My Son’s Day At The O.R.

By Robin Towle-Fecso

It is hard to deal with the words “your son isn’t thriving” as a mom. The pediatrician said this after she glanced at Nathanael’s growth chart during a wellness visit, years ago. The growth chart and I, at this point, hadn’t been really getting along. Every time the doctor’s clipboard came out (I swear sometimes it would just magically float in the room) my eyes would go up to the heavens and I would say a little prayer for a positive reading. But it never came. Then, during one visit, the pediatrician said something I had never heard before, something that was a little hard to wrap my mommy brain around. “We should get him checked out at the hospital.” I blinked several times trying to process the sentence; my ten-month-old baby has to go to the hospital?

As a child, I was diagnosed with epilepsy. I remembered the many countless hours of going to a children’s hospital for testing and treatment. Even though it had “children’s hospital” in its name, I can still recall the stark white walls, the drab rooms and atmosphere, and the hospital’s inability to help me cope with being there in the first place. Would my son now go through the same experience I had?

After two years of an elimination diet and several endoscopies, we found the cause of his stunted growth was mainly due to gluten. Immediately after we pinpointed the allergy source, Nathanael’s growth started to hit positive results (take that, growth chart!). After a year of positive height to weight readings, the doctor wanted to see if my son still needed his medication to eradicate the disease. Sadly, we recently found out diet alone can’t fix Nathanael’s esophagitis, but the GI doctor did recognize the possibility of another culprit. Last Wednesday, we had another procedure scheduled at the Connecticut Children’s Medical Center. Even though we have traveled down this path many times before, my mama worry couldn’t help but surface the night before we were due to go into the hospital. I normally walk into CT Children’s as a ball full of nerves, but I walk out relieved that my son has an amazing children’s hospital just a half an hour away from our home.

To show you what I mean, I want to take you through this recent CT Children’s visit…

Wednesday morning, November 12th, 8:30 am:

We arrived at the hospital to check in for the procedure. The Connecticut Children’s Medical Center’s cheery disposition of colorful rooms and children’s art everywhere (very different from what I remembered in the children’s hospital I had gone to as a kid) gave me a little more comfort as we waited to be processed.

Of course, my son’s comfort came in the form of Mickey Mouse Clubhouse, which was being shown on TV as we waited.
Robin Blog_1
The Registration staff member placed Nathanael’s bracelets on is arm as she mentioned she really liked the color choice of the cast on my son’s other arm. He thanked the friendly lady and away we went to the Surgery Prep room.

Robin Blog_2

9:30 am:

Nathanael is dressed in his kid scrubs and got a personal visit (and tickle session) from his Pediatric Gastroenteritis and Surgeon, Dr. Bella Zeisler.

Robin Blog_3

We have now known Dr. Zeisler for four years. We don’t just talk about esophageal levels and allergy updates, we also chat about our kids sleeping patterns and bribing techniques to get our children to eat their peas. We couldn’t ask for better doctors to care for these kids!

10:30 am:

My son then got a talk from a Child Life Specialist to help prep him further for the procedure. I brought up this “hospital teacher” in my last guest CT Children’s spot via my Runitlikeamom blog post about Nathanael’s broken arm.  During that visit we learned it’s the role of the Child Life Specialist to help the child patient better grasp what to expect during their hospital visit. Last time, it was Jennifer Sweitzer giving Nathanael a lesson about the IV line. This time, Coleen Brown was the Child Life Specialist for the O.R. unit talking to Nathanael about the endoscopy.

Robin Blog_4

Coleen showed my son his gas mask and tasked him with picking out a lip balm flavor to apply on his mask (mmm, smells like oranges!).

Robin Blog_5

She then explained to Nathanael about the different medical devises that would be found on him when he woke up in Recovery and the medical staff (including Dr. Zeisler) he will see in the O.R. These people really do an amazing job making seemingly scary things much more understandable.

Robin Blog_6

Lastly, (and my son’s favorite) was the picture of Connecticut Children’s very own super-fun kid vehicle lot! Nathanael picked out his ride (along with a solid high-five from Coleen) that he would drive into the O.R.

Robin Blog_7

My son chose the police motorcycle (which lives up to his reputation as Flash Gordon) and proudly revved it down the hall to his procedure. See you soon, buddy!

11:15 am:

My husband and I were sitting in the family waiting room when my mama worry came to visit me one last time. I quickly took out my phone and read the comments my Runitlikeamom sisters were sending to help get me through the day. All of their words of encouragement and virtual hand holding really helped me settle down and gave me the reassurance I needed to know that Nathanael would be taken care of at CT Children’s and thought of, back home. It also helped speed up the wait time and before I knew it, Nathanael was in Recovery…

If you have a child going through this same process, please know that you are not alone. I hope this post and the Ct Children’s blog, give you peace of mind that the collection of top-notch medical staff along with the support from your friends and loved ones will help you get through the procedures your children have to face. For me, being a part of supportive communities, like CT Children’s and Runitlikeamom (check them out at www.runitlikeamom.com), has made a huge difference. These resources have helped me balance a healthy lifestyle for myself, my son, and my family; the essential ingredients to an amazing life!

 

About Robin Towle-Fecso

A small business owner to a design and branding company, Jumpstart: Design, Development & Brand, a Runitlikeamom blogger, soccer coach and a mom to a little boy superhero!

 

Ask a Nutritionist: Feeding a Healthy Infant

baby bottle

By Claire Dalidowitz, Clinical Nutrition Manager at Connecticut Children’s

As a parent, there is nothing more important than the health of your little one. After all, a healthy diet is the cornerstone for a healthy child. But what foods should you be feeding (or not feeding) your infant to ensure he or she grows up be big and strong?

With so much misguided information out there, it can be extremely overwhelming to decipher between fact and fiction. Check out these rules of thumb when it comes to feeding your infant a healthy diet.

What to Feed Your Infant:

– During the first three months, breast milk will provide all the nutrition your infant needs. However, you may continue breast feeding until the infant is about 6 months of age. Breast feeding moms can supplement their diet with vitamin D in addition to consuming more fish or taking a DHA supplement.

– You can begin introducing THIN purees at 6 months. Purees of pure chicken, meat and baby cereal have great amounts of zinc and iron, which are very important for your infant’s diet.

– Once your infant has become comfortable with thin purees, you may begin to GRADUALLY thicken them by adding pureed vegetables and fruits.

– Your baby may begin to eat lumpy food once he or she has taken to thicker purees. And yes, allow touching!! Infants touch before they put anything in their mouths, so let them do so.

– Soft foods such as salmon, small pastas, scrambled eggs and cooked squash may be introduced next.

– By one year, your little one can eat most table food except those food items that pose choking risks such as popcorn, grapes, hot dogs and nuts.

– Try not to offer unprocessed foods without food dyes or additives. Natural foods, especially fruits and vegetables are not only nutritious, but colorful and captivating. Your little one will be just as interest, if not more so.

 

What NOT to Feed Your Infant

– Never add cereal or other food to a bottle as this can pose a choking hazard!

– Do not force food. Allow your baby to use his or her inborn cues of hunger and satiety.

– Never let your baby eat alone. Make it a social gathering or moment for bonding. When parents eat with a child, the child is more likely to eat the family foods.

– Don’t give up! If your child has tried a food one and does not like it, wait to introduce it again. Research suggests that 15 tries are necessary to combat neopyhobia (fear of the new).

– Don’t use food as a reward. “Eat your peas and I will give you a candy” gives preference to candy, not peas. By doing this, you are instilling bad habits that can branch off into adulthood. “Had a bad day? Have some candy to get you through it.”

 

Got more questions about infant feeding? Submit your question below and stay tuned for more blog posts from Connecticut Children’s Ask a Nutritionist!

Support for Connecticut Children’s from Across the Globe!

by: Denise Scott, Jillian’s mom

They’ve traveled all the way to South Africa but still remember the needs at home here in Connecticut. To show their support of Dancer’s Week for Huskython from Cape Town, South Africa, UCONN’s Senior Nursing students listed above took this picture earlier in the week. They all will participate in Huskython in March 2015 which directly benefits CT Children’s!

nursing students south africa

Front Row: Nicole Jubelirer, Nicole Hopper and Lauren McKulla  Back Row: Katrina Zawasky, Jillian Scott, Paige Wlochowski, Gabby Aguila and Staci Godbout

“We dance so that one day kids can see a view like this —>”

 

This year sixteen Senior UCONN Nursing students are studying abroad in Cape Town, South Africa for their fall semester. They are attending classes two days a week at University of Cape Town with a UCONN professor and also have three days a week of clinical rotations in which they will complete their Maternity and Pediatric rotations. They will return to Connecticut in December.

The funds raised at Huskython 2014 benefited the CT Children’s Cardiac Wing. These guys are already looking forward to getting their dancing shoes on again in support of CT Children’s & Huskython 2015 in March!

 

LOOKING AT THE BRIGHT SIDE: MY DIABETES DIAGNOSIS

matt_diabetes_photo

By Matt Plona, patient at Connecticut Children’s

It’s Diabetes Awareness Month, so you have to be aware of me. I’m Matt Plona. I’ve been a diabetic for two years now, since I was twelve.  The first day I was diagnosed it was horrific. I remember feeling really drowsy and tired that day, falling asleep in my chorus class. For a seventh grader, that was pretty strange.  I knew I was being dismissed early for a doctor’s appointment. I had been peeing a lot, peeing the bed, drinking a lot of water and overall just had a lot of the signs of diabetes, which my parents even said could be a possibility. I didn’t really think it was, but apparently I was wrong. So anyway, I went to the doctor’s office. The plan was to have a quick checkup and get back to school, but it didn’t end up that way. I think my mom knew I wasn’t going back though. Long story short, they took a urine sample and found sugar in it. I remember when the doctor came in and told me they found sugar, and told me they thought I had diabetes.

At that point I really only knew about the name “diabetes”, but not how people got it or anything like that. The year before that there was a diabetic girl I knew, and I thought it was so strange because she was skinny, and every other kid said you get diabetes when you are overweight, but that is just not the case. So here I am, a kid who has made fun of diabetes all my life, sitting in a doctor’s office with a fresh diagnosis of type 1 diabetes.  It was horrific. My mom and I were crying trying to make sense of it all, so the doctor left for about ten minutes so we could be alone. When she came back, I managed to squeak out the words, “Will I still be able to eat hamburgers?”

That’s when Connecticut Children’s Medical Center came in. I’ve visited about 4 or 5 different hospitals, but Connecticut Children’s is probably the most welcoming.  When I showed up, my dad was there and my sister was at school. We were all shaken up. When we got to the hospital, all I could think of was whether I would have dietary limitations, problems with bullies or even a shortened life. (I hadn’t known too much about diabetes yet, like I said).  They brought me into a waiting room and it only took about 10 minutes before I was called by a nurse. He took my blood sugar and it was almost 400.  He went away and came back a few minutes later. It was then I met with with a doctor. I can’t quite remember her name, but she went over all the new things that were going to be a part of my life. I learned how to use my blood glucose meter, give myself shots, count carbs and all the necessities. I was laying down because it had been a long day. At this point, it was around 7 or 8 o’ clock. It was dark outside and things were wrapping up.

So much happened in that day that I can’t possibly tell you all the details.  That was the day I first met my doctor, Dr. Demerci.  So we went home, and we already knew that I was going to miss school. That was the first night I used Lantus, an insulin given to me by my doctor. I remember how much it hurt and stung at first. It took a good 3 minutes before I was able to get the grimace off my face. To wrap up the first day, it was painful and confusing. But, things did start to get better after that.

I’ve always tried to be an optimistic person and try to find the good in situations. I was hit pretty hard after the diagnosis and my parents were trying to help me feel better. Not too much was working. The only thing that could fix things was a little bit of time.  But like I said, things got better and I started to look at the bright side of things again. I had a lot of support from my parents, my doctor, my school counselor, my school nurse, and people that I knew living with either kind of diabetes. It took a while, but it finally made sense to me that other people were in worse situations than me, and I had to get over myself. So my new plan was to take care of myself and take what life gives me.

So far diabetes hasn’t been too bad. Yes, a lot of the time I get frustrated that I can’t just eat things whenever I want to like everyone else and yes, I get frustrated when people make fun of diabetes. However, these people haven’t rode in a lamborghini at the Connecticut Children’s Ferrari Concorso like I have.  Because of my diabetes, I’ve been able to participate in two Ferrari Concorso events, and both times it has been so much fun. I’ve also found other people who have diabetes that I can talk to. I have a lot of diabetics that I look up to. It’s such a great feeling to connect with people with similar situations to yourself, who understand that you aren’t an alien and that you won’t be bullied because of your disease.

To all of the kids that have recently been diagnosed, don’t be sad for too long because things can only get better. Seek out forums and blogs online to connect with people. Don’t be afraid to tell people you’re offended by a joke they make about diabetes. Don’t think you are in the worst situation in the world, because I promise you that you aren’t. Take what life gives you. Live your life normally, but take care of yourself and do what your doctor tells you.

If you do that, you will live a fun and normal life.