10 Ways We Make Our Daughter's Planned PICU Stays a Little Easier

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Our PICU (pediatric intensive care unit) stays have been planned and the durations were less than a week, but we hope these tips can make your stay a little easier.

1. Make eating easy. When they are toddlers, some things are not as easy for them. If possible, bring their own utensils, dishes and cups. Bring a straw cup that bends at the neck (and introduce it a few weeks prior to the hospital). Try bringing their favorite food or something they helped you bake at home if possible. We used a popsicle to mask the taste of an icky oral medicine at 2 a.m. one day.

Child's plate with illustrations of animals on it, plus matching bowl, cup with a straw and eating utensils

2. Bring familiar objects to the hospital. Special blankets, books and animals are comforting. A familiar doll can offer some control — ask the nurses/doctors to do any test/procedure to the doll first with your toddler helping.

3. Know what is available to you. You will be spending days in a space, and it is important to order food, do laundry and just sit. There is typically one chair in a room — we bring a camping chair. Many local restaurants might deliver to hospitals; pick ones you like.

4. Bring comfortable changes of clothes for you. Your clothes maybe bled on, thrown up on or soiled in a variety of ways, and you want the ability to quickly get clean again. Laundry will fix the clothes on a later date.

5. Create calm space. Hospitals are noisy places, and white noise machines can help mask significant amounts of that noise. Bring one and run it all day and night if needed. Bring a small speaker that links to your phone and play mellow music. I recommend John Denver; it’s an old favorite of mine.

6. Address your child with respect. Explain things in clear terms using normal hospital terms as well as simplified terms. Clearly let them know what you need them to do and why. “Don’t touch the IV; it is how you get medicine to make you better.” Healing can hurt at times; don’t let hospital staff lie and say things are “no owies” when you know it will be uncomfortable. Addressing it openly might be best for your child.

7. Create your own terminology when needed. We had to explain 80-plus stitches in my daughter’s skull. We called it her warrior crown because the word “incision” just didn’t work for us. Sometimes you just need to be able to talk without tearing up as a parent.

8. Bring the child life specialist in when they get a bit more mobile and responsive. Making the last impression of the hospital fun is important. Playing with some new toys and meeting a fun person who is attuned to coming up with games around the IVs, the limitations, and the reality of the situation can really help in the long run.

9. Give your partner or support team grace. Things will get said. Stress will be apparent. Try to remember to show each other grace in times you are emotionally, physically and spiritually tested.

10. Create a communication plan. People care and want updates. I choose a blog, linked to the blog posts in Facebook, and staged a few posts for surgery milestones. I clearly told people I would not be answering the phone and where/how we’d be communicating.

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6 Tips to Help Kids With a 'Failure to Thrive' Diagnosis

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I have been on a quest to find a good failure to thrive (FTT) blog. I’ve found a handful worth sharing, but none moved much past the initial shock of the diagnosis. So I’ve decided to write from my own experience. If you’re reading this and new to the diagnosis, I hope these tips will shed some light on what to expect for your little one.

My daughter was diagnosed with FTT at 8 months old. She is now 5 years old. If I could go back in time and tell myself what I know now, it would be practical, real advice.

1. Coming to terms with the diagnosis.

As I’ve read through many blogs, some common themes are guilt, fear, and worry — all valid feelings. I feel fortunate my daughter’s pediatrician did not make me feel guilt. She explained FTT is a medical term used for insurance claim purposes. It’s an unfortunate term, “failure.” Not something you ever want to correlate with your child or your parenting skills.

If you’re new to this diagnosis, I am here to tell you, you are not a failure. There are hundreds of causes for FTT. You may have a long journey ahead of you. You may find a quick answer or, if you’re like me, you may never have an answer. My daughter has gone from a FTT diagnosis to “Small for Gestational Age” (SGA) another vague insurance/medical term.

2. Find a support system.

First and foremost, be your child’s biggest advocate. It can be a very lonely road. There will be times you may question, “should I be worried?” Trust your instincts. Your family and friends may question your intentions. Maybe even your spouse. Remember, everyone has good intentions and probably want what’s best for you and your child. They will not be able to relate. After all, FTT is present in less than five percent of children. The chances of knowing someone personally who has experienced this first-hand is slim. Find an online support group, there are a lot of great ones on Facebook. Other parents will be your best sounding board.

I wish I wouldn’t have talked so much about my daughter to my non-FTT network. It always left me feeling empty. People didn’t know what to say, because they haven’t been there. They were always comparing her to their own healthy child or someone they know who is small. Or my favorite, “Have you tried feeding her cheeseburgers?” Really? These people think I have her on a diet?

3. When it comes to doctors do what feels right.

I actually had a pediatrician recommend I try bananas with peanut butter — thanks for the pointer doc.

Get second opinions. Be open-minded. My daughter had three pediatricians until I found one I liked. We like to believe doctors know everything, but unfortunately they don’t. Every specialist we saw thought they could “fix” her. She was on medication that didn’t help for two years. It didn’t dawn on me until then to take her off of them. It was a lightbulb moment. If they’re not helping her gain weight, why medicate her?

Research any procedures, treatments or medications. Learn the pros and cons of each. Utilize your online support groups, ask other parents about their experiences. Choose what works best for you and your child. Don’t do anything you don’t feel comfortable with. Trust your gut. Be in tune with what is actually helping your child. What works and what doesn’t.

4. Early intervention program.

If your child is under age 2, see if they qualify for your state’s “Early Intervention Program.” Every state is required to provide this service in-home or any other natural environment and it is not based on income. I was surprised we were eligible. She qualified to receive in-home visits once a month from a dietitian and occupational therapist at no cost to our family. We live in the state of Kansas where she received services until age 3. Their visits were invaluable to us. They were able to see my daughter in her environment, where she was comfortable. They gave practical tips for our home, like how to make our high chair work for her petite frame, sippy cups, potty-training, etc. Doctor referrals based on other client recommendations were helpful.

5. Keep a medical summary.

This may seem tedious at times; I wish I had done it sooner than later. I started a simple Word document explaining my daughter’s medical history. It began with my pregnancy complications down to specialists she’d seen, tests, medicines, surgeries, measurements, etc. It has made it very easy to email to a doctor prior to new consultation visit. Several doctors have told me how helpful it was to have all of her medical history in one place that was quick and easy to read through. Some thought I was a little over-the-top, but I’d rather be prepared and over-the-top than unprepared.

6. Meal time.

Food is the center of human life; without it we cannot survive. This is not new information to anyone. You might be asking, why even mention it? I say this as a reminder of how important it is that your child eats and learns to enjoy eating. The last thing you want is your child having a fear of mealtime or develop an aversion towards eating.

For my daughter, eating was a problem since day one. She struggled with nursing, latching, bottles, then spoon feeding. She did not like to eat. Most babies naturally want to eat. Sometimes I need to remind myself of that, it wasn’t anything I was doing wrong. Something was not right. As she got older, mealtime got to be more and more stressful.

I’d be lying if I said I never got frustrated. We’ve both shed tears. As a toddler she started refusing to come to the table. How could I blame her? She was under so much pressure to eat and gain weight.

Over the years, I’ve learned much from the specialists she’s seen. Plus, I have a few tricks of my own up my sleeve. In fact, so many, it would require an addendum.

The key is to try to stay positive. Keep meals fun and light-hearted. Five years into this, mealtimes are still not perfect. But I’m OK with that. I’ve learned to let go a little. Mom to mom advice: Allow yourself to let go of traditional ideas of good eating habits. I’m not talking about nutrition here. I’m talking about allowing your child to watch TV while they eat. Yep. I said it. Gasp! My daughter eats better when she’s distracted. I don’t do it every time, but sometimes it helps. You both need relief from the pressure. The most important thing is to get that much needed nutrition into their bodies. Give yourself permission to bend the rules occasionally. Don’t feel guilty. You have a lot on your plate. Pun intended.

Follow this journey on Pants for Peanuts.

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The Best Gift My Mother Gave Me When I Was Sick

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Mothers always want to save their children from pain. From birth they reach out to catch us from falling and protect us as much as they can from the inevitable pain that can surround us in this world. Yet, the world is not always so kind, and mothers cannot always protect us from our pain. I remember the moment I locked eyes with my mom and saw the helplessness in her eyes.

I looked straight at her with tears rolling down my cheeks as the nurse blew a vein in my arm. Mom looked back at me with an agonizing look, as she could not protect me from the prick of a needle that was meant to find answers, not further pain.

The nurse apologized profusely and switched staff members to do another blood draw as I sat sobbing on the bench of the cold doctor’s office. I was so tired of having my blood drawn, and having yet another vein blown. After a few calming statements by the nurse and the last tube of blood filled, my mom held onto me as we walked out of the doctor’s office and back into the car.

I had calmed my tears and held onto the gauze wrapped around my arm. I looked over at Mom as she drove us home.

“You OK Mama? You look almost as pale as me!” I half-heartedly joked to make light of the situation.

She looked straight ahead towards the road and replied, “I just don’t know what to do when I can’t protect you.”

“It’s OK Mama, it is just the way it is. Next time, we will know what to ask for so they don’t blow another vein — hopefully.” I said in return.

When we arrived home, Mom held me close for a few moments, “It will get better. We will find some answers, and you will be healthy again.” She said optimistically.

“Perhaps you’re right Mama, perhaps you’re right.” I said.

I walked over to the bathroom to hop in the shower, but still needed help undressing. I called out to Mom for help, and she came rushing in.

As my shirt reached over my head, I could sense her reaction to the bruises covering my chest. My body was only a week out from having breast-tumor surgery, and my chest was a calico design of black, blue and yellow formations.

“Oh Bethany dear, does that hurt?” She asked with pain in her voice.

I sheepishly looked back at her, desperately wanting to lie about my pain. I could see the pain in her eyes at the way the bruises covered my body. My hand and arm displayed a vibrancy of purple from veins being blown, and my chest was decorated in the warrior marks from surgery.

In that moment, I realized I share many things with my mom, but pain always seemed to be something I wanted to hide. I wanted to be tough like her, to be resilient in the face of adversity. As much as she wanted to protect me from my pain, I wanted to protect her from it, too.

“It will get better,” Mom said with a hopeful understanding.

At times, I’ve wanted to feel hopeless about things. I wanted to curl up in my own depression about the series of ailments that led me to far too many blood tests and eventual fibroadenoma tumor surgery. For me, the tumor was benign, but I know others have not experienced as positive a review from their tests.

Without the love of my mother, my recovery experience may have looked very different. She would come home during her lunch break at work to check up on me, switch out icepacks and hand me another glass of chocolate milk. She did not let me feel hopeless, because she believed in a better tomorrow.

In a series of health problems that has traced my every step, my mom has never given up on me. She has attentively listened to my frustrations and has offered nothing but encouragement and a shoulder to lean on. She knows that words are not always the answer to feeling better, but is the simple act of being there every step of the way that makes a difference.

Without my mom, I would not have the ability to talk about my health problems, nor would I have someone advocating for me in the wake of this storm. Yet, I have a mother who has protected me in every way she possibly can my entire life. My mom has taught me to shift my perspective towards my health problems and to always look to the future with hope.

I will never adequately convey my gratitude towards my mom in how she has shaped my understanding of what healthy can look like for me, but I can express my experience and my hope in my story because of her.

Without my mom, there would be no me, and without her hope, I would not have hope. To every mom with a sick child, the best one can give is hope. For every sick child knows what staring at hopelessness looks like, and we could not possibly see a better future without a loving parent or friend who advocates for us every step of the way.

As the bruises began to heal, I could feel my body regaining the strength Mom promised would come. Through the balance of physical therapy and rest, I could move forward with hope, because Mama instilled in me a sense of hope I carry with me into every tomorrow.

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Why I Hesitated to Post My Daughter's School Awards Picture

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With the end of the school year in full effect, my Facebook newsfeed is full of images — field trips, field days, award ceremonies and sunny smiles. In years past, my own timeline was dotted with similar images. However, this year, when my daughter returned home with certificates and medals galore, I struggled internally. Should I or shouldn’t I post a picture of her surrounded by all her awards?

Like most parents, I’m proud of my kid’s accomplishments no matter how big or small. But I couldn’t shake my uneasiness about sharing her picture. What about the kids who don’t get an award but are just as deserving? What about their parents? How does it feel to see picture after picture of kids with awards that your kiddo doesn’t have? As a mom of a child with a disability, how will I feel in a few years if I don’t have a picture to share of my child adorned in medals and certificates? And what about other notable accomplishments that ceremonies such as these often tend to overlook?

Sure, I love straight A’s just as much as the next parent, but I love seeing my child stand up for what she believes in more — especially when she is standing alone. The Distinguished Writer Award she earned will find a permanent spot on her bedroom shelf, but I hope what stays with her more is how empowering and good it felt when she made sure everyone was included at recess this year. And her Perfect Attendance plaque — though hard earned — is no more valuable to me than when her younger sister finally mastered walking in her SMOs.

While I’m proud of my kiddo for all the certificates and medals she has earned, I am more proud of the person she is becoming. A person who values kindness over anything else. A young lady who has the confidence to sing in front of the whole class, and after having won the singing contest every year, can graciously accept defeat. A student who finds math challenging but who refuses to give up. An “idea” kinda gal, who writes newspaper articles for a school paper she hopes will come to fruition. A big sister who excitedly cheers on her younger sister — through therapy sessions and with each inchstone gained. An individual who is more than I could ever hope to be.

I did post her picture. And parents, if your kiddo received awards for this school year and you want to post those pictures, do it, and be proud. I know I will be cheering for them. And if your kiddo didn’t receive an award this year, please know that self-confidence, courage, creativity, kindness, empathy, determination, and integrity (to name a few) are more valuable than any piece of paper or a bronze medal could be.

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Thinkstock image by Big Cheese

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To Jim and Jeannie Gaffigan, From the Mom of a Tube-Fed Toddler

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Dear Jim and Jeannie Gaffigan,

I need to thank you. For years you have brought laughter to our home as you cleverly emphasize the humor in everyday situations. My husband and I, both coming from large families and having two little ones ourselves, have especially enjoyed your routines and television series focusing on parenthood and the funny things kids do. Through your comedy, you’ve relieved some of the stress of normal family life. And last week, when you showed us a peek into your tube-feeding life, you eased the tensions of our not-quite-as-normal family life.

You see, my toddler has been tube-fed for all but the first 29 days of her life, and we have had some unexpected hiccups with her g-tube (pun intended). As a mother, the pressure of counting calories, sterilizing syringes and countless feeding therapies weighs on me at times. But when you posted the video of you tube-feeding Jeannie, you lifted a cloud of loneliness. As I watched you balance the syringe in one hand and push the end with your chin, I realized I’m not the only one fidgeting with finicky syringes. Perhaps I’m not alone in feeling a tinge of glee when I get that special syringe — the one that draws easily and pushes smoothly. And when I have the syringe that doesn’t sit in the port quite right, maybe I’m not the only one who has teetered on that fine line between feeding my child and coating a good majority of my kitchen with pork and pumpkin puree.

So to the Gaffigan family, we raise our syringes to you in sincere gratitude for bringing us smiles in any situation. Please know that your family and Jeannie’s health are in our thoughts and prayers. And when you launch your tube-feeding restaurant, we’ll be sure to stop by to share a beef and broccoli bolus with a coconut water chaser.

With thanks,
A fellow-tube feeding family

This blog was originally published on Little Heart Blossoms.

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I Had a Painful Breastfeeding Condition I Didn't Know Existed

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Tonight I’ve decided to sit down and write about an uncomfortable experience. Breastfeeding. I know… I sound awful, right? How can I be a mom knowing good and well that “breast is best” and be uncomfortable by the process? This is how. It is called D-MER. Dysphoric milk ejection reflex

With both of my children, I struggled with this awful condition. Nearly five years ago when I found out I was pregnant with my son, I knew I would breastfeed. I knew nothing about it, but knew I would do it because it was “supposed” to be the best thing for my baby. At 41 weeks, my sweet boy was born and took quite well to the breast. I felt so happy and accomplished that we both knew exactly what to do. It felt so natural. It also felt… terrible. I was a new mother, so I didn’t know what to expect. I just know that before my milk “let down,” I felt inconsolable sadness. I felt such debilitating depression. It came and went in less than a minute, but the feeling was so intense. It lingered with me because the sadness felt physical. The depression physically hurt. I’d never been so overcome with intense grief and emotion that I felt like I would vomit.   Yet, every time the milk came down… there was the feeling again. I didn’t say anything at first because I thought maybe I was just adjusting. I didn’t want to admit I hated the feeling. No one had ever told me this happens… so everyone must be able to deal with it. Admitting it would have made me a bad mother. I told myself all of those things.

Finally, I mentioned it briefly to the lactation consultant at my hospital. She thought it was interesting but didn’t have any idea what was going on. She kind of blew it off and said, “Well, if you know it passes you can just tell yourself that and get through the moment.” This was true, but it was still upsetting. I began to dread breastfeeding.

I shared my story with fellow moms, and no one knew what I was talking about. This apparently did not happen to all of my friends. This hadn’t happened to my mother. I was depressed but determined to figure out what was going on. I Googled frantically and finally stumbled upon some information about D-MER. It was exactly what was happening to me! Finally! I had some answers! Just seeing that there were others out there with this same condition comforted me immensely. Unfortunately, there is still not much known about this condition.

I made it six months breastfeeding my son. I had some postpartum issues in addition to the D-MER that stood in the way of breastfeeding for me. My son also seemed to nurse constantly. Stopping breastfeeding was a very sad decision to make and I had several moments of feeling like a failure, but ultimately it felt like the best decision at the time.

Last year I had my second child. An 8-pound, 10-ounce baby girl. She also took to the breast extremely well and I felt that joy and accomplishment again. Unfortunately, like last time, the D-MER was back. My daughter nursed around the clock and the let down of my milk was so intense. I experienced awful postpartum anxiety/OCD after the birth of my daughter, which seemed to make the intense emotions with breastfeeding much worse.

A few weeks postpartum I got a minor infection and had to go on medication. I had to stop breastfeeding for 10 days or so. I tried to keep up with pumping, but with a 2.5-year-old and a newborn… it was all too much. I was overwhelmed with day-to-day life, and D-MER didn’t make things any easier. I made it a few months and then switched to formula at the suggestion of several doctors. It is not the decision everyone would have made or the decision I thought I would choose, but it was the best decision at the time for myself and our family.

Breastfeeding is a huge topic in the new mommy world. There is almost a shame attached to not breastfeeding. Because of this, mothers with any sort of issue feel guilty, embarrassed, less than, ashamed. I can’t honestly put into words the hurt I felt/feel knowing both of my children were excellent eaters that took extremely well to the breast and I was the reason they weren’t breastfed for an extended period. I can’t go back to that place. It was something that contributed to my extreme postpartum depression. The guilt was unprecedented. But because of this, I ask the mom community to come together for other moms, all moms. You never know another person’s story. You may not even know conditions like D-MER exist. Your experience is your own. What a new mommy needs most is love.

I’ve linked to a few articles about dysphoric milk ejection reflex in this post, and I encourage new mothers (or anyone) to check them out. More research is needed for this condition as well as knowledge and support. If you think you may have D-MER, please see your doctor, and for now take comfort in the fact that I know what you’re going through, as well as many other moms. It is tough, but you will get through it.

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Thinkstock photo by lolo stock

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