NICU Family Reunion

Last night was the March of Dimes NICU Family Reunion and Family Teams Celebration at the Providence Children's Museum.  This annual event is sponsored by the March of Dimes NICU Family Support program and as I learned last night, Women & Infants was the first hospital to introduce the NICU Family Support program to the families of their littlest patients.  

We've been supporters of the March of Dimes since our oldest was born prematurely in 2007 and have participated in the March for Babies since then.  We have a Family Team and our family and friends join us each year to participate in the walk.  Our twins were born last June at 30 weeks and spent 10 long weeks in the NICU at Women & Infants Hospital.  Now that we have 3 NICU graduates in the family, we're even more committed to supporting the March of Dimes as the NICU Family Support program was a great help last summer.  They provide programming for parents and siblings, resources and we were even able to celebrate Father's Day at the hospital at their Father's Day luncheon.   

As always, it seemed as if all of the kids in attendance enjoyed themselves and it is always great to see how these former preemies, some of whom were born weighing less than 1000 grams, are growing and thriving.  

While our family and others who spend extensive time in the NICU have benefited from the March of Dimes’ programming and support, the organization helps all babies, not just premature babies.  The March of Dimes has conducted research on the importance of folic acid during pregnancy, developed the standards for newborn screening tests and more; benefiting all pregnant mothers and babies. 

This year, we're again walking in the March for Babies in honor of our 3 preemies and all babies like them who are born too soon.  We want to do all we can to help this organization that had such a positive impact in our lives at the most difficult times for our family.  

Click here to find a walk near you. 

My husband and sons having fun at the Providence Children's Museum!

C is for Cookie, P is for Peanut

I started this post last week, but I am just now finishing it.  It has been a CRAZY week around here.

I could not sleep the other night.  A 19 year old man, although in my mind he is a boy, who I never met was in my thoughts and causing my worst fears as a parent to run repeatedly through my mind.  This boy was a student at Bryant University in Smithfield, RI, but at home in Massachusetts on spring break when he ate a cookie.  That boy and that cookie were the reason I could not sleep for you see, unbeknown to him, the cookie contained peanut oil (according to the news) and he had a severe reaction that caused his death.  I've read a few different versions in the news of what ultimately caused the reaction to be fatal, but that is not what am focusing on.  In the end all that matters to me is that he ate a food he was allergic to and it killed him.  The story struck way too close to home for me.

When my oldest son was almost 3, I gave him a peanut and jelly sandwich because I wanted him to have peanut butter for the first time when he was at home with me.  He had eaten a granola bar months earlier and had broken out in hives a little later, but I was unsure if the peanut butter chips in the granola bar were the cause.  He took 2 bites of the sandwich and spit them both out, telling me they made his mouth "feel funny." I called the pediatrician and was told to give him Benadryl and keep an eye on him, since those were his only complaints.  He seemed to be fine after that, but about 45 minutes later when my husband arrived home, he suddenly began coughing, wheezing and vomiting.  We again called the pediatrician and I was told to get him to an ER as soon as possible.  We did not have time to make it to the hospital, so we drove to an urgent care clinic that was much closer.  I sat in the backseat with my son, who was vomiting, coughing and gasping for breath the entire time.  Upon our arrival, he was rushed to the treatment room, where he was evaluated and given a shot of epinephrine and oxygen.  Fortunately both of those worked and the reaction abated.  In addition to treatment, you have to stay there for 4 hours after a reaction in case it returns after the medication wears off and that can happen.  His reaction did not return and fortunately he handled the entire incident very well; much better than his parents were handling it.  The next week we took him to the allergist and found that his allergy to peanuts was a high Level 4.  There are 6 levels. 

My son is now 6 and still remembers (and talks about) the time he ate peanut butter and had the reaction.  He is very aware of the importance of checking all ingredients and informing people of his allergy.  We have numerous Epipens, as do his grandparents, caregivers and school.  The preschool he went to was nut-free and his kindergarten classroom is nut-free too.  Next year in first grade, he'll sit at an allergy table in the cafeteria because other grades in the school are not nut-free.

Each time a person has an allergic reaction to a food, the reaction intensifies.  We have done our best to ensure that another reaction has not happened and until this point, that has been fairly simple.  At 6 years old, he does not go many places without one of us and when he does, whomever he is with is aware of his allergy and given an Epipen.  My fears (which were exasperated by last week's news story) are for when he is older and has more independence.  Will kids think it's funny to sneak him something with peanuts in it as a joke?  Will he be confident enough to tell his friends in junior high and high school that he cannot eat certain foods or needs to check the ingredients first?  What about when he goes to college and eats in the cafeteria--will he check each menu item at every meal?  Although he is only 6, he is fascinated by Eastern cultures and wants to visit China and Japan when he is older.  Even if he does not make it to those countries, how do you travel internationally with a food allergy?  Do you need to use Google translator to learn how to say, "Does this contain peanuts?," in multiple languages?

Life for parents who have children with food allergies is different.  It changes not only the types of food you have in your home, but also how and where you shop, restaurants you visit, family outings and vacation plans.  While I was told that my son can only have an anaphylactic reaction if he ingests peanuts, I am frightened when he wants to attend events that sell shelled peanuts and when we fly on airplanes. We obviously take precautions, but the fear that something could happen is always in the back of my mind.  I shudder when I inform restaurants of his allergy and I'm told that "we don't use peanuts here" because you cannot tell if a product is 'safe' unless you read the ingredients to verify that there is not a chance it was processed with, near or may contain peanuts.  While I am not advocating for peanuts and tree nuts to be banned from all schools, I do bristle when I overhear parents say, "all my child eats is peanut butter and jelly and it isn't fair s/he cannot have it at school/camp/daycare," as I think, "your child is picky, but mine could die.  Imagine it were your child who had a food allergy.  Would your stance change?"

While my son only has a peanut allergy, there has been a sharp increase in all food allergies over the past few decades.  There is much speculation as to the cause, but so far no one has been able to pinpoint a definitive answer.  The American Association of Pediatrics recently revised its guidelines on withholding allergenic foods and now recommends that those foods be introduced to infants and toddlers earlier as one of the theories is that the increase of food allergies could be linked to the previously recommended delayed exposure.  I do think that one positive reaction to the increase in food allergies has been a heightened awareness to them and the fact that they are life threatening and need to be taken seriously.  

While I cannot follow my son around with an Epipen for the rest of his life (it would eventually be considered stalking), I can do everything to ensure that he understands the importance of being aware of his allergy.  I hope that he grows up with the confidence to accept it as something he does not need to be embarrassed of or hide to be "cool."  And if he does decide to one day travel internationally, I will get him the best translation tool that money can buy!

Date Night

I gave my husband a restaurant deal from Groupon for Christmas and we're finally using it tonight before it expires.  Between having 3 kids and him teaching two nights a week this semester, the past 3 months seem to have flown by.  For those of you that are Rhode Islanders, I know you're familiar with Federal Hill in Providence.  For anyone planning a visit to Rhode Island in the near future, be sure to visit Federal Hill while you're here!

Federal Hill is Providence's version of a "Little Italy" and the restaurants and shops will not disappoint you.  We're dining at an Italian restaurant, one of many there, but one of our favorites.  Our meal deal includes an appetizer, entrees and wine.  Of course as parents of 3 going out on a weeknight, we're going early and will most likely be home before our oldest goes to bed.  Hopefully the kids are all cooperative for Grammy and Pa because I've had 2 grumpy babies here today.

I'm looking forward to a rare night out with my husband and will share our thoughts on dinner with you soon!  If you're looking for more information on Federal Hill, visit the Federal Hill Commerce Association.  

Summer Belongs to You

To quote the famous stepbrothers, Phineas and Ferb, "Summer Belongs to You."  In each episode they work towards their goal of having the best summer ever.  My twins were born prematurely last June and were in the hospital through August, so my entire summer was spent in the NICU.  Summer belonged to Women & Infants and visiting our babies.  This winter has seemed extra long with too many snow storms and frigid weather, coupled with the lack of summer last year, I'm ready for the warm weather to arrive!

One day a few weeks ago, my oldest was climbing off the walls and we were all suffering from cabin fever when I came up with an idea to keep him busy and bust our winter doldrums.  I proposed that we create a list of things we want to do once the nicer weather arrives.  (It was also part a sneaky plan help him to practice his writing!)  My only guideline was that it had to be something that we couldn't do in the cold weather.  He and I both came up with some ideas and my husband added to it when he came home that evening.  Since then, we've been adding things to our "list" and it helps to have some things to look forward to once we can begin wearing shorts and flip-flops again.

Right now, our Summer List is just on the pad that we started with.  Some of the ideas are one time things "fly a kite," while others, like "plant a garden," are long term projects.  I'm debating how to display these ideas and how to choose what to do.  Do I put the ideas on slip of paper in a jar to choose randomly?  Do I make a colorful list of all of our ideas and check them off as we go along?  I certainly have some time to decide, but I would like to have it ready sooner rather than later to remind us that the spring and summer will be here before we know it!

How are you and your family preparing for summer?

Welcome!

I've been toying with the idea of creating a blog and finally took the leap.  I'm not sure how often I will post, but I hope it's pretty regularly.  First, a little about me.  I'm a native Rhode Islander and like many of us, I have no plans of ever moving to another state.  My husband and I are parents to 3 children--a 6 year old boy and 9 month old boy/girl twins.  I'm primarily a stay at home mom, working only 3 hours a week in the "real world."

This past year has seen us navigating through a lot of changes: premature births, lengthy hospitalizations, kindergarten and new job opportunities.  I now feel like we're in a good place, but will be the first to admit that our home often has a circus-like atmosphere.  Of course that may be the only way life with three kids 6 and under (2 of whom are babies) can be.  We often joke that our family's theme song is Journey's "Who's Crying Now?" as the title reflects many moments in our life these days.   

I hope to share my thoughts, musings, likes and dislikes with all of you out there.  I'm an avid reader of both adult and children's books, plus I'm always on the lookout for great deals and fun, inexpensive/free activities to do with my kids.  

Welcome to "When Did I Join the Circus?" and feel free to contact me and share your thoughts.

Rachel