We discussed 10 ways to cope with the stress and boredom of bedrest earlier this week, so now I’d like to share 6 tips for coping with bedrest when you have other kids in the house. I was put on bedrest with my second and third baby. The first time, I had a 3 year-old at home, and the next time around, my girls were 4 and 1 1/2. So, I know from experience how hard it can be to parent from the couch!

Here are a few of the ways I learned to cope with being on bedrest with small kids:

1. Get someone to come stay with you. This obviously isn’t always possible, but if anyone can spare even a day or two away from work, ask them to come stay with you. The second time I was on bedrest, my dad came and spent more than a week with us. Having him around to lift our youngest, help with meals and just entertain the girls was a huge help! (more…)

The impact of prematurity goes far beyond developmental and medical problems.  Often times, it has an enormous financial impact on families that can last years into the future.  Aside from the medical costs of a NICU hospitalization, other financial burdens include meals, parking and gas while visiting your baby in the NICU, and lost days at work and lost jobs due to prolonged hospital stays.  After the NICU, physician, therapy and pharmacy copays, as well as lost income can continue to be a problem.  I’ve also read that parents of preemies also suffer from a higher than average divorce rate, either adding to, or resulting from financial problems.

I’d love to hear from anyone and everyone about any financial resources you’ve found to help defray medical costs or other expenses for your preemie.  Anything about SSI requirements, medicaid spend downs, or other programs would be appreciated.  All relevant comments will compiled into an article for the site.

Thanks in advance for everyone’s help!

-Kristie

Recently, a reader sent me an email about the Acts of Grace Foundation, a newly formed organization aimed at providing support and other services for moms who are hospitalized on bedrest. Joseff and Marlena Diedrich founded Acts of Grace in November of 2007, after they experienced first hand the difficulty of extended bedrest and suffered the loss of their daughter and Elle Jo’s twin sister, Grace. I took the opportunity to contact Marlena, and the email interview below is the result. I encourage all of you to check out their website and become involved.

What inspired you to found the Acts of Grace Foundation?

Our inspiration came about a few different ways. First of all, I had a 6 week stay in the hospital. During the stay we realized there was a great need to help befriend the antepartum moms and help pass time during throughout their time in the hospital. Second, we had been provided encouragement and support during our hospital stay by other non profit foundations: (Care Pages, There with Care and Now I Lay Me Down to Sleep Foundations) and wanted to help others as they helped us. Last yet the most inspirational, Grace. We wanted her to be honored and remembered, what better way than giving back to the community? (more…)

While we were in the NICU with our daughter, who was born at 31 weeks in December of 2005, I was anxious to find some sort of support from other NICU parents.  Unfortunately, the culture in our NICU was dominated by a concern for HIPAA and patient privacy.  Parents were banned from the NICU during nursing change of shift and were not encouraged to participate in rounds, lest the accidentally hear something about the baby in the next isolette.  Parents were not encouraged to interact, and there was no formal support program.  During 7 weeks in the NICU, despite conflicts with staff over poor communication and other ongoing problems, we were never once put in contact with a social worker or any parent support staff, and to this day, I don’t know if these services are even available.  The one mention of parent support was an advertisement from a local therapist who charged a fee for counseling and group support meetings. (more…)

Over the past two years, I’ve had the opportunity to speak with other parents of preemies in a variety of settings, like WalkAmerica, the Synagis clinic, through my contact form, and on the NICU 101 forums. Usually, we share our stories, and have a few minutes to chat about life. Frequently, we get around to discussing what life is like after the NICU, with so many appointments, therapy sessions and worries. We also talk about how the NICU has changed the way we think about our lives and our families. More often than not, other moms are relieved to find out that they aren’t the only one who’s been so deeply impacted by life in the NICU.

I’d like to give you all the opportunity to share something about your story so other mothers (and fathers) will know they aren’t alone. If you’d like to participate, go to our contact form, and send me a message with answer to any or all of the questions below. (more…)

I was just standing in my living room staring at some photos of the kids and lamenting the fact that I’ve been seriously lacking in interesting topics to blog about this week, when I realized that the anniversary of Camden’s NICU homecoming came and went this month without me even noticing.  It’s a little strange, because three babies on our forums have come home this month, and for some reason, Camden’s homecoming never even crossed my mind.

On February 5th, 2006, we brought Camden home after 46 days in the NICU.  This time last year, I never thought I’d make it through the first week of February without a meltdown.  Now, this month, instead of being sad, I’ve been totally absorbed in what a great, funny kid Camden is turning into.

Don’t get me wrong, Camden still has her struggles, with communication ranking at the top of the list, but her joy is infectious.  Tonight, for example, we watched a few minutes of a collegiate gymnastics competition on TV, and she spent the rest of the night giggling while rolling around on the ground doing “flips.”  Every few minutes, when she got too tired, she jump up and give herself a big round of applause.  It was too funny, and too cute to waste time being sad right now!

I first stumbled on to Carepages after the pre-school aged son of a woman whose blog I followed was diagnosed with cancer. She still uses his CarePage to keep family and friends informed about his treatments and the ups and downs of living with cancer.

There are many different kinds of people on CarePages, from a young father going through treatment for malignant mesothelioma, to a teenager with leukemia and parents of preemies and other NICU babies. CarePages is an excellent, free resource, which helps bind family a friends together during difficult times by making it easy for them to share updates, photos and messages of support.

Last year, I even built my own CarePage to give updates on my third pregnancy, in case we ended up in the NICU again. Thanksfully, we din’t need it for that, but it’s still been a nice place to jot down notes and updates on my pregnancy, and now our son’s life. I encourage all of you to check out this valuable resource.