weeks ago to her daughter - 12 weeks early. She lives in CA, and a number of her good friends are now on the East coast. She asked for a support group after delivery, and the doctors were not able to provide one locally. I'm wondering if you have any advice from your experience, and or from your readership on how we (her friends) can best support her from afar. We are beyond flowers, etc. We did send a gift certificate to their favorite restaurant so that they could enjoy a night out. We are all texting, calling, emailing etc. without expecting a response, but really to show our support and convey our thoughts and prayers. Their situation is so stressful and we all feel so helpless...not to mention, guilty, that many of us have had babies this year who are healthy.

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Dear Precillia,

Thanks for writing in; I'm sending lots of healing and peaceful wishes to your friend and her family in California. New parenthood is challenging as is, and negotiating premature delivery adds a whole new layer.

Below are some thoughts on ways you and your friends could help. I also queried about this topic at the Boston Mamas Facebook community page and on Twitter. I've added comments from the community below, in cases where people shared new ideas, twists on ideas I already had, or detailed commentary.

Support groups. I know you mentioned that your friend asked her doctors about a support group and I'm disappointed that the doctors didn't have recommendations. One way you could help your friend is by doing some online research. The web makes it easier for families to connect and it's hard to imagine that there isn't already a local preemie support group in place. Another idea: check out the March of Dimes website -- at the top of the site you can plug in a zip code to find a local chapter and find events happening near your friend. Having participated in several March for Babies walks in Boston, I can attest to the power of families of preemies coming together; this could be a good way for your friend to connect with other families. Also, contributing Boston Mamas writer Heather (a mother of toddler triplets) suggested that your friend ask the nursing staff about support groups since the nurses often are plugged into community offerings moreso than the doctors. Heather also mentioned that when she delivered in Boston, there was a social worker who came by every day; if your friend has access to hospital social workers, she could ask the social workers about support groups.

Families in the NICU. Another source for connection you could mention to your friend is other families in the NICU. Heather shared that that she has friends who spent months in the NICU with their babies and they still keep in touch with nurses and other parents they connected with during that time.

Tracking down their local network. Heather also astutely suggested, "Maybe the East coast friends could find out if their friend belongs to a church or other group who could help coordinate a schedule for meal drop offs and help during the day when the baby comes home. I am still in awe of the strangers who signed up for 2 hours shifts to care for my babies so I could get a few hours sleep. I know this is a challenge given the distance but they could try coordinating the effort via phone or email."

The basics. I think it's great that you sent a gift certificate for a restaurant. If you and your friends have the means, helping with other things -- groceries, meals, a cleaning person, etc. -- would be a practical way to help and allow your friend to spend her time at the NICU instead of dealing with household minutia. Several people chimed in on Facebook and Twitter in support of gift cards for restaurants, groceries, gas (if your friend is going back and forth to the hospital a lot), and lodging (if she needs to stay close to the hospital). In a twist on this idea, @mamajoan on Twitter suggested "calling the hospital nurse's desk for names of restaurants that deliver to the hospital, then call them and order food to be delivered to the parents."

Send a delegate. When my niece Alyssa was in the NICU, I know it meant a lot to my brother and his wife when people visited them and Alyssa at the NICU, especially since my brother is the only of us seven siblings who does not live in Boston. They knew it wasn't easy for people to make the trek and they both appreciated the visit for Alyssa and I think it was also helpful to be able to offer some distraction to them. If you think your friend would be amenable, perhaps instead of spending funds on groceries or a cleaning person, you could pool your money and send one friend out to California to visit and offer love and household help in person.

The power of letters. Sometimes the simplest gestures are immensely powerful. I think it would be amazing for you and your friends to start a rotating schedule of sending a card or letter of support to your friend (and/or to the baby) every few days or every week. The letters need not be long; they could include a meaningful quote or simply convey that you are pulling for them and know how strong they are and are rooting for the day when they are able to leave the hospital together as a family. Those letters would probably become very meaningful keepsake items for the family.

The power of prayer. Via Twitter, @simplyandreah shared, "I had two preemies and the most helpful thing loved ones who lived far away could do was pray. My son is alive because of prayer!"

Checking in without expectation. You are already doing this but I wanted to encourage you to keep on with this practice. Especially after reading these responses from Facebook community members: Danielle noted the power of, "Checking in without expecting an answer. I know that sounds silly but getting e-mails and messages of support were so uplifting but the pressure of having to reply to all of them was overwhelming. Let the parents know that no response is necessary unless they need something." And Sharon shared, "Audrey was born almost 6 weeks premature, and I was overwhelmed with phone calls. Barry and I spend every moment traveling to and from the hospital to hold Audrey, feed her, comfort her, and LOVE LOVE LOVE her. I still remember the feeling of having to keep everyone afar up to speed... and I still remember the people who called and said CALL ME WHEN YOU ARE READY."

Listen and acknowledge. So simple, but I loved these responses via the Boston Mamas Facebook page: From Kerry, "Just to be an ear to listen (when parents have time to talk of course). And again to reiterate what the other posters have mentioned, understanding that calls/e-mails may go unanswered during this crazy time." And from Sarah, "What I found most helpful, honestly, was to have people acknowledge that I have my babies. So many people didn't congratulate us or even really talk to us because they didn't know what to say. Even though my girls were born 10 weeks early, it was still a wonderful thing and I would have liked the congratulations."

Free yourself of guilt. You mentioned you and your friends feeling helpless and also guilty for having delivered healthy babies this year. I know it's hard not to feel that way, but I encourage you to free yourself of those feelings and redirect that energy to your friend and her little one. Simply set a little intention, and every time you feel that pang of guilt, take a breath, and instead send a wish for peace and good health to your friend and her baby. It will do everyone good.

I hope these thoughts are helpful Precillia and I'm wishing all of you well.

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Image credit: FreeDigitalPhotos.net

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Have a question for Christine? Drop her a line! And of course feel free to comment in if you have recommendations beyond those made above.

Comments

Wonderful advice! As a mom of twins girls born at 27 weeks, I couldn't agree more with with everything you've shared, and I'm honored my tip was included.

One more thing that just came to mind - Precillia may want to encourage her friend to start a blog or get a Caring Bridge page. Not only is it a great outlet for getting feelings out but it's an easy way to keep people posted on what's going on too. My girls just turned 2 and I'm printing our blog out into a book for them so they can have a document of those first three harrowing but miraculous months of their lives, and all of the amazing comments the people who love and prayed for them left.

Danielle, GREAT SUGGESTION. Obviously I'm a big fan of blogs, but I've also found Caring Bridge so helpful for keeping up on the status of friends dealing with health issues.

Just to clarify/expand on my suggestion: when I was in the NICU with my son, I discovered that the nurses in the postpartum ward actually had a three-ring binder full of takeout menus for restaurants in the area that would deliver to the hospital. It really could be a godsend when you inevitably get tired of hospital food. And sometimes having food just appear in front of you, without having to make any effort or any decisions, can really be helpful for new preemie parents.

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