Monday, November 28, 2011

Sweet Pea Spotlight November 2011: Kayden and Karson

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Sweet Pea Spotlight November 2011: Kayden & Karson

We would like to thank all of the families that submitted their children's stories. Please know that each of your children are so inspiring and are the reason for what we do. We are honored that you chose to share them with us. If your story was not highlighted this month we encourage you to resubmit next month.

In honor of Prematurity Awareness Month we chose a special preemie duo as our November Sweet Pea Spotlight, Kayden and Karson. These boys are current NICU sweet peas. We ask that you keep Kayden, Karson, and their family in your hearts as they continue their fight in the NICU.

Kayden and Karson's Story

I was having very severe 5-6 minute contractions at 1:00 AM on November 4th. So I rushed to the hospital (a 45 minute drive). I waited there until 4 AM just for them to send me home saying I was dehydrated. Once I returned home I tried everything I could to make my contractions stop until I came to realize my water had broken. At 26 weeks and 6 days I didn't know what to think. Upon returning to the hospital, I was rushed to the OR at 10 cm dilated. At 10:49 Kayden was born weighing 2 pounds 3 ounces. Five minutes later my son Karson was born weighing 2 pounds 7 ounces. They will be three weeks this Friday. Karson has already hit the 3 pound mar. Kayden is shortly behind weighing 2lbs 12oz. They are for the most part breathing on their own except for some pressure being used to keep their lungs from sticking. Their feedings are increased every day. They have told us to expect them to come home around February. All I am waiting for is the day they can be in the same open crib together.

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Wednesday, November 23, 2011

MJ's Memories Teddy Bear Drive

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MJ's Memories will be donating Teddy Bears to families spending their holidays in the NICU again this year! Their goal is to provide every family in the NICU at Stormont Vail Hospital in Topeka, KS and Children's Mercy Hospital in Kansas City, MO with a Teddy Bear on Christmas Day. To reach this goal they will need 100 Teddy Bear's. While your out doing your holiday shopping, please consider picking up a Teddy Bear or two to give a little comfort to families who aren't able to be at home this year. Contact Megan Skaggs, MJ's Memories Project Leader, for more details or to arrange to donate any Teddy Bears. Thank you in advance for your help!
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Tuesday, November 22, 2011

Celebrating 3,000 Care Packages

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Several years ago Project Sweet Peas began with the efforts of three women. Inspired by their experiences they decided to start filling bags with items that they wished they had or needed during their stay in the hospital. Since then Project Sweet Peas has grown into a nationwide network of projects.

Today we celebrate 3,000 care packages. On October 28th project Avi's Embrace donated our 3,000th care package. That's 3,000 families supported by our organization. And that number has continued to grow.

We would like to extend our deepest appreciation to all of you. To our project leaders, to our volunteers, and to anyone who has contributed to our organization in some way. Without you, Project Sweet Peas would not be the success that it is.

We are so excited to see what the future holds.
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Friday, November 18, 2011

Featured article: A Mother's Guilt

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A Mother’s Guilt

Trying again after the loss of an infant

By Shannon M. Mason

The loss of an infant, at any stage, is a heart wrenching situation. Miscarriage occurs in 15 percent of all clinically recognized pregnancies and 3 to 4 percent of all reproductive age couples have recurrent losses. (Cohen, J. 2005) These statistics do not make the pain of a loss any easier on the parents who are going through the experience. Nor does it make the decision to try again any less guilt ridden.

The desire to have a child is often so strong that once a woman has conceived she begins to connect with the life growing inside her. When that life no longer exists there is a painful void. Often that void is filled with the desire to try again but it is not without worry, stress and even guilty thoughts. A mother’s love is so strong that she can continue to connect with the life that was once inside her own body and replacing that life with another is a decision riddled with questions.

Trying again can be confusing and scary. Many questions may be going through your mind. Here are some facts concerning loss:

  • Having one miscarriage does not increase your risk of having another.
  • Having losses during your second trimester may indicate cervical incompetency and should be tested.
  • Once you see a heartbeat over 100 beats per minute your risk of miscarriage is less than 10%.
  • Most miscarriages are due to a chromosomal anomaly and if this is your first, then the chance of having a healthy baby in a subsequent pregnancy is excellent.
  • Most all miscarriages happen because of a problem with the fetus, not due to something the mother may or may not have done.
  • Women who try again soon after a loss may be more successful than those who delay.

The time for a couple to try again is a personal decision. Not only does the body need time to heal, so does the mind. Another pregnancy will not replace the previous loss and it becomes difficult to know where you are in the role of parenthood. You may find it hard to say that you are a parent since you do not have a living child. In actuality, you are the most precious of parents as your love now spans across the heavens to reach your little one.

When the time is right you will find yourself expecting another child. This new pregnancy will be bittersweet. You may find that others will ask if this subsequent pregnancy will be your first child. Feelings of guilt may accompany your answer. Technically, this is not your first child but how do you explain? How strong is your ability to talk about your loss? If you are able, you can mention that this is not your first pregnancy and give a brief explanation that you have another child who did not make it to birth or passed away shortly after. For some, this explanation is much more difficult. When I am asked this question I reply that “we have seven angels watching over us.” This response was not always easy and to this day still brings feelings of grief when spoken.

With this new life growing inside, it is perfectly acceptable to be happy. Staying positive is sometimes difficult as your thoughts may drift to your other child(ren) but that is normal. Take each day one step at a time and celebrate the milestones of your pregnancy. Understand that there is no right or wrong way to handle a subsequent pregnancy. Your decision to try again is because of the vast amount of love you have for your family and that love is large enough to encompass all of your children, without a need for guilt.

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Tuesday, November 15, 2011

Sweet Pea Spotlight

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We will be starting our newest program – the Sweet Pea Spotlight. The Sweet Pea Spotlight will feature an ICU child (0-18yrs) and may be an angel, fighting in the ICU currently or thriving at home. Submissions will be open for one week each month, and which time you can submit your child’s story along with two photos to The Sweet Pea will be chosen and announced the last week of each month. After the Sweet Pea is chosen, parents will need to resubmit their story for the following month. Please, do not submit other parent’s children for the Spotlight.

In honor of Prematurity Awareness Month, we will be choosing a special preemie as our Sweet Pea Spotlight. Submissions start today and run until November 25th. Submit your preemie’s story along with two photos to us at Our Sweet Pea will be announced on November 28th and featured on our blog and Facebook page.

Good luck!

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Friday, November 4, 2011

How to Advocate for your Child While in the NICU

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How to Advocate for your Child While in the NICU

By Lisa Knigge Rondeau

Having a baby in the hospital is one of the most stressful events for so many reasons—in many cases, it is unexpected, which leaves parents unprepared and overwhelmed by the hospital setting; Mom is still recovering from the baby’s delivery and possibly emergency surgery herself, leaving her in pain and low on energy; and of course, the worry about your baby—the medical terms, diagnoses, tests, procedures—it is all too much to take in. With so many emotions flowing through your head, it can be especially hard to effectively manage your child’s care and be an advocate for them.

Wanting to be an advocate for your child and actually being one are two different things. If your anything like me, you might find yourself vacillating between two extremes as you try to handle your NICU stay—keeping your feelings of frustration, fear, and anger bottled up inside, choosing to cry when you are in the comfort of your own home; or taking your feelings out on those that are closest to you—your spouse, partner, friend, or parent. While those options are bound to happen to even the best of us, they don’t really help in the long run. They don’t offer any long term solutions for dealing with the new world you find yourself in.

Most people that find themselves with a child in the NICU don’t have a medical degree, and no matter what your background, all the new medical talk can make even the most at ease parent feel unprepared and unknowledgeable. Doctors and staff members seem to talk so fast as they give you the updates: “Three brady alarms today, trying to increase feeds to 15cc’s, testing billirubin levels and a head ultrasound later. Any questions?” If this is your first time (or tenth, or hundredth, it really doesn’t matter) hearing some of these terms, you will have LOTS of questions, and it can be difficult just to know where to start.

Here are some tips to help you manage the information and advocate for your child:

1. 1. 1. Keep notes in a dedicated notebook

When I arrived in the NICU, I had nothing with me besides my purse. My first days of notes were on the back of a grocery receipt until my husband could go get me a notebook. In an emergency—any scrap paper will do, but try to keep all your notes in one notebook that is just for hospital information. Start a new page with the date, and take all your notes there. Try to focus on getting the important information down—spelling and penmanship doesn’t count now—you can fix those items later if needed. Long names of diseases or disorders can be looked up later for more information by you or often times in the hospital’s resource center if one is available.

2. 2. 2. Say what you feel

If you are having a conversation with a doctor, nurse or other staff person, and you are feeling frustrated, overwhelmed, or upset, start by saying just that. It allows everyone to know where they stand in the conversation and helps the staff members meet you where you are at. If they think you are handling everything just perfectly, they might not take the extra time to slow down and make sure you understand everything. So go ahead and start by saying “I’m feeling very overwhelmed right now.” Then clearly state why you are feeling that way: “I was here all night last night due to my daughter’s surgery, and now she might need another one. I don’t understand why that is.” You don’t have to go on and on if you don’t want to, but telling everyone exactly what you are feeling and why allows them to direct their answers to those feelings, and not whatever they might think you need.

3. 3. 3. Speak their language

Let’s face it—everyone communicates differently. As a NICU parent, your daily emotions and well-being revolve around your child and how he or she is doing. But this isn’t true of doctors and nurses who care for multiple babies each day, no matter how hard they are working to get your (and every baby) well. So in a sense, parents are speaking a different language than staff members. Whenever you can, speak their language to help get direct answers. For example, one of my favorite phrases to use with my girls’ doctors was “What is the criteria for ______”? After several days of my asking the doctor when I could hold my daughter, only to be given answers that were unfulfilling to me, like “when her arterial line comes out,” I had to speak a different language. When the doctor would give me a condition like that, I would then respond, “and what’s the criteria for that?” and allow them to answer, which gave me more specific and manageable information to work with. I knew then what specific steps had to be done to get me where I wanted to be.

4. 4. 4. They work for ME

After many long days and nights in the NICU, I started to take the attitude that the doctors and staff there worked for me, and would need to start behaving accordingly! No, I didn’t get a bullhorn and yell or anything crazy like that, it was just something that I silently repeated in my head to help get me in the right frame of mind. Too often, I felt powerless in the NICU—the fact that I was teacher meant nothing here—my education proved totally inadequate. It was so easy to feel that everyone around me was smarter than me, knew more than me about my babies, and I just had to listen to what they said and nod along nicely. But that of course is not true. So I started to see them as employees that I had the right and obligation to question if something wasn’t going well. I would remind myself that I knew my babies just as well as they did, (if not better!) and that even though I didn’t go to medical school, I can still understand if given the right explanation.

5. 5. 5. Ask to speak to the charge nurse

Did you know there is a charge nurse on each shift in the NICU—a nurse, whose job, in addition to caring for babies, is to oversee NICU issues and address concerns? I didn’t know about this until about one month into my stay. Whenever you are concerned with something regarding the care of your baby, and if that concern is not adequately addressed, ask to speak to the charge nurse. This can be easier than it seems because most of us are and want to be nice, we want everyone to like us and we don’t want to seem difficult and get labeled as “those parents.”

But even if the worst case scenario came true, and everyone thought you were a big meanie for talking to the charge nurse, wouldn’t that still be worth it for your child? Isn’t the risk of having someone—someone who will only be in your life for a short time—not like you a small sacrifice for the care of your child? Of course it is. So speak up when you need to.

Above all, trust yourself. If something doesn’t feel right, say so. If you have a question, even a “dumb” or “quick” one, ask it. Talking the extra effort to make sure you understand so you can be the best advocate for your child is worth it.

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Kit's Muse Holiday Card Sale

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Kit's Muse has some great holiday cards for you to share with your friends and family this season! All cards are hand designed just for Kit's Muse and 100% of the proceeds go to the charity. There is no better way to spread love this season than helping NICU families while showing others how much you care.

We are now taking orders and will do so till December 9th! You will receive 6 cards and envelopes for only $6.50. You may pick a mixed box containing one of each design or you may choose one design to be printed on all 6 of your cards. They will be processed in the order they are received and shipping will start the first week of December. You will have them in plenty of time to send off and spread cheer.

Please visit Kit's Muse at for more information.

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Tuesday, November 1, 2011

Kit's Muse Silly Hat Auction

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Kit's Muse will be having a silly on-line hat auction Nov. 18-20!!! Now is the time to get that cute one of a kind silly hat for you newest family member or the kid that's still inside of you. All items for auction can be found at on the 'events' page. Starting bid for all items is $10.00 and this includes shipping. 100% of all proceeds go right to the charity so keep those ears warm while warming the hearts of NICU families at the same time!

Register now by visiting

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